Living with dementia: making Living with dementia: making a difference through researcha difference through research

Professor Bob WoodsProfessor Bob WoodsDementia Services Development Centre Dementia Services Development Centre

WalesWalesBangor UniversityBangor University

b.woods@bangor.ac.uk

Welcome back!Welcome back! 2011 – What can we learn from 2011 – What can we learn from

people with dementia?people with dementia? 2012 – Dementia supportive 2012 – Dementia supportive

communitiescommunities 2013 – Making a difference through 2013 – Making a difference through

researchresearch

A quick recap:A quick recap:What is dementia?What is dementia?

An acquired impairment An acquired impairment Global cognitive functions (memory plus)Global cognitive functions (memory plus) Self-care and day-to-day functionSelf-care and day-to-day function Clear consciousnessClear consciousness Usually progressiveUsually progressive Behavioural and psychological Behavioural and psychological

symptoms symptoms maymay include wandering, include wandering, aggression, apathy, hallucinations, loss aggression, apathy, hallucinations, loss of inhibitions, repetition etc.of inhibitions, repetition etc.

Types of dementiaTypes of dementia Alzheimer’s disease - 40%Alzheimer’s disease - 40% Vascular (multi-infarct) - 20%Vascular (multi-infarct) - 20% Lewy Body dementia - 15%Lewy Body dementia - 15% Mixed Alzheimer’s & Vascular - 15%Mixed Alzheimer’s & Vascular - 15% Other (including alcohol-related, CJD, Other (including alcohol-related, CJD,

Pick’s etc) - 10%Pick’s etc) - 10% Each type associated with distinct Each type associated with distinct

brain changes, evident at post-mortembrain changes, evident at post-mortem

Prevalence of dementia in older Prevalence of dementia in older people people (UK Dementia Report, 2007)(UK Dementia Report, 2007)

05

101520253035

65-69

70-74

75-79

80-84

85-89

90-94

95+

Prevalence ofdementia (% )

An older populationAn older population

02468

101214

Millions

65+

19851995200520152025

An older older populationAn older older population

00.5

11.5

22.5

33.5

4

Millions

80+

19851995200520152025

Ageing population predicted to Ageing population predicted to increase number of people with age-increase number of people with age-related conditions such as dementia related conditions such as dementia

37,000 people in Wales with dementia in 37,000 people in Wales with dementia in 20072007

50,000 people in Wales with dementia in 50,000 people in Wales with dementia in 20212021

Number of people with dementia predicted to Number of people with dementia predicted to increase by 33% by the year 2021increase by 33% by the year 2021 Gwynedd from 1,719 to 2325Gwynedd from 1,719 to 2325 Anglesey from 905 to 1,223Anglesey from 905 to 1,223 Conwy from 2,062 to 2,793Conwy from 2,062 to 2,793

Prevalence of dementia in Prevalence of dementia in Conwy Conwy (Dementia UK report, 2007)(Dementia UK report, 2007)

30-6430-64 65-7465-74 75+75+ TotalTotal % of % of over over 65s65s

% of % of total total pop.pop.

MenMen 1818 147147 505505 670670 5.95.9 1.31.3WomenWomen 1313 133133 1,2461,246 1,3921,392 9.29.2 2.42.4TotalTotal 3131 280280 1,7511,751 2,0622,062 7.87.8 1.851.85ProjecteProjected by d by 20212021

3131 380380 2,3822,382 2,7932,793 7.817.81 2.452.45

How old are people with How old are people with dementia?dementia?

(Prevalence figures for Conwy 2013 – UK (Prevalence figures for Conwy 2013 – UK Dementia Report)Dementia Report)

30-6465-7475-8485+

National Dementia Vision National Dementia Vision for Wales 2011 – 6 for Wales 2011 – 6

commitmentscommitments To improve servicesTo improve services Younger people with dementiaYounger people with dementia Dementia CoordinatorsDementia Coordinators Dementia targetsDementia targets

Timely diagnosisTimely diagnosis General hospitalsGeneral hospitals Reduce inappropriate anti-psychoticsReduce inappropriate anti-psychotics Support carersSupport carers Improve NHS in-patient unitsImprove NHS in-patient units

To improve informationTo improve information To raise awarenessTo raise awareness To improve trainingTo improve training To support researchTo support research ‘‘Delivery Assurance Group’Delivery Assurance Group’

Dementia research is the poor Dementia research is the poor relation of medical and health relation of medical and health

research research (Source: Alzheimer’s Research Trust, 2010)(Source: Alzheimer’s Research Trust, 2010)

In the UK, for every person with cancer, £291 is spent on research; for dementia £61 is spent.

