assisted living platform - the long term care revolution · our vision is based on radical...

Assisted Living Platform - The Long Term Care Revolution

This report outlines the case for a revolution in long term care and captures some of the supporting material that has aided the development of the Technology Strategy Board’s ‘long term care revolution’ programme. It includes evidence about the views of older people and their carers in the UK, lessons from abroad, the implications for industry/providers and makes recommendations to government and industry leaders.

Written by Anthea Tinker, Leonie Kellaher, Jay Ginn and Eloi Ribe at the Institute of Gerontology, Department of Social Science, Health and Medicine, King’s College London for the Technology Strategy Board

Reproduced here by the Housing Learning and Improvement Network

Report

© Housing Learning & Improvement Network www.housinglin.org.uk

September 2013

© Housing Learning & Improvement Network – www.housinglin.org.uk

Table of Contents

Executive Summary: Assisted Living Innovation Platform - The Long Term Care Revolution . . . . . . . . . . . . . . . . . . . . . . . . . . . . . i

1. Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

2. The vision is for alternatives to institutional care . . . . . . . . . . . . . . . 1

3. The aim of the research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2

4. Issues to be considered. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2

a. Demographic concerns and the scale and nature of likely demand . . . . . . 2

b. Increased prevalence of long term conditions . . . . . . . . . . . . . . . . . . 3

c. More older people in employment . . . . . . . . . . . . . . . . . . . . . . . . 3

d. Rising expectations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

e. Informal carers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

f. Numbers in institutions and costs . . . . . . . . . . . . . . . . . . . . . . . . 4

g. Poor care in institutions and at home . . . . . . . . . . . . . . . . . . . . . . 4

h. Financial constraints . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

i. Complexity of funding . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

5. Why 2012, 2020 and 2050? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

6. Summarising long term care problems and reforms to address them . . . 6

a. General . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

b. The UK . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

c. Outside the UK . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

7. Placing the older person at the heart of any solution – a person centred approach . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

a. General . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

b. Personalisation and individual budgets . . . . . . . . . . . . . . . . . . . . 12

i. General . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12

ii. Typesoffinancialsupport . . . . . . . . . . . . . . . . . . . . . . . . . . . 12

8. Practical examples of long-term care at home – the vignettes . . . . . . . 14

9. Living environments for the future: alternatives to institutions . . . . . . 17

a. Criteria for the built environment . . . . . . . . . . . . . . . . . . . . . . . . 17

b. Criteria for the social environment . . . . . . . . . . . . . . . . . . . . . . . 17

c. The importance of housing and issues of tenure . . . . . . . . . . . . . . . 18

d. Staying in own home . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19

i. General . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19


ii. Home sharing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19

iii. Homemodifications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20

e. Who moves and why . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22

f. Moving to a specially designed home . . . . . . . . . . . . . . . . . . . . . 23

g. Moving to specialist grouped housing – sheltered and very sheltered/extra care housing . . . . . . . . . . . . . . . . . . . . . . . 23

h. Retirement villages . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25

i. Other options . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27

i. Sharing a home with a family . . . . . . . . . . . . . . . . . . . . . . . . . 27

ii. Adultplacements/sharedlives . . . . . . . . . . . . . . . . . . . . . . . . . 27

iii. Cohousing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28

j. Some radical alternatives to institutions and staying at home such as hotels, cruise ships . . . . . . . . . . . . . . . . . . . . . . . 30

10. Key factors for revolutionalising long term care for older people . . . . 31

a. Good design of homes and towns . . . . . . . . . . . . . . . . . . . . . . . 31

b. Changing patterns of informal and formal care . . . . . . . . . . . . . . . . 31

c. New products including the role of technology . . . . . . . . . . . . . . . . 32

i. General . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32

ii. Telemedicine . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32

iii. Telecareincludingalarms . . . . . . . . . . . . . . . . . . . . . . . . . . . 34

iv. Computersandinformationcommunicationstechnology . . . . . . . . . . . 36

v. Smart homes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37

d. Services working together . . . . . . . . . . . . . . . . . . . . . . . . . . . 40

11. The special cases of people with dementia, other forms of cognitive impairment and those who are dying . . . . . . . . . . . . . . . . . . . . . . 41

a. Cognitive decline and dementia . . . . . . . . . . . . . . . . . . . . . . . . 41

b. People who are dying . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42

12. Legal and ethical issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43

a. Legal issues including human rights . . . . . . . . . . . . . . . . . . . . . . 43

b. Ethical issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43

13. What can be done? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44

a. Changing public attitudes . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44

b. Drawing on the strengths of older people themselves . . . . . . . . . . . . 44

c. Changing policies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45

i. Looking for leaders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45


ii. Agediscrimination . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45

iii. Improving health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45

iv. Ahigherprofileforhousing . . . . . . . . . . . . . . . . . . . . . . . . . . 46

d. Encouraging new providers . . . . . . . . . . . . . . . . . . . . . . . . . . 46

e. Changing practice including new ways of doing things . . . . . . . . . . . 46

f. Staff - changing attitudes and training . . . . . . . . . . . . . . . . . . . . . 47

g. Paying for services and products . . . . . . . . . . . . . . . . . . . . . . . . 47

h. Giving more information . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48

i. Measuring outcomes and the need for more research . . . . . . . . . . . . 48

j. Using institutional care more creatively for non residents . . . . . . . . . . 49

k. The role of industry . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49

14. Changing institutional care . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49

15. Next steps including the need for more research . . . . . . . . . . . . . . 50

16. Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52

Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63

Note . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63

About the Institute of Gerontology, Department of Social Science, Health and Medicine, King’s College London . . . . . . . . . . . . . . . . . . . . 63

About the Housing LIN . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 64

Published by . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 64

© Housing Learning & Improvement Network – www.housinglin.org.uk i

Executive Summary: Assisted Living Innovation Platform - The Long Term Care Revolution

AimTheaimofthisresearchistooutlinethecaseforarevolutioninlongtermcarealltobesetinatimescaleof2012,2020and2050.ThisincludesevidenceabouttheviewsofolderpeopleandtheircarersintheUK,lessonsfromabroadandtheimplicationsforindustry/providers.

MethodologyWeareamultidisciplinaryteamwithexpertiseinbothquantitativeandqualitativemethods.Weundertookdesk-basedresearchofreportsandpeerreviewedarticlesfromtheUKandelsewhere(mainlyEurope).Findingsarebasedonevaluatedinitiativesalthoughwementionother promising developments.

Our philosophyOurvisionisbasedonradicalalternativestotraditionallongtermcareprovisionaswellasrevisitingmore conventional ones. It reverses the current view that,with increasing frailty,olderpeoplearelessabletocareforthemselvesandneedtobecometheobjectsofcare.Ourpremiseisthatanyfuturemodelmustpromoteindependenceandplacetheolderpersoncentrallyastheirowndesignerofcare.Independencedoesnotruleoutbeingdependentonothers,onequipmentandontechnologyforsome–perhapsmany–aspectsofdailyliving.Whatmattersisthatthemanagementofhelpisexecutedbythosewhoacknowledgethattheolderpersonchoosesasolutionthatsuitsthem.TheinitiativesundertheTechnologyStrategyBoardinitiative‘IndependenceMatters’canhelp,ascanthechoiceofapersonalbudgetanddirectpayments.

Important issues to be consideredThefindingsaresetinthecontextofdemographicconcernsabouttheriseinnumbersofold,especiallyveryold,people,increasedprevalenceoflongtermconditions,moreolderpeopleinemployment(whichcanhavebothnegativeandpositiveeffects),risingexpectations,theroleofinformalcarers,numbersininstitutionsandcosts,poorcarebothininstitutionsandathome,financialconstraintsandthecomplexityoffunding.

The findings and key pointsWe identify practical evaluated examples of care provision (best practice, innovative anddisruptivefromtheUKandelsewhere-mainlyEurope).Ourresearchexaminestheextenttowhichexamplesenabletheolderpersontobeattheheartofanydecisionsontheircare-aperson-centredapproach.Wegivepracticalexamplesoflongtermcareathomebyexaminingpossiblescenariosforpeopleonthemarginsofinstitutionalcare.HerewebuildonpreviousresearchdonefortheRoyalCommissiononLongTermCarein1999andupdatethis.Inourupdatedsixvignettesdescribing levelsofdisabilityandcareneeds,we lookatwhat thesepeoplewouldneedtoremainathome.Formany,helpwithtaskssuchaspersonalcareareneededfor52weeksayear,buttechnologycanplayarole.

© Housing Learning & Improvement Network – www.housinglin.org.uk ii

Theimportanceofhomeandthekeyroleofhousing.Manyhealthconditionsarerelatedtopoorhousingandthehousing/healthlinkbecomesmoreimportantwithageaspeoplebecomemorepronetofallsandsusceptibletocoldordamp.Appropriatehousingisshowntohaveapreventiverole.Thegrowingpercentageofolderpeoplewhoareowneroccupiersmayleadtothembeingunabletoundertakerepairsandrenovationsinthefuture.Forthoseabletoremainin their own home we underline the key role of homemodifications.

Arrangementsforolderpeopletoshareahomearepromising,especiallycohousing,and we givedetailedfindingsaboutthismainlyfromEurope.Otherschemessuchasanolderpersonliving with an unrelated family known as AdultPlacementschemes have the potential for the olderpersonstayinginahomelyenvironment.Moreresearchonboththepracticalitiesandtheadvantagesanddisadvantagesoftheseschemesisneeded.

Forolderpeoplewhohavetomove,researchshowsthevalueofextracarehousingwhich enablesolderpeopletohavetheirownfrontdoorbutalsohelponhand.ExtensiveresearchonthisintheUKshowsthevalueofthis,includingforpeoplewithdementia.

On technology, the findings show great potential butwe caution about the hype attachedtosome.Simplegadgetsand thegreateruseofmobilephones,computersand televisionwouldenhancepeople’slivesandshouldbepromotedmorewidely.Lookingahead,thenextgenerationwillbenefitfromgreateruseofthisandmoresophisticatedtechnology.Wealsocautionabouttheethicalissuesoftechniquesforsurveillancesuchashiddenmonitors.

Recommendations: in general• Moreattentiontoputtingtheolderpersonattheheartofanydecisionsabouttheirfuture;

• Moreemphasisonthekeyroleofhousingandspecificallyexpansionofextra-carehousing;

• Greaterinvestmentinhomemodifications;

• Greater attention to the status, pay, training and attitudes of staff and links betweenindividualsandproviders;

• Expansionoftechnologyproducts,especiallyinexpensive(oftenlowtech)onessuchaskitchendevices,mobilephonesetc;

• Moreusemadeofcarehomesforpeopleinthecommunitytouse;

• MorehomestobedesignedtoLifetimestandardsandage-sympatheticdesignoftowns;

• Acknowledgementofboththecontributionsandlimitationsofinformalcare;

• Changingpublicattitudes,whichmayincludeanacknowledgmentthatmoreresourcesareneeded,moreuseoftheprivatesectorandmeasurestochallengeagediscrimination;

• Greaterinformationonoptionsbothforremainingathomebutalsoformoving.

Recommendations: for the Technology Strategy Board and Industry• AstrongcasebeputtotheTreasuryandtheTechnologyStrategyBoardtoinvestinmore

services,productsandresearchonthegroundsthatthiswillsavemoneyonexpensivecarebutalsothatitwillbringgrowthinnewmarketsorexpandexistingones;

• Specificallyforindustry,theproductionofashortsummaryofthepotentialforinvestmentine.g.Lifetimehomes,extracarehousing,co-housingprojects,newtechnologiesandthemarketingofexistingones.SomeoftheUKschemescouldbeshowcased.

© Housing Learning & Improvement Network – www.housinglin.org.uk iii

There is need for more research in certain areas including:• Dementia;

• Promisinginitiativesthathavenotbeenevaluated,includingoutcomes;

• Designinghomeswhereolderpeoplelivewiththeirfamiliesinseparateparts;

• Disabilitytrajectoriesofolderpeopleandhowbesttomanagechangesincareneeds;

• Monitoringtheproportionofdisabledpeoplewhosecareneedsarenotmet;

• Manyaspectsoftechnologyincludinghowtoinvolveolderpeople,fromthedesigntothemarketingandwhyolderpeopledonotusetechnology;

• Casestudiesofcountrieswhichseemtoofferpromisinginitiatives.

© Housing Learning & Improvement Network – www.housinglin.org.uk 1

Assisted Living Innovation Platform – The Long Term Care Revolution

1. BackgroundArevolution‘Agreatandfarreachingchange’(PocketOxfordEnglishDictionary,2005,p.777).TheInstituteofGerontology(IOG),King’sCollegeLondonwascommissionedinAugust2012toresearchanewvisionwhichwouldrevolutioniselongtermcare(LTC)forolderpeople.Basedontheirownextensiveresearch,andthatofothers,theyarecommittedtotheunderlyingviewthatthecurrentmodelisunfitforpurpose,undignifiedandunsustainable.

ThecaseisputthatwillallowtheTechnologyStrategyBoardtoinvestinafutureprogrammeofresearchandtopersuadetheTreasuryofitsimportance.Partofthiswillbethecaseforchangingpublicattitudestoallowgreaterinvestmentbut,moreimportantly,indifferentwaysthatbetterreflecttheviewsanddesiresofbothyoungerandoldergenerations.Thismaymeannewproviders,newwaysofdoingthings,morepersoncentredservices,innovativesolutions(includingtheuseoftechnology),newdesign,newproducts,differentstaffandtrainingandachangeinpublicattitudes.Itisinterestingthattheterminologyofsocialcareisalsobeginningtochange.Forexample,theDirectorofCareServicesoftheJosephRowntreeFoundationstatedon23.11.12‘StateofcareinBritain–weneedarevolution’(Kennedy,2012).

Sincethepresentbasisforprovisionofcareforolderpeopleisfoundedonthepremisethat,withincreasingfrailty,olderpeoplearelessandlessabletocareforthemselvesandneedtobecometheobjectsofcarebyothers,anynewargumenthastofindwaysofreversingthisideology.One reversalwouldbe tosay thatany futuremodelmustplace theolderpersoncentrallyasthedesignerof theirowncare.Thishasbeendeclaimedalreadybuthasbeeninterpretedascarersdoingtheirbesttorespecttheolderpersonratherthanfollowingdirectorimpliedrequests.Therewillbemanywhowillsaythatthisisfanciful,butbecomingtheobjectofcare,whether inahomeorwithhomecare, iswhatolderpeopledread.Evenvery frailpeoplecanremaininchargeofsignificantaspectsoftheirdomesticlivesifcarers,bothformalandinformal,canbepersuadedandthenencouraged,torelinquishcontrollingcarepatterns.Independencedoesnotruleoutbeingdependentonothers,onequipment,ontechnologyforsome–perhapsmany–aspectsofdailyliving.Whatmattersisthatthemanagementofhelpisexecutedbythosewhoacknowledgethattheolderpersoninitiatesanyrequestorinstruction.

Weidentifypracticalevaluatedexemplarsofprovision(bestpractice,innovativeanddisruptive)fromtheUKandelsewhere(mainlyEurope).

2. The vision is for alternatives to institutional careTheshortcomingsofinstitutionalcarehavebeendocumentedanddeploredsincetheearly20thcentury,withtheneedforreformgivennewurgencybyTownsend’s(1962)seminalstudyofresidentialcarehomesforolderpeople.Deficienciesthathavebeenslowtochangeincludelackofprivacyandpersonalspace,whilethepossibilitiesforsocialinteraction,engagementwiththewiderworldandre-ablementtoreturnhomeremainscarce.Moreovertheinsidiouseffect of institutions in stifling individuals’ agency and capacity for self-help remained.AsPeaceetal.(1997,p.40)noted,forolderpeople‘theinstitutionaloptioncastsashadowofdeepanxietyanduncertaintyinlaterlife,astheyfearitsimminence’.Successivegovernmentssincethe1960shaveattemptedtoreformresidentialcarebyincrementalmeasuresandmoreradically since 1990 by shiftingmore care into the community.The aimhas been both toimprovethequalityoflifefordisabledpeopleandtoreducethemountingcostofmaintaining


residentialinstitutions.Thereforeakeycriterioninassessinginnovativewaysofprovidingcareinthecommunityiswhethertheschemepromoteshealthandindependenceand/ordelayingoravoidingentrytoinstitutionalcare.PolicystatementshaveendorsedtheneedfordignityandahighqualityoflifetobemaintainedthroughthedeliveryofLTC,althoughtheresourceshavenotalwaysbeensufficient.Reformeffortshavebeenpartiallysuccessful,especiallyinthecaseofyoungerpeoplemovedinto,orremainingin,thecommunity.Yetby2000some300,000olderpeople(about4%ofthoseagedover65)stilllivedinresidentialcarehomesandabout200,000innursinghomes,wherenumberswereincreasingduetoclosureoflong-stayhospitalbeds.Amongcarehomeresidents,abouthalfhadsomecognitiveimpairment,athirdofthesebeingseverelyaffected.Nevertheless,itislikelythatsomeoftoday’scarehomeresidents,andmanyofthosewhomightotherwisebeadmittedinfuture,couldliveinanon-institutionalsettingespeciallyifserviceswerepro-activeratherthanreactive.

ThecaseforrevolutionisingLTCisbasedonunderstandingsofhowolderpeoplewanttolivewhentheycometoneedhelp,sometimesveryhighlevels,witheverydaylife.StudiesofLTCinthepost-wardecadesindicatethatolderpeopleandtheirfamilieswanttomaintaintheirformerlifestyleasfaraspossible,maintainingintooldagethesenseofselfandautonomyforwhicheveryonestrivesacrossthelifecourse.Thisprinciplegeneratescriteriaforassessinghowfarexistingandinnovativeschemesoutlinedinthesubsequentsection9(Living environments for the future),arelikelytobesuccessfulinmaximisingautonomy,controlandcontinuityofselfhood.SomeoftheschemeswehaveexploredareintheUK,otherselsewhereintheEU.Mostofthem,however,stillaccommodateand/orhelpquitesmall–evenelite–groups.

3. The aim of the researchWewereaskedtooutline(includingevidenceabouttheviewsofolderpeopleandtheircarersin theUK, lessons fromabroadand the implications for industry/providers), thecase forarevolutioninlongtermcarealltobesetinthetimescaleof2012,2020,2050.Inmoredetailwewereaskedtobasethisonavisionof2020butalso2050(deskresearchbasedontheUKandmainlyEurope).This included:summarising thecurrentpositionof long termcarenotingtheproblemsandpreviousattemptstochangethesystem,summarisingthechallengesofthepresentsystem,consider livingenvironmentsforthefuturebasedontheprojectionsfor the numbers of people living with dementia, age-related disabilities and/or long termcondition,considersomeradicalalternativestoinstitutionsandbuildasocialcaseforlocalaswellasnationalprovision,communityinvolvementandtheintegrationofinformalcare.Andidentifypractical exemplarsof provision (bestpractice, innovativeanddisruptive) from theUKandelsewhere(mainlyEurope).Ourfindingsarerestrictedtoevaluatedinitiatives,policydocumentsandofficialreports.Wetouchbrieflyonsomepointssoastoallowmoretimeonotherswhicharemoredisruptive.

4. Issues to be consideredWesummarisebelowsomeofthemainissues.

a. Demographic concerns and the scale and nature of likely demand

Thestartingpointforlookingattheissueshastobethedemographicone.The2011censusforEnglandshowsthatthe%ofthepopulationaged65+was16.4%.Thisisthehighestseeninanycensus.Moreimportantthanthegrowthinnumbersofolderpeopleisthatoftheveryold.Thenumbersofthose90+were13,000in1911,340,000in2001and430,000in2011.Formanytheneedforsupportandcaremaybeforanintensiveperiodattheendoftheirlives.


b. Increased prevalence of long term conditions

Alongtermcondition(LTC)hasbeendefinedbytheDepartmentofHealth(DH)inLong Term Conditions Compendium of Information(DH,2012a)as‘aconditionthatcannot,atpresent,becuredbut is controlledbymedicationand/orother treatment/therapies’ (ibid,p.3).Thereportstates thatpeoplewith theseconditionsaccount,amongother things, for50%ofallGPappointments,64%ofall outpatientsappointments,70%ofall inpatientbeddaysandthatthis30%ofthepopulationaccountfor70%ofthespend.Theygoontoshowtheriseintheseconditions.Forexamplebetween2006-07and2010–11thenumbersaffectedbycancerroseby79%,chronickidneydiseasesroseby45%,anddiabetesanddementiaby25%(ibid,p.5).Inadditionhavingalongtermconditionusuallyreducespeople’squalityoflife,particularlythroughhavingchronicpain(ibid,p.13).

c. More older people in employment

Thereisexpectedtobeagrowthinthenumbersofolderpeopleworkingintooldagewhichwill have advantages (such as more spending power) but possible disadvantages (if thejobisstressful).Thisextratimeinworkhastobebalancedbydemandsontheirtimefromelderlyparents,childrenandgrandchildren.Inadditiontheworldofemploymentischangingdramatically.Thegrowthofunemploymentwillhaveaknockoneffectonthenextgenerationof older people.

d. Rising expectations

Rising expectations, especially of the new generation of older people who are now babyboomersarenotnecessarilyaproblembutdopresentchallenges.

e. Informal carers

Although recent researchand reportsadvocateachange in thephilosophyandprovisionofcareforolderadults,familiesarestillanecessaryresourcetoorganiseandprovidecaretofrailoldermembers.Adultcarehasbeen,andstill is,preponderantlyprovidedbyfamilymembers(Victor,1997;Leitner,2003;Fink,2004;Haynesetal.,2010).About6.5million,13%oftheadultpopulation,providecare,40%ofthesecaringforparents/in-lawandaquarterforaspouse.Caringpeaksatage50-59butover12%ofthoseagedover65provideinformalcare.Womenaremorelikelythanmentobecarersinmidlife,whilespousalcareinlaterlifeismoregender-equal.Thisconstitutes the informalcaresystem,a resourceestimatedasworth£119billionperyear,morethanspendingontheNHS.Thegreatcontributionofcarersisoftenacknowledgedbypublicauthorities(PavoliniandRanci,2008)andwe refer to this throughout the report.

Yetcarerscontinuetoreceiveinadequatepracticalorfinancialsupport,leadingtostressthattakesitstollontheirownhealth.Accordingtoarecentbriefing,caringislinkedtodecliningphysicalandmentalhealthofcarers,damagetotheirsocialrelationshipsandisolation(CarersUK,2012).The2millionprovidingover20hoursofcareperweekalsoriskimpoverishmentinmidlife,findingtheycannotjugglepaidemploymentwithcaringandmustreduceworkinghoursor(foroneinfivecarers)giveuptheirjob.Aswomenareincreasinglyengagedintheformallabourmarket inmidlife,many facesubstantial lossofearningsand futurepensionswhentheytakeoninformalcaring.Alternatively,iftheymaintainemploymentuntil(therising)statepensionage,thisleavesaproportionoffrail individualsatriskofinsufficientcare(Lewisetal.,2008).Lowincomeandfinancialworriesexacerbatethestressofcaringandmanycarershaveto ignoretheirownhealthproblemsduetodifficulty infindingorpayingforsubstitute


care(CarersUK,2012).Despitecarers’rightstoanassessmentoftheirownneeds,notallreceivedthisin2006-7andofthosewhodidonlyhalfreceivedanyservice.Moreover,ofthe£150milliongrantedtoLAsforcarerbreaksandservices,onlyaquarteroftheannualamountwas actually spent on this (Moran et al., 2012).Carers’ involvement in planningPersonalBudgetswasfoundtobehelpfulbutwherecarersmanagedthebudgetitplacedextraworkonthem.Wheretheolderpersonheldthebudgetthiscouldsometimesstraintherelationship:‘Interdependenciesbetweenbudgetholderandcarerarenoteasilyaccommodatedwithinthemodelofpersonalisation’(Glendinning2011,p.19).

