the edinburgh principles with accompanying guidelines and recommendations

Abstract

A panel of experts attending a -day meeting held inEdinburgh, UK, in February was charged withproducing a set of principles outlining the rights and needs of people with intellectual disability (ID)and dementia, and defining service practices whichwould enhance the supports available to them. TheEdinburgh Principles, seven statements identifying afoundation for the design and support of services topeople with ID affected by dementia, and their carers,were the outcome of this meeting. The accompanyingguidelines and recommendations document providesan elaboration of the key points associated with thePrinciples and is structured toward a four-pointapproach: () adopting a workable philosophy of care;() adapting practices at the point of service delivery;() working out the coordination of diverse systems;and () promoting relevant research. It is expectedthat the Principles will be adopted by service organiza-tions world-wide, and that the accompanying docu-ment will provide a useful and detailed baseline fromwhich further discussions, research efforts and practicedevelopment can progress.

Keywords dementia, Edinburgh Principles, needs,rights, services

Correspondence: Dr Heather Wilkinson, Centre for SocialResearch on Dementia, Department of Applied Social Science,Faculty of Human Sciences, University of Stirling, Stirling FK

LA, UK (e-mail: [email protected]).

Introduction

The following principles and guidelines were developed by the Edinburgh Working Group onDementia Care Practices (EWGDCP) at a specialmeeting held in Edinburgh, UK, on – February. The meeting was called by the University of Stir-ling, Stirling, UK, the University at Albany, Albany,NY, USA, and the University of Illinois at Chicago,Chicago, IL, USA, to define internationally applicableworking practices for the community supports ofadults with intellectual disability (ID) who are affectedby Alzheimer disease (AD) and related dementias. TheEdinburgh Principles were adopted by the Interna-tional Association for the Scientific Study of Intellec-tual Disability (IASSID) Council on September. This document is sourced at the Centre forSocial Research on Dementia, University of Stirling.

Alzheimer disease and related dementiasand intellectual disabilities

Dementias resulting from AD and other related condi-tions are age-associated, i.e. they primarily affect olderadults and their prevalence increases significantly withadvancing age. The consequences of such dementiasare memory loss, personality changes, diminished self-care abilities, and the eventual impairment of thecognitive and adaptive skills necessary for successfulpersonal, occupational and community functioning.Dementias generally affect people with ID in the samemanner as they do other older people, apart fromsome differential effects on individuals with Down’ssyndrome (DS). Adults with DS are at greater overall

Journal of Intellectual Disability Research

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short communication

The Edinburgh Principles with accompanying guidelinesand recommendations

H.Wilkinson1 & M. P. Janicki2

1 Centre for Social Research on Dementia, Department of Applied Social Science, Faculty of Human Sciences, University of Stirling, Stirling, UK2 Department of Disability and Human Development, and RRTC on Aging and Developmental Disabilities, College of Health and Human Development Sciences, University of Chicago at Illinois, Chicago, Illinois, USA

risk of being affected by dementia, are often affected atan earlier age, and may be affected by precipitousdecline and loss of skills within a shorter period oftime.

In many jurisdictions, practices have been inconsis-tent with regard to how to provide services and sup-ports to people with ID affected by dementia. Manyproviders have not defined workable responses to theincreasing presentation of dementia among peoplewith ID. Care providers are becoming increasinglychallenged to avoid institutionalization or the referralof affected individuals to inappropriate settings.Notwithstanding the insidious effects of dementia,there is agreement that adults with ID, as they areaffected by AD or related dementias, should be treatedwith respect and given the opportunity to remain intheir community with sufficient and appropriate sup-ports and services to compensate for personal losses infunction and decline. There is further agreement thatthe prevailing practices and policies of service provi-sion need to be examined with an eye to adopting uni-versally applicable guidelines which promote continuedcommunity care and support of people with ID whoare affected by dementia.

Therefore, EWGDCP has adopted the followingprinciples with relation to continued community sup-ports and services for people with ID affected bydementia. It proposes that governments, organizationsand providers adopt these Principles and promotetheir use in aiding those adults with ID affected by ADand other similar conditions resulting in dementia.