Prime Minister’s challenge on Prime Minister’s challenge on dementia (March 2012)dementia (March 2012)

‘‘As a society, we must make As a society, we must make sure that people with sure that people with dementia, their carers and dementia, their carers and families can be active citizens families can be active citizens with the potential to live well with the potential to live well with dementia at every stage with dementia at every stage of the condition.’of the condition.’

‘‘We would like people to feel We would like people to feel confident that we are making confident that we are making significant progress towards significant progress towards prevention, treatment and prevention, treatment and cure in the UK, and to be able cure in the UK, and to be able to say that they wanted to to say that they wanted to take part in research and take part in research and were able to do so.’were able to do so.’

Prime Minister’s challenge on Prime Minister’s challenge on dementia (March 2012)dementia (March 2012)

‘‘We will work towards recruiting 10% of patients into clinical trials.

Participation in high-quality research: Consent to participate in

research will be one of the conditions of accreditation for memory services.’

Research on dementia in Research on dementia in WalesWales

Welsh Government fund NEURODEM Cymru – Welsh Government fund NEURODEM Cymru – ‘Registered Research Group’ since 2006 – hosted ‘Registered Research Group’ since 2006 – hosted by DSDC at Bangorby DSDC at Bangor

Cumulative project portfolio: 100 projects, with Cumulative project portfolio: 100 projects, with total value £41.6 milliontotal value £41.6 million

Particular strengths:Particular strengths: Research on genetic factors (Julie Williams, Cardiff)Research on genetic factors (Julie Williams, Cardiff) Research on Huntington’s disease (Anne Rosser, Research on Huntington’s disease (Anne Rosser,

Cardiff)Cardiff) Research on Parkinson’s disease (Huw Morris, Cardiff; Research on Parkinson’s disease (Huw Morris, Cardiff;

John Hindle, Bangor)John Hindle, Bangor) Research on dementia care (Linda Clare, Bob Woods, Research on dementia care (Linda Clare, Bob Woods,

Bangor)Bangor) Research on risk and prevention of dementia (Linda Research on risk and prevention of dementia (Linda

Clare, Bob Woods, Bangor; Ness Burholt, Swansea; Clare, Bob Woods, Bangor; Ness Burholt, Swansea; Tony Bayer, Cardiff)Tony Bayer, Cardiff)

Opportunities to take part in Opportunities to take part in high quality researchhigh quality research

NEURODEM participant register:NEURODEM participant register: agreement to be approachedagreement to be approached

Current projects include:Current projects include: Effects of being bilingual on dementiaEffects of being bilingual on dementia Individual cognitive stimulation (delivered Individual cognitive stimulation (delivered

by carer)by carer) Maintaining function and well-being in later Maintaining function and well-being in later

lifelife CFAS Wales (Anglesey & Dwyfor)CFAS Wales (Anglesey & Dwyfor) Lifestyle MattersLifestyle Matters Agewell centresAgewell centres

Why take part in research?Why take part in research? Benefits to self:Benefits to self:

Access to information or a potential new Access to information or a potential new treatment approach, or contact with research treatment approach, or contact with research teamteam

Chance to do something you may find enjoyableChance to do something you may find enjoyable Ensure your perspective is representedEnsure your perspective is represented

Benefits to others Benefits to others Improve support / treatments available to Improve support / treatments available to

people with dementia and their families in the people with dementia and their families in the futurefuture

Develop new knowledge that can help othersDevelop new knowledge that can help others

What have we learned in What have we learned in the last 12 months?the last 12 months?

1.1. Reminiscence groupsReminiscence groups2.2. Awareness in severe dementiaAwareness in severe dementia3.3. Cognitive stimulationCognitive stimulation4.4. Life story booksLife story books

Evaluating the effects of Evaluating the effects of reminiscence groups for people reminiscence groups for people with dementia and their carers: with dementia and their carers:

the REMCARE trialthe REMCARE trial Joint reminiscence v usual treatmentJoint reminiscence v usual treatment Pragmatic single-blind RCTPragmatic single-blind RCT 8 centres in Wales & England8 centres in Wales & England Up to 12 people with dementia and Up to 12 people with dementia and

and and carers in each groupand and carers in each group Treatment manualTreatment manual 10 month period includes 10 month period includes

monthly maintenance sessionsmonthly maintenance sessions

Reminiscence groups for people with dementia and Reminiscence groups for people with dementia and their care-givers: pragmatic 8-centre trial of: joint their care-givers: pragmatic 8-centre trial of: joint reminiscence and maintenance v. usual treatmentreminiscence and maintenance v. usual treatment

ISRCTN42430123

''This project was funded by the National This project was funded by the National Institute for Health Research Health Technology Institute for Health Research Health Technology Assessment (NIHR HTA) programme (project Assessment (NIHR HTA) programme (project number 06/304/229) and will be published in number 06/304/229) and will be published in full after peer review in Health Technology full after peer review in Health Technology Assessment. Visit the HTA programme website Assessment. Visit the HTA programme website for further project information.' for further project information.'