LocalAuthority(LA)socialservicescannotmeetrisingdemandfordomiciliarycarewithoutincreasedfunding,yettheirgrantisbeingcutby7%eachyear.Mayhew’s(2012)reportoninformalcarersnotesthattheresponsibilityandcostbornebythemwillthereforeincrease,andsumsup: ‘Thegradualwithdrawalof thestatewill thushavesignificantconsequencesfordemand,especiallyforunpaidcare.Thiswill leadtodifficultchoicesforpotential familycarersbetweenworkingandcaring’buttheimpactonfamiliesofthepolicyshiftisnotalwaysrecognized(Mayhew,2012,p.10).

f. Numbers in institutions and costs

There isevidence thatsomepeopleare in institutions, forexample inhospitalsand incarehomes,unnecessarily.Hipfracturesaretheeventthatpromptsentrytoresidentialcareinupto10%ofcases(quotedinStirling,2011,p.5).ProfessorCliveBallardhassaid‘Incarehomesinthe1980s,about20to25percentofpeoplehaddementia.Tenyearsagoitwasabouttwo–thirds,andnowitisprobablygreaterthan80percent’(quotedintheIndependent16.9.12).Institutionalcareisalsoexpensive.Onestudyshowedthat,whereappropriate,postponingentryintoresidentialcareforoneyearsavesanaverageof£28,000ayear(Stirling,2011,p.5).

g. Poor care in institutions and at home

Themajorchallengeisthepoorstandardofcareprovidedbothininstitutionsandathome.Numerousreportshaveidentifiedthelackofdignityandcare,whichhavebeenfoundinbothsituations.TheCareQualityCommission(CQC)foundthatonly80%ofnursinghomesand89%ofresidentialcareserviceswereensuringthatpeopleintheircareweregivenhelpwiththefoodanddrinktheyneeded(CQC,2011).Forinstitutionsthechallengesarenotjustthepoorstandard,includinglackofadequatemedicalcare,butthefactmanyolderpeopleentertheminacrisiswithoutproperplanning,manydonotneedtobethereandsomecouldbemovedout if therewereadequatealternatives.This isparticularly thecaseforpeoplewithdementia.Olderpeople,ofwhom40%maycometosufferfromdementia,occupytwo-thirdsof hospital beds (Morris, 2012, quotingAlzheimer’sSociety 2012).Not onlymay staff feelunabletocopewiththesepatientsbutitisanexpensivewayoflookingafterpeople.However,‘Despitehealthandsocialcarecostsrisingwithage,thebalanceofcarebetweentotalhospitalinpatientcostsandsocialcarecostsshiftsdramaticallywithincreasingage.Itappearsthatacrossoveroccursinpeopleaged90andover,whenestimatedsocialcarecostsexceedthehospitalinpatientscosts’althoughtherearemarkedregionalvariations(Morris,2012quotingBardsley et al. 2011).

h. Financial constraints

Although the financial aspects of this research are being undertaken by others there aresomefactorswhichmustbementioned.Theseincludecutstoservices.CutsinexpenditureinEuropeanwelfarestatesforlong-termcareare‘emphasising‘self-reliance’andreplacingcare


asanentitlementwithtargetedservices’(GrootegoedandVanDijk,2012,p.677).AstudyintheNetherlandsfoundthat‘disabledandelderlypersonsresistincreaseddependenceontheirpersonalnetworks.Mostclientswhofacereducedaccesstopubliclongtermcaredonotseekalternativehelpdespitetheirperceivedneedforit,andfeeltrappedbetweenthepolicydefinitionofself-relianceandtheirownidealsofautonomy’(ibid,p.677).

Aswell as cuts in the public sector there are cuts in numbers employed in the voluntarysector.IntheUKaround70,000isarecentestimate(Corry,2012)and59%ofcharitiesexpectthe financial situationof their ownorganisations togetworsewithonly13%expectinganimprovement(NationalCouncilofVoluntaryOrganisations(NCVO)CharityforecastJune2012ditto).ArecentNewPhilanthropyCapitalsurveyofcommissioningfrom3rdsectorperspectivesshowabigefforttoworkdifferently(97%workingdifferentlyortryingnewthings)and75%aimingtoharnessthepowerofvolunteers.Buttherewereworriesaboutclosuresandmuchuseofreserves.Theimpactislikelytobeonindividuals,communitiesandfamilies,professionals,policymakersandultimatelysociety.Thefuturemaylieinvoluntaryorganisationsworkinginconsortiaandwiththeprivatesector.

i. Complexity of funding

Lessonsfrom13pilotprojectsin2010onthedeliveryandfundingofpublicservicesshowedthecomplexityofattempting to integrateeachuser’sdiverse fundingstreams intoasingleIndividual Budget (HMTreasuryandDepartmentofCommunitiesandLocalGovernment,2010,p.17).Alsofromacitizenviewpoint,publicserviceswereoftenimpersonal,fragmentedandunnecessarilycomplex,duetothesystemdrivingthecurrentarrangementofpublicservices.Inadditionindividualsandfamilieswithmultipleneedsimposesignificantcostsonareasthat,inmostcases,arecurrentlynottackledthroughtargetedorpreventativeactivities.

5. Why 2012, 2020 and 2050?Whilethedatesforanyprojectionsarepurelyarbitraryitislogicaltostartwiththecurrentdateandthentothinkbothshortandlongterm.2020isoftenusedintheUKe.g.bytheOfficeforNationalStatisticsinSocial Trends. ArecentLocalGovernmentAssociationestimatewasthatspendingonadultsocialcarewillexceed45%ofcouncilbudgetsby2019/20(Corry,2012).

2020hasalsobeenusedbysomegovernmentplanners.ForexampletheHousingMinistersaid(3.1.12)‘Aswegetolderthelastthingwewantisforourpropertiestobecomeourprisons.Wewanttobeabletoenjoythecomfortofourownhomesinlateryears.Butwithnearlyafifthofourpopulationexpectedtobeover65by2020,radicalandurgentchangeisneededtoensurethattheUKnations’housingprovisionmeetsthegrowingandchangingdemandsthatthisisbringingandwillbringinthefuture’.Whetherthathasbeentranslatedintoactionisanother matter. Other government departments have used 2008 for a more immediate date. TheDepartmentofHealth(DH)estimatethat,whilethenumberofpeoplewithonelongtermconditionisprojectedtoberelativelystableoverthenexttenyears,thosewithmultiplelongtermconditionswillrisefrom1.9millionin2008to2.9millionin2018(DH,2012a,p.8).

Otherdemographershaveuseddifferentdates.ForexampleabigresearchprojectledbyMikeMurphyattheLondonSchoolofEconomicsfoundthatintheUKthenumberofpeopleoverthestatepensionageisprojectedtorisebyalmost40%inthenext25yearsandthenumberaged80andover,wherecareneedsaregreatest,willnearlydouble’(Murphy,2010).

2050 is used by the United Nations (UN) for their long term projections. For the UK incomparisonsbetween2009and2050theUNestimatethatthepercentageofthoseaged60+


ofthetotalpopulationwillrisefrom22%to29%andthatoftheover80sasapercentageofthoseaged60+willrisefrom21%to30%(UN2009).Anotherrelevantfigureisthatofoldagesupportratios.Thatisthenumberofpeopleaged15–64(thatispeopleofworkingage)perpersonaged65+willdropfrom4to3.

Weshouldnote,however,thatanarbitrarydatehidesdifferencesingroupsofpeople.Whileitispossibletosuggestwhatmayhappenatanydateolderpeoplemayhaveaverydifferentprofilewhethertheyareforexampleintheir60s,70soranyotherage(nbinsomecaseswehaveusedsomeotherdateswhereinformationhasbeenmorereadilyavailable).

6. Summarising long term care problems and reforms to address thema. General

Therapidgrowthinthenumberofolderpeopleandthegrowingconcernstodeliveradignified later lifehastriggeredsubstantialdebatesonreforminglong-termcareprovisioninthelastthreedecades.AgeingpopulationshavebeenaccompaniedbytighteningpublicbudgetsandsubsequentlymanyOECDstateshaveinitiatedaseriesofprofoundwelfarestatereforms.These two major trends have contributed to change their long-term care scenario. At atheoreticallevel,thelattertrend–ageingpopulationsanddeclininglong-termcaresupport-hasfocusedonpromotingsocialinclusion,justiceandtacklinghealthandeconomicpovertyatolderages.Theformerhasrevolvedaroundtheneedtoendorsealternativeandsustainableformsoflong-termpublic/stateprovisionforlaterlife.

b. The UK

Promotingcareinthecommunityandminimisinginstitutionalcareisalong-establishedpolicyaim,but in the1980swasunderminedbypolicy inotherareas(AuditCommission,1986).To address this, a review was commissioned (Griffiths, 1988). The report recommendedthatLocalAuthoritiesbefundedtoplaythe leadrole incommunitycare:assessingneeds,designing‘flexiblepackagesofcare’andworkingwithserviceprovidersintheindependentvoluntaryandprivatesectorstoexpandchoice.Criticsfearedthatcuts inLAcareserviceswouldincreaserelianceonfamilycare,providedmainlybywomenwhoreceivedlittlesupportascarers(LaczcoandVictor,1991).TheWhitePaperGrowing Older (DHSS,1981)acceptedthatstateservicesdidnotdiminishfamilycareandinitiativesforcarersupportweresetup.However,criticsarguedincreasedserviceswererequiredtohelpcarers(Hicks,1988). The WhitePaper,Caring for People. Community Care in the Next Decade and Beyond(DH,1989)confirmedthecommitmenttoenablelivingas‘independentlyaspossibleintheirownhome,or ina “homelycaresetting in thecommunity’ (ibid,p.3)and to ‘designservices tomeetindividual need’ (para 3.3.3). Six key objectives were identified: a new funding structure;promotion of the independent sector; agency responsibilities clearly defined; developmentofneedsassessmentandcaremanagement;promotionofdomiciliary,dayandrespitecare;anddevelopmentofpracticalsupportforcarers.TheNHSandCommunityCareActfollowedin1990.PolicyGuidanceurged thatbothserviceusersandcarersshouldbeconsulted inLAplans(DH,1990) and theCarers (RecognitionandServices)Act1995gavecarers therighttoaskforaneedsassessmentandreceiveappropriateservices.TheCommunityCare(DirectPayments)Act(1996)allowedLAstomakeDirectPayments(DPs)forsocialcare,butexcludedthoseagedover65untilamendedin2000toincludeolderpeopleandin2001toincludecarers.SinceLAscouldchoosewhethertoallocateDPsormaintainexistingmodelsofserviceprovision,therewasunevendevelopment(Seesection7).


TheRoyalCommissiononLongTermCarechairedbyLordSutherlandrecommendedthat‘Thecostsoflongtermcareshouldbesplitbetweenlivingcosts,housingcostsandpersonalcare.Personalcareshouldbeavailableafterassessment,accordingtoneedandpaidforfromgeneraltaxation:therestshouldbesubjecttoaco-paymentaccordingtomeanstest’(RoyalCommissiononLongTermCare,1999,p.xvii).ThiswasnotacceptedbytheGovernmentalthoughitwasinScotland.Forpeopleonthemarginsofinstitutionalcare,researchshowedthe value of intensivehomesupport, extra carehousing, co-resident careand technology (Tinkeretal.,1999).TheHealthandSocialCareAct(2001,effectivefrom2003)placedadutyonLAstoofferDPstoalleligiblepeoplerequestingit.TheWhitePaper,Our Health, Our Care, Our Say (DH,2006)proposedextendingDPstothose‘lackingcapacity’throughallowinga‘suitableperson’tomanagethepaymentontheirbehalf.PersonalBudgets(PBs)forsocialcarehavebeenpromoted toenablepurchaseofservices fromanyprovider.PBshavenolegislativebasisatpresentbutaconcordat,Putting People First (HMG,2007)wassignedbyCentralandLocalGovernment,theprofessionalleadershipofadultsocialcareandtheNHS.TheHealthandSocialCareAct2008established theCareQualityCommission (CQC)astheregulatorofhealthandadultsocialcareservices,settingoutdutiesandpowers.ServiceprovidersmeetingspecifiedstandardsmayregisterwiththeCQC.

The Dilnot Commission claimed that the current system of institutional long term carewas hard to understand, often unfair and unsustainable’ (DilnotCommission, 2010).Theyrecommended that: individuals’ lifetime contributions towards their social care could becappedataround£35,000,afterwhichindividualswouldreceivefullstatesupport.Themeanstestedthreshold,abovewhichpeopleareliableforfullcarecosts,shouldbeincreasedfrom£23,250 to £100,000; national eligibility criteria and portable assets should be introducedto ensure greater consistency. The recommendations await a decision by government. In2010,plansforadultsocialcareserviceswerepublishedinA Vision for Adult Social Care: Capable Communities and Active Citizens.Plansencompass improvingoutcomes throughmakingservicesmorepersonalisedandpreventativeandbypromotingapartnershipamongindividuals,communities,thevoluntarysector,theNHSandLAs,includinghousing.Ashiftinpowerfromthestatetotheserviceuserisintended,throughextendingtheuseofPersonalBudgets(PBs)andmaximisingusers’independence.ByApril2013,LAsshouldofferPBsforeveryonewhoiseligible,withinformationaboutcareandsupportservices,includingtoself-funders.In2011theLawCommissionrecommended:puttinganindividual’swell-beingattheheartofdecisions;givingcarersnewlegalrightstoservices;placingdutiesoncouncilsandtheNHStoworktogether;buildingasingle,streamlinedhealthandsocialcareassessmentand eligibility framework; and giving adult safeguarding boards a statutory footing (LawCommission,2011).

The 2012 White Paper Caring for our future: Reforming care and support sets out the vision for areformedcareandsupportsystem.Thisfocusesonpeople’swellbeingandsupportingthemtobeindependentaslongaspossible;nationalconsistencyinaccesstocare;betterinformationtohelppeoplemakechoices;increasingpeople’scontrolovertheircare;improvingthequalityofcareandintegrationofdifferentservices;andimprovingsupportforcarers.ThedraftCareandSupportBillwouldreplaceearlierlegislationandprovidealegalbasisforthesereforms.

Theconsistentpolicypreferenceforcareinthecommunityneedstobematchedbyadequateresources.Adangeristhat,asLAsstruggletomeetobligationswithinreducedbudgets,toomanyolderpeoplewillbeexcludedfromcareservicesiftheirneedsarenot‘substantial’ortheirincomeisabovethemeanstestedthreshold.Notallcommunitiescanprovidecarethroughvolunteeringandthecapacityofinformalcarersisalsolimited.Thecurrentchallengesfacing


long termcarearesummarisedasunderfunding,unmetneed,means testing,catastrophiccosts,over-burdenedcarers,localvariationsandcomplexity(Lloyd,2011).Thepoliciesareinplacebutnextwemust‘turntheguidanceandrhetoricofpersonalisedcareintoarealityofeverydaycareandpractice’(Cornwell,2012,p.3).Thisisbetterachievedthroughguidingprinciplesandresponsibleleadershipratherthandetailedinstructionsthatcanobfuscateanddistract.Goodpracticeexamplesandcasestudiesareseenasagoodwayforward(ibid).

c. Outside the UK

InmostEuropeancountriesthechangeinlongtermcarepolicyhasbeenawayfrominstitutionsand towardshomecare.Thedecadeof1980sbroughtanurgentneed for redesigning thearchaic,bureaucratic,standardisedmodelofinstitutionaleldercare.Formostofthe20thCentury,longtermcareresponseswereprimarilybasedonprovidingresidentialcareasasubstituteforfamilycare.TheNetherlands,aspointedoutbyBaldockandEvers(1991)isagoodexampleofaradicalisednursingcaresystem.However,anincreasingnumberofvoicesadvocatednewmodelsofdeliveringcareandsupport toolder individuals.Thisnewpatternwasconceivedas an alternative to residential carewhere individualswith different needswere treated instandardisedrigidinstitutionalsystemsofcare.Argumentsformoreindividualisedcarederivedfromtheneedforamoreefficientandinclusivenewpatternofsocialcareprovision(seeforexampleGlendinningandMoran,2009).Anemphasisontailoringservicestoindividualshasbeenrecentlyembeddedwithinamuchlargerrhetoricofempoweringindividuals(Christensen,2010),knownaspersonalisation.Standardresponsesforamultiplicityofproblemsweredeemedrigidandunfit forpurpose.Asaconsequence,socialcareserviceshavebeen increasinglydesignedtomatchdependent individuals’needsandcareorsupport through individualisedneedsassessmentandwithinthecontextoftheirownhome.

Thispersoncarecentredapproachhasbeenaccompaniedwitharadicaltransformationofattitudesandtheriseofhousingoptionsinfavourofageingintheindividual’shome.Olderindividualsshowastrongpreferencetoreceivelong-termcareintheirhomeratherthanmovingintoaresidentialornursinghome(FriedlandandSummer,2005).Theseareseennegativelybyindividualswhoexpressastrongdesiretoavoidinstitutionalisationmainlybecauseofthelackofprivacy(vanHoofetal.,2011).Therehasbeenagrowingconcerntopreventunjustifiedanddenigratinginstitutionalisationforindividualswithcapacitytoremaininthecommunity.Asa result there hasbeenan increasing consensus that individuals should beprovidedwiththetoolsandresourcestopromoteandenhanceautonomyandindependenceinthehome(Wiles et al., 2012).Greater responsibilities have been placed on individuals,which havemeantashift frompassive toactivecitizenship.Also,needsforhealthandsocialcarearemorecomplexanddiverse.Thus,responsesmustbetailoredtobestmeetcaredemands.Asa result the innovative approachonsocialcareisturningcarereceiversintoactivesubjectsoftheircare.Ideallytheself becomesinvigoratedandpersonalautonomyisaleitmotiv.

ThevastmajorityofWesterncountrieshavebeenstrengtheninghome-basedelderlycare. Therearediverseexamples inEuropeshowing theshiftofsocialcare towardsdomiciliaryservices.Forinstance,Larssonetal.(2005)showhowhomehelpsupporthaschangedoverthesecondhalfof the20thCentury inSweden.Assuch,Swedenepitomises the transitionfromstrongstatesupportforresidentialcaretoamoremixedeconomy,andmorecruciallyadeliberateandexplicitdeparturefromresidentialcareprovisioninfavourofdomiciliarycareservices.Thisprocessstartedasearlyas1956andbecamepopularduringthemid1960swhenhomehelpbymunicipalitieswaspubliclyenforced.The1960sand1970sshowedalargeincreaseintheuseofhomeservices.However,thedecadeofthe1980sbroughtconcerns


aboutthesustainabilityofthesystemandtougherneedsassessmentwereintroduced.Thesechanges were further applied with budget reductions during the 1990s. This transformedhomehelpservicesaseligibleindividualsweremorefrailanddemandedpersonalcare.Theintroductionofnon-publicprovidersofeldercareunderthecontrolofmunicipalitiesreaffirmedthetransitiontowardsamixedmodelofeldercareprovision.Lessfrailindividualshadtofindalternativearrangementstomeettheirneeds,whereaspeoplewithhighdemandswerenotonlyassistedwithhomehelpsupport,butalsomedicalcare.Rostgaardetal.(2011)reviewsreforms in home care for older individuals in nine European countries.As such, a majoremphasisonhomebasedcareisalsoobservedinAustria,Germany,Italy,Ireland,Denmark,England,Finland,NorwayandSweden.Nevertheless,welfarestatearrangements ineachcountryaredistinctiveduetodifferenthistorical,economic,politicalandsocialcircumstances,whichlargelyexplaindifferencesbetweenthem.Whatisclearistheparallelstrainsofageingpopulations on public budgets and the transformation of social care systems introducingprinciples of economic and market criteria. Baldock and Evers (1991) observed parallelpatternsbetweentheNetherlands,SwedenandtheUnitedKingdomduringthedecadesofthe 1980s and 1990s.

The development of social care systems during the 1980swas accompanied by concernaboutpublicbudgetspending.Althoughearlydebatesaboutthesustainabilityofwelfarestatesystemswereparticularly concernedabout the increasing costsof thehealth care, duringthe late1980sandmoregenerallyduring thedecadesof the1990sand2000s therewasashiftofattention towards the futuresustainabilityof thesocial carepublicprovision.Thelasttwodecadesofthe20thCenturyhavehighlightedthisbecauseoftheincreasinggrowthofolderpeopleand theirdemands forcare (Esping-AndersenandSarasa,2002;Hancocketal.,2007).Itisarguedthattransnationalchangesineconomieshaveledtoashiftfromastandardisedphaseofageingtoindividualisation(Phillipson,2003).Thus,thefinancialburdenassociatedwithan increasinglynumerous frailpopulation led toa redefinitionof thesocialcontractbetweenthepublicandprivatesectors.Themodelofpublicserviceprovisionoftheearly1990swasseenasinefficienttotacklethefuturedemandsforcare.

Asaresult,thelargestandmoresingularpolicytransformationintheareaoflong-termcareinEuropehasbeentheprogressiveshiftingoflong-termcareprovisionfrompublictomixedmodelsofcare.Thishasbeenaccompaniedbytheintroductionofamarket-orientedapproach,stemmingfromtheideasoftheNewPublicManagement.Thesechangeshaveresultedinade-instutionalisation of social care provision.The state is no longer the sole provider andorganiserofcareprovisionandfunding.Devolutionofresponsibilitiestowardsotherinstitutionssuchasthemarketorthefamilyformspartofthenewsocialcontractofcare.ThisshiftingtowardsmoremixedprovisionofcarebywhichpublicprovisionisincreasinglydiminishedisaconsequenceofdebatesandlegislationstemmingfromreportssuchastheDekkerReportWillingness to Change intheNetherlands(1987),theGriffithsreportintheUK(1988)andthereport of the Swedish Advisory Committee on Services for the Elderly in Sweden (1989).

Somecriticspointtothe‘marketisation’ofcare.Longtermcarepolicieshavebeenintroducingelements of the private market such as providing competition and consumer choice forindividualsthroughfor-profitorganisationsprovidingsocialcare,(Pfau-EffingerandRostgaard,2011).Inordertoensureavailabilityandchoice,LTCsystemsintroducedreformsseparatingthefundingfromtheprovisionofservices(PavoliniandRanci,2008).Tothisend,cashforcareschemeshavebeenintroducedinalargenumberofEuropeancountries.Cashforcareschemesandtoughereligibilitycriteriaarecommonstrategiestotacklegrowingpressuresformoresocialcareandincreasingnumbersofolder individuals. Individualsmaygaingreater


controloftheircareprovision,butatthesametimetheyaremoreresponsibleformanagingtheircarefunds.Thus,therehasbeenashiftininstitutionalresponsibilitiesfromthestatetoindividuals.Individualshavebecomepartofamuchlargersystembywhichacombinationofinformalandformalresourcesaremanaged .Inotherwords,apersoncarecentredapproachdemandsamuchgreateractive involvementbythe individual.Empowering hascomewithadded responsibilities for individuals to co-produce care arrangements.Multiple examplescanbefoundinEurope.TheNetherlandsintroducedPersonalBudgetsin1995buthasnowabandonedthispolicy.Germanyalsointroducedcashforcareschemesduringthemid1990s;Spainon theotherhand,hasbeena later reformerofLTCasanew lawwasnot in forceuntil2006;thislawalsoallowscashforcareschemes.Bycontrast,theUKwasoneoftheearliestcountriesinincorporatingacashtransferbenefitduringtheearly1980s(Attendance Allowance).OtherexamplesoftheincreaseincashtransfersfordependentpeoplecanbefoundinDenmarkwiththeintroductionofpersonalbudgetsinearly2000s.Similarly,Francehasintroducedcashforcarepaymentforolderpeoplewhoneedhelpwiththeirdailyactivities.Theyareentitledtoacashbenefitforahomecaregiver(‘aidesocialeauxpersonnesagees:aide menagere’). In Germany, however, long-term care insurance has not stimulated thedevelopment of for-profit service providers as the preference for traditional family carerspersists(GlendinningandMoran,2009).

Another significant policy change is the distribution of social care services costs. Costcontainmentmeasureshavebeen introducedsince theearly1990s.Whereasat the initialstageshomedomesticcareworkedonauniversalisticpubliclyfinancedbasis,themostrecenttransformations have limited the contribution of theState. Individuals have beenasked tocontributetoalargerextenttowardsthetotalcostoftheservice.Thus,personalisation and a market-orientedapproach,togetherwithstrainsonpublicbudgets,haveshapedasysteminwhichindividualspartlyortotallycontributetothecostsofcare.Contributionstosubsidisethetotalcostsofcareservicesarelinkedtoneedsassessmentandmeanstesting.However,therearesubstantialdifferencesbetweenEuropeancountries.

Thesechangeshavebeenaimedatloweringpublicspendingonlongtermcare.However,asarguedbyPfau-Effinger(2012),publicsupportforlong-termcarehasnotdiminishedratherthecontrary.Financialsupporthasincreasedsincethe1990sbutthismightbeasaconsequenceofmoreindividualsinneedofcareand/ormoreindividualswithgreaterneedforcareforalongerperiodoftime.Theincreasingnumberofindividualsonhome-basedcarehasresultedinpeoplelivingwithhigherlevelsofneedanddisabilityinthehome.Thus,homebasedcaresystemshavehadtoadapttoamuchlargernumberofdifferentcarescenarios(Rostgaardet al., 2011).Although home care provided by public authorities has been decreasing infavourofprivate forprofitcompanies,DenmarkandSwedenhave largelymaintained theirpublicorganisation,fundingandprovision.However,somedifferencesinhomecarebetweenDenmarkandSwedenareseen.AccordingtoRostgaardandSzebehely(2012)Denmarkhascontinuedtopublicly fundandprovidecareforolderadults,whereasSwedenhasfocusedmoreandmoreontargetingindividualswithhighcareneeds.

Countriesthatrelymoreheavilyonfamilycarehaveintroducedchangesmorerecentlythancountrieswithextensivepublicservicesupport.However,whereas thereexistsacommonagreementamongclinicians,policymakersandsocialresearchersaboutthedesirabilityforindividualstoremainintheirhomeforaslongaspossible,littleagreement,ontheotherhand,isfoundonwhatworksbestforwhom.


7. Placing the older person at the heart of any solution – a person centred approach a. General

Ataninternationallevel,theUnitedNations(UN)haveproducedfindingsabouttherightsofolderpeople(UN,2012).Apartfromtheirfindingsaboutagediscriminationandgapsintheprotectionoftheirrightsthestatementgoeswiderthanthisandstatesthatolderpeopleholdrightsbutareoftentreatedasobjectsofcharity,respectforolderpeoplebenefitssocietyasawhole(becausetheirpotentialcanthenbecapitalised)andolderpeopleareanincreasinglypowerful group.

Policies to place people, whether they are consumers/patients or clients, at the heart ofdecisions are growing.For example peoplewith long termconditionswant to be involvedindecisionsabouttheircare(andbelistenedto),accesstoinformationtohelpthemmakethesedecisions,supporttounderstandtheircondition,confidencetomanageselfcare,joinedupseamlessservices,proactivecare, tobetreatedasawholepersonandfor theNHStoactasoneteam(DH,2012a,p.4).Theydonotwanttobeinhospitalunlessitisabsolutelynecessaryandthenonlyaspartofaplannedapproach(ibid).

