What do service planners and policy-makers need from research?

WHAT DO SERVICE PLANNERS ANDPOLICY-MAKERS NEED FROM RESEARCH?

MARY MARSHALL*Director, Dementia Services Development Centre, University of Stirling, Stirling, Scotland

ABSTRACT

Nine policy preoccupations have been identi®ed in a recent study of dementia care policies in all European countries.These are used to structure a set of issues which researchers might usefully address to assist service planners andpolicy-makers. Areas where there is already a research literature are identi®ed. Some description and commentary onthe application of current policies in the UK is provided to illustrate the need for research. It is suggested that serviceplanners and policy-makers march to some distant drum which is only remotely related to research, if at all. However,the importance of a research base is stressed with the suggestion that research in related ®elds could usefully betransferred. Copyright # 1999 John Wiley & Sons, Ltd.

KEY WORDSÐdementia; services; planning; policy

Dementia Services Development Centres (DSDCs)exist to extend and improve services for people withdementia and their carers. The DSDC at theUniversity of Stirling in Scotland was the ®rst tobe established (1989). They now exist all over theUK, in Norway, Ireland and New South Wales.This paper is based on the experience of workingwith service planners and policy-makers in Scot-land, who usually work for the Scottish O�ce,local authorities or health boards. They haveachieved a great deal in improving dementia careover the last decade. It is from their perspective thatI have addressed the question: what do serviceplanners and policy-makers need from research?

There are two ways of looking at this question:®rst to wonder where to start because there is solittle research in the ®eld of dementia care, andsecond to wonder if service planners and policy-makers need any research at all, since planning andpolicy-making is usually only vaguely related toresearch. Indeed, service planners and policy-makers might inhabit a parallel universe that goesabout its business regardless of research. TheDementia Services Development Centre has animportant role in interpreting these two worlds to

each other. An example of how this is achievedis the SNAP report (Scottish Needs Assess-ment Programme, 1997), which attempts to distilresearch ®ndings to inform sta� responsible forcommissioning services. Currently in the UK thereis an emphasis in clinical practice on the need forevidence and in services on `best value' (Filkin,1997), which presupposes a more explicit rationale,so there may be a demand for more research. In thispaper I propose to take a middle way and tosuggest some research which would be useful givencurrent policy preoccupations. This will only be inthe most general terms since priorities varyenormously both between di�erent agencies inthis ®eld (health, housing, social work) and geo-graphically.

Since the Maastricht Treaty, the EU has beenable to undertake work on public health. The three`scourges' it has prioritized have been heart disease,AIDS and cancer. Dementia was not on the agendauntil Directorate-General V (DGV) decided tomake a short-term investment. Applications havebeen solicited over the last three years and there hasbeen a burgeoning of interest and expertise. One ofthe most interesting projects is the ETAS (Euro-pean Transnational Alzheimer Study) project runby Professor Morton Warner based at the WelshInstitute for Health and Social Care, University ofGlamorgan, which has systematically studied theo�cial documents relating to policies and practice

CCC 0885±6230/99/020086±11$17.50Copyright # 1999 John Wiley & Sons, Ltd. Accepted 1 November 1998

INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY

Int. J. Geriat. Psychiatry 14, 86±96 (1999)

*Correspondence to: Dr M. Marshall, Dementia ServicesDevelopment Centre, University of Stirling, StirlingFK9 4LA, Scotland. Tel: 01786 467740. Fax: 01786 466846.e-mail: [email protected]

on dementia in each European country. They haveidenti®ed nine key principles which have emergedto inform national policy frameworks, ®ve empha-sized by all Member States and four by most ofthem (see Table 1).

These principles will provide a structure for thispaper since they are the best evidence possible ofthe current preoccupations of policy-makers andplanners in this ®eld. Under each principle thepaper will address the kind of issues which, in myview, need research. This paper will assume thatthere are three di�erent types of research: bluesky research, research which tests and clari®esthe detail, and studies which pull together andrigorously appraise existing knowledge, often fromrelated ®elds. Dementia care needs contributionsfrom all three.

Policy-makers and planners will always say thatthe information they need most and which is mostoften not available is about the relative costs ofservices. Much policy is based on assumptionsabout costs, for example the belief that communitycare is cheaper than institutional care. It is rarelybased on systematic longitudinal research. TheDGV funds have been given to several projectsconcerned with costs yet the information available,the methodological problems and the di�culties ofcomparisons render it almost impossible to pro-duce little more than generalizations. This paper isno di�erent. Indeed, beyond these few remarks theissue of costs will not be addressed.

POLICY PRINCIPLES ESPOUSED BYALL EUROPEAN COUNTRIES

1. People with dementia should be enabled toremain at home for as long as possible

Enabling people with dementia to remain athome for as long as possible is a central policy

preoccupation internationally and is in manycountries a response to large-scale institutionaliza-tion of people with psychiatric disorders in the past,which was expensive as well as unpopular. It hasproved di�cult to identify the key factors whichmake staying at home more or less likely. They aregenerally seen to include:

. The presence of a relative

. The relationship between the carer and the caredfor

. The motivation of both parties

. The assistance available

. The nature and extent of symptoms of thedementia such as memory loss, behaviour andconcomitant physical and psychological illness

. The health of the carer both psychologically andphysically, and their morale.