The Edinburgh Principles

Adopt an operational philosophy that promotes theutmost quality of life of people with ID affected bydementia, and whenever possible, base services andsupport practices on a person-centred approach. Affirm that individual strengths, capabilities, skillsand wishes should be the overriding consideration inany decision-making for and by people with IDaffected by dementia. Involve the individual, her or his family, and otherclose supports in all phases of assessment and servicesplanning and provision for the person with an IDaffected with dementia. Ensure that appropriate diagnostic, assessment andintervention services and resources are available tomeet the individual needs and support the healthyageing of people with ID affected by dementia.

Plan and provide supports and services which opti-mize remaining in the chosen home and community ofadults with ID affected by dementia. Ensure that people with ID affected by dementiahave the same access to appropriate services and supports as afforded to other people in the generalpopulation affected by dementia. Ensure that generic, cooperative and proactivestrategic planning across relevant policy, provider and advocacy groups involves consideration of thecurrent and future needs of adults with ID affected by dementia.

Background of effort

The development of these principles and accom-panying guidelines originated from questions raised byvarious service providers’ organizations across theworld, and in a series of meetings held during the pastseveral years involving key international researchersand service providers in the field of ageing and ID.

The basis for the Principles was an internationalconsensus meeting, underwritten by the National Insti-tute on Aging in the United States, that was held inJuly . This meeting, the Minneapolis InvitationalColloquium on Alzheimer’s Disease and Developmen-tal Disabilities, was an international gathering ofexperts held to address three key issues involvingpeople with ID: () the diagnosis and assessment ofdementia; () the epidemiology of dementia; and ()care and management practices. Subsequent relatedmeetings in Manchester, UK, and Chicago, IL, USA,both in , and New York, NY, USA, in led tothe publication of three reports detailing the key issuesmentioned above under the auspices of the American Association on Mental Retardation (AAMR) and theIASSID. (For copies of the above reports, see<www.aamr.org> and <www.iassid.org>.)

As of yet, the varied national associations furtheringthe needs of people affected by AD and related demen-tia have yet to define specific and consistent strategiesin support of people with ID affected by dementia.Many have looked to the ID systems in their homenations for guidance and direction as to how bestadvise families and providers on avenues for care andsupports. Some national ID groups have developedguidance documents on the basics of dementia, butthese have not been generally circulated within the ADprovider community. (For a bibliography of these docu-ments, see <www.uic.edu/orgs/rrtcamr/dementia>.)


H. Wilkinson & M. P. Janicki • The Edinburgh Principles280

© Blackwell Science Ltd, Journal of Intellectual Disability Research , –

In general, the documents produced have primarilydealt with the challenges of diagnostics and generalcare practices related to people with ID and dementia,and have only touched on specific services or supportpractices or principles. In activating the working groupthat developed the original AAMR/IASSID docu-ments, it was determined that there was a need for anagreement on a set of principles underlying the provi-sion of supports and services to people with ID oncethey are identified as affected by dementia. The under-lying belief for this agreement was that, althoughdementia is an insidious condition, the individualsaffected should continue to get the full benefits of con-tinued community care and supports drawing from thebest practices in the ID system, and the AD andrelated dementias network.

The aims of EWGDCP were to:• build on the expertise and relationships createdduring previous meetings, and develop new multi-disciplinary relationships and networks;• extend expertise, knowledge and skills in the specificarea of provision of care for people with ID who areaffected by dementia; and• produce a set of principles outlining the rights andneeds of people with ID affected by dementia.

This document details the outcomes of discussionsheld over a -day meeting at which participantsfocused on several key questions and worked towarddeveloping the Edinburgh Principles. The document isstructured toward a four-point approach: () adoptinga workable philosophy of care; () adapting practicesat the point of service delivery; () working out thecoordination of diverse systems; and () promoting rel-evant research.

The recommendations embedded in this documentare designed to influence care in existing servicesystems and to influence the development of care inthe future. Efforts were made to use language that cutsacross national systems of care provision.

Adopting a workable philosophy of care

The members of EWGDCP agreed that a number ofkey notions were important considerations in defininga workable philosophy of care considering service pro-vision to people with ID affected by dementia: Any such support philosophy that was adoptedshould be consistent with the belief that all individualshave a right to live their lives to their fullest potentialbased on their own values, beliefs and needs with acontinuity of care reflecting changing individual needs.