Assumptionsshouldnotbemadeaboutwhatolderpeoplefeel.ForexampletheOfficeforNationalStatisticshaveshowninastudyofadultsthatthosewhoreportthattheyhavehealthproblemsdonotalwaysreportlowlevelsoflifesatisfaction(BeaumontandThomas,2012).Nordothosewithgoodhealthalwaysreporthighlevelsofsatisfactionwiththeirlives.

Partofanewapproachisthepolicyof‘reablement’.Thishasbeendefinedas‘an‘approach’ora‘philosophy’whichaimstohelppeopleactforthemselves,ratherthanhavingthingsdonefor them’.Pilotprojectshavebeensetup inmanyareasof thecountryandanevaluation(Glendinning et al., 2010) has shown their benefits. An intensive short term home careintervention,usuallyfor6weeks,hasbeenmade.Theconceptisafollowonfromthepracticeofrehabilitationwhich,althoughthere isnoagreeddefinition, isdesignedtomakepositiveimpactsonindividualsandcarerstoenablethemtolivetheirlivestotheirfullestpotential.AlsoofvalueisIntermediateCare-nursing,physicalrehabilitationandtherapytosupportpeopleondischargefromhospitalortopreventadmission.

AstheKing’sFundputit ‘Patientsandserviceusersshouldbeapartofthecareteamandinvolvedintheco-designandco-productionofcareandhealthandsocialcarestaffshouldworkflexiblyinteams,makingfulluseoftherangeofskillsavailable’(HamandDixon,2012,p.24).

Afocusonredesigningserviceswiththelocalcommunityinvolvedcanmakesavings(e.g.HMTreasuryandDepartmentofCommunitiesandLocalGovernment,2010,p.29):‘Tellingtheirstorytopublicservicesonce’(p.34).Socantailoredsupportasissuesemerge,ratherthanwhentheybecomeacute(e.g.ibid.,p.36).InthisevaluationBournemouth,PooleandDorsetusedatatoidentifyolderpeoplewhowithoutaproactiveofferofsupportwouldotherwisebelikelytoneedcostlyservicessuchasbeingadmittedtohospital.Bradfordestimatedthatbyprovidingasinglepointofcontactforthoseleavinghospital/care,improvinghospitaldischargeplanningandprovidingmoreappropriatesupportinthecommunitytheycanreducethenumberofolderpeoplebeingdischargeddirectlyintolongtermresidential/nursinghomecarebyanestimated50%and£1.8million(ibid,p.36).

We suggest that putting older people at the heart of any solution must start with their full involvementinplanningwhatshouldbeprovidedandhow.WecommendtheIndependenceMattersprogrammewhichshowedavarietyofwaysinwhicholderpeoplewerecontributing


tosociety(DesignCouncil,2012).Whilenotfullyevaluatedyet,initialfindingsarepromising.Theseincludedascheme(LeagueofMeals)whichsharedolderpeople’sknowledgeandtipsabouthomecookingandincollaborativecookingsessions.AnotherwasRoomforTeawhichconnectsguests,suchasinternsinneedofshort-termaccommodationinLondon,withhostswhohavesparecapacityintheirhomes.TheAfterWorkClubisanewsocialnetworkformenwhodonotwanttobe‘retired’andempowersthemtodosomethingwiththeirlives.

b. Personalisation and individual budgets

i. General

Thepolicyaspirationtopromoteservicesresponsivetopersonalneedsandcircumstanceshasbeenre-emphasisedsince2005withtheintroductionofindividualbudgetsforserviceusers.Thisapproachbuildsonusers’ownagency,reducingtheroleofprofessionals(Leadbetter,2004).Theprincipleofpersonalisationhasbeenwelcomedbutquestionsremainonhowitwillworkfordisabledolderpeople(Spandler,2004).Weuserecentresearchtoassessthis.

ii. Typesoffinancialsupport

Itisnotclearwhetherthebenefitsofpersonalisationwillapplyinthesamewaytodifferentgroups with disabilities. For young physically disabled people, personalisation has beenmoresuccessfulthanforthosewithlearningdisabilitiesandthementallyill.Beforeoutliningresearchonolderpeople’suseofPersonal(Individual)Budgets,wesketchtheelementsofpersonalisationpolicyinEngland.

Direct Payments (DP).Thesearecashpaymentsinlieuofsocialcareservices.Thepaymentmustbesufficienttobuyservicesthatmeetassessedneedsandmaybeusedtoemployapersonalassistant(PA)toprovidecare;topayaself-employedPAorforcareservicesthroughaprivateagency; topaya relative,neighbouror friend (butnotaco-resident close familymember);tobuyequipment,homeadaptationsandothersupport.

Personal Budget (PB). This isamoneyallocationestimatedassufficienttopurchaseservicestomeetassessedneeds.ItisofferedtoallwhoareeligiblebutaconventionalLAcarepackagemaybechoseninstead.IfaPBisaccepted,theallocationcanbetakeninfullorpartasaDP,orusedasamanagedbudget.Introducedin2008,thegovernmentwantseveryoneeligibleforsocialcaretohaveaPB,preferablytakenasaDPbyApril2013(Foundations,2012).

Managed PB.Thismaybemanagedbytheuser,familymembers,theLA,thecareserviceproviderorabroker.Intheory,itmaybeusedforpersonalcare,aidsandadaptations,cleaning,gardening,housemaintenance,transport,clubmembership,classes,leisurepursuitsorholidays.PlansarecheckedandapprovedbytheLA.Inpracticethechoicesaremorelimited.

Conventional LA Care Package.Domiciliarycare, inwhichcarers (commissionedby theLAthroughblockcontracts)helpdisabledolderpeoplewithwashing,toileting,dressing,andsometimesmeals,hasbeencriticisedasrestrictingolderpeople’schoices.Becauseoflimitedfunding,visitsareoftenrushed,atinconvenienttimesandexcludeallbutprescribedtasks.

Exclusion from formal assistance.InmostLAs,thosewhoseneedsareassessedaslessthansevereareineligibleforassistance,eventhoughthiscouldprolongindependentliving.Otherswith severe needsmay be excluded by themeans test or be required tomake acontributiontothecostoftheircare.TheLAmuststillprovideinformationandadvice.


Research on older people’s experience of Personal Budgets. ResearchhasfoundthatsupportfromLAstaffwascrucialinensuringolderpeoplecouldexercisechoiceandcontrol(ClarkandSpafford,2001)whileotheranalystsfoundthiswasespeciallysofor thosewithcognitiveimpairments(ArkseyandKemp,2008).Althougholderpeoplearethelargestadultgroupofsocialcareserviceusers,theirtakeupofDPswaslowerthanforotherusergroups(CommissionforSocialCareInspection(CSCI),2005)andby2005-6wasonly1.3%ofusers(ONS, 2007).To find outwhy and to assess the effectiveness ofPBs, pilot projectswerecarriedoutin13EnglishLAs,from2005-7(Glendinningetal.,2008;Moranetal.,2012).OlderdisabledpeoplewererandomlyallocatedtoaPBoraLAcarepackage,thusavoidingself-selectionbias.InthePBgroup,mostusediteithertobuybasicmainstreamservices(homecare,meals, equipment and adaptations, 53%) or for personal assistance (41%).A smallminorityincludedotheroptionssuchasleisureactivities.AllrequiredsupportfromLAstaffinplanningandcostingoptionsandallocatingtheirbudget.

After sixmonths, older users’ satisfactionwithPBswas lower than for other user groups.NearlyhalfofolderPBuserssaid theirviewofwhat theycouldachievehadnotchanged,comparedwithlessthanathirdofyoungerPBusers(Glendinningetal.,2008).Worryingly,45%ofolderPBusershadpoorpsychologicalill-health,comparedwith29%ofthecomparisongroup.Therewasnosignificantdifferenceinmeetingneedsbutolderpeople‘didnotappeartoexperiencethehigherlevelofcontrolwithIBsreportedbyyoungeragegroups’(ibid,p.87).Forpsychologicalwellbeing,‘standardarrangementslookmarginallymorecosteffective’thanPBs(ibid,p.110).Inthesamestudy,40olderpeoplewereinterviewedindepth(Moranetal.,2012).Somefoundmanaging theircareservicesburdensome,others that thePBwas toosmalltouseastheywishedandnotworththeextrawork.AmongthetinyminoritychoosingaDP,somewereanxiousaboutthepaperwork,theresponsibilitiesofemployingaPAandtheconsequencesiftheemploymentrelationshipbrokedown.Someolderpeopledidnotwanttheresponsibilityofincreasedchoiceandcontrol:‘quitehappywiththearrangementI’vegot’(ibid,p.16).TheauthorssuggestthatthosewhodowantmorechoiceandcontrolpreferitwithinaconventionalLAcarepackage,forexamplechoosingthetimingandtaskswhencarersvisit.Butthesewouldpushupcosts.RecentresearchinoneLAfoundtheaveragePBallocationforolderpeoplewas£243perweek,twicethecostofaconventionalcarepackagebutonly75%oftheaveragePBacrossallusergroups(WoolhamandBenton,2012).OlderpeoplewhohadchosenaPBhadslightlybetterpsychologicalhealththanthosewithaconventionalcarepackage,but theauthorsaskwhether theLApackagewouldhaveproducedsuperioroutcomes thanPBs if funded at the same level.Analysis of national datasets showa fallsince2007/8intheamountofhomecareservicesprovidedtoolderpeople,withhighlevelsofunmetneedforsocialcare;forexample,twothirdsofthosewithdifficultyindressingandhalfofthoseneedinghelpwithbathinghadnosupport(Vlachantonietal.,2011).ThesefindingsraiseconcernaboutLAspendingcuts, if lackofsocialcareworsensolderpeople’shealth,underminingindependenceandshiftingcostsontotheNHS.

The relatively low amount of older people’sPBs couldmake care services by communitymicroenterprises financially non-viable, especially if they are to recruit and retain suitablytrainedcarestaff(Glendinning,2011).Thusolderpeople’schoicesinuseofaPBmaybeverylimited.AfurtherissueisthatlackofCriminalRecordBureauchecksonprivately-hiredcarestaffposeariskoffinancialorotherabuseofolderpeople,ifthelabourforceisunregulatedandmainly unqualified. In theabsenceof caremanagement byLAsocial services, familymembers(ifanyareavailable)couldbeleftstrugglingtomonitorthesituation.Reflectingonpersonalisationforolderpeople,Glendinningetal.(2008)suggeststhatgainsfromincreased


opportunitiesforchoiceandcontrolmaybeverysmall,oroutweighedbypotentiallysignificantcosts. Unpredictable disability trajectories, with complex and changing needs for support,requireconstantreviewandrenegotiation;theeffortthisentailsaddstothestressforuserscopingwithpainfulanddistressingconditions.LAstaffhelpinsupportingolderusers’choicesastheirneedschangeislikelytoremainimportanttousersandtheirrelatives.

Theaspirationtoimprovechoiceinsocialcareforolderpeoplelivingathomedependsonadequateresourcestopayforadiverserangeofservicesandhigh-qualitypersonalcare.Itissuggestedthatpersonalisationwillstimulatean ‘expandingmarketestimatedat£21.4bna year, or1.6%ofGDP’ (TechnologyStrategyBoard,p. 2). Thismarketwouldbe fundedeither by an older population wealthy enough to purchase high quality personalised careprivately,and/orextramoneyfromthestatetoenablepoorerolderpeopletopurchasesuchcare.Neither of these seems likely.State spendingon careand support for older people,far fromrising, isexpectedtobe£250millionpa lower inreal terms in2014than in2004,despitenumbersofolderpeoplerisingbytwo-thirds(Glendinning,2008).Whilethevisionofindependence,choiceandcontrolmayberealisedforbetter-offandlessdisabledolderpeoplewho,althoughineligibleforstatehelp,canbuywhattheywantfromlocalsmallbusinesses,thosewhoareolder,moreseverelydisabled,poorerandlivingalone(mainlywomen)couldfind theirPB too small to buy theamount andquality of carepreferred.The researchwehavereviewedindicatesthatpersonalisationwithoutadditionalresourceswillnotachievethedesiredrevolutioninhomecareforolderpeople.

8. Practical examples of long-term care at home – the vignettesInwhatfollowswebuildonpreviousworkfortheRoyalCommissiononLongTermCarewhichlookedatalternativestoresidentialcareininstitutionsforolderpeopleonthemarginsofenteringlongtermcare(Tinkeretal.,1999).Thisexaminedevaluatedoptionsandconsideredfourinparticular.Theywere intensivehomesupport,co-residentcare,veryshelteredhousing(nowmoreoftenknownasextracarehousing),andassistivetechnology.WeconsidersixvignettesofpeoplewhowereonthemarginsofinstitutionalcareandwhatservicesmightbeneededtokeepthemathometakenfromtheRoyalCommissiononLongTermCare.Thevignettesshownbelowillustrate the kinds and intensity of help older people are likely to need. We have added one or twoextraservicesbasedonnewerservicesavailable(initalics).Despiteexpectedadvancesinhealthandlongevity,similarlycomplexandchallengingconditionsarelikelytocontinuetoaffectfuturecohortsofolderpeopleandtheirfamilies,forshortperiodsorforseveralyears.Thecommentandanalysisassociatedwitheachvignetteshowedthefrequencyofhelp(largelytomakepredictionsaboutcost)butthisapproachmaynotmeettheaspirationsofolderpeople,orclosefamilymembers,hopingtoretainanaccustomedwayoflifeandameasureofautonomy.

• Vignette 1.Womanaged75-84,recentlywidowedandlivingalone.Shehasasupportiveneighbourwho is in full-timeemployment.Shehassomerestrictionsonmobilityandmoderateconfusion.Sheisunwillingtogooutsidebyherselfnowandisunabletogoshoppingaloneor tocollectherpension.Shehas long-intervalneeds(i.e. ‘unable toperformoneormoredomestictaskswhichrequiretobeundertakenoccasionallybutlessoftenthandaily’).

Weestimatethispersonneedsthefollowingservices:• Dayandnightcare:daycentre1dayperweekfor52weeks;• Personal care/household/shopping/finance: homecare2hoursperday7daysa

weekfor52weeksandbathassistance1hourperweekfor52weeks;• Caremanagement:52weeks.


• Vignette 2.Managed85+,livingalone.Heispronetofallsandisarecentwidower,notusedtoperforminganydomestic tasks.Cooking,cleaninganddoing the laundryareproblematicforhim.Heislonely.Hehasshort-intervalneeds.

Weestimatethispersonneedsthefollowingservices:• Homeenvironment:alarmsandfalls detector;• dayandnightcare,daycentre1dayperweekfor52weeks,lunchclub2daysper

week;• Personal care/household/shopping/finance: home care 3 hours per week for 52

weeks;• Counselling:call3timesaweekfrombefriender,advocate,goodneighbour,visiting

warden;• Caremanagement:52weeks.

• Vignette 3.Womanaged85+,livingalone,andhasbecomeanxiousandclinicallydepressed.Physicallyquiteactivebutneedsencouragementtoleavethehouseandtosocialise.Needssomesupportwithdomesticandself-caretasks.Shehaslong-intervalneeds.She could be a candidate for home sharing if room in the house.

Weestimatethispersonneedsthefollowingservices:• Homeenvironment:alarmsystem;• Dayandnightcare:psycho-geriatricdayhospital1dayperweekfor52weeks;• Personal care/household/shopping/finance: home care 3 hours per week for 52

weeksandhelpwithgardening;• Healthcare:communitypsychiatricnurse2hoursperweekfor52weeks;• Caremanagement:52weeks.

• Vignette 4.Womanaged85+,hasmovedtolivewithhermarrieddaughterwhoworkspart-time.Sheismentallycapablebuthasdevelopeddiabetesinrecentyearsandnowhasterminalcancer.Shehasbecomedoublyincontinent.Herdaughtercannotprovideherwith24-hour-a-daycarebutisabletoprovidecareattheweekend.Shehascritical-interval needs.

Weestimatethispersonneedsthefollowingservices:• Homeenvironment:alarm,telemedicine devices to monitor diabetes,astairliftand

adownstairsWC;• Personal care/household/shopping/finance: day care2hoursperday5daysper

weekfor52weeks;• Healthcare:Macmillannurse1hourperweekfor52weeks,acommunitynurse1

hourperday7daysperweekandcontinencesupplies;• Respitecare:hospicecare1weekevery2months(6weeksperyear);• Counselling:1hourperweekfor50weeks;• Caremanagement:52weeksayear.


• Vignette 5.Woman aged 75-84, living alone, ismentally capable and has becomewheelchair-boundaftere.g.astroke.Shefindshersituationdemoralisingandneedstobeencouraged tosocialiseand takeholidays.Shehascritical-intervalneeds (i.e.‘unabletoperformcrucialself-caretaskswhichneedtobeundertakenfrequentlyandatshortnotice’).She could be a candidate for home sharing if room in the house.

Weestimatethispersonneedsthefollowingservices:• Homeenvironment:alarmsandhomesensors,homeadaptationssuchasstairlift,

ramps,doorswidening,downstairsWCandkitchenmodifications,batteryoperatedwheelchairandaspecialbed;

• Dayandnightcare:daycentre1dayperweekfor52weeks;• Personalcare/household/shopping/finance:homecare10hoursperdayfor6days

perweekfor52weeks,homecare2hoursperdayfor1dayaweekandbathingassistance1hourperweekfor52weeks;

• Healthcare:communitynurse1dayaweekfor52weeksandcontinencesupplies1dayaweekfor52weeks;

• Respitecare:2weeksofholidays;• Counselling:1hourperweekfor50weeks;• Caremanagement:52weeks.

• Vignette 6.Managed65-74,marriedandlivingwithhisspouse.Hisdementiaissevereenoughthathecannotsafelybeleftaloneinthehouse.Heisoftenawakeandactiveatnight.Duringthedayheusesthetoiletfrequentlyandneedssomehelpandsupervision.Hiswifehasarthritisandfindsitdifficulttogetupthestairs.Hehasshort-intervalneeds(i.e. ‘unable to performoneormore domestic taskswhich require to be undertakenfrequently,thatismoreoftenthandaily’).

Weestimatethispersonneedsthefollowingservices:• Home environment: a downstairs WC and shower and safety devices such as

wandering sensors and automated doors;• Dayandnightcare:daysitting1dayperweekfor4hoursandnightsitting1night

perweekfor52weeks;• Personalcare/household/shopping/finance:bathingassistance1hourperweekfor

52weeks;• Healthcare:visitbycommunitypsychiatricnurseonceamonth;• Respitecare:16weeksayear;• Caremanagement:52weeks.


9. Living environments for the future: alternatives to institutionsa. Criteria for the built environment

Thematerialenvironmentof‘home’influencespeople’sactivitiesandensurestheirfeelingsofprivacyandsecuritythroughcontrolofaccess.Moreover,peoplearrangetheirownspacetosuittheirpreferences,whilestillconformingtoculturalnorms.Theseprinciplesareusuallyviolated in institutionalsettings,wherespacesaresocompressedandalteredas tomakequasi-domesticlivingimpossible,withprivacyandcontrolofaccesseroded.Thisdistancesresidents fromsocial participation, as they are no longer perceived by others, or evenbythemselves,aslivinginaccordwithacceptedculturalpatterns.Buttheprinciplesmayalsobethreatenedinalternativehousingschemesandeveninanolderperson’sownhomeasaresultofthewayhomecareisdelivered.Controlofaccessislargelylostwhenastreamofdifferenthelpers,perhapsfromdifferentagencies,hastogainentry.Acceptancethattheproviderisenteringaterritorybelongingtoandinthecontroloftherecipientiskey.Thismaybeespeciallydifficultwhenagreatdealofhelpiscalledfor,asillustratedintheVignettes.Itcanalsobedifficult forproviders to resist takingcontrolwhenadomesticsetting is transformedby thenecessaryintroductionofspecialistequipmentsuchasorthopaedicbeds,mobilityequipmentandotherdevicesthatcandistancethehouseholderfromcontrolofspaceandprivacy.Theseissuesneedtobeborneinkindwhenconsideringinnovativetechnologyanddesignofnewkinds of housing.

b. Criteria for the social environment

Whendesigningnewgoodsandservices,itisessentialthattheemotionalandpsychologicalimpactsofbecomingarecipientofcareareunderstood.Becominganobjectofcarebyothersinitselfthreatensdignityandselfhood,whethercareisdeliveredinaninstitutionalsetting,analternativeschemeor in theolderperson’sownhome.Foroperational reasons, the timingandnatureofcaretasksareoftenreducedtofragmentswhichprovidersfindmanageable.Theindividualbecomestheobjectofcarebyanumberofindividuals,whomaybeseenas‘strangers’,andbytheorganisationprovidingtheservice–abureaucratically-ledbreakdownoflife.Thisremovestheolderpersontoaperipheralpositionwhereanysenseofselfbecomesdifficulttomaintain.Feelingsofcontrol,containment,orderandacceptability,asenseofselfwithin a societal whole, are at risk and thismay be invisible to providers.Any innovativeserviceneeds todisrupt thestrong tendencyon thepartofcareproviders to takecontrol,as theyaim to save timeandmaintain efficiency.Without constant sensitivity to theolderpersonassubject,careprovisioncanbecome less thansupportiveofself.Staff training isvitaltoensuresensitivitytopeople’sfeelingsaboutneedingandreceivinghelp,yetsuchinputhasbeenminimal.Therangeofstaffexpertiserequiredisindicatedinthetasksrequiredtosupportthesixindividualsandtheirfamilies/friendsillustratedbythevignettes.

TheCommunityCare legislationof theearly1990swas followedby theCaring for People who Live at Homeinitiative.Nineteenlocalauthoritiesweregenerouslyfundedtodesignandimplementhomecareservicestomeetolderpeople’saspirationsmorefullythanbefore.Theevaluatedoutcomes (Perkinsetal., 1997)are still valid.Theyshowed the feelingsof100usersaboutthisenhancedprovision.Theygreatlyappreciatedkindness/politeness;company;professionalism/efficiency;help/hope for the future; reliability/continuity;willingness.Whereproblemswerereported,thesewereduetouncertaintiesabouttimingandpersonnel;limitedtime/rushing; unwillingness/ unpleasantness; inefficiency and amateur approaches. Thisresearchshowsthatthewayinwhichhelpisprovided,andbywhom,ismostimportantfortheolderperson.Individualsmustbetrainedandsensitizedtocaregivingtasks,sincetheir


kindnessandefficiencyarecentraltotheuser’sexperience.Providingthelevelofskillrequiredtomaintainsensitiveservicestandardsiscostly.Butifperson-centredcare(orpersonalisation)istomovefromrhetorictoreality,preservingdisabledolderpeople’sself-esteem,thequalityofcarestaffiskey.

Tosummarise,theeconomiesofscalethathavehithertobeenthebasisofprovisionhavenotallowedtheflexibilitytorespondtoindividualcircumstances,whichiskeyifputtingtheolderpersonatthecentreofcareisaseriousaim.Traininghighqualitycarestaffwillalsoincreasecosts.Extendingnewdevices,formsofhousingandservicessothattheyareavailabletoallwhoneedcarewillnotbyitselfbeenoughtoensureperson-centredcareunlessguidedbythedisruptioninthinkingandpracticethatthisresearchprogrammecallsfor.

c. The importance of housing and issues of tenure

Tobeabletostayinahomeofone’sowniswhatmanyolderpeoplewant.Thismaybeliterallyinahometheyhavelivedinforsometime,amovetoamoresuitabledwellingortosomethingpurposebuiltwithcareonhandorotheroptions.Weexaminetheseoptionsbylookingatthewaysinwhichthiscanbeachieved.

Butfirstwestateveryfirmlytheimportanceofhousing.AlthoughtheGovernmenthasbelatedlyacknowledgetheroleofhousinginthe2011PublicHealthWhitePaperwewouldarguethatmoreneedstobedone.Oneofushasalreadypresentedevidenceto theHouseofLordsCommitteelookingattheeffectsofdemographicchange(Tinker,2012).Wewouldsummarisethisbyarguingthat,whiletheclearlinkbetweenhealthandsocialcarehasbeenmadeandtherearemanyinitiativestosupportthisthesameisnottrueofhousingandtheseservices.Wemaintainthathousingcanactasapreventiveservice.Expertsinthefieldmaintainthat‘Housingstandardsandsuitabilityarepivotal toachievingthese(i.e. targetse.g. toreducedays inhospital)but receive inadequateattention inhealthplanningand thecostbenefitsof suitable, decent housing is under-reported’ (Care andRepair, 2012, p. 4). They go onto summarise the research: ‘Housing conditions have a significant and quantifiable effectonhealth.TheBuildingResearchEstablishmentquantifiesthecoststotheNHSofspecificaspectsofpoorhousingasover£600millionperyear.Manyofthechronichealthconditionsexperiencedbyolderpeoplehaveacausallinkto,orareexacerbatedby,particularhousingconditions.Thishousing/health linkbecomesmore importantwithage,aspeoplebecomemorepronetotripsandfallsandmoresusceptibletocoldordamprelatedhealthconditions.Poorthermalstandardsinthehomesofolderpeopleareaquantifiablecontributortoexcesswinterdeaths.Therehavebeenmanyreportsthathaveindentifiedwherehousingspendhasledtosavingsinhealth’(CareandRepair,2012,pp.4-5).

TheHousingAssociationsCharitableTrust’sFitforLivingNetworkalsogiveextensiveevidenceofthelinksbetweenpoorhealthandhousing(Stirling,2011).TheyquoteresearchpublishedbytheUniversityofWarwickwhich‘confirmedthattheone–offcostsofworksto improvepoor housing gives an annual financial saving to the health sector. It also found that lowcostinterventionsprovideparticularlygoodvalueintermsofhealthandwell-beingbenefits’(Stirling,2011,p.3).