This is well-trodden turf as far as researchers areconcerned, although clear evidence for helpfulinterventions is sparse. However, policy-makersstill work in a vacuum for several reasons. Theseinclude the fact that research is not su�cientlyclear, for example it often fails to specify howmuch of a service is required and at what stage.Another reason is that the interventions for carersstudied are not those which are generally available.Professor Mittelman's research (Mittelman et al.,1996), for example, clearly demonstrates thevalue of psychosocial interventions with carers inextending their capacity to keep people withdementia at home, yet few policy-makers in theUK understand what psychosocial interventionsare. It is also very di�cult to specify a ¯exible,individually responsive service in our contractculture.

Evaluative research is usually undertaken oninnovative services that have occurred for veryspeci®c reasons. Evaluation may tell us what hasbene®ted people with dementia and their carers. It

Table 1. Key principles which have emerged to inform national policy frameworks

Principles emphasized by all Member States Principles emphasized by most Member States

1. People with dementia should be enabled to remain at home

for as long as possible

2. Carers should receive as much help as possible in order to

facilitate 1 above

3. Su�erers should retain maximum control over the support

they receive

4. All relevant services should be coordinated at the local level

5. Su�erers in institutional care should live in surroundings

which are as `homely' as possible

1. There should be a systematic attempt to equate service

provision with need

2. Categorical care should be replaced by care which addresses

the general needs of su�erers

3. Early diagnosis of dementia should be encouraged

4. The needs of people with dementia are not addressed

separately from the needs of older people in general at the

national level

Copyright # 1999 John Wiley & Sons, Ltd. Int. J. Geriat. Psychiatry 14, 86±96 (1999)

RESEARCH FOR SERVICE PLANNERS AND POLICY-MAKERS 87

rarely takes account of the `newness' phenomenon(the fact that sta� are highly motivated to succeedin the ®rst phase of any project) or of the peopleinvolved and the local culture in which theyoperate. Replication is therefore problematic.Policy-makers often want to be seen as innovators.This can be a higher priority than learning fromresearch.

Dementia is a complex disease, the reactions ofeach individual and their family vary and policycultures vary both geographically and in terms ofcurrent policy trends or `fashions'. In the UK at theend of the twentieth century, we live in a culturewhich seems to demand simple quanti®ableanswers to problems. Dementia must be `cured'with a tablet, measurable indicators such as shorterwaiting lists are seen as indicative of a better healthservice, and there must be one service answer whichwill keep people out of longstay care. This is withina wider explicit social policy of social inclusion andcost containment and an implicit one, sadly, ofcontinuing ageism. The intervention chosen forattention seems to be as much as matter of fashionin policy circles as anything else.

There are also numerous new policy inter-ventions, too new to have been subjected toresearch.

One of these new policy interventions is thedesign and modi®cation of individual houses andthe use of technology in them. Disorientation isproving di�cult to incorporate into everydaythinking about disability. Thus most guides tobarrier-free housing (Martin, 1992; Smith, 1997), aconcept also known as lifetime homes, focus on thepossibility that all of us at some time or other willhave impaired abilities such as mobility and reach-ing, and that designing a house to take account ofthis will help us remain independent. Rarely dothey mention that many of us will at some time bedisorientated through illness or, most commonly,through dementia. If houses were orientating orhad the potential to be easily and cheaply modi®ed,would it be possible for people with dementia toremain in them for longer? Design guides are beingproduced all the time for housing for older people.Research into the speci®c design characteristicswhich might assist people with dementia would beinvaluable.

Technology has a greater `imperative' about itand there is a great deal of interest in incorporatingtechnology into the houses of people with dementiato assist them to remain independent. Not surpris-ingly, given the current western preoccupation with

risk (Alaszewski and Manthorpe, 1998), the maininterest is in safety devices. These include passivealarm systems which relate to sources of risk such ascookers, ®res, baths and front doors. There isalso huge potential in equipment which promotesindependence such as reminder devices andenvironmental control devices, and equipmentwhich either stimulates or relaxes people withdementia. These devices are receiving rather lessattention. Policies in health, social care and housingare going to be formulated and plans made over thenext year or twowith very little research evidence ofthe impact of these new technologies on the lives ofpeople with dementia living at home.

2. Carers should receive as much help as possible inorder to facilitate the above

This is an area where there has been a great dealof research. Preventing people with dementia fromentering institutional care is often seen as a desir-able outcome for interventions to help carers.Quality of life for both the person with dementiaand their carer and prevention of disability arerarely considered as key outcomes. The research onpreventing admission to longstay care needs to beconstantly reviewed and presented in digested formfor policy-makers since this is a fundamentalpolicy. There are often unsubstantiated assertionsin planning documents justifying expenditure onparticular interventions. It is often asserted, forexample, that more home helps or more day care ornew services such as night care are required to keeppeople at home. Remaining at home or enteringinstitutional care may have more to do with waitinglists and cost containment than any intervention.Dissemination of existing research would go someway to create a better understanding of the com-plexity and constantly changing nature of thisdisease in its family context and the constellation ofneeds which arise.