Any provision of services should be proffered in aperson-centred manner. In adopting a philosophy, providers should achieve a balance between the protection of function, and aflexible, proactive and imaginative approach to developing quality of life. Providers should avoid any inconsistency or tensionbetween philosophies which may promote learning andgrowing, and those for people living with decline. Providers should strive to resolve any frictionbetween regulatory standards and overall service phi-losophy, and the changing needs of individuals. In adopting a fundamental philosophy of care,providers should think long-term about dementiarather than engaging in a reactive process, but alsoprovide hour-to-hour flexibility and the opportunity tomaintain human interaction.

Adapting services at the point of delivery

People with ID affected by dementia reside in a varietyof settings, including with their families, on their own,with a spouse or friends, in group living residences,and in institutions. There is a need to respond toneeds across groups and include a family perspective,recognizing that individuals needing services may oftenbe unidentified. Therefore, providers need to be cog-nizant of the funding issues attached to where the indi-vidual is living. It is also important to consider thatthere are particular ‘at risk’ groups, such as peoplewith ID who are semi-independent and capable of self-care, because there are also individuals living on theirown or with their own families.

Therefore, the question of how to organize servicesand attend to meeting individual needs is a key consid-eration. Specific attention should be paid to futureplanning, with consideration of legal and financialissues, and practices should be instituted which bothattend to the physical needs of the individual andpromote healthy ageing. Such practices should alsoimprove the awareness and attitudes of people who areinvolved in diagnosis, service planning and service pro-vision. Issues need to be defined which relate qualityof diagnosis and policies set, such as whether to sharethe diagnosis with the individual.

With regard to diagnostics, there is a need todevelop and use a standardized assessment instrumentwith reliable thresholds, and to ensure that the assess-ment process reviews a range of conditions and circumstances which otherwise mimic or distort symp-toms. Clinicians need to recognize the variability of




courses which the disease could take, and that diagno-sis of dementia is time consuming and difficult. It isrecognized that there are few diagnostic facilities, andgenerally, a lack of trained personnel to do accurateand reliable diagnostic work-ups.

Carers need to be trained and otherwise assisted tobecome more adept with their skills and the ways inwhich they can assist in the diagnosis process. Using aproactive approach to assessment, where issues of reg-istration and monitoring also involve family and othercarers, is important. The process of assessment is facil-itated when there are standard tools and uniform waysof assessing for dementia. Planning should involve alifelong approach based on typical patterns of change,but clinicians need to build in mechanisms to adjustfor care changes.

Assessments, using a baseline for each individual,should be able to compare behaviour presentations,and thus, indicate decline. However, information-gathering should be sensitive and avoid being overlyintrusive. Any information-gathering should includethe knowledge and views of the people who are closestto the person. For example, a biography-focusedapproach can be used to complement any assessment.In the end, an impression should be formed of whatthe individual wants that is based upon history andpast choices.

Internal organizational relationships need to bethought out and a clear line of referral into theprimary system must be established. It is important todefine clearly who is responsible and which branch isaccountable. Bringing diverse branches of a providersystem together is a goal to strive for, and thinkingcompartmentally across and between services is some-thing to avoid. Being aware of other possible causesand the possibilities of differential diagnosis is a majorconsideration (e.g. psychiatric issues, misdiagnosis andover diagnosis).

People with ID may lose skills, and they benefitfrom assessments which can highlight correctable con-ditions (e.g. hearing, sight or pain). It is important toensure that culturally sensitive supports are provided,moving away from the bias and stigma that there is noneed to assess people with ID where dementia is sus-pected just because there are no services available. Theestablishment of a register of people with ID affectedby dementia often needs to be government-led and anational database of need, especially one for planningservices, is a sound strategy. However, more work onpredictive factors and dementias needed, especially inpeople with DS, as is more basic science information

and more culturally sensitive supports. There is also aneed to work with peers and to be aware of how peerscan contribute to the care of each other.

Any model of comprehensive services/supports hasto have the goal of enhanced quality of life for theindividual concerned. This means that an effectivemodel may require: legislative or regulatory changes;meaningful evaluation and oversight of the process;carer supports for those in the home; cultural sensitiv-ity; an approach that meets the needs of the workforceand the medical professions; and the encouragement ofa partnership approach between and among a varietyof providers and agencies.