It isalso important to recogniseanumberof relevant issues for the future.These includethe issue of tenure especially levelsofowneroccupation.Levelsforpeopleofpensionableage are currently 64% (ONS, 2011, p. 7).ThePensionsPolicy Institute estimate that theaveragelevelofhomeownershipamongthoseofstatepensionagewillreach80%by2030(AdamsandJames,2009).However,asCareandRepairhavepointedout ‘thenumberof


low incomeolderhomeowners isset to risesignificantly, fuelledby twomain factors– the‘RighttoBuy’andpeakhomeownershipgenerationsgrowingolderwhilstmanypensioners’incomes(particularlyprivatepensionsandannuities)arefalling.Thismeansthatlowincomeandpovertywillriseamongstolderhomeowners’(CareandRepair,2012,p.2).

d. Staying in own home

i. General

Themostimportantfactorforthehomeisensuringthatitissuitable.Ideallyitshouldbebuilttostandardsthatwouldbesuitableforalltimesofthelifecourse.Sometimescalled‘inclusivedesign’or‘designforall’thismeansdesignwithouttheneedforadaptation.‘Lifetime’homesdescribehomesthathavebeenbuilttobeadaptableenoughtomeetthechangingneedsofsomeonethroughalifetime(Seesection10agooddesign).

Ifchangesareneededanoccupationaltherapististheidealpersontolookatthehomeandrecommendwhatneedschanging.DisabledFacilitiesGrantsuptoamaximumof£30,000areavailableontheirrecommendation.Theyareforowneroccupiersorprivatetenantsandcoverworkimprovingaccesstoabathroom,livingroomorbedroom,providingextrabathroomfacilities, making the preparation and cooking of food easier, adapting lighting or heatingcontrolsandimprovingaheatingsystem.Wesuggestthattheyareverygoodvalueandwouldhelp prevent a move to an institution.

ii. Home sharing

Homeshare schemesmatch an older householder with a ‘Homesharer’ who can providesome support and companionship - often a student or public service worker in housingneed.Homesharers,whomaybe single or a couple, usually live rent free but contributetohouseholdbills andprovideanagreedamount of hoursof helpeachweek; shopping,cooking,cleaning,laundryandgardening.Theykeepaneyeontheolderperson,providingcompany,reassurance,supportand,ifnecessary,liaisonwithrelatives.Homesharersplayapreventiverole–improvingnutrition,ensuringdrugsaretakencorrectly,reducingriskoffallsanduseofemergencyservices,but theydonotprovidepersonalcare,which isarrangedseparately.Increasingneedforpersonaland/ornursingcarebytheolderpersonoftenlimitsthedurationofamatchbutHomesharingcanshortenhospitalstaysanddelayamovetoresidentialcare.

IntheUK,Homesharersarevettedbystaffofacharityorstatutorybody,whoensurebothpartiesaccept theterms, including lengthof theagreement.WhenaHomesharerwantstoleave,staffseekasuitablereplacementingoodtime.Therearenotenancyrightsorcontractofemployment.Detailsof the legal,safety, insurance,financialandethicalsafeguardsareprovidedinHardy(2011).Homesharingisavailableforolderpeoplewithsufficientspaceintheirhomeandlivingwhereaprogrammeoperates.Sincethe1980s,11schemeshavebeendeveloped,includinginGreaterLondon,EastSussex,Bristol,Bath,otherpartsofSomerset,WorcestershireandCumbria;someschemeschargeformatchingandadministration(NAAPSUK,2011).ThereisalackofindependentresearchandevaluationofUKschemes.

Outside theUK,Homeshareschemesaimedathelping frailolderpeopleoperate inmanywesterncountries. In theUS,where the ideastarted in the1970s,100schemesoperate,involvingbothrentalpaymentandserviceexchange.Australia hasafewschemesandtherearemany inEurope. Schemes are similar across countries in their principles but differ indetails,suchaseligibilitycriteriatojoinandarrangementsforexchangesofmoneyandcare.


InAustralia, there isgrowing interest inHomeshareprogrammes.HomeShareMelbourne,runbyWesleyMissionVictoria,hasoperatedsince2000.Homesharers range fromyoungstudents toretired individuals in theirearly70s,providingupto10hoursperweekofhelpto older householders in return for accommodation (Wesley Mission Victoria, 2012). AsocialevaluationoftheHomeshareVictoriapilotschemefoundhouseholdersappliedforaHomesharerduetodeclininginhealthorhospitaladmission,beingconcernedforsafetyandsecurity andwanting companionship.The duration ofmatcheswas 32weeks on averagebutvariable,aboutathirdlastingatleastoneyear.Thestudyconcludedtheschemewasofsignificantsocialbenefittotheparticipants(Montague,2001).Acost-benefitevaluationofthesameschemeestimatedannualbenefitsworth$832,317toparticipantsandnetsavingsof$50,222tothehealthandsocialcaresystem(Carstein,2003).HomeShareTasmania,apilotprogramrunbyaGovernmentfundedagencyandcoveringHobart,GlenorchyandClarence’(DepartmentofHealthandHumanResources,2012)requires10hoursofhelpperweekinexchangeforaccommodation.AdministrativecostsandamatchingfeeofA$150arepaidbybothparties(HomesharerandHouseholder)avoidinganystatesubsidy.However,nooneisexcludedduetoaninabilitytopay.

In Spainschemesareusuallymanagedbypublicorprivatenon-for-profitagencies,althoughasavingsbankhasparticipated.Adistinctionismadebetweenolderhouseholderswhoarerelativelyindependentandthoseneedingmorecare,althoughHomesharingforthelatterisrare.InCatalonia,aHomesharingprojectmatchingstudentsagedunder30witholderpeopleover60hasoperatedfor12years.Extrabenefitstostudentsareasmallpaymentandmuch-neededfreeaccommodation,whiletheolderpersonbenefitsfromtheintergenerationalcontact.

In other countries, such as theCzech Republic, the homesharer pays a small rent andprovidesafewhoursofserviceswhileinGermanyandAustria,homesharersmaypayrentorprovideacombinationofrentandservices.Often,schemesaremanagedbyuniversities,orfocusonmatchingstudentswitholderpeople,asin|Italy(Rome,Florence,Bologna,Turin).Similarly,inFrancethereareseveralprogrammes,includingthe‘Ensemble2générations’(anot-for-profitorganisation)thatmatchesstudentsandolderindividualsunderdifferentregimesofexchange:rentorservicesoramixofthese(ensemble2générations,2012).

Insummary,Homesharingenablesolderadultstoremainlivingindependentlyintheirhomefor longer, preventing isolation and saving costs to both the householder and the state inreducinguseofhospital, residentialcarehomeanddomiciliaryservices. Itprovidescheapaccommodationforthoseneedingit,especiallystudents,andabonusisthecontributiontointergenerational relationships,with transferofknowledge,experienceandvaluesbetweenyounger and older people.

iii. Homemodifications

Homemodificationsincluderepairs,aidsandadaptations.LargelypioneeredintheUKtherearemanyexamplesofevaluatedsuccessfulschemes.

In the UK Homeimprovementservicesareagenciesthatprovidecomprehensive,practicalhousinghelptopeopleonlowincomehomeownerswhoneedhelpwithrepairsandadaptationstotheirhomes.Theyprovideadvice,helpandsupporttorepair,improveoradapttheirhomeormovetomoresuitablehousingifthisisthebestoption.Theyarecurrentlyfacingcutsinfunding.

The value of Handyperson schemesthatoffer‘thatlittlebitofhelp’havebeenshowninanevaluation (Croucher et al., 2012). Schemes are described in the evaluation as ‘assistingolder,disabledandvulnerablepeoplewithsmallbuildingrepairs,minoradaptationsuchasthe


installationofgrabrailsandtemporaryramps,‘odd’jobs(suchasputtingupshelves,movingfurniture),fallsandaccidentchecks,andhomesafetyandenergyefficiencychecks’(ibid,p.1).Theresearchfoundthattheservices‘deliverarelativelyhighvolumeofpreventiveactivityarelatively lowcost’(ibid,p.3). Inparticularthereportfocusesonthepreventiverolewheresmallrepairsandminoradaptationsofferthepotentialtoreducedemandforhealthandsocialcareservices.

Servicescouldreducetheriskoffallsandenableindependentliving,increasepeople’ssecuritybymeasurestopreventburglaries,reducethelengthofhospitalstaybydischargeschemesthat can install key safes, grab rails, temporary ramps, moving a bed etc, enable energyefficiencyschemesandmeasuresthatleadtoimprovementinhealthandwellbeing.Inadditiontheresearchoncosteffectivenessshowedthat,forexample,adaptationscouldpostponeentryto residentialcarebyayearsavingonaverage£28,080p.a.;preventinga fall leading toahipfracturecouldsavethestate£18,665onaverage,reducethecostsofhomecaresaving£1,200to£29,000p.a.andspeeduppatientrelease,apotentialsavingofatleast£120perday(ibidp.3).Theresearchadditionallyevaluatedsomepilotprojectswhichwentbeyondthetraditionalservicesby,forexample,providingamoretailoredservicetopeoplewithdementia.

Another study endorsed these findings summarising research showing that improvingpeople’shomesproducedrealbenefitsinhealthandwellbeinginadditiontoproducingcostsavings(PapworthTrust,2012).Theirrecommendationsincludedanewpartnershipbetweenthehealthcareandhomeadaptationssectors includingtheinvolvementofthenewHealthandWellbeingBoards,givingGPsabiggerrole includingbeingabletoprescribeaidsandadaptations,givingmoreinformationandadvice,changingmeanstestingrulesandofferinglowinterestloansforpeoplewithhomeequitywhodonotqualifyforhelp.

Forhomeownerswithhousingequityitispossibletoreleasesomeofthatequitytopayforrepairsandadaptations.However,olderpeoplehavenotbeenenthusiasticabouttakingupthisoptionassomeschemeshavehadproblems.Ithasbeensuggestedthat‘Statesupportforsociallendingpossiblycoupledwithsomegranthelpisanimportantmeasuretoensurethatequityreleaseoptionsbecomeaviableoptionratherthanonewhichistalkedaboutasasolutionbutisnoteffectivelyused’(CareandRepair,2012,p.7).

OutsidetheUKanearlypieceofresearchontheimpactofhomemodificationsinprolongingindependentlifestylesofolderadultswasintheUSAbyMannetal.(1999).Thisassessedthrough randomisedcontrol trials the functionaldeclineofagroupof frailolder individualsover a period of 18monthswho had assistive technologies and homemodifications.Theassessedassistivetechnologiesrefertocanes,walkersandbathbenches.Resultsshowalower functional declineamong thegroupof individuals that received treatment comparedwiththecontrolgroup.Bycontrast,astudybyFange(2005)inSwedenamongagroupof98community-dwellingindividualsfoundlittleimpactofhomemodificationson‘activityaspects’and ‘personal and social aspects’, though individuals reported higher independence in‘bathing’.Nevertheless,asPeterssonetal.(2008)show,homemodificationshelptodecreasethedifficulty inperformingpersonal, instrumentalandmobility tasks.Otherstudies indicatepositiveoutcomesofhomemodificationsforolderindividualsonimprovingthesenseofsafetyandsecurity.Forinstance,Peterssonetal.(2011)foundsignificantincreasesinthesenseofsafetyand security amongSwedish individuals receivinghomemodifications.Theproject,embeddedinamuchlargerresearchonhomemodifications,pointsoutthepotentialofsmallphysicalchangesinthehometomaintainindividuals’independenceintheirhome.However,accordingtoFange(2005),thelargestproblemincomparinghomemodificationinterventionsisthelackofahomogenousconceptualdefinitionandmethodstoassessindividuals.


Recentresearchwasconducted in2011bytheSocialServicesDepartmentofBarcelonaCity Council in collaboration with the Independent Living Association (Centre de vidaindependent,2012).Theprogrammeofhomemodificationwasaimedat individualsaged65 and older who have telecare services to promote personal autonomy.A total of 911individualsbenefited from thehome repairsand technicalsupport in thehome.Commoncharacteristicsoftheseindividualswerethatthevastmajorityhadlowincomes(74%),livedalone(approx.92%)andwerefemales(approx.90%).Amongthehomemodificationsandtechnicalaidswere:grabbars,raisedtoiletseats,showerseats,longhandlebrushesandcombs, towels for toesandback,adapteddrinkingcups,panhandleholders, bowlsandplateswithhighsides,sockaids,mobilelifts,articulatedbeds,walkers,senior-friendlyTVremotecontrolordoorbellamplifiers.Positiveeffectswerefoundregardingsecurity,qualityoflifeandautonomytoperformdailylifeactivities.Anotherfindingthatshowsthepreventativenatureoftheprogrammeisthat‘Theestimatedratesofprevalenceforeachseveritylevelofdependence fora rangeofagesare thesame in thenext lower range ifapreventionprogrammeisimplemented’(Alemanyetal.2012).

Homemodificationshavealsobeen reported to efficiently tackle risk factors for falls andconsequently hip fractures. These are associated with greater probabilities of mortalityandmorbidityamongolderindividuals(Wolinskyetal.,1997).RecentsystematicresearchconductedbyClemsonandcolleagues(2008)reviewedaseriesofenvironmentalrandomisedtrials assessing the impact of homemodifications in reducing falls. Home environmentalprogrammeswere found to reduce the risk of falls, especially for individuals with a highrisk. On the other hand, research conducted by Lord et al. (2006) points out that homemodificationsarenotdirectlypreventativeamongthegroupofolderindividuals.Theauthorsreviewedfiverandomisedcontrolledtrialsshowingpositiveoutcomes,althoughthesestudiesdidreportinconsistentfindings.Similarly,Stevensetal.(2001)pointoutthelackofpositiveoutcomesinavoidingfallsfromaone-offintervention,althoughthestudywasnotexclusivelyfocussedonhomemodificationsbutalsoeducationandhazardassessment.Thus,homemodificationsshowmixedresultsastotheefficacyinimprovingindependenceandqualityoflife of older individuals.

PublicpolicyaimedatfundingandprovidinghomemodificationsfordisabledindividualsvariesacrossEuropeancountries.Nordiccountriesareamongthemostgenerousinpubliclyfundinghomemodificationsthroughcouncilsandlocalauthorities.Bycontrast,SouthernMediterraneanandCentralcountrieshavemuchlowerpublicinvolvementinfundingandprovision.

e. Who moves and why

We also need to address the issue of moving.In2008/099%ofallhouseholdsinEnglandmovedwithin theprevious12monthsandowneroccupiersweremore likely tomove thantenants(ONS,2011,p.14).Olderpeoplearenotaparticularlymobilegroupbutaremorelikelythanyoungertounderoccupy.AstudyinSwedenofcohortsofpeopleborninthe1920s,1930sand1940sfoundthatthemajorityremainedintheirownhomebutalmostonequarterdidmove(AbramssonandAnderson,2012).Oftheseasmallernumbermovedfromowneroccupiedhousingtoatenantcooperativeorrentedhome.Thisstudyshowedtheimportanceofcohortdifferences.Theysay‘Ifthecharacteristicsofthemoversfromsingle-familyhousingtoapartments–suchashigherdivorcerates,highereducation,foreignbornandgeneratingcapitalincomeforthesaleofahouse–arerepresentedtoalargerextentamongtheyoungercohorts,thenwecanexpectmoresuchmoversintheyearstocomeprovidedthatthetypesofhousingindemandisavailable’(ibid,p.600).


f. Moving to a specially designed home

Forsomepeopleamovemaytakeplacetoaspeciallydesignedhome.Thisisusuallyonedesignedtodisabilityorwheelchairstandards.TheconceptofLifetimehomespioneeredbytheJosephRowntreeFoundationhasbeenprovedtobeacosteffectivesolutioninthatpeoplecanstayinthiskindofhomeforalltheirlives.

g. Moving to specialist grouped housing – sheltered and very sheltered/extra care housing

IntheUKmostspecialisthousingstartedintheformofshelteredhousing.Thiswasagroupofflatsorbungalowswithcommunalfacilities,awarden(oftenlivingonthesite)andanalarmsystem.However,researchshowedthatitwasdifficulttokeepveryfrailpeoplethereastherewasnotenoughsupportandsomehomesbecamedifficult to let (Tinker,1995).From thisconceptdevelopedaformofhousingwithmoresupport.

Extracare(orverysheltered)housingisshelteredhousingwithadditionalfeaturessuchas24hourcareonhand,enhancedcommunalfacilitiesandatleastonemealadayprovided.Thefirstevaluationof suchschemeswasanational survey in1989 (Tinker,1989)whichfound that itwas ‘oneway inwhichelderlypeoplecan retain their independenceandyetreceiveextracare’.Itwasconsideredtobeoneattractivealternativetomostforhospitalorresidentialcare.Itwaspopularwithmanagement,elderlypeopleandstaff.Howeveritwas‘generallymoreexpensivethanstayingathomewithaninnovatoryservicethoughgenerallycheaperforelderlypeoplethanhospitalorresidentialcare(Tinker,1989,p.126).Subsequentevaluationshavefoundsimilarfindings.Keyfindingsofthelargestrecentstudyfoundthatthemostimportantattractionsofextracarehousingwere:havingtheirownfrontdoor,flexibleon-sitecareandsupport,security,accessiblelivingarrangementsandbathrooms,thesizeoftheaccommodationavailable(Nettenetal.,May2012).Theoverallconclusionswereverypositive.Itwasconcludedthat‘Peoplehadgenerallymadeapositivechoicetomoveintoextracarehousing,withhighexpectations,oftenfocusedonanimprovedsociallife.Aftertheyhadmovedin,mostpeoplereportedagoodqualityoflife,enjoyedagoodsociallife,andvaluedhesocialactivitiesandeventsonoffer.Comparingresidentswithsimilarcharacteristics incarehomes,residentsinextracarehousinghadbetteroutcomesandcostswerenothigher(ibid,p.4).Howevertheresearcherswentontocautionthat‘Withoutcontinuingtoattractawiderangeofresidents,includingthosewithfewornocareandsupportneedsaswellasthosewithhigherlevelsofneed,extracarehousingmaybecomelikeresidentialcareandalsoitsdistinctiveness’.Thisisthegeneraldilemmawhenservicesarerationedtothosewiththe greatest need.

Anotherstudyconcludedthatextracareisahealthyhomeforlife,translatesintofewerfalls,andsupportssomeoftheoldestandfrailestmembersofsociety.Theresearchersalsolookedatthepossiblesavingsintimeinhospital.Theystatethat‘Residenceinextracarehousingisassociatedwithareducedlevelofexpectednightsspentinhospitalthanmaybeexpectedinanequivalentpopulationlivinginthecommunity,matchedondemographicandselectedsocioeconomiccharacteristics.However,thedifferencesareattributabletoalowerpropensityof beingconfined inhospital initially, andnot throughshorter lengthsof stay.Our findingsgenerally support our notion that extra caremay play a part in reducing the risk of initialentryasahospitalinpatient’(Kneale,2011,p.122).Theconclusionsofthisstudywerethat‘Thebenefitsofresidenceinextracarehousingcouldtranslateintosubstantialcostsavings,particularlyinthelong-term’(ibid,p.132).


Thereportgoesontomakethecaseformoreor thiskindofprovision.Asmallamountofresourceshaverecentlybeenmadeavailableforthedevelopmentofextracarehousing.TheGovernmentmadeavailablea£300millioncapitalgranttostimulatethemarket.Itishopedthat thiswill result inanextra9,000specialhomes.Althoughmostextracarehousinghasbeenprovidedinthepublicsectoreitherbylocalauthoritiesorhousingassociationsthereisalsoacaseforprivateprovision,aPrivateFinanceInitiative/privatepartnershipsandusingdevelopersownresources(Kingetal,2005).

AnoteofcautionabouttheexpenseofextracarehousingwasexpressedintherecentHAPPI2reportproducedbytheAllPartyParliamentaryGrouponHousingandCareforOlderPeople(Best and Porteus, 2012) when they suggested that it might not always be economicallypossible for every scheme to have a range of communal facilities and on-site staff. Theystate that ‘For themassof retirementhousingprojects thecurrentageofausteritymeans‘cuttingone’scloth‘totakeaccountofmorestraightenedtimes.Whilesomespaceforsocialinteraction,atleasta‘clubroom’withkitchenfacilitieswillremainimportant,itseemsthatinmostnewdevelopmentsthefootprintofcommunalspacewillhavetocontract’(ibid,p.11).However,theyalsoputthecaseforprovisionof2bedroomapartments.Thismightencourageolderpeopletodownsize.

Outside theUKacross theworld therehasbeenamovement towardssmaller clustersofhousing with varying degrees of support. The ultimate purpose of small clusters was toimprove privacy, autonomy, choice, control and independence of residents (Regnier andDenton,2009).Tothatend,aseriesofnewpurpose-builtgrouphousingclustershavebeendevelopedinvariouscitiesindifferentcountries.InthiscategoryofhousingwecanincludeAssistedLivingFacilities(ALFs)intheUSAorclusterhousingschemesintheScandinaviancountriesorthemorerecent‘housingwithservices’.Thesefacilitiesarehomelikesupportivelivingarrangementssimilartonursinghomesbutwithastrongerpromotionofindependence,intimacyandchoice.

ClusterhousinghasalongtraditionintheEuropeanNordiccountries.InSweden,forinstance,clusterhousingorFokushousinghasitsoriginsinthelate1960s.Duringthe1970stheFocussocietybuilt280apartmentslocatedin12cities.Mostoftheclusterhousingbuildingconsistsof50or60unitswith10to15specialapartmentsforindividualswithextensivecareneeds.Duringthe1980smoreapartmentswerebuilt,buttheoriginalphilosophyofclusterhousingwasmodified.‘Boendeservice’ arealsoapartmentsbutinsmallerunitswithfewerapartmentsandnotsharedfacilities.Thereareonly5to10apartmentswithround-the-clockaccesstostafffromaseparateunit(Ratzka,1986).

Othersimilar‘housingwithservices’experienceshavebeendevelopedinEuropeanCountries.For instance, inSpain the City Council of Barcelona has recently promoted 925 units ofapartments forolder individuals(‘Habitatgesambserveisperagentgran’) (AjuntamentdeBarcelona,2012)thatserveover1,000individuals.Alltheapartmentsarepurpose-builthomeswithtelecaretechnologiesandround-the-clockstaffassistance.

AssistedlivingfacilitiesareparticularlypopularintheUnited Stateswheretherehasbeenarapidlygrowingmarketof theselicensedfacilities(Balletal.,2004).Althoughtheysharesimilar characteristics with cluster housing, they are substantially different from the newScandinavianmodelof‘housingwithservices’.Themaincharacteristicsofthesefacilitiesaretheirnonmedicalcharacter,24hoursassistanceandpersonalcareservices fordependentolderindividuals.AstudyconductedinvariousassistedlivingfacilitiesintheU.S.foundanoverallpositiveoutcomeoflivinginsuchinstitutionsandavoidingstressfulsituationsofleaving


afamiliarplace.However,forafewresidentswithhighneedsstayinginALFsturnedouttoincreasephysicalimpairmentsandbeingsociallyneglected.Thus,ALFsareaperfectfitforcertainindividualswithlowormildcareneeds.TheresearchbyBallandcolleagues(2004)indicatestheimportanceofmanagingresidentdecline;thisisbalancingneedswithresources(withaconsequentincreaseinfees).

AmorerecenttypeofresidentialgrouplivingdevelopedintheNetherlands shares similarities with‘housingservices’or‘servicehouses’intheScandinaviancountries.‘Apartmentsforlife’ isaninnovativehousingarrangementforolderpeopleboostedbythenon-profitorganisationHumanitasFoundationinRotterdaminthemid1990s.Itsrevolutionaryconceptofcare,cureandcommunitylivinghasservedasagoodexampleforAustralia.Thehousingprojectwasprojectedasanalternativetotraditionalresidentialandnursinghomecare.Themajorpurposeistokeeppeopleindependentforaslongaspossibleinalocalcommunitywheretheyfeelsafeandwheretheirdemandsforcareandsocialexchangeareeasilymet.

Apartmentsforlifestartedwith350apartmentsinthreecomplexesin1995.Ithasnowbeenexpandedandhas1,700apartments in15differentcomplexeswithanestimatedfigureof2,500individualsmakinguseofit(HumanitasFoundation,2012).Theseapartmentsofferawiderchoiceofcare.Residentsarefreetoorganisetheircareneedsastheywishratherthanlivingwith constrainedschedulesofactivitiesandcare.Apartmentsarespeciallydesignedforindividualswithcareneeds(‘ageproof’apartments).Peoplecancontinuetolivewiththeirpartnerorrelative.Theseapartmentscanbepurchased(owner-occupied)orrented. In thecaseofHumanitas-Bergwegdiffersinthattheapartments(195intotal)aresubsidisedrentedapartments.TheHumanitasFoundationstressestheideaof‘Useit’or‘Loseit’.Thisideaisrelatedtoempoweringindividualswithcaredecisions.Theyareinchargeoftheirdailylivingaslongastheyarecapable.‘Patronisationand‘killingwithkindness’aredisastrousforaperson’sfunctioningandconsequentlyforhisorherhumandignity’(HumanitasFoundation,2012).