''The views and opinions expressed herein are The views and opinions expressed herein are those of the authors and do not necessarily those of the authors and do not necessarily reflect those of the HTA programme, NIHR, NHS reflect those of the HTA programme, NIHR, NHS or the Department of Health.'or the Department of Health.'

ParticipantsParticipants 488 people with mild to moderate 488 people with mild to moderate

dementia (95% of target)dementia (95% of target) Mean age 77.5Mean age 77.5 71% of carers were spouses71% of carers were spouses 83% Alzheimer’s or mixed dementia 83% Alzheimer’s or mixed dementia

(where recorded)(where recorded) Community resident at outsetCommunity resident at outset

Participants - 2Participants - 2 Recruited mainly from Memory Clinics and Recruited mainly from Memory Clinics and

CMHTsCMHTs 268 randomly allocated to RYCT268 randomly allocated to RYCT 219 randomly allocated to ‘treatment as 219 randomly allocated to ‘treatment as

usual’usual’ 72% (350) available at ten-month follow-up 72% (350) available at ten-month follow-up

(6% lost through death)(6% lost through death) More attrition in control group (34% v 23%)More attrition in control group (34% v 23%)

Primary outcome measuresPrimary outcome measures Person with dementia – quality of lifePerson with dementia – quality of life

QoL-AD (13 item self-report) QoL-AD (13 item self-report) QoL-AD proxy (13 item carer-completed)QoL-AD proxy (13 item carer-completed)

Care-giver – psychological distressCare-giver – psychological distress GHQ-28GHQ-28

Results: no differences on these measuresResults: no differences on these measures Raised anxiety for family carers on sub-scale Raised anxiety for family carers on sub-scale

of GHQ-28of GHQ-28 Why no effect?Why no effect?

Attendance at RYCT Attendance at RYCT sessionssessions

Number of sessions

0 1 2 3 4 5 6 7 8 9 10 11 12 Total

Number attended

29 22 7 7 4 5 6 9 17 21 34 41 52 254

Percentage

11 9 3 3 1 2 2 4 7 8 13 16 21 100

• 20% of those randomised to attend RYCT groups attend zero or one session

• 29% attend less than half the planned 12 weekly sessions

• 57% attended at least 3 of the monthly maintenance sessions

• Compliance analyses• 3 months – attend 6 or more weekly sessions (70%)• 10 months – attend 3 or more monthly sessions (57%)

Results for those people Results for those people who actually attend the who actually attend the

groupsgroups Improved autobiographical memory at 3 Improved autobiographical memory at 3

monthsmonths Improved quality of relationship (rated by Improved quality of relationship (rated by

person with dementia) at 10 monthsperson with dementia) at 10 months Improved health related quality of life (EQ-Improved health related quality of life (EQ-

5D) rated by person with dementia at 10 5D) rated by person with dementia at 10 monthsmonths

Increased stress for relatives at 10 monthsIncreased stress for relatives at 10 months

Implications of joint Implications of joint approachapproach

Carers will meet other carersCarers will meet other carers Carers will share knowledge of services Carers will share knowledge of services

(increased use of day services in treatment (increased use of day services in treatment group)group)

Carers will share experiencesCarers will share experiences Carers will see other people with dementiaCarers will see other people with dementia Carers may become more aware of other Carers may become more aware of other

aspects of the dementia journeyaspects of the dementia journey Carers may see person ‘come alive’ in session Carers may see person ‘come alive’ in session

and then return to ‘normal’ in between?and then return to ‘normal’ in between? Could these aspects Could these aspects raiseraise carers’ anxiety? carers’ anxiety?

What do carers say?What do carers say? A care-giver explaining why she would recommend the groups to a friend

stated: “people and carers in the same situations as oneself, they understand

what we are going through”  Another commented on learning from other care-givers: “(the group was) very good, it showed how other people dealt with their

partner”  Another highlighted the effects on the person with dementia (the care-

giver’s mother): “At first I was sceptical about this work, thinking it would not do much,

but I was amazed when, after and in between group sessions my mum was remembering the past and trying hard to remember more. It’s good for the participants to have 1:1 with a facilitator and feel important. I suppose the participant feels less worthy having no memory and not being able to do things, these sessions make them feel worthwhile and special again. They come away with more confidence I think.”