A number of staffing issues require consideration.One is job descriptions; for example, there is a need to define clearly nursing jobs and social carejobs/roles. Another area is the differentiation betweenhealth and social work: Who gets to do what? Thereare obvious issues about the transfer of money, andresources to pay for staff and other adaptations, sothere is a need to look at the coordination of differentfunding resources. The requirement for continued‘active treatment’ (found in some countries) is verymuch goal-driven, and therefore, there is a need tolook at the interpretation or impression of the regula-tions which underpin this practice. Generally, there isa need for a mix of paid and unpaid support. In addi-tion, there is a problem with current cohorts of olderpeople because their natural support systems havebeen removed or destroyed in the past.

Working out the coordination of diverse systems

System coordination issues focus on who does whatunder which statutes or agreements. For example, thepenultimate question in the area of ID and dementiacare is the matter of which system has responsibility. Isit the ID system or the services developed to providefor older people? Furthermore, is it the well-elderlysupport system or the long-term care system forimpaired elderly people? It is important to defineclearly who is responsible and which system isaccountable. Bringing diverse systems together is agoal to strive for, and thinking compartmentally acrossand between services something to avoid. Establishinga register of people with ID affected by dementia canbe a useful first step in determining and defining careneeds and practices.

Fundamental to system coordination is the issue ofcommon terminology. The diverse systems (e.g. ID,




well-elderly ageing, long-term care and AD support)all have their own terms and concepts in use. One sig-nificant challenge is overcoming the language and ter-minology differences between and within ID and olderadult systems. Even in such primary areas as assess-ment, an effort needs to be made to establish how tobest promote standards for diagnosis. Ethical issues,especially questions such as the issue of who makesthe decision(s), need to be addressed: Is it the funder,the direct care provider, the family carers and/or theindividual affected by dementia who makes the decision(s)?

One area of cross-system coordination is the provi-sion of end-stage supports and the question of how‘end of life’ care can be improved by the more effectiveuse of generic resources, such as home-nursing assis-tance and hospice care. Drawing upon diverse systems’resources and knowledge of how to make better use ofsuch resources in flexible, reliable and consistent waysare major system coordination issues.

Coordination also involves delving into paymentschemes and determining how best to use the govern-mental support systems which pay for in-home supportsand care. While the need for such coordination is uni-versal, much of what can be resourced or accessed iscontingent on country-specific schemes. The process offinancing is important to coordination, as are time-scales for releasing funds and recognizing that addi-tional funds are often needed for stage-related supports.

Attaining system coordination often involves com-plexities which require strategic planning to be effec-tive and can involve such questions whether existingservices are comprehensive enough. Thus, to be effec-tive in coordinating diverse care systems, questionsneed to be addressed such as the issues of identifyingstrategies which are effective for maximizing coopera-tion between systems and ways of using historical/tra-ditional connections. Furthermore, issues of valuationor devaluation of pre-dementia disability conditionswill affect how diverse systems choose to interrelate.For example, the question of how the stigma associ-ated with ID and dementia can be reduced at an indi-vidual and service/system level needs to be addressedbefore attempting to build bridges across systems,knowing that such stigmata will often impede intersys-tem communication, and willingness to cooperate orshare resources.

System coordination can also involve issues of per-sonnel. Questions related to such issues as the ways inwhich training can be delivered in robust and effectivemanners, especially where there is a high turnover of

staff and where it might be dependent upon individualprofessional interest, need to be addressed. Trainingcan be targeted and delivered in flexible ways takingaccount of delivery, outcomes and core competencies,and still be either specialized and/or generic, but thisneeds careful consideration of factors which oftentranscend the ID system. To maintain community sup-ports for people with ID affected by dementia, work-force issues (e.g. staff retention and preparation) areimportant internal and external management chal-lenges. Following on these challenges are severalothers, such as how the concern of the general publicfor relatively ‘small’ numbers can be effectively culti-vated, and how the use of ‘advocacy services’, orincreased political awareness and power can be chan-nelled to this end effectively. A number of key policyissues are recognized as fundamental to change and for moving forward, and these can be outlined asfollows:• All individuals have a right to live their life to its fullpotential based on their own values, beliefs and needs,with a continuity of care reflecting changing individualneeds. Service provision should be person-centred toachieve this goal.• There needs to be a balance between protection offunction, and a flexible, proactive and imaginativeapproach to developing quality of life. Funding is keyto achieving this balance.• Dementia registers are important, but there are diffi-culties in developing such registers. Governmentalleadership is required to develop such national databases of need, especially for planning services.• Staff roles and job descriptions require greater clari-fication to minimize conflicts between nursing andsocial care jobs/roles. Universities and regulators needto ensure proper coordination between health andsocial care training.