Thevalueofextracarehousingattheendoflifeishighlightedinsection11.

h. Retirement villages

Arelatively recentdevelopment inhousing forolderpeople in theUKhasbeenretirementvillages.Thesearepurposebuiltdevelopmentsusuallywithdifferenttypesofaccommodationandsometimesthewholerangeoffacilitiesfromordinarysmallhomes,nursinghomes,leisurefacilitiesandarestaurant.MorefamiliarintheUnitedStatesandAustraliatheyhaveprovedpopularwith residents. In theUKmosthavebeen forowneroccupationor foraparticulargroupofpeoplesuchasLicensedVictuallers.Manyareleaseholdandaresubjecttorisesinservicecharges.ThereislittleinformationaboutsuchdevelopmentsintheUKapartfromoneortwoevaluationsofspecificschemessuchasBerryhillRetirementVillageintheMidlands(Bernardetal.,2004)andHartriggOaksinYork(Croucheretal.,2003).Boththesehavebeenshowntobepopularwiththeresidents.ItremainstobeseeniftheyfollowinthepatternofsomeintheUSAwheretherehavebeenproblemsofschemesgoingbankruptandofpeoplebeingturnedoutwhentheybecomefrail.

In the US, New Zealand and South Africa, retirement villages for older adults are fairlycommon.ThevillagemodelhasitsoriginintheUSwiththeconstructionofBeaconHillVillage(seereferences–website).ThisisamembershiporganisationintheheartofBostonfoundedin2001.Itwasaninitiativeofagroupof long-timeBeaconHillresidentsasanalternativetomovingfromtheirhomestoretirementorassistedlivingcommunities.BeaconHillVillageenablesagrowinganddiversegroupofBostonresidentstostayintheirneighbourhoodsas


theyageandbecomemorefragilewithouttheneedtomovetoanursinghome.Byorganisingand delivering programs and services residents can lead safe, healthy productive lives intheirownhomeswithcarefacilitiesifneeded.Therearealsoarangeofsocialandculturalactivitiesavailabletoresidents.AccordingtoVillagetoVillagenetwork(2012)therearemorethan60 initiativesvarying in theircharacteristics; theyareself-governing institutionsbasedonmembershipthatprovideandarrangeserviceswiththeobjectivetohelpindividualsageinplace(Greenfieldetal.,2012)througha‘combinationofnon-professionalservices,suchastransportation,housekeepingandcompanionship,aswellasreferralstoexistingcommunityservices’(Scharlachetal.,2011).AspointedoutbyScharlachetal.(2011)andGreenfieldetal.(2012)thereisanalarminglackofevaluationandexaminationofvillageinitiativesacrossthecountry.WhenScharlachetal.(2011)conductedasurveyof30fullyoperationalvillagesacross theUS thefindingswere restricted todescribing thecharacteristicsof thevillages,excludinganyreviewonhealthoutcomesorimpactonindividuals’well-being.

In the Netherlands Hogewey village was founded about two decades ago (1993) nearAmsterdam (Weesp).This organisation is designed for individualswith dementiawho canno longer live independently in theirownhome.Thevillagecanhostup to167 residents.Theorganisationaimsatmakingindividualsascomfortableaspossiblebyenablingthem‘tocontinueto live inthemannertowhichtheywereaccustomedprior theonsetofdementia’(Notter et al., 2004, p. 449).To that end, they have created different life styleswithin thevillage(‘homeswithinhomes’).Sevenlifestylesaredesignedtobetteradapttodifferentsocialcircumstancesofindividuals.Assuch,thesesevenstylesare:Gooiseoraristocracy;Culturel;Amsterdamse (urban crowded lifestyle); Indische for people from Indonesia; ChristelijkeforindividualswithChristianreligiousfaith;Ambachtelijkeforpeopledescribedashavingaworkingclasslifestyle;Huiselijkeforpeoplewhoweredomesticworkers.Eachindividualisthenassessedandplaced inoneof theseven lifestylessuchasbeliefs,previousactivity,hobbies,etc.Theyallhavetheirownhouseandareinchargeofasmallbudgettobuyfood,medicines and care supplies.There are three different groups of individualswith differentneedsandcapabilities:mildlyimpairedorlargelyautonomous;moderatetosevereimpairedpeoplewithdementiawhoneedprofessionalsupervisiononadailybasis;and,bed-riddenindividuals.Thevillageoffersawiderangeof facilitiessuchasagrocery,kitchenorabar.Care isprovided24hourssevendaysaweek,but individuals canwalk freelyaround thepremises.AccordingtoHurley(2012)thecostsfortheresidentinHogeweydoesnotexceedthecostsofanursinghomeinHolland.However,therehasnotbeenathoroughexaminationof the cost-effectiveness ofHogewey.There is also a lack of studies reporting on clinicaloutcomes(Hurley,2012).

A similar village initiative in the USA isTigerPlace (see references –websiteAmericare).This innovativecommunity-basedcare facilityhasbeendesigned,supportedandprovidedbytheSinclairHomecare,alicensedMedicarecertifiedhomehealthagencyandanin-homeproviderofsupportiveservicesfoundedin1999,incollaborationwiththefacultyfrommanycollegesandschools,mainlytheSinclairSchoolofNursing(SSNO)inMissouri.TigerPlaceislocatedinMissouri(USA)andistheexpressionofanewAgeinginPlaceProjectthataimsatmaximisingandpromoting independence forolderadults (Rantzetal., 2008)using thevillagemodel incombinationwithsmarthometechnologies.TheTigerPlaceprojectstartedin2003with33apartmentunitsandmore recently24moreunitshavebeenadded.Eachapartmentisfullyequippedwithkitchen,washeranddryer.Themodelofthefacilityisavillageoneforindependentliving.TigerPlaceconsistsof31independentapartmentsandusesthesametechnology.Sensorsareinstalledintheapartmenttomonitorindividuals’activities.The


building offers a series of facilities for intermediate long-term care.A centralisedwellnesscentre organises activities to help resident remain active and independent for as long aspossible.Thewellnesscentre isopenthreemorningsaweek,butallresidentsareentitledtousearegisterednurseoncall24hoursaday.SinclairHomecareprovidesalargevarietyofin-homeservicessuchashelpwithactivitiesofdailylivingandcarecoordinationofhealthconditions.Demiris,Oliveretal.(2008)interviewedninepeopleusingambienttechnologyintheirapartmentintheTigerVillageretirementfacility.Oneofthecharacteristicsofthisvillageistheemphasisoncombiningcommunity-dwellingserviceswithhome-basedtechnologies.Theteamconducted75interviewsandthreeobservationalsessions.Theaimoftheinterviewswastolookintotheindividuals’perceptionsofthesensortechnologies.ThefindingsareverysimilartowhatvanHoofetal.(2011)foundamongusersofsmarttechnologiesintheNetherlands.Therearethreeclearphases:familiarisation,adjustmentandcuriosityandintegration.Peopleinthestudydidnotreportprivacyconcerns.However,therearethreemajorcaveatsinOliverandcolleagues’study.First,itdoesnotprovideevidenceabouttheeffectsofthetechnologyorbenefitsofcommunitybasedcareforindividualsintermsofhealthoutcomesorwell-being.Secondly,thereisalackofresearchonthecost-effectivenessofthisfacilityandwhetheritisaffordableforthelargemajorityofpeople.Finally,thefindingsonindividuals’perceptionsarebasedonaverysmallsampleofonlynineindividuals.

i. Other options

Otheroptions includesharingahomewithafamilyeither inagrannyflator livingwiththefamily;sharingwithanotherolderpersonorwithagroup(suchascohousing).

i. Sharing a home with a family

Someolderpeoplemoveinwithafamilyor,morerarely,afamilywillmoveinwiththem.Theymay share the home and live together or may live as separate households as in Granny Flats. Thisiswherethetwohouseholdshaveaccommodationwithsomeoftheirownfacilitiessuchasafrontdoorand/orcookingarrangements.Someearlyresearchofthisformofhousinginthepublicsectorshowedhowsuccessfultheywerefortheolderpeopleandfamilies(Tinker,1976).Theycanprovidemutualsupportandmayreleaseanunder-occupiedhomeiftheolderpersonmoves.However,theywereinflexibleastherewereproblemswhentheolderpersondiedorthefamilymoved.Thiskindofhousingismorepracticalintheowneroccupiedsectorwhereanadditionalhomecanbeusedforotherssuchasanaupairorotherstaff,areturningadultchildorlet.Wesuggestthatthisformofhousingshouldbeencouraged.Little is known whentwoorthreeolderpeoplelivetogetherwhethertheyarerelated(suchastwosisters)orunrelated friends.

ii. Adultplacements/sharedlives

Anolderpersonwithmodestcareneedscanpay(includingfromaPersonalBudget)toliveinthehouseholdofacarefullymatchedandtrainedFamilyCareProvider(FCP)whoprovidesanagreedamountofpersonalcare.Thematchingserviceisregulatedandmaybeoperatedby an agency such as NAAPS, a UK-wide network of very small family and community-basedcareandsupport solutions (NAAPSUK,2010a)oraLAsuchas thePeterboroughAdultPlacementScheme(2010).Theserecruit,assessandapprovefamilies,chargingafeedependingontheolderperson’sageandmeans.Abouthalfthematches(3,800of10,000)areaffiliatedtoNAAPSunderthebrandnameSharedLives(NAAPS2010a).Theplacementmaybeonalongorshort-termbasis,asFCPsmayprovidedaycareorpost-hospitalcareandenable respite for informal carers.SharedLives services are closely alignedwith the


goals of personalisation (seesection7), supporting the older person toenjoyasociallifeandpursueindependentrelationships,ensuringtheirwishesarecentralinanydecisionsaffectingthem.NAAPS(2010a:6)claims that ‘Manypeople’swellbeingandqualityof life improvesdramaticallywhentheystarttouseSharedLives’whiletheCareQualityCommission’s2010reportrated95%ofEnglishSharedLivesschemesasgoodorexcellentandnoneaspoor.

However, thereare somedrawbacks toadult placement forolderpeople.Whereanolderpersonwishestopurchaseextracareservicesfromapersonalassistant,theymayneeda‘suitableperson’tomanagetheirmoneyandanyemploymentcontractinvolved.Butnamingthe FCP as the suitable person can give rise to a conflict of interest and/or be unlawful.Similarly,ifthecared-forpersonwishedtouseDirectPaymentstopurchaseservices,itwouldbepreferabletohaveafamilymember,friendortheLAasthe‘suitableperson’.ModificationstotheSharedLivesstructure,especiallywherethemediatingandmatchingroleofSharedLivesstaff isby-passedtocutcosts,riskfallingfoulof legalandethicalsafeguardsfor theparticipants.Detailsareverycomplexaseachofthediversearrangementspossiblecomesunderdifferentregulations,taxregimeandemploymentlaw,andthesedifferamongtheUKnations.Moreover,adultplacementhasbeenorientedtowardsyoungerpeopleandmovingto live inanotherhouseholdmaybe lesssuited toolderpeople,diminishing theirsenseofselfandthecontinuityoftheirlife(seesection2).Inaddition,therequirementtopayfortheplacement(incontrasttoHomeshareintheUK)introducescomplexityandlegalissuesthatcanbeunwelcomefortheolderperson.

Forlocalauthorities(LAs),considerablesavingscanbemadethroughplacinganolderpersonthroughSharedLives,whosaytheysavetheLA£2,340perpersonpaonaveragerelativetootherformsofsupport.ButsavingsaremadeattheexpenseofFCPs,whoareavailableoutofhoursandtypicallydomorethantheyarepaidfor.SomeFCPshavereportedthatcutsinLAdaycareservicesputthemunderpressurethatimpairedthequalityoftheirsupporttotheolderperson:‘Theyrelyonusfeelingguiltyandprovidingfreesupport’.ThisextraworkislikelytoincreaseascutsinLAbudgetsforsocialcarebite.ASharedLivesstaffmemberwarned,‘We’reindangerofrecreatingbadfamilysituationsifwedon’tfundaproperservice’(NAAPSUK,2010a, p. 7).Although theCQCassessmentsofSharedLives schemesarepositive,thereisnootherindependentevaluation.

iii. Cohousing

Cohousing denotes a self-starting, self-managing intentional community that can beintergenerational or restricted to those over age 50. Such communities are dedicated tosharingactivities,keepingactiveandmutualsupport.Theycaterforolderpeoplewhovaluetheirautonomyandprivacy,yetenjoycompanionshipandreciprocalminorassistance.Socialisolation,acommonproblemamongBritisholderpeoplewasfoundbyaSwedishstudytobesignificantly linked todementia rates. Itsadvocatesclaim thatcohousing,by facilitatingsocialinteractionwithinthecommunityandthroughitsethosofmutualself-help,mayallowolderpeopletoavoidentrytoaresidentialcarehomeordelaythisaslongaspossible.Theenergiesofolderpeople themselvesare thusharnessed to reducedemandonhealthandsocialcareservices(Brenton,2001;2004).Neuberger(2008)seesco-housingasenlargingfrailolderpeople’schoices,catering for theirpreference toavoidanursinghomeordelayentryaslongaspossible.Inthissection,wedescribevariousformsofcohousinginEuropeandNorthAmericaintermsofhowsuchcommunitieswork,theirrobustness,andthekindofmutualcarepractised.However,thereisalackofresearchonhowcommunitiescopewhenmembers’needforcareincreases.


The UK isacohousing laggardbycomparisonwith internationaldevelopments.TherearemanyaffinitycommunitiescoordinatedbytheCohousingNetwork,butasyetnocohousingschemeforolderpeople.TheOlderWomen’sCoHousinggroup(OWCH)isagroupofLondonwomenagedfrom50to80whomeetregularlytoplantheirowncohousingcommunityinthecapital,withmixedrentalandownedunits.Whenthisisachieved,itcouldbethefirstsuchdevelopmentbyolderpeople in theUnitedKingdom (OWCH,2009).But so far theUK isarguablymissinganopportunitytouseolderpeople’sownorganizingenergyandcapacityformutualaid,aswellastosavecoststothestate.

Co-housingoutsidetheUKhasplentyofexamples.Denmarkhasabout350collectivehousingschemes,mostlyingroupsof15-30units.Therearealsoabout140intergenerationalschemes.Cohousingislocatednearsmallandmedium-sizedprovincialtowns.Seniorunits,eachwithkitchen,bathroomandsmallgarden,aretypicallylowterracedhousesaroundacourtyardandsharingcommonfacilities.Only1%ofDanesaged50+liveincollectivehousing,butmanywouldliketo,attractedbythesenseofcommunity,goodneighbours,reciprocalsupportandarrangingactivitiestogether(Kahler,2010).DaneAge(2007)estimatedbetween15and20percentofolderpeoplewantedtomoveintocollectivehousingorsenior-citizenhouses.A2009surveyof23seniorsaged60-90inacohousingschemeindicatedtheyfelthappy,safeandhadbetterself-assessedhealththanin1999.Themajoritywereactiveinassociations,suchaseveningclassesorsports,andbenefittedfromhelpwithsmalltasksandfromcompany.Beforemoving in,85%said theyoften felt lonelybutonly10%said this in2009.Optionalcommunalmeals,preparedonarotabasis,aresharedthreetofivetimesperweek(Kahler,2010;Berger,2010).

Sweden has 45 cohousing schemes, the result of civil society campaigns and positiveresponsesfrompublichousingauthoritiesduringthe1980s.Theprojectsareconcentratedinthemainurbancentresandaremainlyinblocksofflats.Communalfacilitiesareusuallyonthegroundfloorbutmayincludearoofpatio.Seniorcohousingunitsaresmall(e.g.8sqm)whichkeepsthemaffordable.Unitsarepopularandtherearewaitinglists.Choi’s(2004)surveyofresidentsinScandinaviancohousingfoundthatmostwerehealthy,intheir70s,andsatisfiedwiththeirhome.Itwouldbeinterestingtofollowthemupwhentheyareolder.

In the Netherlands cohousing (or centraal wonen) started in the 1960s,mainly foundedbyyoungpeople,andthenumberofschemeshas increasedsince then.Eachhouseholdhasthenormalroomsandfacilitiesbutsharesfacilitiessuchaslaundries,meetingplaces,hobbyrooms,workshopsandgardenspace.Schemesusuallyhave30to70households,sometimesinself-managingclusters.Mostarerentedfromahousingcooperativebutsomeareowner-occupied(Bakker,2009).Inthe1980s,communitiesforseniors,‘living groups of the elderly’weredeveloped,tomeettheneedsofthegrowingproportionofthepopulationagedover50.Theseare supportedby local governmentas theyareexpected to reducecarecosts,buttheyarestartedbyinterestedindividualsandcouples.TheDutchFederationof Intentional Communities commissioned a study in 2008 into the level and quality ofmutual caring experienced in cohousing communities (Bakker, 2009). This author notesthat individualsneed tobeable tocopewith theconflicts thatsometimesarise inmakingdemocratic decisions and negotiating on the basis of equality, co-operation and a senseofresponsibility;therearenoleaders.Therewardisasenseofbelonging,reciprocityandlearningfromothers.Membersvaluethisformoflivingforitswarmthandcompanionability(gezelligheid),social interactionandmutualsupport.Sharedmealsare rarebutmembersactas friendlyneighbours.Someolderpeoplechooseamixed-agecommunity,othersanage-basedone.Anagerangefrom55toover90yearsallowsnaturalrenewaltotakeplace,


withyoungerandmoreablemembersprovidinghelpforthemostdisabled.CohousinghasspreadfromEuropeacrosstheAtlantic,takingseveralnewforms.

In North America several types of supportive intentional communities have emerged tochallenge the isolation and social exclusion thatmany older people experience.The vastdistances of the USA and habits of driving, fast food, material consumption and TV canexacerbateisolation,disconnectednessandfear,arguesWann(2007).Hissolution,forolderpeople,wasa‘neighbourhoodonpurpose’–whereseveralhouseholdscollectivelybuylandand property where they drive less, exercise more, produce their own food, energy, andentertainment,meetingneedsforsecurity,self-expression,affectionatefriendships,democraticdecision-making,shared leisureandmutual respect (ibid).Wann’sgroupof60peoplehadbeen inspired by the lively interactive quality of Denmark’s cohousing, as conveyed byMcCamantandDurrett(1988).TheirbookgeneratedaUSAcohousingmovement,withover100communitiesformedby2007andmoreplanned.Cohousingtakesseveralformsincludingcooperativeschemesbasedonasharedbuilding,withresidentcontrolandself-governance,oftenbasedon commonvalues - religious, utopianor ecological.Thosecommunities thatrecruitorbreedyoungermemberscanadjusttotheincreasingcareneedsofoldermembers,remainingage-balancedandresilient.However,olderpeoplemayfindtheyhavelesssayindecisions inamixedagecommunity.SeniorCooperativescateronly forolderpeople: ‘thefastestgrowinghousingalternativeinsmalltownAmerica’.

Amongmoreadventurousolderpeople,mutualassistanceisprovidedinTransientRecreationalVehicle (RV) clubs. These offer a supportive social network and RV parks for temporarysettlementbetweentravels.WomeninRVcommunitiescareforotherswhoareillordying.

Canadahashadhousingcooperativesforsometime,somestartedbyolderpeopleasretireesneedingaffordablehousingwherememberswouldshare responsibility foroneanother. InTorontoa152-unitcohousingproject forwomenagedover45wasopened in1997by theOlderWomen’sNetworkCooperative.Itallocatessomeunitsfordisabledandabusedwomen,providingasafeandaffordablehomeforall.

Wehavedescribedavarietyofformsofcohousingacrosstwocontinents.Theydifferinsomedetailsbutall fosterasenseof responsibility formembers;anethos thatallowspeople tothriveinasecureandfriendlyenvironment;thatbothprotectsandstimulates;thatengendersmutualrespectandpreserveschoiceandautonomy.Aprivatefrontdoorandpersonalspacematterstomostpeopleover50,asdogoodneighboursandopportunitiesforeasyeverydaysocial interaction.Cohousing canmeet theseneeds, improving thequality of life for olderpeople needing onlymodest amounts of help andmaking efficient use of scarce buildingland.Abonusisthepotentialforreducingdementiaratesbypreventingisolation.Lessclearis the capacity for copingwhenmembersdevelop conditions suchasdementia, strokeorincontinence,althoughUSevidencesuggestsmixedagegroupscancopebetter.BecausetherearenoseniorcohousingcommunitiesintheUK,theconceptcannotbeevaluatedhere.Howeverstudies inseveralEuropeancountriessuggest it isbeneficialandpopularamongresidentsandEuropeanschemesprovidepracticalmodelsforsuchdevelopmentsintheUK.

j. Some radical alternatives to institutions and staying at home such as hotels, cruise ships

SomeolderpeopleintheUKusedtomovetohotelsorboardinghouses(oftenbythesea)inoldage.Evenrecentlytherehasbeenpublicityaboutoneortwoolderpeoplewhohavemovedtoanhotel.‘ThecouplewhostoppedataTravelodge–andstayedtherefor22years’(The


Times,11.9.07)and‘Whyshouldn’tolderpeoplechoosetoliveinaTravelodge?’(Guardian 11.9.07).Theyarenowsaidtohavemovedout.MovingtoalittlemoreevidenceratherthananecdoteastudypublishedintheJournalofAmericanGeriatricsSociety(LindquistandGolub,2004)claimedthatlivingonacruiseshipprovidesabetterqualityoflifeandiscosteffectiveforelderlypeoplewhoneedhelptoliveindependently.TheauthorDrLeeLindquistcomparedtheamenitiesandcostsinassistedliving(intheUSA)withaccommodationoncruiseships.‘Bothcruiseshipandassistedlivingfacilitiesoffersingleroomapartmentswithaprivatebathroom,ashowerwitheasyaccess,somehelp,cabletelevision,securityservicesandentertainment.Cruiseships,however,havesuperiorhealthfacilities–oneormoredoctors,nursesavailable24hoursaday,defibrillators,equipmentfordealingwithmedicalemergenciesandtheabilitytogiveintravenousfluidsandantibiotics’(ibid).Intheoriginalarticletheauthorsalsoclaimthatcontactwithrelativeswouldbeencouraged.Astheyputit‘goseegrandma’wouldbeagoodoptionforchildrenandgrandchildrenwhowouldgettotakeaholidayatthesametime.(LindquistandGolub,2004,p.1953).

10. Key factors for revolutionalising long term care for older people a. Good design of homes and towns

HomesbuilttoLifetimestandards(alreadydescribed)areidealastheycanenablesomeonetoliveinthemforalltheirlives.TobewelcomedistheadvicefromtheMinister(3.1.12)tolocalcouncilstoconsidertheneedsofolderpeopleintheirhousingplans,byensuringthatnewhomesbeingbuiltincludefeaturessuchaswiderdoorsforwheelchairsandwalk-inshowers.Equallyimportantisthewiderenvironmentsuchastownsthatareagefriendly(seetheworkoftheWHO,2007andBiggsandTinker,2007).Planninghasaroleheretoo.

b. Changing patterns of informal and formal care

Thereareatleasttwoaspectsofcare.Thefirst,andthemostimportantintermsofsize,isinformalcare(seesection4e).Co-residentcare,particularlythatgivenbyspouses,wasnotedascrucialinourworkfortheRoyalCommissionin1999(Tinkeretal,1999).Aswellasfamilycare,thereiscare/supportfromothersinthecommunity.AbefriendingserviceisquotedinaDHdocumentonmentalhealth(DH,2011a).ResearchbasedonanevaluatedpilotundertheBrighterFuturesGroupprogrammes,showsthat‘preventinglonelinesscouldreducehealthserviceusebyolderpeopleandledtosubstantialsavings’(ibid,p.10).

Thesecondtypeofcareisformal,providedbyaprofessionalsuchasanurseoroccupationaltherapist. In thehome it isusually referred toashomecare.AEuropeanresearchproject,theLIVINDIDHOMEstudy,investigatedwhatreformshadbeenintroducedinnineEuropeancountriesfocussingon2000/2010(Rostgaardetal.,2011).Theydefinedhomecareashelpwithbodilyanddomestictasksinthehomeoftherecipient.Theaimofthereformswastofundanddeliver: highqualitycarewhichmeets increasinglydiversifiedand individualisedneeds;anefficientandeffectiveprovisionmechanismandcostcontainment;astrongeruser-orientationintheprovisionofcare;anoptimalbalancebetweeninformalandformalcareandotherresources;findingthebestwaytoattractandretainhomeworkers.

FromanEnglishperspective(andthisonlycoveredEnglandasotherpartsoftheUKhaveslightlydifferentarrangements)researchrevealedtheproblemsofunderfunding(GlendinningandWilde,2011)and theneed forconsistentpolicies tosupportmorepeopleathome forlonger,inordertoavoid(oratleastdelay)entrytoresidentialcare.However,entitlementtostatutoryhomecareorcashinlieuhasbeenincreasinglyrestrictedtothosewiththehighest


needs.Forlowlevel/preventiveservices,olderpeoplemustrelyonvoluntaryorganisations.Theexpansionofpersonalbudgetsanddirectpaymentswasintendedtogivepeoplemorecontrolovertheircareservices(seesection7)andtostimulateamixedeconomyofsupply.Withtargetingofresourcesonfewerhouseholds,amarkethasdevelopedwitholderpeopleandtheirfamiliesbuyinginservicesfromprivateproviders,usingpersonalbudgetsanddirectpaymentsortheirownfunds.Therehasbeenagrowthinprivate(charitableandforprofit)providersbutthiscanbringproblemsoffragmentationandlackofregulation(GlendinningandWilde,2011,p.113).