Next stepsNext steps The REMCARE final report is published as an The REMCARE final report is published as an

HTA monographHTA monograph Further work is in progress analysing qualitative Further work is in progress analysing qualitative

data collected alongside the trialdata collected alongside the trial Further analyses will explore what is different (if Further analyses will explore what is different (if

anything) about those who continue to attendanything) about those who continue to attend Further analyses will examine mechanisms of Further analyses will examine mechanisms of

change and identify predictors of who benefitschange and identify predictors of who benefits Comparisons with data from the SHIELD Comparisons with data from the SHIELD

programme, where RYCT is being contrasted programme, where RYCT is being contrasted with a carer support programme, will further with a carer support programme, will further illuminate the REMCARE resultsilluminate the REMCARE results

http://www.hta.ac.uk/project/1655.asp

What have we learned in What have we learned in the last 12 months - 1the last 12 months - 1

Reminiscence groups for Reminiscence groups for people with dementia and people with dementia and their carers are generally their carers are generally enjoyed, but do not appear enjoyed, but do not appear to have lasting effects on to have lasting effects on quality of life (the quality of life (the REMCARE study)REMCARE study)

Some improvements for Some improvements for people with dementia who people with dementia who attend consistentlyattend consistently

May contribute to increased May contribute to increased carer anxietycarer anxietyhttp://www.hta.ac.uk/project/1655.

asp

Awareness in severe Awareness in severe dementia? dementia?

Often assumed that care home residents Often assumed that care home residents with severe dementia are lacking with severe dementia are lacking awareness of what is happening in their awareness of what is happening in their environment, especially where no longer environment, especially where no longer able to express awareness through verbal able to express awareness through verbal communication.communication.

BUT still possible to identify signs of BUT still possible to identify signs of retained awareness by carefully retained awareness by carefully observing the resident’s behavioural observing the resident’s behavioural responses to his/her surroundingsresponses to his/her surroundings..

Awareness in severe Awareness in severe dementiadementia

Sensory appreciation still possibleSensory appreciation still possible Social stimuli most often elicit a responseSocial stimuli most often elicit a response We need to be more sensitive to the We need to be more sensitive to the

indications the person gives us of their indications the person gives us of their response and interestresponse and interest Eye movementsEye movements Facial expressionFacial expression SoundsSounds Subtle movementsSubtle movements

The AwareCare studyThe AwareCare study(funded by MRC)(funded by MRC)

In 4 care homes in North Wales developed an In 4 care homes in North Wales developed an observational tool that care staff could be trained observational tool that care staff could be trained to useto use

Uses a combination of natural and prompted Uses a combination of natural and prompted triggerstriggers

Careful attention to responseCareful attention to response Trial of staff training in use of the tool in 8 care Trial of staff training in use of the tool in 8 care

homes in North Waleshomes in North Wales Staff trained to observe carefully, and to use tool Staff trained to observe carefully, and to use tool

as a starting point for activity and communicationas a starting point for activity and communication Results indicated improved quality of life (as Results indicated improved quality of life (as

rated by relatives) in homes where staff were rated by relatives) in homes where staff were trained to use the tooltrained to use the tool

The Awarecare toolThe Awarecare tool

‘‘Wendy’Wendy’ Wendy was not mobile, usually mute and sat Wendy was not mobile, usually mute and sat

with her eyes closed for most of the day. with her eyes closed for most of the day. However, when shown a picture, a very subtle However, when shown a picture, a very subtle

flickering of the eyes to glance at the picture flickering of the eyes to glance at the picture could be observed and sometimes she would could be observed and sometimes she would respond with a whisper. respond with a whisper.

Furthermore, on one occasion when xxx Furthermore, on one occasion when xxx began to play music to her and joked that it began to play music to her and joked that it was a song that you could “boogie to”, was a song that you could “boogie to”, Wendy responded with a strained, yet very Wendy responded with a strained, yet very deliberate smile and the staff were amazed deliberate smile and the staff were amazed that she still had such an ability.that she still had such an ability.

What have we learned in What have we learned in the last 12 months - 2the last 12 months - 2

Quality of life (rated by Quality of life (rated by relatives) of residents relatives) of residents improved in care homes improved in care homes where staff were trained where staff were trained to use the Awarecare to use the Awarecare tool.tool.