Promoting relevant research

Research issues involving community supports and careare myriad, mainly because this is an area that hasreceived scant attention in the medical and social ser-vices research literature to date. For example, there is aneed to evaluate different models of care (e.g. thosewhich are person-centred) and conduct evaluationswhich take account of different perspectives (e.g. thetype of living area, ageing in place and supported livingarrangements). These evaluation studies should takeaccount of the different people involved such as directcare providers, volunteers, paid staff and clinicians.




Research is also needed that examines the possibleconflicts which could occur between the differingphilosophies of care which exist in ID services anddementia services. Traditionally, the prevailing carephilosophy in ID services has focused on autonomyand developing skills, whereas dementia care philoso-phies focus on maintenance of skills. Research is alsoneeded that examines the conflicts of ‘need’ aroundspecialist services for ID and older adults, as well aswork that focuses on the commonalties across the ID and older adult service provision fields. Studies are needed which examine the nature and degree ofcooperation between the ID systems, and the ageingnetwork or elder care system. Greater investment isneeded in research on the epidemiology of dementia inthe population with ID with particular regard to theneeds and stages in a person’s life, very early interven-tion, and preventive measures.

Another potential research area is health needs, withan emphasis on how to maintain physical well-beingand cognitive functioning, as well as how to meet socialneeds and come to terms with congenital conditionsand environmental factors. Furthermore, research isneeded on the effects of alcohol and substance use,oestrogen replacement, risk factors, nutrition (includingvitamin supplementation), lipid profiles, and life experi-ences and their effects on dementia. Work is requiredon the possible patterns of disease variation, includingaetiology and duration, and on social needs (e.g. activ-ities, education, employment and stimulation).

System factors and ecological research are alsoneeded that examines such broader topics as socialcare outcomes, quality of life and life expectations.Research questions around the theme of family care-giving (e.g. culture and values, constituents of support,and expectations), age-related differences of carers(especially younger carers and parents who providecare), and the characteristics of both carers and carerecipients all require exploration. Work is also neededon the impact of caring for an individual on otherpeople in the home, and the impact of the dementiaon peers and family members.

Finally, research is needed that explores a range ofsocial policy and financing questions and issues,including cost of care, efficiency, expertise consulta-tion, multiple agencies and systems, accessibility,cross-disciplinary work/research, service values and

principles, shared or common service delivery, andchanging needs. Cost-of-care research needs toexamine questions related to ageing in place versusageing with dignity and those around the timing ofcare in relation to stages of illness/process.

Lastly, the research agenda needs to include ques-tions about how to measure and research these issues;for example, the fundamental question of how we canevaluate the different models of care. Another relevantissue deals with the ethical and consent challengesfaced by researchers, such as ‘legal prohibition’ of par-ticipation in research, the use of protocols for consent,and the ethical questions raised about participation inmedication research.

Dissemination programme

Dissemination of the Edinburgh Principles and dis-cussion points includes distribution to a variety ofinternational and national ID associations, AD organizations and disability-related non-governmentalorganizations throughout the world. The disseminationalso includes posting on the Internet at key websites;for example, <www.uic.edu/orgs/rrtcamr/dementia>,<www.iassid.org> and <www.Alz.co.uk>.

Appendices

Appendices are available upon request from the corre-sponding author (H.W.).

Acknowledgements

The development of this document was supported bythe Foundation for People with Learning Disabilitiesin the UK, by the University of Chicago at Illinois andthe University at Albany in the USA, and the Univer-sity of Stirling in Scotland.

This document was produced by EWGDCP, agroup specially convened to discuss and produce thisdocument. The initial draft was broadly circulatedwithin the group, and to external reviewers andexperts for comment. The final document wasaccepted by consensus of the members of the WorkingGroup. Special appreciation is extended to all thosepeople who commented and added to the document.




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