FromaEuropeanperspectivetherearemanyofthesameissues.HowevertheLIVINDHOMEresearch showed that ‘Home care services, like long term care services in general, areembeddedwithinthetraditions,valuesandstructuresofindividualstatesandanyconvergencebetweentheapproachesofdifferentcountriesislikelytobeconstrainedbythesedifferentcontexts.Thustheapproachesofthecountriesinthisstudytoreforminghomecareservicesdiffer intheirstartingpoints,reformstrategiesandtimeframes’(Rostgaardetal.,2011,p.24).Englandisamongcountrieswithalonghistoryofbothlongtermresidentialandhomecareservicesandhasincreasinglyaimedtoencourageamarketinthesupplyanddeliveryof home care.While home care users can purchase services through personal budgets,mechanismsareneededtoensureservicequality;equity,equalityandeffectiveworkforcestrategiesneedincreasingattention.

c. New products including the role of technology

i. General

Technologyinitswidestsensecoversarangeofequipmentfromtheoldestsuchastelephonestothenewesti.e.robots.Equipmentcanhelpwithmobility,sensoryproblems,motorissues(suchastrembling),memoryandproblemssuchastheinabilitytocarryoutmorethanonetaskatatime.WerecognisethattheTechnologyStrategyBoardareincreasinglyusingthegeneric,orumbrella,term‘assistedliving’.Weuseavarietyofdefinitionswhicharespecifictoparticularcases.

Sometechnologyhasbeendevelopedspecificallyforolderand/ordisabledpeople.Startingwithsimplealarmswhichwerefoundinanevaluationin1984tobeusefulbutlimited(Tinker,1984)researchhasburgeoned.However,researchhasbeenverysmallscale.Thistechnologywasoftencalled‘disabilityequipment’or‘equipmentforthehandicapped’butnotonlyhasthetermchangedbutsohastheconcept.Itnowincludesmainstreamtechnology,suchasmobilephones,andmorespecificallydesignedproductssuchaswheelchairs.By2004,when theterm‘assistivetechnology’begantobeused,adefinitionbytheWorldHealthOrganisationheldthatitis‘Anumbrellatermforanydeviceoranytermthatallowsindividualstoperformtaskstheywouldotherwisebeunabletodoorincreasestheeaseandsafetywithwhichtaskcan be performed’ (WHO, 2004, p.10). Since then the specific terms of telemedicine andtelecarehaveincreasinglybeenused(seeTinker2011forafullerdiscussion).Wediscussanotheraspectoftechnology,homemodifications/aidsandadaptations,insection9d.

ii. Telemedicine

Telemedicinecanbedescribedasthedeliveryofhealthcareatdistance.DescribedbyWHOas‘Thepracticeofmedicalcareusinginteractiveaudiovisualanddatacommunications.Thisincludesthedeliveryofmedicalcare,diagnosis,consultationandtreatmentaswellashealtheducationandthetransferofmedicaldata’(quotedinTelecareNewsJuly2012).Theassumption


isthatthereisahealthprofessionaleitheratbothendsofthecommunication(suchasanursecommunicatingwithahospital)orapatientcommunicatingwitharemoteprofessionalsuchasanurse.Devicescanincludethoseformeasuringweight,bloodpressure,bloodglucoseandoxygensaturation.The largestrandomisedcontrol trialof telemedicine is therecentWholeSystemDemonstratortrial,financedbytheDepartmentofHealth.Subjectswereover6,000peopleinKent,CornwallandLBNewhamwithconditionssuchasdiabetes,chronicobstructivepulmonarydisease,heartdiseaseandheartfailurewhohadsocialneeds.Thetrialmeasuredtheeffectofusing remoteexchangeofdatabetweenpatientsandhealthcareprofessionaltoinformpatients’diagnosisandmanagement.Therewas:45%reductioninmortalityrates,20%reductioninemergencyadmissionsand15%reductioninaccidentsandemergencies.Alaterevaluationfoundlowermortalityandemergencyadmissionrates(Steventonetal.,2012).However,oneoftheauthorshasadvisedcaution(Dixon,2012)becausethetrialincludedthosewithlowrisks,theyhadextrasupport,theywereonlyfollowedupfor1yearandareductioninemergencyadmissionsdoesnotnecessarilymeananimprovementinqualityoflife.

A follow up of thosewho had declined to enter the trial found that such interventions astelemedicinewereoftenconsideredapotentialmajorthreattoidentityandexistingservicesuse by respondents. ‘Their feelings of uncertaintywere notmitigatedwhen the prospectsof installationof the trialwasdiscussedat homevisits’ (Sanders et al., 2012, p. 10).Theresearchersfounditwasimportantforpotentialrecipientstohavetheopportunitytodiscusstheirexpectationsandadditionalconcernsabouttechnologicalaspectsofequipmentandservicechangespriortoinstallation.Additionallythesefindingssuggesttheneedforcloserproximitybetweeninnovationdesignandevaluation,sothatcritical insightsmightusefullyfeedbackintodesignandimplementation,ensuinginterventionsare‘minimallydisruptive’forrecipients’(ibid,p.11).Arecentsystematicreviewofmethodologiesforassessingtelemedicineconcludedthat‘Largerandmorerigorouscontrolledstudiesincludingstandardisationofmethodologicalaspectsare recommended toproduceevidenceofunambiguous telemedicineservicesonpredefinedoutcomes’ (Ekeland,etal.,2012,p.8).Theyalsoadded that telemedicineandassessmentsarecomplexinterventionsandalso,tellingly,thatthereisneedtoengagewithstakeholders,includingpatients.

The need for innovation in the health and care sector ismotivated by current and futurepopulationageing,butalsoby theprojected lackofnursesorotherhealthstaff toassessandtreatagrowingnumberofpatients.Asaconsequence,governmentshaveworkedwiththehealthindustrytodesigntelehealth(telemedicine)interventions.Aseriesofstudieshasinvestigated cost effectiveness of these technologies.A research reviewing 22 studies onhometelehealthforindividualswithchronicdiseasesrevealsalargeuncertaintysurroundingtheeconomicoutcomesofinterventions(Polisenaetal.2010).Eventhoughalargemajorityofthereviewedstudiesshowedthathometelehealthsavedcosts,thelackofconsistencyineconomicevaluationsandheterogeneityofinterventions,populationandhealthcaresystemshavegeneratedmixedresults.

LegalandethicalconcernsabouttelehealthtechnologieshavebeenraisedbytheEuropeanGrouponEthicsinScienceandNewTechnologies(EGE).Theyindicatepotentialproblemswith thepervasivenessofa technology, lossof trust indoctor/patient relationships, threatstoprivacyandsecurityofpersonalhealthdata, lackofadequate infrastructureorcapacitytounderstandandmanipulate technology.Although fewpatientsexpressedconcernaboutprivacy,theotherdrawbacksoftelehealthmayalsoapplytotelecareandsmart(orambient-assisted)technologies.


iii. Telecareincludingalarms

Telecarereferstocareprovidedremotelytoapersonathomeandhasbeendescribedbyaleadingexpertasthecontinuous,automaticandremotemonitoringofrealtimeemergenciesand lifestyle changesover time inorder tomanage the risksassociatedwith independentliving(Hands,July2012).Forexample,sensorscanmonitorthesecurityandsafetyofolderpeoplebyautomaticallydetectingaproblemandnotifyingemergencies to theappropriatestaff.Oneof theoldest formsof technology isalarmsandoneof thefirstevaluations tookplace inEngland in1984 (Tinker,1984).Alarmsare themain typeof technologyused fortelecareinthehome(KubitschkeandCullen,2010).

An analysis of the English Longitudinal Study of Ageing (ELSA) – a panel study of people aged50andover,foundthat in2008justover2%hadapersonalalarmandjustover4%hadwhattheycalledan‘alertingdevice’fittedtotheirproperty(RossandLloyd,2012,p.4).Asubsequentpolicyanalysisestimated that therewerearound4.2millionpotentialusers,ofwhom2.5million(about60%) livedaloneandcouldbeconsideredahigherrisk(Lloyd,2012,p.3).Thisstudyalso foundthataroundhalfofallpersonalalarmuserspaid for theequipmentthemselvesandtheequivalentfigureforalertingdeviceuserswasaround31%.Recommendationsofthestudyincludedincreasingthescaleofuseoftelecare,despitethecost, promoting its use among informal carers, families and professionals, deploying thedisability benefits system, buildingmobile phones into clear policy and involving theNHS(whichmayhaveagreaterroleinleadingcommissioningandfundinginthefuture).

Astudyofcarershadfoundadvantagesoftelecareforthem.Theseincludedreducingstressandworry,improvingtheirsleep,andenablingthemtohavealifeoutsidecaring(CarersUK,2012).CarersUKurgedmainstreamingoftechnology,sothattherewouldbeanautomaticcheckwhethertechnologywasappropriate.Growingevidencefromolderpeopleabouttheusabilityoftechnologyshowsitmustbereliable,efficient,safeandsimple(seeforexampleMcCreadieandTinker,2005).Akeyrequirementisforinformation.

Practically all countries inEuropeprovide an alarm system, although the coverage variesamongcountries.Telecarehasgrown rapidly inpopularityaround theglobe,seenascosteffectiveandpotentiallyreducingcosts(DH,2005)aspopulationsage.Publicprovision,publicreimbursementandthepromotionofprivateinitiativestodevelopequipmentandsystemshavebeenidentifiedasthemaindriversofdevelopmentofsocialalarmsinEuropeancountries.Somebarriershavealsobeenidentified,namelythevariabilityinperceptionsoftheroleandvalueofsocialalarms,lackofpublicfundingorcostsubsidy,weakpublicpromotionofsocialalarms and limited technology infrastructure. Some countries such as theUK and Irelandhavedevelopedlargeprivatemarketsforsocialcarealarms,whichhaveledtoahighlevelofimplementation.OthercountriessuchasSwedenandDenmarkwithmuchgreaterpublicsocialcareprovisionhavelowerlevelsofimplementationandlessmarket-orientedtelecareservicesforolderpeople.

Responsibility for receiving alarm signals varies across countries in Europe, partly due totraditionsandvaluesofcare.Countrieswithhistoricallylittlepublicprovisionandhighrelianceoninformalcare(suchasGermanyorSpain)mainlyroutealarmsignalstofamilieswhocanrespond to the need for assistance. In contrast, countrieswith a strong tradition of publicprovisionofhealthandsocialcareservices(suchas theNordiccountries) routealarmstoprofessional staff.

Evidenceonthepositiveoutcomesforolderindividualsusingtelecaredevicesisinconsistent.For instance, Botsis and Hartvigsen reviewed papers on telecare for elderly individuals


suffering from chronic diseases (diabetes, dementia, heart failure, Alzheimer’s disease,etc.)andalsomobilityimpairments.Theyfoundlittleevidenceattheinternationallevelofastraightforwardrelationshipbetweenusingtelecaretechnologiesandimprovementofhealthoutcomes.Nonetheless,somestudiesreportedhighusersatisfactionamongindividualswithchronicconditionsas longas theyhadnocognitive impairments.Also,home telecarehasbeenfoundto improvehealthoutcomesof individualssufferingfromdiabetes,heart failureandchronicwounds.Ontheotherhand,telecarehasbeenfoundinappropriateforindividualswithseverecognitiveimpairmentsorinneedof24hourcare.Theseusershaddifficultiesinusingtheequipmentandhencefailedtomonitortheirhealthsuccessfully.Theauthorspointoutthatalargenumberofstudieshaveasmallsampleandthefollow-upperiodistooshorttogiveclear-cutresultsforuserhealthoutcomes.Similarly,amuchlargerreviewonhometelecareforfrailelderlypeopleandpatientswithchronicconditionsconductedbyBarlowetal.(2007)foundinconsistenteffectsofautomateddatatransmittinginanumberofobservationalstudies.Theyreviewedpaperswithrandomisedcontrolledtrialswithsamplesof80ormorepeopleusing technologies formonitoring,safetyandsecurityand informationandsupport.Mostofthepaperstheauthorsreviewed(98intotal)werefromtheUSorUKandfocussedon information and support outcomesand largely basedonpeoplewith diabetes or heartdisease.Studiesonvitalsignsmonitoringshowmixedresults;somestudiesstresstheclinicaloutcomes forpeoplewithchronicconditions,but thesefindingsareabsent inanumberoftrials.Also,whereassomestudiesshowsignificantpositiveclinicaloutcomesfromproactivetelephonesupportorcasemanagementwhere individualshavedepression,heartdisease,diabetes,asthma,COPDandfrailolderpeople,aseriesofothertrialsindicatesnorelationshipbetweenphonetelecareandclinicalimprovementsorqualityoflife.

Also,ArrasandNeveloff-Dublerpointoutthatresidentialtechnologiesresultin‘theextensionofmedical dominion to the heretofore private sphere of family and friends’ (as quoted inDemirisandHensel,2009,p.112).Moreover, telecaretechnologiesmighttie individualstotheirhomesratherthanpromotingtheirfreedom.Thedetachmentfromhumancontacthasnegativeoutcomesaspatientsfeelisolated.Oudshoorn(2012)reflectsontheimportanceofspaceandcareandusesthenotionof‘technogeography’.Telecaretechnologiesordevicescreate a disruption in the traditional exchangeof care between individuals.Whereas carehas traditionally been thought of asa relationshipor exchangebetween individuals in thesame space, telecare technologies redefine and modify physical space. There is then aphysical separation between health or social care professionals and the personwith careneeds. He also points out that users of telecare are responsible formonitoring their ownactivities,whichentailsreorganizationoftheirspaceandtheactivitiesathome(Oudshoorn,2012).Nevertheless,allthesetechnologiesmaybetakenforgrantedastheyaredevelopedandintroducedinwhatPost(2010,p.272)refersto‘hypercognitivesocieties’(inBrittainetal.,2010).Otherreportedproblemswithtelecaretechnologies,suchaslackofabilitytousetheequipmentprovidedorfailureinrespondingtovideoconferencecallsandreportingdatacorrectlyaresummarisedinBotsisandHartvigsen(2008).Notsurprisingly,thesedifficultiesorchallengesinmanipulatingtelecareequipmentwerefoundparticularlyacuteamongindividualswithcognitiveimpairments.

Telecare 2nd generation

Awiderdevelopmentofsensorsandalarmsincorporatesmoreelaboratedesign,includingthepotentialfortheusertocommunicatewithacarer.UseofsuchtechnologyvarieswidelyacrossEuropean countries, as public provision and funding play an important part in developingor initiating projects using specific technologies. However, a market in care and health


services has been rapidly developing and growing numbers of individuals are using such2ndgeneration telecare technologies.Somecountrieshaveestablishedprogrammesaimedat promoting advanced alarms and sensors in the home.Germany has recently investedin ‘Ageing Related Support Systems for Healthy and Independent Living’ (AltersgerechteAssistenzsystemefüreingesundesundunabhängigesLeben).Since2004,a telecarehomeservicehasbeenfullyoperationalinpartsofGermany.ArecentprojectnamedSOPHIAhasseveral systemsanddevicessuchasanage-friendly telephoneset, state-of-the-art alarmservicetechnologyincludingadvancedsensoringandactivitymonitoring,andvideotelephonyutilisingtheordinarytelevisionset.SOPHIA(seereferences–websiteICT&Ageing2012)hasbeendesignedtobeprovidedinconjunctionwithhousingorganisationsandhasbeenalreadyimplementedincitiessuchasWuppertal,BerlinandGelsenkirchen.Theyofferdifferentservicepackagesthatadjusttousers’needs(basic,security,contactandcomfort),allbasedonround-the-clockservices. InDenmarkadvanced telecarehasa long traditionbut isnotyetwidespread.Twoprojectspartlyfinancedby theEuropeanUnionhavebeen launched:PERSONA (Perceptive Spaces Promoting IndependentAgeing) and DREAMING (ElderlyFriendlyAlarmHandlingandMonitoring),bothintendedtoprolongtheindependenceofolderindividuals in their home. In Swedentherehavebeenvariousgovernmentprogrammesaimingatimprovingthequalityoflifeandindependenceoftheiroldercitizens;forinstance,technologyfortheelderly(Teknikföräldre,2012)developedCareIP(analarmunitwithGSMbackup)andthe‘Growingolder’(Hjalpmedelsinstitutet,2012)programmewithalargelistofprojectssuchas‘HousingandIT’.Assistivetechnologiesarefreeofchargeandmunicipalitiesareinresponsibleforthecorrectfunctioning.TelecareservicesinSpain (teleasistencia domiciliaria) areprovidedbothpubliclyandprivately.Thesystemhasbeeninplacesincetheearly1990sandhasexpandedgreatlysince2006.EachAutonomousCommunityisinchargeoffundingandprovidingtelecareservicessothatthelevelofprovisionvariesacrossregions.InItaly,telecareisnotcommonbutaprojectcurrentlyinplaceinRomeisthe‘NonPiuSoli’,whichsupportspeoplewithpsychologicalandmedicalsupportaswellasmealsonwheels.Italsoprovidestelehealthmonitoringtoover3,000individuals(KubitschkeandCullen,2010).Otherprojectsarethe‘Vallid’Argento’,atelecareprojectthatcoversapproximately250individuals,and the E-Care project in the province of Bologna and themunicipality of Ferrara.Muchwider implementationof telecareserviceshasoccurred inFrance.Telecareserviceshavebeenlongusedforolderindividualsanddevelopmentoftheseservicesisjointlydonewiththepublicandprivatesector.ThevariouscommercialprovidershavejoinedtheassociationAFRATA(Association Française de Téléassistance). In the Netherlands telecareservicesarelittleusedamongindividualsaged65andover,butpublicandprivateinitiativeshavebeendevelopingsince2000andaseriesofpilotprojectsandprogrammesarenowoperating.InPoland, telecareservicesarelittleusedandthereislittledevelopmentyetfromthepublicorprivateservices.

iv. Computersandinformationcommunicationstechnology

Underpinningalltele-technologyconceptsisInformationCommunicationsTechnology(ICT).Thiscanincludecomputersandtelevisions.Computershavenotbeendesignedwithanagerangeinmindalthoughthosewhoareyoungerwillhavebeenmoreexposedtothedigitalagewhichwillstandthemingoodsteadinthefuture.AEuropeanstudyin2000(Ekberg,2002)helpfullydivideditssampleof9,600olderpeopleacrossEuropeinto:thedigitallychallenged–thosewithnoexperienceandnointerestincomputers;thetechnologicallyopen-minded–non-userswhoarekeento learnabouttechnologyand/orwishtogaincomputerskills; theold-agebeginners–thosewithonlybasicskillsusingcomputerslessthanonceaweek;the


experienced front-runners–userswithadvancedcomputerskillsusingcomputersat leastonce aweek.TheSus-IT study found that some older people reveal exceptional tenacityin attempts to remain digitally connected despite age-related obstacles (see references –websiteSus-IT).

InthelastdecadetheEuropeanUnionhashadaparticularinterestinthepotentialforICTtoenableolderadultstoagewellathome.Initsintroductorydescription,theEuropeanproject‘Senior’statesthat ‘TechnologistsandpolicymakersknowthatInformationCommunicationTechnologies(ICT)coulddramaticallyimprovethelivingconditionsofolderpeople,andturnageingfromaneconomicburdenintoapotentiallyproductiveresource’(SENIORProject,2008).TheEuropeanEuropeanCommissionregardsICTasmeanstohelpindividualstoparticipateinsocietyandtheeconomyandasanopportunityto‘generatebenefitsforbusinessesandforeconomyandsocietyat large’ (COM,2007,p.4).However, itacknowledges therearechallengeswithICTforolderpeople,whetherduetotheirpersonalsituation,tocommunicatingwithhealthorsocialcareexpertsandcarersortothetechnicalaspects.

Agrowingbodyofreportsandacademicresearchpointoutthattechnologieshavethepotentialtoalleviatecareneeds,reducecosts,increaseautonomyandindividuals’qualitylife,improveindividuals’ safety and release informal carers from burdensome tasks . New terms suchas‘gerontechnology’and‘domotics’haveemergedtoencompasstheareaoftechnologicalapplicationsforolderadults.

Researchontheuseoftechnologiesfordependentolderindividualsindicatessomepositiveoutcomes, but also some challenges. The advantages that have been reported in recentstudiesemphasisethepotentialimpactoftechnologiestoimprovepeople’slivesormeetthepreferenceofindividualstoageinplacebyreducingtheeffectsoflossoffunctionalabilities.Also,casestudieshaveshowntheimpactoftechnologiesinincreasingthesenseofsafetyandsecurityofolderadultsintheireverydaylife(Peterssonetal.,2011).Yetlessattentionispaidtochallengesforolderpeopleinusingtechnologies.Inthenecessarydebateaboutthepotentialoftechnologiesforlong-termcare,thosedifficultiesmustberecognizedinordertoinformsolutions.Technologyhasbeenconvergingandmergingwitheverydayliferesultingin‘cyborgism’(Tomas,1995).Thishasdiffusedslowlyandunevenlyintoolderagegroups,to‘graythecyborg’(JoyceandMamo,2006).Therefore,assistivetechnologiesmustadapttotheolderindividualandnotviceversa(Wey,2004inBrittain2010).

v. Smart homes

Technologies havemultiple purposes andmeet a large variety of needs. Innovations canrangefromsimpledevicestocomplexnetworksofmonitoringandassistivedevices.So-called‘smarthomes’haveanetworkofsensorsandcamerasdistributedstrategically(Demiris and Hensel,2008).Thisinnovationisalsoknownas‘ambientintelligencetechnology’.Oneofthemaincharacteristicsofsmarthomesistheubiquityofcomputing.Amajorconcernwithsuchtechnologyisthetendencytotreatusersasobjects(Brittainetal.,2010).

Smart technologies are different from assistive technologies, although they share somecharacteristics (Tinker et al., 2003). This third generation of telecare technologies is stillveryundevelopedinEuropeandlittleevidenceofitsusefulnessforolderpeoplehasbeengathered so far.

According to Demiris and Hansel (2009) smart homes employ autonomous technologies,where theuserdoesnotneed tooperate,orbe trained touse, technologicaldevices; thisis substantially different from stand alone devices such as pressure cuffs, as usersmust


have some training to use these. Data gathered through sensors not only help to monitor individuals’ health conditions but also to ensure a prompt response in case of a crisis orchangeofphysiologicalormentalcapabilities.Thus,earlyinterventionisaresultofgatheringimportantbiomarkersthatmightsuggestneedforanintervention,contributingtopreventingill-healthandenhancingindividuals’autonomy.

VanHoofetal.(2011)carriedoutanassessmentofanambientintelligencedevice,theUAS-system.This‘consistsofmorethantenwirelesssensorsplacedinvariouspartsofthehomealongwithablackboxcontaininghardwarecomponentslocatedinthelivingroomormetercupboard’(vanHoofetal.,2011,p.312).Thissystemisdifferentfromtelecaretechnologyasindividualsdonothavetocarryanydevicewiththem.Thesensorsinstalledinthehomehelpdetectfalls.QualitativeinterviewswithclientsoftheproviderSZBS(StichtingZorgpaletBaarn-Soest)wereconductedprior to installing the technologyandagainsometime later.A largevarietyof individualswasselected,althoughacommoncharacteristicamong theselectedindividualswastheneedfor24hourssurveillance.Outofthe18individualsofthefirstround,12wereinterviewedinthesecondround.Theother6died,wereinstitutionalisedorcouldnotparticipateforotherreasons.ThereareclearadvantagesoftheUASsystemingivingusersagreatersenseofsecurityandsafetyastheiractivityismonitored,whichcanhelptoprotectthemincaseofahealthemergencyorthethreatofburglary.Anotherbenefitexpressedbytheusersisthe24-hourcareprovidedbythesystem.Almostallhadsomeemergencyresponsesystemssuchasaneck-wornpendant,wristbandoranaudio-voice.However,aftertheintroductionofthenewambienttechnologytheystoppedusingit.Furthermore,privacyissueswerenotamajorconcernexceptforonepersoninthestudy.Overall,theresultsoftheUAStechnologyshowpositiveoutcomesformaintainingindividuals’independenceintheirhomeandavoidinginstitutionalisation.Familiarisationhasbeenfoundtobevery important to instillconfidenceandtrustinusersaboutambientintelligencetechnology.Althoughsomeindividualsexpressedreservesabout the installation in theirhome, thesecondroundof interviewsshowedmorepositiveresponsesandoverallsupportoftheambienttechnology.SomeusersoftheUAS-systemhadconcerns,forexamplebeingtroubledbythenumberoffalsealarmsandothersoundsbutothersregardedfalsealarmsasasignthatthesystemwasfullyoperational.

AnotherinterestingfindingfromthevanHoofetal.(2011)researchstudyistheconclusionthatindividualswithcognitive impairmentsneedadifferentapproachwhenusing technologies.Thisisparticularly importantasithighlightsthedifficultiesindividualsmighthavetofaceintheireverydaylifewithothertechnologicaldevicesthatmightcreateconfusionandfear.Thus,technological literacy is a very important aspect to take into consideration when applyingtechnologies. Similarly, acknowledging extra difficulties that some individuals, especiallythosewhoarecognitivelyimpaired,mightfaceisnecessary.Whateverthebenefitsofambienttechnologies,theyarebestseenascomplementarytocarebyhumans.