The tool helps staff The tool helps staff recognise indicators of recognise indicators of awareness in severe awareness in severe dementiadementia

Cognitive stimulation Cognitive stimulation (CST) groups(CST) groups 14 Sessions (2 sessions / week)14 Sessions (2 sessions / week) 45 minutes45 minutes 1)1) Physical gamesPhysical games 2)2) Sound effects, musicSound effects, music 3)3) Early memoriesEarly memories 4)4) FoodFood 5)5) Current affairsCurrent affairs 6)6) Faces / scenesFaces / scenes 7)7) Associated wordsAssociated words 8)8) Using objectsUsing objects 9)9) Categorising objectsCategorising objects

10)10) Orientation (creation Orientation (creation of map)of map)

11)11) Using moneyUsing money 12)12) Number-related Number-related

activityactivity 13)13) Word-related Word-related

activityactivity 14)14) Quiz, consolidationQuiz, consolidation

NICE-SCIE guidance on the NICE-SCIE guidance on the management of the dementias management of the dementias

(2006) (2006) www.nice.org.uk People with People with

mild/moderate dementia mild/moderate dementia of all types should be of all types should be given the opportunity to given the opportunity to participate in a participate in a structured group structured group cognitive stimulation cognitive stimulation programme … provided programme … provided by workers with training by workers with training and supervision … and supervision … irrespective of any anti-irrespective of any anti-dementia drug received dementia drug received …’…’

Maintenance Cognitive Stimulation Maintenance Cognitive Stimulation trialtrial

Orrell, Aguirre et al. NIHR ‘SHIELD’ Orrell, Aguirre et al. NIHR ‘SHIELD’ programmeprogramme

‘‘Making a difference – 2’ Making a difference – 2’ developed – 24 developed – 24 maintenance sessionsmaintenance sessions

Open trial of ‘standard’ CST (7 weeks)Open trial of ‘standard’ CST (7 weeks) 236 participants randomised to continue 236 participants randomised to continue

once weekly sessions for 6 months (MCST) once weekly sessions for 6 months (MCST) or treatment as usualor treatment as usual

MMSE mean score 17.8MMSE mean score 17.8 Mean age 83Mean age 83 42% care home residents / 58% community 42% care home residents / 58% community

resident (Day care etc.)resident (Day care etc.) A third receiving ACHEIs (dementia drugs)A third receiving ACHEIs (dementia drugs)

MCST preliminary resultsMCST preliminary results After open trial, improved cognition After open trial, improved cognition

and quality of lifeand quality of life At 6 month follow-up, MCST group have At 6 month follow-up, MCST group have

higher scores on QoL-ADhigher scores on QoL-AD At 3 month follow-up, MCST group have At 3 month follow-up, MCST group have

higher scores on proxy QoL-AD and higher scores on proxy QoL-AD and DEMQOL and ADLDEMQOL and ADL

Additional effect to that of ACHEIsAdditional effect to that of ACHEIs

What have we learned in What have we learned in the last 12 months - 3the last 12 months - 3

Continuing Cognitive Continuing Cognitive Stimulation groups Stimulation groups weekly for 6 months weekly for 6 months after initial 7 weeks after initial 7 weeks of sessions twice a of sessions twice a week, leads to further week, leads to further improvements in improvements in quality of lifequality of life

Adds to effects of Adds to effects of dementia drugsdementia drugs

Identity and the person with Identity and the person with dementiadementia

Autobiographical memoryAutobiographical memory ““It is an inescapable fact about human It is an inescapable fact about human

existence that we are made of our existence that we are made of our memories; we are what we remember memories; we are what we remember ourselves to be” (Casey, 1989)ourselves to be” (Casey, 1989)

relates to sense of identityrelates to sense of identity reconstructive process - driven by emotions reconstructive process - driven by emotions possible disconnection from early memoriespossible disconnection from early memories

Reminiscence therapy – Reminiscence therapy – conceptual rootsconceptual roots

Life review – Robert Butler (1963)Life review – Robert Butler (1963) Erikson – integrity v despairErikson – integrity v despair Person-centred care – the unique life Person-centred care – the unique life

story and biography of the person with story and biography of the person with dementia (cf. Kitwood)dementia (cf. Kitwood)

Relationship-centred care – identity is Relationship-centred care – identity is maintained through interpersonal maintained through interpersonal relatingrelating

Developing life story workDeveloping life story work Previous study (Morgan & Woods, 2010) Previous study (Morgan & Woods, 2010)

showed that life review leading to life story showed that life review leading to life story book led to improved autobiograhical memory book led to improved autobiograhical memory and reduced depression in care home residents and reduced depression in care home residents with dementia – books highly valuedwith dementia – books highly valued

How important is the process of life review as How important is the process of life review as opposed to the tangible life story book?opposed to the tangible life story book?

Life review based life story books compared Life review based life story books compared with ‘gift’ life story books produced by relativeswith ‘gift’ life story books produced by relatives

Ponnu Subramaniam - PhD projectPonnu Subramaniam - PhD project

Life Story BooksLife Story Books•The idea of life story books or ‘This Is Your Life’ type The idea of life story books or ‘This Is Your Life’ type scrapbooks has been adapted from child care work scrapbooks has been adapted from child care work (Gibson, 1994).(Gibson, 1994).

• The story book, itself, is The story book, itself, is created by the personcreated by the person, using , using the person’s choice of pictures, props and words. the person’s choice of pictures, props and words.

•The life story book is a The life story book is a pictorial reminder pictorial reminder of an of an individual’s life as directed by the individual. individual’s life as directed by the individual.

•The book include the items the The book include the items the individual chooses as individual chooses as important important to him /herself.to him /herself.

• The caregiver can contribute by providing pictures The caregiver can contribute by providing pictures and memorabilia from which the individual can selectand memorabilia from which the individual can select

Examples from James’s Life Story BookChildhood

“My childhood life was very

hard...difficult.... Once at age of 14, I ran away from my

home and tried to join navy...they found out about my age...I

was too young to join navy at that

time...the navy people send

me back home...my father got

mad with me” – James laughing

recalling his memory; 2nd Feb 2011

 

Examples from James’s Life Story Book (cont...)

“My wife and I loved our Malta holiday. Out of all our holidays...Malta holiday

was the best...we really enjoyed...except the

mosquito bites... (laughing)! - James

Mary and James – Malta Holiday

Examples from John’s Life Story Book

PHOTOGRAPHS REMOVED

This is John’s wife Emma. The photo was taken before they got married. They used to cycle (push bike) together. John used to cycle 20 miles from _________ to ___________ to meet Emma on the weekends. He stayed at his mother-in-law’s house at No. _____________.

From John’s LSB: Page 8

Examples from John’s Life Story Book (cont...)

PHOTOGRAPHS REMOVED

John with his brand new motorbike. He was famous among his friends as ‘JOHN MOTORBIKE’. Only John had a motorbike among his friends. He is a Big Gun!

After this motorbike he bought his first car. This little car had 3 wheels and was red in colour. - From John’s LSB: Page 10

Examples from Sarah’s Life Story Book ___ Carnival was a major

part of Sarah’s life. She actively took part in

many events and activities in ____

Carnival throughout her life.

Above: Sarah was crowned as ____ Queen in ___ Carnival in the year of 1933. She was 11 years old.

-From Sarah’s LSB: Page 7

Examples from Sarah’s Life Story Book (cont...)

PHOTOGRAPHS REMOVED

52 years later, Sarah was crowning Queen Carol, ___ Carnival queen in 1985. Sarah was 63 years old.

-From Sarah’s LSB: Page 38

Examples from Sarah’s Life Story Book (cont...)

PHOTOGRAPHS REMOVED

Sarah’s main interest was baking and decorating cakes. She is highly talented in decorating cakes. Many people were impressed with her creativity and skills in baking and decorating cakes. Above, some of the cakes baked and decorated by Sarah.

-From Sarah’s LSB: Page 33 & 35 (Hobby Segment)

Stimulate Memory & New informationStimulate Memory & New information

  John’s feedback during life review session:John’s feedback during life review session: ““Now I can see my father & mother”...He smiled... “I like them” Now I can see my father & mother”...He smiled... “I like them”

(looking at his parents photo) – second meeting on 27-07-2010.(looking at his parents photo) – second meeting on 27-07-2010.

Example 1: “Each time I sit with my mother with the book Example 1: “Each time I sit with my mother with the book (LSB), (LSB),

she will give new information...the book she will give new information...the book helps helps her very much - Participant’s Daughterher very much - Participant’s Daughter

Example 2: “ We all never knew that our grandfather was an Example 2: “ We all never knew that our grandfather was an blacksmith..-Daughter’s reaction to the LSB.blacksmith..-Daughter’s reaction to the LSB. Example 3: “The book is a great idea.....it is very useful... very Example 3: “The book is a great idea.....it is very useful... very

stimulating”stimulating”

Improve Interaction & CommunicationImprove Interaction & Communication•Emma (resident in another care home) looked very Emma (resident in another care home) looked very pleased with her husband’s life story book...kept saying pleased with her husband’s life story book...kept saying ‘thank you’ every time turning to a new page. She ‘thank you’ every time turning to a new page. She recalled many memories and stories from her recalled many memories and stories from her husband’s life story book. She enjoyed them. husband’s life story book. She enjoyed them.

Daughter’s feedback about her mother:Daughter’s feedback about her mother:

•Reduced repetitive talk from her mother (Emma)Reduced repetitive talk from her mother (Emma)•The book helped her (daughter) to engage in The book helped her (daughter) to engage in meaningful conversation with her father & mothermeaningful conversation with her father & mother•The book (LSB) helps to talk and bring many The book (LSB) helps to talk and bring many stimulating memories between daughter and her mom, stimulating memories between daughter and her mom, Emma.Emma.•Now each visit...we can talk about meaningful things....Now each visit...we can talk about meaningful things....