Amajorproblemofassessingsmarthomesisthelackofcomparableresults.Thisisduetothe lowsupplyofsmarthome technologiesand the fact that the largemajorityofprojectsarestillinanexperimentalphase(Chanetal.,2008).Thereisverylittleresearchonsmarthomesandveryfewevaluationsoftheimpactofsmarthomesonindividuals’healthandwell-being.Areviewofliteratureonsmarthomeprojectsinternationally(atotalof21)byDemirisandHensel(2008)raisedsomeconcernsandchallengesbutnoneof theprojectsshowedevidenceoftheimpactofthesetechnologiesonhealthoutcomes.Anumberoftechnologicalchallengeshavebeendistinguishedintheliterature.Ethicalconsiderationsincludeissuesofprivacy, informedconsent,autonomy, lackof touchandobtrusiveness.The lackofhumantouchislinkedtotheuseoftelecaretechnologies(Cheeketal.,2005).Therearefearsthat


humaninteractionsmightbeseverelyreducedashealthcareprofessionalsareremote.Thus,thesubjectbecomesobjectifiedasthebodyisreformulatedintoaseriesofalarms,figuresandgraphs.Also,smarthomesdevicesaredistributedaroundthehomeoftheuser.Theseobjectsordevices(sensors,tv-top-box,etc.)arevisibletoexternalindividuals(relatives,friends,etc.)and thereforemight lead tostigmatizationof individualsas frailorvulnerable (DemirisandHensel,2009).

Anothermajor challenge related to incorporating technologies in the day to day activitiesconcernsindividuals’desiresandpreferences.Thesolutionsthattechnologiesoffermightnotbeinaccordancewithindividuals’needsorpreferences(Demiris,etal.,2008).Effortsmustbemadetomatchindividuals’needsandavailabletechnologyinaharmoniousandcomfortablefashion.A pilot study on attitudes, opinions and preferences of older adults and the useof technologies toage inplace found thatolderadultshaveverypositiveattitudes towardtheuseoftechnologiesbecauseoftheperceivedbenefitsontheirsafety,socialinteractionandsupport(Mahmoodetal.,2008).Thus,inconclusion,olderpeople’smotivationstousetechnologiesasaresourcetofeelsafeandprolongindependencearecrucialinacceptingandusingtechnologies.Thesedifferencesstemfrompersonalandsocialcircumstancessuchashealthcondition(s)orsocialsupportpossibilities.Moreover,individuals’preferencesvaryandthereismoreorlessstrongoppositiontowardstheuseoftechnology-basedassistivedevices.Possibilities touse technologiesarehighlycorrelatedwithhealthandcognitiveconditions.Individualsmustbefamiliarisedwiththetechnologyandsometimesmightneedtolearnhowtouseit.Thismightturnintoachallengeandproducegreaterstressonindividuals.

Experiences of smart homes or Ambient Assisted Living (AAL) technologies in Europe

Smart homes initiatives are still in an early stage in European countries.The fragmentedprovisionandsocialcaremodelstoprovideandpayforsmarthometechnologiesremainasbarriers for themainstreamdevelopmentof smarthomes inEurope.Nonetheless, severalcountries have already initiated pilot projects, but no peer-reviewed studies have beenpublishedyet.

The sparse and tentative development of smart homes are reflected inGermany where some projects such as SerCho or SmartHome Paderborn have introduced smart hometechnologiesbutnottargetedatolderpeople.Ontheotherhand,OFFISprojectisrunningtwoapartmentsequippedwithsmarttechnologiesdesignedforolderpeople.Morepilotprojectscanbe foundsuchas theDasMedialeHausor theSmartLiving inHattingen thatassists54peopleinareassuchashealth,safetyandsecurityorcomfort.Thelackofmainstreamsmarthomesmightbeexplainedbythelackofsystematicfundingandregulationsregardingwhopayswhat.However,theDutch governmenthasrecentlystartedaprogrammetofundsmarthomesolutionsforolderpeoplewithdementia;Smartwohnenis is a smart home pilot projectfordependentolderindividualstohelpmaintainindependenceathomeforaslongaspossible. In citiesacrossGermany, 65projectshavebeen launched,although resultsof users’ experiences have not been reported yet. Smart technologies inDenmark have been developing at a fast pace in the last year,with private providers beingmuchmorecommonthaninothercountriesinEurope.This,togetherwithpublicinvestment,hascreatedadynamicatmosphereforsmarthometechnologies.VariousprojectssuchastheVaerTrygproject,theProjecktDetGodeAeldrelivortheIntellicareInnovationsConsortiumhavebeencreated to identifyanddevelopequipmentandsystems to improve thequalityof lifeandindependenceofolderindividuals.Sweden has a very similar development of smart homes andassistivetechnologies.CountyCouncilsandMunicipalitiesareinchargeoffundingand


providingservicesforindividualswithdisabilities.RulesofeligibilityandfundingaredecidedbyCountyCouncilsandMunicipalities,which leads toagreat varietyacross thecountry.SmartBoisasmarthouseforpeoplewithdisabilitiessuchmobilityorcognitiveimpairmentsinSweden(seereferences-websiteDeafblindinternational).Theaimistomaintainindividuals’independenceforaslongaspossibleintheirhomethroughusingICTs.ThisstudyisembeddedwithintheSmartBoproject,ahome-basedtechnologyprojectaimedatolderindividualswithmobilityimpairmentsandcognitivedisabilities.Bycontrast,inSpain the implementation of smart technologies isvery low,although thereareoptionsavailable.Publicprovisionandfundingisnotavailable,whichputsbarrierstothedevelopmentandimplementationofthesetechnologies.SmarthomesandassistivetechnologieshaverecentlybeenpromotedinItaly. PublicsupporthasbeengrowingandexamplesofpublicfundingcanbefoundintheProvinceofTrentowheresmarthomesaresubsidised.Otherprojects implementedare theDomusProject(apartmentswithsmarttechnologiesforolderindividualsintheprovinceofArezzo)ortheProgettoDomotica(aprojectforthedevelopmentofsmartbuildings).Francehasamuchlargerparticipationofprivateproviders,localauthoritiesandhousingorganisationsinsmarthomesandAALinnovationthanSouthMediterraneancountries.However,theimplementationisstill lowand reachesa lownumberofolder individuals.Themainpilots inpracticearetheHISproject inGrenobleandapilotprojectcalledVill’Age(MEDeTIC,2012) inAlsace.TIISSADisaFrenchprojecttomonitorandfollow-uphomepatientswithchronicdiseasesorelderlyindividuals.Itaimsatpreventingfallsanddeclineinhealthstatus.Butlackofpublicfunding jeopardizesawider installationof smarthome technologies. In the Netherlands,contrarytothelackofpublicinvolvementindevelopingtelecareservices,smarthomesandassistivetechnologiesarelargelypromotedbypublicauthorities.Alreadyin1994amodelhousewasbuiltinEindhoven.SmarthomesandassistivetechnologiesinPolandhavebeenlittledeveloped.AlthoughitisnowapartnerintheEuropeanProgrammeAmbientAssistedLivingJointProgramme,pilotprojectsand implementationof these technologies forolderindividualsarepracticallynon-existent.

InthelastdecadetheEuropeanUnionthroughthe7thFrameworkProgrammehasboosteda wide range of programmes aimed at promoting independent lifestyles through using technologies.Thei2010initiativedocumentcalledforMemberStatestofacilitatetheuptakeoftechnologiesforageingwellathome.Amongtheprojectsrecentlydevelopedare:ENABLE (assistive technologyaimedat improvingqualityof lifeof individualswithmild tomoderatedementia),SOCIABLE(seereferences)isacomputingprogrammeforICTassistedcognitivetraining and social activation targeting individuals who have no cognitive impairments toindividuals suffering from mild Alzheimer’s disease) or the Ambient Assisted Living-JointProgramme:thisisanambientassistedlivingprojectaimedatpromotingnationalresearchactivitiestobuildprojectsforthefuturelong-termcare.ThefundingisnationalandEuropean.Therehavebeenfourcallsforresearchproposalswithalargenumberofprojectsineachcall.

d. Services working together

The Department of Health (DH) paper Interim measures for Patient Experience at the Interfaces between NHS services(DH,2012b)says‘Numerousrecentstudiesandexternalreports,suchastheFutureForumKing’sfund,NuffieldTrustandtheHealthSelectCommittee14th report onsocialcare,havedemonstratedthereiscurrentlymuchinterestinintegration.Theyhavehighlighted how fragmented care is a concern formany people in health and social care,especiallythosewhohavemultiple,chronicconditionsandlong-termneedswhoneedcarefromamyriadofNHSandsocialcareservices’(DH,2012b,p.5).


Therehas longbeenapractice (in theoryat least)ofhealthandsocialservicesprovidersworkingtogetherandendlessresearchonhowthismaybeaccomplishedindifferentsituationsandwithdifferentgroups.Arecentsystematicreviewoftheeffectivenessofinter-professionalworkingforolderpeoplelivinginthecommunityfoundthat,whilethereispolicycommitmenttocloserworkingbetweenprofessionalstoimprovehealthandsocialcarethebenefitswerepoorly understood (Trivedi et al., 2012). It did, however, find thatmore than half reportedimprovedhealth/functional/clinicalandprocessoutcomeswhileonlyafewreportedfavourablecareroutcomes.

Itiseasytolookatcurrentpatternsofcareandorganisations.Howeverthiscandatemanyrecommendations.Thecurrentplannedarrangementsareanexampleofthis.TheabolitionofStrategicHealthAuthoritiesandPrimaryCareTrustsand their replacementwithClinicalCommissioningGroups (led byGPs)willmean new groupings for social services (and ofcoursehousing) to linkwith. Inaddition there is thenew localauthorities’ responsibility forPublicHealth. Inaddition therewillbeHealthandWellbeingBoards,LocalJointStrategicNeedsAssessment and Joint Health andWellbeing Strategies. This pattern in late 2012showshowthepolicylandscapecanchange.Aco-ordinatedapproachhasbeenadoptedbyTorbaywherefrontlineteamshavebeenalignedwiththoseinGeneralPractice(Morris,2012,p. 262).

Morehelpfulprobablyistolookatthesimplermechanisms.Thesecanbesummedupas:jointuseofpooledbudgets; jointstaffappointments; jointcommittees;mergingofdepartments;merging of organisations; sharing premises; the growth of multidisciplinary teams; dignitychampions;singleassessmentofclients/patients.However,therehasbeenmuchlessattentionpaidtotheneedforhousingtobebroughtintotheselinks(seeTinker,2012andsection9).

Ageriatrician,JackieMorris,in‘Integratedcareforfrailolderpeople2012:aclinicaloverview’argues that ‘The key components of effective integrated care are shared knowledge,understanding, training and support. Equally important are shared objectives, leadershipandgovernance’ (Morris,2012,p.257).While ‘nosingleelementby itselfhasbeenshowntobeeffective,butthestrongestpredictorsofsuccesshavebeentheactiveinvolvementofphysicians,theuseofmultidisciplinarycareandcasemanagementwithaccesstoarangeofhealthandsocialcare’(ibid,p.257).Itisimportanttochangetheperceptionsofservicesforolderpeopleandthoseworkingwiththem.Manyprofessionalsworkingwitholderpeoplehavepoorworkingconditions,lowstatusandlittletraining.

11. The special cases of people with dementia, other forms of cognitive im-pairment and those who are dyinga. Cognitive decline and dementia

Progressive cognitive disorders are linked to loss of ability to carry out everyday tasks,problemswithmemoryandcommunications.Peoplearelikelytoneedhelpwiththesetasksandtobekeptsafei.e.nottowander.

TheDepartmentofHealthsaythatthetotalannualcostsofdementiaare£17billion.41%ofthiswasaccommodation,theestimatedcostsforinformalcaresupportandlostemployment36%, social care services 15% and 8% was for healthcare. Numbers with dementia arepredictedtorisefrom680,000in2007to1.01millionby2051.Thecostof‘LongtermcareforolderpeoplewithcognitiveimpairmentinEnglandcouldrisefrom£5.4billionto£16.7billionbetween2002and2031’(DH,2011b,p.19).


Diagnosisiskey.TheAll-PartyParliamentaryGrouponDementia‘Unlockingdiagnosis’inJuly2012quotesearlierevidencefromtheDepartmentofHealthin2009showingthebenefitsofearlydiagnosistoindividualsandfamilies(DH,2009b).Andanotherstudyshowedthefinancialbenefitsofearlydiagnosisindelayingadmissiontohospitalandtocarehomes(DH,2009a).

‘Evidence from animal studies, observational research, and randomised trials show thatexercisecanreducecognitivedecline,andthechangeinactivityneednotbegreat.ASwedishstudyfoundthatleisuretimephysicalactivityatleasttwiceweeklyinmidlifewasassociatedwitha50%reductionindementia.YetinEnglandonly40%ofmiddleagedpeoplehavetaken30minutesofmoderateexerciseinthepreviousmonth.Awellconductedmeta-analysisalsofound that smoking is associatedwith dementia.Evidence that social engagement delayscognitivedeclineispromisingbutasyetinconclusive.However,arecentstudyindicatesthatdelayedretirementmaydefertheonsetofdementia’(Doyleetal.,2009).

Whenpeoplehavedementiaresearchshowsthatspecialhousingissuccessfulandthishasbeenknownfora longtime(seeTinker,1999).Extracarehousingwheretheolderpersonhastheirownaccommodationbutmealsand24hourhelpisprovidedcanenablethemtoliveadignifiedlife. Inadditiontechnologycanhelp.Areview‘Assistivetechnologyasameansof supportingpeoplewithdementia’ (Bonner& Idris, ed.Porteus, 2012) shows that it canhelp with reminders and prompts, for safety, reminiscence and entertainment. It can alsoreducestressoncarers.Thepublicationgivesmanyexamplesof interventionswhich lookverypromising.AmongthemareonesundertheDesignCouncilchallenge–‘LivingWellwithDementiaTechnologyInnovationChallenge’.Theseinclude‘DementiaDog’whichprovidescompanionship but also prompts the owner to do certain things such as takemedication.Anotherwas‘Buddi-Band’whichisawristbandwhichenablesthepersontobelocatedandtocallforhelp.Theseawaitevaluationasdoanumberofotherexamples.

Technologycanhavearoleforpeoplewithdementia.Devicestoensuresafetysuchasturningoffdangerousdevicessuchascookersandmonitorsbysurveillanceareusefulalthoughthereareethicalissuestodowiththelatter.

b. People who are dying

CareattheendoflifeisbecomingofincreasingimportanceandonewhichtheGovernmentispayingmoreattentionto.In2008theNationalAuditOffice(NAO)onendoflifecarefoundthatthemajorityofpeoplewouldprefernottodieinhospitalbutthattherewasalackofalternativeprovision(NAO,2008).DHproducedEnd of Life Care Strategywhichwasintendedtochangethecultureandexperienceofdying(DH,2008).

A recent study on people who are dying, including those with dementia, showed a clearpreferencefordyingathome.Thekeyroleofhomecare,eithertosupportfamilycareortoprovidedirectcare,wouldensurethatmorepatientswithadvancednon-malignantconditionsdieathome(Gott,2004).

Specific adviceonEndof LifeCare inExtraHousinghasbeenproducedand this showshowmanagersandcareandsupportworkers inextracarehousingcan talkaboutendoflife care with residents to ensure that their wishes and preferences aremet (Kneale, ed.Henry&Porteus,2012).Thereportconcluded‘Dyingathomeisarealisticoptionforextracareresidents if that is theirchoice.However,achieving thisambition formany individualsrequiressensitivediscussion,goodcareandsupportplanningandeffectivecommunicationbetweensupportstaffandtheindividualandtheirfamily.Italsomeansworkingcloselywithalltheprofessionalsandorganisationsinvolvedintheircareandsupport’(Kneale,ed.Henry


&Porteus,2012,p.3).Whileanotherstudyhasfoundthatresidentsmayhavetomoveon,especiallythosewhodevelopdementia(Dutton,2012)althoughanotherstudyclaimedthatthiswasmoreofafundingissuesthanacareone(PannellandBlood,2011).Thevalueoflearningresourcesforendoflifecareinextracaresettingshasshownthevalueofimprovingcommissioningandcareplanningandthecoordinationofcareaswellastheimportanceoftrainingforstaff(Jonesetal.,2011).

12. Legal and ethical issuesa. Legal issues including human rights

Therearemany influencesonsocialpolicy including increasinglysupranationalandglobalinstitutions.ItismostapparentintheEuropeanUnion.In1988theEuropeanSocialCharterhadasection(4)‘Therightsofelderlypersonsforsocialprotection’.Thisincludedrightstoremainfullmembersofsocietyandtochoosetheirlifestylesandleadindependentlivesintheirfamiliarsurroundingsforaslongastheywishandareable,andtheprovisionofhousingsuitedtotheirneedsandsupportforadaptingit.AttheheartoftheactionsoftheEuropeanCommissionhavebeenanti-discriminationlaws.BasedontheEuropeanConventiononHumanRights,theHumanRightsActintheUKdatesfrom1998.Neverthelessagediscriminationstillexistsasdoeselderabuseandmistreatment.HowtheHumanRightsActcanaffectpolicyisshowninrecentHighCourtjudgments.Forexample,SharedLivesareprotectedsothatno-onecanbemovedfromtheirfamilyhomeagainsttheirwishes,withoutaMentalCapacityActassessment.Anotherexample isoverPersonalisationpolicies.These,whileaiming toenhancechoiceandcontrol,placeonerouslegalresponsibilitiesonolderpeoplewhouseaDirectPaymenttoemployapersonalcareassistant.Theseincludecomplyingwithallthelegalobligationsofanemployer,includingdealingcorrectlywithNationalInsurancecontributionsandtaxmatters;alsowiththeemployee’srightstosickness,maternityorannualleaveandensuringsafeworkingconditions.HavingDirectPaymentscouldalsoopenupnewpossibilitiesforfinancialabuseoftheolderperson.

Whilethelawmayprovidesomehelptoolderpeople,wearguethatmanyoftheissueswehaveraisedsuchastheneedformoretrainingofstaffwouldgoalongwaytohelpsupportthe human rights of older people.

b. Ethical issues

Thisreportraisesmanyethical issues,someofwhicharebeyondthescopeofthis limitedstudy.Oneisintergenerationalequity.Itmaybeheldthatwehavearguedformoreresourcesforolderpeopleandinsomecircumstancesthisistrue.Howeverthetenorofourreportisthatinthelongrunmoneywillbesaved.

Therearespecificethicalissuestodowithtechnology.Theseincludeconsent,dataprotectionandstigma.TheInternationalLongevityCentre(ILC)reportdetailsethicalissuesonincreaseduseof technology incarehomeswhichareequallyapplicabletocareathome(ILC,2012,seealsoTinker,2011).Therearealsomanyethicalissuestodowithpeoplewithdementiabut again these are also relevant to all older people.These issues havebeen thoroughlyexaminedbytheNuffieldCouncilonBioethicsinDementia: Ethical issues(NuffieldCouncil,2009).At the heart of the issue is ‘balancing safetywith freedom, decidingwhat is in thebestinterestsofthepersonwithdementiaandrecognisingthattheneedsofthepersonwithdementiamaysometimesconflictwiththeneedsofothers’.Theyhaveaspecialsectionontheuseofassistivetechnologiesinwhichtheypointtotheadvantagesinpromotingaperson’s


autonomyandwellbeingbyenablingthemtolivemorefreelyandindependentlyforlonger.But theyalsopoint to ‘possibledetrimentaleffectssuchasthe intrusiononprivacy,stigma(particularlywithreferencetotrackingdevices)andtheriskofreducedhumancontact.Thereisalsothedilemmaoverwhetherthepersonhasthecapacitytomakedecisionthemselvesand,ifnot,thecriteriaforgivingthemtechnology.

13. What can be done?a. Changing public attitudes

Although it isof coursedesirable forstaff toknowaboutservicesandpractical things likehandlingpeople,somethingmoreradicalisneeded.Aradicalshiftinsocietyisneededthatno longer sees older people as recipients of care but recognises their great contributionssuchastofamilies,neighboursandsociety.Partofthisisboundupwiththelowstatusthatisconnectedtoservicesforolderpeople(Cornwell,2012).Somearguethatthereisaneedforachangeintheexpectationsofwhatthestateshouldprovide(Corry,2012).

b. Drawing on the strengths of older people themselves

Discussinglongtermconditions,DHdiscussesself-care/shareddecisionmaking.‘Empoweringpatients to maximize self-management and choice, through shared decision making andmotivationalinterviewing.Thisincludesensuringthat:(1)patientsengageinshareddecisionmaking to co-produce a care plan, (2) both patients and their carers have access to theappropriateinformationabouthowtomanagetheircondition,(3)patientsareactiveparticipantsinalldecisionsabouttheircare(‘nodecisionaboutmewithoutme’)and(4)thatpatientshaveaccesstotheirmedicalrecords.Thisrequiresaculturalshiftforbothpatientsandclinicians,wherebytheimportanceandvalueofselfcareandpatienteducationaretrulyunderstoodandwhereshareddecisionmakingandsupportedselfcareareseenasintegralelementsofLTCmanagement’(DH,2012a,p,21).

Arelativelynewconceptisthatof‘LivingLabs’whichcaninvolveoftheinvolvementofpeopleinallstagesofaservice.ForexampleJeremyPorteus(Porteus,2010)hasarguedthecaseforthisapproachwithextracarehousing.Notonlywillfullengagementwitholderpeopleandtheirfamiliesoffer‘atailoredpersonalserviceandcreatingasmarterandmoredynamiccustomer-tobusinessrelationship. Intheeconomicclimate,weareoperating in, thismustmakegoodbusinesssense too’ (ibid,p.1).Apreviousstudyonshelteredhousinghadhighlighted thatresidentsatisfactionandwell-beingincreasedasaresultofeffectiveinvolvementandledtoagreatersenseofownershipbyresidentsandstaff,jobsatisfactionhadincreasedandlisteningtoresidentsfeedbackhadimprovedservicesandtheplanningoffutureneeds.(Hasleretal.,2010).PorteusquotestheEuropeanNetworkofLivingLabsas‘Alivinglabisareal-lifetestandexperimentationenvironmentwhereusersandproducersco-create innovations.LivingLabshavebeencharacterisedbytheEuropeanCommissionasPublic-Private-People-Partnershipsfor user-driven innovations. It says that a ‘LivingLab’ is involved in fourmainactivities:Co–creation: co-design by users and producers; Exploration: discovering emerging users,behaviours and market opportunities; Experimentation: implementing the scenarios withincommunitiesofusers;evaluation:assessmentsofconcepts,productsandservicesaccordingtosocio-ergonomic,socio-cognitiveandsocio-economiccriteria’(BestandPorteus,2012,p.2).

Atabasiclevel,olderpeoplemakeagreatandgrowingcontributionfinanciallytotheeconomyand through laterworking.Many in thisgenerationhavebeenable to saveandmayhaveconsiderablefinancialresources.Astudy‘GoldAgePensioners:ValuingtheSocio-economic


contributionofolderpeopleintheUK’(WRVS,2011)producedevidencetosupportthis.Apartfromcontributionstotaxestheresearchfoundthatolderpeopleprovidedvaluableandincreasingfinancialcontributionstosocietyincludingbytheirconsiderablespendingpower(itisestimatedthatolderconsumersaged65andoverspendonaveragearound£100bnp.a(AgeUkquotedinSilcockandSinclair,2012,p.6),theprovisionofsocialcaretootherolderpeople,theaddedvalueoftheirvolunteeringandtheircontributiontocharityandotherdonations.

c. Changing policies

i. Looking for leaders

Weneedleaders/agentsofchange.PerhapsthenewemphasisonPublicHealthmayhaveaneffect.AtthetopisPublicHealthEnglandwhichisanewbodywhichwillbeestablishedintheDHtosettheoverallobjectiveforpublichealth.ItwillbeaccountabletotheSecretaryofStateforHealth.PublicmentalhealthhasbeendefinedbyDHas‘Theartandscienceofpromotingwellbeingandequalityandpreventingmentalillhealththroughpopulationbasedinterventionstoreduceriskandpromoteprotective,evidencebasedinterventionstoimprovephysicalandmentalwellbeingandcreateflourishing,connectedindividuals(DH,2011a,p.89).

ii. Agediscrimination

Therehaslongbeenadviceaboutnotdiscriminatingonthebasisofageinhealthservices(see for example the DH ‘National Service Framework for Older People’) and provisionsforbiddingagediscriminationinthefieldofemploymentarealreadyinforce(sinceOctober2008).However, from1October2012theGovernmentwill fully implementthebanonagediscriminationenshrinedintheEqualityAct2010givingprotectionagainstagediscriminationinservicesprovidedbypublic,privateandthirdsectors,clubsandassociationsintheexerciseoftheirpublicfunctions.TheEqualityAct2010statesthat‘chronologicalagemustnotbeusedasasubstituteforanindividualassessmentofaperson’sneeds’.

iii. Improving health

Measurestoimprovehealthwouldkeepsomepeopleoutofinstitutions.‘Bothepidemiologicalandbiologicalresearchshowsthatthepaceatwhichpeopleage(asdeterminedbyphysiology)canbemodified.Manyoftheactionsnecessaryarethosethatwouldformpartofanybroadlybasedstrategytopromotepopulationhealth,suchasmeasurestoreducesmoking,improvedietandincreasephysicalactivity.Theresultinghealthierlifestylescanslowtheprocessesinvolvedinmanycommondisordersofoldagesuchasischaemicheartdisease’(Doyleetal.,2009).

Formanyolderpeopleanevent likeafallcanprovecatastrophicandbetheforerunnertohospitalisationandasteadydeclineinphysicalandmentalabilities.Measurestopreventsuchaneventareurgentlyneeded.However,preventionisnotalwaysanexcitingpolicywhenmorehighprofileactionsaremoreappealing.Thereisplentyofevidencethatleadtothisbeingapriorityinthefuture.Forexamplemanyexamplesaregiveninaresearchpaper‘Pathwaystoprevention’that includehospitaldischargeschemesthathavehelpedspeeduppatients’releasewhichhavesavedsocialcarebudgetsat least£120perday,adaptations thatcanreducetheneedfordailyvisitsandreducedorremovedtheneedsforhomecare(savingsrangefrom£1,200to£29,000peryear)andarapidresponsesadaptationschemethatsavedtheNHS£7.50forevery£1spent(quotedinStirling,2011,p,5).