Entertaining & enjoymentEntertaining & enjoyment We really enjoyed all the process of making LSB We really enjoyed all the process of making LSB

(Relative)(Relative) ““I have no regret!”...nice...nice memories! (looking at I have no regret!”...nice...nice memories! (looking at

drafted life story book) – 8drafted life story book) – 8thth meeting on 14-09-2010 meeting on 14-09-2010 My father enjoyed.....for a long time he never My father enjoyed.....for a long time he never

laughed like this....laughed like this.... This is about me...I’m excited...now, people will know This is about me...I’m excited...now, people will know

me... great!.... dear me...dear me!.me... great!.... dear me...dear me!. We enjoyed very much throughout the project....we We enjoyed very much throughout the project....we

enjoyed each session....after each session we looked enjoyed each session....after each session we looked forward to another session...thank you very much.forward to another session...thank you very much.

Improve Staff KnowledgeImprove Staff Knowledge•I only started to work here (care home) for past I only started to work here (care home) for past 1 week but I know one person very well. Like I 1 week but I know one person very well. Like I know him for many years. Do you know why? know him for many years. Do you know why? The book!The book!

•‘‘Now I know what she likes...baking cake’....next Now I know what she likes...baking cake’....next time I know what topic should I talk to time I know what topic should I talk to her...about cake! – Care Home Staff.her...about cake! – Care Home Staff.

•‘‘Now we know more about her....good job’ – Now we know more about her....good job’ – carercarer

•This book should be created and brought This book should be created and brought together with the resident when they move into together with the resident when they move into a care home’- Deputy Manager, Care Home.a care home’- Deputy Manager, Care Home.

To View & Evaluate Own LifeTo View & Evaluate Own Life

•““I never thought that I had wonderful life...This I never thought that I had wonderful life...This book tells about that” – Participantbook tells about that” – Participant•““Only now I know that I had so many Only now I know that I had so many holidays.... Can you believe..!holidays.... Can you believe..!•You see (referring to her book), I had so many You see (referring to her book), I had so many beautiful dresses...sometimes my daughter beautiful dresses...sometimes my daughter borrows from me! borrows from me!

Living LegacyLiving Legacy

•The book tells story of my father with The book tells story of my father with pictures...his own words inside the book ... I will pictures...his own words inside the book ... I will keep the book for his grandchildren and great keep the book for his grandchildren and great grand children...They will be proud of him!grand children...They will be proud of him!

RESULTS- QOL-ADRESULTS- QOL-AD

Life review group, who received life review as a treatment, Life review group, who received life review as a treatment, significantly improved on quality of life compared with usual significantly improved on quality of life compared with usual care group (gift group) who received usual care at first 12 care group (gift group) who received usual care at first 12 weeks, F (1,20)=5.11, p<0.05).weeks, F (1,20)=5.11, p<0.05).

However, after usual care group participants received their own However, after usual care group participants received their own life story book as a gift, their quality of life scores increased 3.1 life story book as a gift, their quality of life scores increased 3.1 mean points compared to time 2 quality of life scores, F (1,20) = mean points compared to time 2 quality of life scores, F (1,20) = 0.08, p>0.05).0.08, p>0.05).

RESULTS- Autobiographical Memory RESULTS- Autobiographical Memory InterviewInterview

•Life review group increased ability in recalling autobiographical memory about themselves at post-intervention (Time 2), indicated significant intervention effect on total AMI scores, F(1, 20)= 19.92, p<0.01).

* However at follow-up indicated no significant intervention effect on AMI total scores. After having life story book developed by their relative as a gift, participants’ total AMI scores improved, F(1, 20)=2.92, p>0.05).

Summary of findingsSummary of findings•Participants and relatives enjoyed the process and the outcome of the book.•No kind of negative effect reported or observed.•The entire 11 participants enjoyed taking part in life review process•Life Review process produce psychosocial benefits (QOL, AMI) for people with dementia & the book acted as a ‘maintaining tool’.•The life story book created either by the life review process which is involving the person with dementia or by family members without involving the person is itself viewed positively by participants, relatives and care staff. •The creation of life story book appears to be a valuable therapeutic approach to aid a person living with dementia.

Effects on othersEffects on others Quality of relationship, rated by Quality of relationship, rated by

relative, significantly improves after relative, significantly improves after life story book createdlife story book created

Staff knowledge about the resident’s Staff knowledge about the resident’s life, and staff attitudes (person-life, and staff attitudes (person-centred, hopeful) improve after life centred, hopeful) improve after life story book is availablestory book is available

Developing life story workDeveloping life story work

Alternate products:Alternate products: Memory boxesMemory boxes

Multi-media systemsMulti-media systems Evaluation at an early stage – feasible Evaluation at an early stage – feasible

(Subramaniam & Woods, 2010)(Subramaniam & Woods, 2010) Massimi et al (2008): ambient biographical Massimi et al (2008): ambient biographical

displaydisplay

ResultsResults•5/6 participants showed improved quality of life.5/6 participants showed improved quality of life.

•5/6 participants showed improved 5/6 participants showed improved autobiographical memory.autobiographical memory.

• All participants showed improvement or All participants showed improvement or maintain depression scores.maintain depression scores.

Qualitative ResultsQualitative ResultsThemes: Participants

Enjoyment, Excitement & Happinesse.g. -I feel like I’m famous. I feel very

happy to watch it!-I enjoyed. I have tears…you see!

Stimulating & Triggeringe.g. -Its bring back my memories…I

remembered that I love to play golf!-I can see my life again…I

remembered many things that I never able to remember. The movie tell about myself…songs and ballet make me happy.

Qualitative Results (Cont…)Qualitative Results (Cont…)Relatives

Quality Time- Helped me to spend good ½ hour

with____. Very productive and not like before.

-At least for ½ hour my brother happy2. Feel Good, Better & Pleasure

- Make me feel better because _____happy by watching the movie.

- I’m glad that I helped ____ to leave her legacy

-Pleasure in seeing photos of mum’s life; obviously it covers some of my life too.

Qualitative Results (Cont…)Qualitative Results (Cont…)Staff

Improved knowledge and understanding

-I got to know more about_____ and her family even though I have cared for her ten years and know some family members, still learnt a lot from the movie.

-Its helped me understand_____ more. Their past history makes them who they really are, and without information like this (movie), we really don’t know them

ConclusionConclusion

•Out of 6 participants, 5 of them prefer movie over paper back life story book. One participant choose both.•Participants, relatives and staff view life story book as a useful tool.•There is indication that life story movie can be replacement to traditional life story book.

What have we learned in What have we learned in the last 12 months - 4the last 12 months - 4

Life review and life story books for care Life review and life story books for care home residents (Ponnusaamy Subramaniam)home residents (Ponnusaamy Subramaniam)

23 life story books completed23 life story books completed 6 multi-media ‘life story books’ developed6 multi-media ‘life story books’ developed Life story books improve quality of lifeLife story books improve quality of life Relationship with relative improvesRelationship with relative improves Staff knowledge and attitudes improveStaff knowledge and attitudes improve Digital life story books lead to further Digital life story books lead to further

improvementsimprovements

Coming very soon:Coming very soon:New dementia projectsNew dementia projects

GREAT Trial: Living well with memory GREAT Trial: Living well with memory difficultiesdifficulties Funded by NIHR HTA programme 2013-2016Funded by NIHR HTA programme 2013-2016 Builds on previous North Wales trial of Builds on previous North Wales trial of

cognitive rehabilitation, using goal-setting cognitive rehabilitation, using goal-setting with people with early-stage dementiawith people with early-stage dementia

North Wales is one of 6 sites for this project North Wales is one of 6 sites for this project – recruiting in next few months– recruiting in next few months

Chief Investigator: Linda Clare Chief Investigator: Linda Clare

New dementia projects -2New dementia projects -2 ‘‘Dementia and Imagination’Dementia and Imagination’ Funded by Arts & Humanities Funded by Arts & Humanities

Research CouncilResearch Council Building connected communities Building connected communities

through creative arts activities with through creative arts activities with people with dementiapeople with dementia

Chief Investigator: Dr Gill WindleChief Investigator: Dr Gill Windle

Will research make a Will research make a difference?difference?

If there was a drug that improved quality If there was a drug that improved quality of life for people with dementia would we of life for people with dementia would we want to ensure it was available?want to ensure it was available?

We need partnership between We need partnership between researchers, practitioners, people with researchers, practitioners, people with dementia and carers to ensure the dementia and carers to ensure the important questions are addressed, and, important questions are addressed, and, where there are answers, that they are where there are answers, that they are implementedimplemented

Thank you!Thank you! Thanks to colleagues and collaborators:Thanks to colleagues and collaborators: The DSDC Wales teamThe DSDC Wales team The NISCHR teamThe NISCHR team Joan Woods, Training Officer, DSDCJoan Woods, Training Officer, DSDC Ponnusaamy SubramaniamPonnusaamy Subramaniam Professor Linda ClareProfessor Linda Clare Professor Martin OrrellProfessor Martin Orrell The Alzheimer’s SocietyThe Alzheimer’s Society