Some government initiatives are small scale though well intentioned. For example localauthoritieshavebeeninvitedtoapplyforatotalof£20millionforafundtomakethehomesofolderpeoplewarmer(DH,2009a).


Therearemanyotherexamplesofpreventiveservicessuchasschemestopreventhospitaladmission and readmission and falls prevention services all ofwhichwould savemoneyand help older people. It is also important to recognisemental health problems such asdepression and dementia.

iv. Ahigherprofileforhousing

Wehavepointedtotheneglectofhousingandwouldliketomakethecaseformoreattentiontobepaidtothis importantservicebothnationallyand locally.There isextensiveresearchwhichshows thatsimplemeasuressuchashousingadaptations,practicalhousing relatedsupport and re-ablement can play a major role in preventing entry to an institution (e.g.UniversityofBirmingham2010).Oneencouragingrecent initiative is thesettingupofnewpublic health functions in local government. ‘FromApril 2013 local authorities will have akeyroleinimprovingthehealthoftheirlocalpopulation,workinginpartnershipwithclinicalcommissioninggroups,andothers, throughhealthandwellbeingboards in their localities.Theywill be responsible for commissioning and collaborating on a range of public healthservices and for advising the commissioners of localNHS services.Health andwellbeingboardsarebeingestablishedbyLAsinpartnershipwithNHSclinicalcommissioninggroupsandothers.Theboardswillberesponsibleforpreparingcomprehensivejointstrategyneedsassessmentsandjointhealthandwellbeingstrategies,andwillhavearoleincommissioningplanstotakethoseassessmentsandstrategiesproperlyintoaccount’(DH,2012c,p.1).Theencouragingthingisthattheygoontostatetheclearlinkwithhousing‘Theseimportantnewresponsibilitiesinlocalgovernmentwilljoinexistingrolesthatsubstantiallyinfluencethehealthoflocalpeople,forexampleenvironment,housing,economicdevelopmentandregeneration,educationandcareservices’(ibid).

Thereisastronglinkbetweenphysicallongtermconditionsandpsychologicaldistress/disorder(DH,2012a,p.23).Thelatteraremuchmorecommonthanphysicalproblems.Peoplewiththeseconditionsaremorelikelytodevelopotherlongtermconditions.Untreateddepressionleadstoworsehealthoutcomesandincreasedhealthcarespending(ibid).Thereforepreventingand/ortreatingmentalhealthproblemswouldbeagoodinvestment.

d. Encouraging new providers

Withachangeinemphasisofthewelfarestatethereisneedforarethinkabouttherespectiveroles of organisations. With the voluntary sector taking over some roles, such as housingassociationsfromlocalauthorities,theprivatesectorcanhavearoletoplaytoo.Thishasalreadyhappenedforextracarehousingandarecentstudystatedthat‘Policymakersshouldrecogniseandencourageprivatesectordevelopmentofextracarehousing’(Kneale,2011,p.133).Therehasalreadybeena largeexpansionofprivatehomecare.However, it is important thatsmallprovidershaveacceptablestandards.Olderpeoplechoosingfromprivateproviderswithmoreoftheirownresourcessuchaspersonalbudgetspresentsachallengetosocietyinmaintainingstandardsaswellastofamilies.AninterestingcasefornotforprofitproviderswasmadebyanindividualinHullTelecarewhofeltthattherewasaneedforaHighStreetpresenceof‘notforprofitshopswithasocialconscience’.Hemaintainsthatonceadevicebecomesa‘health’or‘care’devicecompaniescan‘addacoupleofzeros’totheprice(BestandPorteus,2012,p.11).

e. Changing practice including new ways of doing things

AninterestingapproachhasbeenrecommendedforpeoplewithmentalhealthproblemsinaDH(2011b,p.12)publicationwhichisbasedontheeconomiccaseforpolicies.Itincluded‘theacutecarepathway’whichhighlightsallthesteps/interventionsthatcanbetakenbefore


anyone isadmittedtoan institution.Similarlycarepathwaysandwaysofnavigatingthemareoneofthemeansidentifiedforthehousingsector indeliveringtheNationalDementiaStrategy(Garwood,2008).

f. Staff - changing attitudes and training

Agroupofexpertshaverecentlyclaimedthat‘Themajorityofstaffprovidingthephysicalandemotionalcareforolderpeopleinhospitalandathomehavefewqualifications,areonlowpayandhavepoorworkingconditions’(Cornwell,2012,p.1).

Inadditionmanyhealthprofessionalswereeducatedandtrainedforadifferentera.Ageriatricianwritingaboutstaffinalltypesofemploymentworkingwitholderpeoplehasrecentlysaid‘Staffrecruitmentmustselectforcandidateswhocandemonstratetheirabilitytodeliverhumaneandcompassionatecare.Onceappointedtheyrequiresupport,understandingandtraining.Treatingthemwithdignity,kindnessandrespectwillmakeiteasierforthemtodothesamefortheirclients’(Morris,2012,p.262).

There is need for strong professional and clinical leadership and workforce developmentto deliver bothold andnewservices.Agroupof experts haveargued that ‘Thequality ofinteractionsandrelationshipsbetweenfrailolderpeopleandprofessionalcaregiversisshapedby the teamand theorganisational ‘climate’ofcare.Effectivemanagersandstaffworkinginasupportiveorganisationalcontextcouldremedymanyof theproblemsencounteredbypatientsandcarersinboththeirownhomesandhospital.Actionscanbetakenatdifferentlevelsofthesystemtodealwiththisissue,butwebelievethattheresponsibilityforqualityofcareandoutcomesforpatientsisfirmlylocatedattheleveloftheteam.Themainpurposeofdecisionsanddecisionstakenatotherlevelsofthesystemshouldbetoenablefrontlinestaffdotheirwork’(Cornwell,2012,p.1).Theworkforceatalllevelsneedstobesuitablyequippedandtrained.They‘needtobesupportedtodelivermorepersonalisedcareandtounderstandtheculturechangeneededtosupportpeopletounderstandtheirconditionandtofeelmoreincontrol.Thismeanschangingpartoftheirrolefrombeingexpert‘fixers’tobecomingcoachesandenablers’(DH,2012a,p.32).

Itisimportanttopromotetherecruitment,trainingandretentionofworkersincludingrecruitmentandretentionstrategies,professionalisationandqualificationsandtheroleofmigrantworkers(seeRostgaard,2011,p.27forhomecareworkers).Achangeofrolemaybenecessary.Forexamplehomecarers inSwedenwereoriginallyhousewives(manyofwhomwereenteringthe labourmarketratherthanstayingathome)butbecamemoreprofessional(Larssonetal.,2005).

Staffingissuesalsoneedtobeaddressedbyprofessionalbodies.Theexpertgroupthatmetin2011recommendedthat ‘professionalbodiesandthosebodiesresponsibleforeducationandtraining,revalidationandappraisaldevelopstrategiestochangetheirperceptionsofolderpeople’sservicesandtocreatethefutureworkforcethatolderpeopleneed’(Cornwell,2012,p.7).

g. Paying for services and products

Althoughour focus isnotontheeconomiccaseforachangein longtermcarewecannotignorethefinancialaspects.Ifservices,whetherpubliclyorprivately,areprovidedtheyhavetobepaidfor.Manypeoplehave,ofcourse,paidprivatelysuchasforcareinanursinghomeorprivatedomiciliarycare.Iftheserviceisgoodthenpeoplewillwanttouseit.Wewouldliketoseemoreencouragementforthis.However,formanyotherstheywillnothavetheresourcesandwillneedsomehelpfromthestate.WebelievethattheelectoratewouldbepreparedtopayforaservicesuchasLongTermCareif it isseentodeliveroneofhighquality.There


areadvantagestoowithauniformservicebeingdeliveredthatensuresacertainstandard.However,theincreasinguseofmoneybeinggivendirectlytotheuserscanhaveadvantages.Itenablespersonalchoiceratherthana‘onesizefitsall’approach.

Grantstoenableproviderstoworktogetherarenotnew.Forexamplepooledbudgetshavebeeninexistenceformanyyears.Theyallowlocalandhealthauthoritiestopooltheirbudgetsandthenmakejointdecisionsabouthowaservicemaybeprovided.Someofthenewergrantshavepotentialforallowingthepaymentforservices.UnderthelastGovernment‘TotalPlace:awholeareaapproachtopublicservices’HMTreasuryandtheDepartmentofCommunitiesandLocalGovernment(DCLG)inMarch2010announcedtheresultsof13pilotprojectswhichtheyclaimhavedemonstrated‘realserviceimprovementsandsavingstobemade’(HMTreasuryandDCLGp.5).Thiswasthroughspecialgrantsforspecificareasofworkincludingservicesforolderpeople.Butamountsareoftensmallandforpilotprojectsonly.‘TotalPlace’requires‘theactiveengagementofGovernmentandalllocalservicedeliverybodies.IpresentaseriesofcommitmentsthatwillgivegreaterfreedomandflexibilitytosupportanewrelationshipbetweenGovernmentandplaces.Thefeaturesofthisnewrelationshipwillinclude:Freedomfromcentralperformanceandfinancialcontrols;freedomsandincentivesforlocalcollaboration;Freedomtoinvestinprevention;andFreedomtodrivegrowth’(ibid,p.5).Budgetdecisionsfollowingthisincludedalooseningofcentralcontrolsuchasde-ringfencingof£1.3billionoflocalauthoritygrantsfrom2011–2012andtheremovalofanumberofnationalindicators.UnderthecurrentGovernment therehasbeenanemphasisonCommunityBudgetswitha similar emphasisonlocalinvolvementwithWholePlacebudgetsatamorestrategiclevelandNeighbourhoodbudgetsatamorelocallevel.Botharedesignedtobringtogetherserviceproviders.

Atapersonal leveltherearewaysofobtainingserviceswithoutpayment,forexamplebyswappingservices.ThesearecalledTimebanks.Theycanbeusedforindividualswhoofferaserviceandbankthetimeandthenuseanotherservice in theTimebank.Forexampleanelderlypersonmayoffer tobabysit in return forhelpwith ‘do it yourself’.Timebankscanbeusedbyorganisationswhocanofferaserviceandthenexchangethemforothers.DHsaythat‘Developingsocialcapitalthroughprojectsthatbuildcommunitycapacitycanbenefit thecommunityat large,aswellas individual, recipientsandproviders involved insuchinitiatives’,(DH,2011b,p.8).TheyalsoquotesomeresearchbyKnappetal.(2007).SeparateeconomicmodellingbytheLSEfoundthat thecostofeachtimebankmemberwouldaveragelessthan£450peryear,butaconservativeestimateofthecontributionofeachmemberwouldexceed£1,300(ibid).

h. Giving more information

Researchshowsthelackofinformationwhichprofessionals,familiesandolderpeoplehaveaboutservices.Forexampleresearchontechnologyforthehomeshowedastrikinglackofknowledge(Wrightetal.,2005).Publicityabout,forexample,DisabledFacilitiesGrants,mightenablemoreawarenessofwhatcanbedone.

i. Measuring outcomes and the need for more research

Manyoftheexamplesthatweoriginallyfoundhadnotbeenevaluated.Whiledescriptionsare,ofcourse,valuable,thereisneedforsomekindofevaluation.Thisdoesnotalwayshavetobeafullcostbenefitexercisebutitdoesneedtogobeyondthesimpledescription.TheNHSOutcomesFrameworkwillhelpbut there isalsoneed to lookmorecarefullyatsmall localinitiativestoseewhatcanbelearnt.


j. Using institutional care more creatively for non residents

Residentialcarehomeshavemanyfacilities,suchaslaundryroomsanddiningroomswhichcouldbeusedbypeoplefromoutside.Butanoteofcautionneedstobemadehere.Researchhasshownthatthishastobedoneverycarefullyforthebuildingisthehometotheresidentsandthepresenceofpeoplefromoutsidemayberesented(Wright,1995).Howeverifsimplestepsareadoptedsuchasaseparateentranceandtheroomsarenotnecessarilyusedatthesametimeastheresidentsthenitcanworkverywell.Forexample,non-residentscanbeaskedtocomeinforcertainsocialevents.

TheILC2012reportarguesthatthecarehomeofthefuturemustbecomeacommunityhubdeliveringarangeofservicesunderonerooforincloselyintegratedneighbourhoods.AWelshstudysuggestedthatcommunityhospitalsmightactasacentreforco-ordinationofservicesandpossiblyequipment(Warneretal2003).

k. The role of industry

IntheUKthereisgreatpotentialinthehousingmarkettoexpandbuildingbothforlifetimehomesand for specialisthousingsuchasextracareschemes. In theUSA,afteraperiodwhen thehousingmarketcollapsed,demand isnowoutstrippingsupply for retirementandassistedlivingproperty(NewYorkTimes,3.8.11).Thereisalsogreatpotentialforinvestmentin refurbishment (including repairsandadaptations)and in technologyproducts.The largestudySus-ITonITusehasproducedhelpful informationonhowtostimulatenewproductdevelopmentfortheoldermarketintheirpaper(seereferences–websiteSus-IT).

Investment inpharmacycouldalsohelp.Forexample theSchoolofPharmacy,UniversityCollege London (UCL) recommends better use of community pharmacies to educatecommunitiesaboutpreventativehealthandhealthylifestyles(GillandTaylor,2012).

Asthepopulationagesacrosstheglobethereisanexpandingworldwidemarketforhousingrelatedtechnologiesthatcanextendindependent livingathome.WhileJapanhasbeenattheforefrontofinnovationtodate,thereisamassivepotentialexportmarket,particularlyforadaptationsandequipmentforhomes.Morecertaintyaboutfuturepolicieswouldhelpfutureinvestment.Whilechangescreateopportunities,alongtermplanwouldhelpstimulatemoreexternalinvestment.

14. Changing institutional careResearch shows that some care homes can be successfully remodelled to become extracarehousing(Tinkeretal.,2007).Whilenotacheapoption,andnotalwayspossible,thisissomething thatshouldbeseriouslyconsideredas itgivespeoplemore independenceandautonomythanacarehome.

Inafewcaseswehavefoundpositiveevidencefollowingtheclosureofacarehome.ForexampleinBirminghamanevaluationfollowingtheclosureofsomeresidentialcarehomesand linkeddaycentresand their replacementwithnewspecialcarecentres,newhousingservicesandinotherformsofresidentialcare(Glasby,2011).Birminghamplantocloseall29residentialcarehomesinthenextfiveyears.TheyplantodevelopeightSpecialCareCentreswithhalfof thebeds ineachcentreproviding long-termstay.Thecentreswillalsoprovideintermediatecareandrehabilitation.Extracarehousingwillbeexpanded,withenhancementsmadetoexistingprovisionandnewdevelopmentschemesundertaken.


Interviewswithasampleoftheolderpeopleaftertheclosuresshowedthat42%fromeachsetting suggested that life had got better following the resettlement programme, a further35%suggestedlifehadstayedthesameand19%suggestedlifehadgotworse(ibid,p.4).However,halfof the lattersuggestedthat thishadbeenduetodeterioration intheirhealthratherthattheservicesoftheircurrentcarehome.

Whileourfocusisonalternativestoinstitutionalcareweacknowledgethat,forsomepeople,especiallywherenursingcareisneeded,itwillremainthebestoptionforthepointofviewoftheolderpersonandcarers.However,wefeelthatmuchcouldbedonetoimprovethisformofcare.

15. Next steps including the need for more research Ourevidencecomesfromevaluations.Westronglysuggestthatsomeoftheotherinitiativeswerefertoareevaluated.Theseincludesomeoftheverypromisingonesontechnologyanddementia listed in theHousingLIN2012 report (Bonner& Idris,ed.Porteus,2012).Manyreports,includingtheHAPPIoneandthatbytheNationalHousingFederation‘OnthePulse’(Leng,2012)containfascinatingdescriptionsofschemesbutitwouldbehelpfuliftheyweretobe fullyevaluated.Agoodexampleof thebenefitofevaluationofprojects is thatof thetest sites commissioned to facilitate the implementation of the National End of Life CareProgramme(Jonesetal.,2012). Itwouldalsohelp tobeable todomoreresearchon thecostsofinitiatives.ForourpartwewouldliketoexploreinmoredetailsomeexamplesfromtheNetherlands(acasestudy)especiallyoftheirhousingandtechnology.Wealsofeelthatthereismoreto learnaboutcohousing. Thereis littleknownaboutthetrajectoriesofolderpeopleandhowwelldifferentsettingsofhousingwithcareareabletocopewithchangesincareneeds.Theextentofunmetneedovertimeandplaceneedsmonitoring.

16. ConclusionsInstitutionalcareandaspectsoflongtermhomecarehavepersistentlybeenfoundwantingbyolderpeopleandtheirfamilies,althoughresidentialoptionswillremainnecessarywhere24hoursupportandhelpisrequired.Acontinuingissueinlongtermcareasbeenthelowstatus,lackoftrainingandexcessiveworkloadsofformalcarers,preventingthemfromgivingcareinthewaythatolderpeoplewouldprefer.Inparticular,researchwitholderpeoplehasshowntheyappreciatekindnessandrespectaswellaspracticalhelp.Asthisreportargues,theformsandpracticesthathavebecomeentrenchedinlongtermcaremustbeimprovedifolderpeople’sautonomy,qualityoflifeandidentityasindividualswithparticularhistoriesandhopesaretobemaintained.

Thisreporthasthereforeexploredradicalalternativestoinstitutionalcarethatenableolderdisabledpeopletotaketheleadinshapingtheirowncaresolutions,breakingwithpreviouslong termcarepatterns.Wedescribea rangeof small scale ‘housing-with-care’ venturesacrossEuropeandNorthAmerica,developedoverthelasttwodecades,thatofferattractivechoicesforolderpeoplewithcareneedsintheirfinalyears.Manyoftheseschemesoperateinasociallyinclusiveway,maintainingself-hood,evenwhereinputshavetobequiteintensiveforveryfrailpeople.OutsidetheUK,substantialnumbersofolderpeoplehaveexperiencednew arrangements andmainly reported satisfaction. Financing care for greater numbersof older people has always been a problem but innovations in housing-with-care couldreducecosts.Forexample,Nordiccohousingschemesareverypopular,withwaiting listsandHomesharinginAustraliaisevaluatedassuccessfulandcosteffective.IntheUKsuch


newconfigurationshavenotyetbecomewidespreadandmaystillbeconfinedtoapropertyowning‘elite’.Technological innovationsarepromising,butevaluationshowstheyneedtobemuchbetterattunedtoolderpeople’spreferencesandrequirements.Innovationssuchaspersonalbudgetsanddirectpaymentshavenotbeenreceivedwithanyenthusiasmbyolderpeople;theresearchindicatesthatmostwantmorechoiceandconsultationwithintheLocalAuthorityserviceprovision;moreovercash-for-careisnotcosteffectiveinthecaseofolderpeople.AsignificantconstraintonLAcareprovisionisbudgetrestrictions,limitingthesupportthatsocialworkerscangive inplanningcare, reducing theamountandqualityofagencycarethatcanbegiventoolderpeople,underminingtheirchoicesandpreferencesand,byexcludingmanyfromassistance,placingintolerableburdensoninformalcarerswhoseownhealthistherebycompromised.

Underlyingourreport isaconsiderationofwhatisbestforolderpeopleandtheircarers.Itisarguedthatmanyoftheissueswehavediscussedwouldnotonlyleadtothisbutalso,inmanycases,tocostsavings.Notonlywouldsomepeoplenothavetogointoinstitutionalcarebuttheemphasisone.g.preventionandbuildingonthestrengthsofolderpeoplethemselveswouldimprovehealthandwell-being.

We have given more weight to some initiatives that seem innovative and underdeveloped. These are extracarehousing,homemodifications/aids/adaptations,technologyandhousingin general.Allwouldbeprimetopicsfor theTechnologyStrategyBoardandfor industrytoinvestin.Inadditiontheroleofsomeotheroptionssuchasco-housingandthefundamentalplankofinformalcare(especiallyco-resident/spousecare)needtobeurgentlyaddressed.

InparticularwehaveprovidedevidencethattheTechnologyStrategyBoardthroughitsroleingrantgivingcancontributeaddedvaluetostimulateinnovationaroundlongtermcareforpopulationageinginbothprivateenterprisesandstatutorysector.Ourexamplesofinnovationsandpromisingschemeshavecomefromthestatutory,privateandnotforprofitorganisations.Wealsofeelthatharnessingthestrengthsofolderpeoplethemselves,notonlyintheprovisionofservicesbutat thestartand throughout the researchprocess,wouldbringaboutbetterfocusedsolutions.Olderpeopleareresourcefulandtheirexpertiseshouldbebrought intoboththedesignofservicesandresearch.

Wehope thatourfindingswillprovide thebasis forstakeholder interest,engagement,andsupport infindingnewand innovativewaysofaddressingcosteffectivenessofsocialcareprovision,choiceandimprovedqualityoflifeandprovidethebasisforthenextphaseoftheTechnologyStrategyBoard’sinvestmentintodevelopingtheprogramme.


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MethodologyWeareamultidisciplinary teamcoveringGerontology,SocialPolicy,Anthropology,PoliticalScience,EconomicsandSociologywithexpertiseinbothquantitativeandqualitativemethods.Apart fromour individual contributionswehave jointly brainstormedon themore complexissues.Thisisbasedonavisionof2020butalso2050(deskresearchbasedontheUKandmainlyEurope.Pleasenotethatthisisnotasystematicsearchoftheliterature).

Wehavesearchedthe literature(throughbothacknowledgeddatabasessuchasAgeinfo,Google Scholar, Web of Knowledge) and the grey literature and have had regular teammeetingstoputtogetheracoherentpicturetoanswertheissuesposedabove.ThishasbeensharedwithcolleaguesbothinIoGandotherappropriateexpertstobuildonthistoreviseandimprovethefindings.

NoteTheviewsexpressedinthisreportarethoseoftheauthorsandarenotnecessarilythoseoftheTechnologyStrategyBoardortheHealthTechandMedicinesKnowledgeTransferNetwork,whowerethefundersofthisresearch,ortheHousingLearningandImprovementNetworkwhohavekindlyagreedtopublishthisreport.

About the Institute of Gerontology, Department of Social Science, Health and Medicine, King’s College LondonThe InstituteofGerontologyatKing’sCollegeLondon isoneof the leadinggerontologicalresearchandteachingcentresworld-wide.Foundedin1986,theInstituteisatthevanguardofmulti-disciplinaryresearchandteaching,actingasabridgebetweenthesocialandclinicalsciences.TheInstitutehasmanylong-standingresearchandteachingcollaborationsincludingtheInstituteofPsychiatry,theSchoolofMedicine,theSchoolofNursingandMidwiferyandtheSchoolofBiomedicalSciences.

TheobjectivesoftheInstituteareto;

• Engage in state of the art research in the demographic, sociological, psychological,financialandinstitutionalprocessesofageing.

• Providemultidisciplinary research led education and research training for both clinicalandsocial scientists, includingpractitioners inhealth, social care,governmentand thevoluntarysector.

• Engagecriticallywithsocialpolicyissuesforthebenefitofolderpeoplebothinternationallyand nationally.

TheInstitute’s interdisciplinarynature isreflected in itsbroadresearchsponsorshipbase; ithasreceivedfundingfromUKResearchCouncils(i.e.ESRC,MRC,EPSRCandAHRC),fromnumerouscharitiesconcernedwiththewelfareofolderpeople,andfromgovernment(includingtheDepartmentofHealth,theDepartmentofCommunitiesandLocalGovernmentandtheDepartmentofWorkandPensions).TheInstitute’srecentresearchhasincludedastudyofelderabuse;pensionsandpoverty;housingandtechnology;thehealthandsocialconcernsof‘new’ageingpopulation,endoflifecareandbereavement;thedemographyofinformalcare;andthebiologyofnaturalageing.Currentresearchisfocussedonthreecoreareas:(i)ageingpolicy,healthandhealthcare;(ii)ageingpolicyandfamilylife;and(iii)globalageing.


About the Housing LINPreviouslyresponsibleformanagingtheDepartmentofHealth’sExtraCareHousingFund,theHousingLearningandImprovementNetwork(LIN)istheleading‘learninglab’foragrowingnetwork of housing, health and social care professionals in England involved in planning,commissioning,designing,funding,buildingandmanaginghousing,careandsupportservicesforolderpeopleandvulnerableadultswithlongtermconditions.

ForfurtherinformationabouttheHousingLIN’scomprehensivelistofonlineresourcesandsharedlearningandserviceimprovementnetworkingopportunities,includingsitevisitsandnetworkmeetingsinyourregion,visitwww.housinglin.org.uk

TheHousingLINwelcomescontributionsonarangeofissuespertinenttohousingwithcareforolderandvulnerableadults.Ifthereisasubjectthatyoufeelshouldbeaddressed,pleasecontactus.

Housing Learning & Improvement Networkc/oEAC,3rdFloor,89AlbertEmbankmentLondon SE1 7TP

Tel:02078208077Email:[email protected]:www.housinglin.org.ukTwitter:@HousingLIN

PublishedbyKing’sCollegeLondon,2012ReproducedinthisformatbytheHousingLearningandImprovementNetwork

©AntheaTinker,LeonieKellaher,JayGinnandEloiRibe

ISBN 978-1-908951-03-8

© Housing Learning & Improvement Network www.housinglin.org.uk

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