3. Su�erers should retain maximum control over thesupport they receive

It is surprising that this third policy strandshould appear in all European documentationgiven the dearth of expertise on how to achieve it.One can only assume it is a transfer from policiesfor people with disabilities, older people generallyor from policies for disabled people generally. Inthe case of the latter, there has been a very strongmove in the UK towards greater control by the


88 M. MARSHALL

people themselves, exempli®ed by the movetowards being given cash to buy services ratherthan receiving services directly. Interestingly, thisdirect payments system does not so far includeolder people. When we undertook our EuropeanAlzheimer Clearing House (EACH) (1997)survey of services and asked service providersabout empowerment of people with dementia, weobtained a very scant response. However, all theindications are that this will be a major area ofpolicy development in the next few years. MalcolmGoldsmith's (1996) book Hearing the Voice ofPeople with Dementia on the topic has been a best-seller and there are numerous British initiatives andresearch studies related to hearing the voice ofpeople with dementia, such as that by Keady et al.(1995).

What do service planners and policy-makersneed from research into giving people withdementia and their relatives control over thesupport they receive? Interestingly, in strictly policyterms I do not think they need research at all. Theprinciple ®ts in with a current preoccupation withthe user voice which can be seen in every currenthealth and social care policy document. `Bestvalue', for example (Filkin, 1997), is a set of UKgovernment policy objectives in which the satis-faction of the user is a key component. Of course,user satisfaction and user control are by no meansthe same thing, but they are closely related. There isan important and much neglected research litera-ture on older people's satisfaction with long-termcare which emphasizes the importance of auto-nomy (Sinclair, 1988), a ®nding that is borne outagain and again in other research (Murphy, 1998).This literature could do with a wider airing andapplication to the ®eld of dementia care. Theprinciple that `what suits ®t older people shouldguide our thinking on people with dementia unlessthere are clear indications otherwise' is insu�-ciently accepted.

Policy-makers in the UK therefore currentlypromote the principle of user control and want toknow from research how best to achieve this forpeople with dementia and their carers. There is verylittle research. There have been policy initiativeswhich have given relatives control over the appor-tioning of resources. These include getting a groupof carers to allocate access to a respite bed betweenthem. However, this kind of initiative needs to beproperly evaluated. There is a strong groundswellof exasperation in relatives in the UK at themoment of which the formation of the Relatives

Association (1998) is an illustration. They aredemanding greater involvement in services. It ismy impression that this is matched by greateropenness by sta�, that they sometimes ®nd relativesreally di�cult. The Scottish DSDC is producing apractice guide to assist sta� to involve relatives as aresponse to this pressure. It would be useful if therewas research into techniques for achieving greaterautonomy for relatives in ways which do notundermine sta�.

The DSDC in Stirling is currently researching aset of techniques which might assist sta� to hear theviews of people with dementia about the servicesthey receive. What is lacking is research on whenand how people with dementia can make choices inevery aspect of their lives. We need to knowwhether advance directives made at the point of anearly diagnosis can include choices about treat-ment, care options and participation in researchstudies as well as resuscitation. We need to knowwhen and how people with dementia, with varyinglevels of disability, can make day-to-day choices aswell as major decisions. This is not straightforward.There has also been too little attention paid tosome of the consequences of greater autonomy forpeople with dementia, such as the inevitablecon¯icts of interest that arise with other peoplelike their carers, both paid and unpaid. We knowlittle about the extent to which these arise, howserious they are and how best they might beresolved. This is surprising given the widespreadrecognition of the vulnerability and powerlessnessof people with dementia. Another dimensionneeding greater attention is that of risk assessment.It is a buzz word on every social worker's andcommunity psychiatric social nurse's lips, yet thereis little research on how to perform it with peoplewith dementia and how to base decisions on riskassessment. Supposing, for example, that there wasa one in a hundred chance of a ®re in a counterkitchen in a dementia unit (which provides a realopportunity for autonomy in terms of undertakingwell-learned tasks). Is this a su�ciently highprobability to condemn the whole idea, to makespecial suppression arrangements or to ignore therisk? The knowledge to make this judgement doesnot exist. Risk assessment and dementia is oftenstill in the realms of folklore for both health andsocial care sta�.

Advocacy for people with dementia has onlyrecently been seen as both possible and desirable.We know little about the best way to achieve it forpeople with dementia at di�erent stages through



the disease. It is a particularly important issue forminority ethnic groups, whose needs are so poorlyunderstood and about whom we know so little. Wealso need to know what skills are needed byadvocates in terms of techniques of communicationand also of choice. More imaginative approachessuch as the use of life story books may beparticularly signi®cant when people with dementiabecome very disabled.

Ethical issues are receiving increasing amountsof attention from policy-makers and serviceplanners. Research would be valuable on thewhole process of decision-making in relation topeople with dementia, especially when decisionsare made which infringe their normal civil liberties.Who makes them at present? On what basis?Would ethical protocols assist?

4. All relevant services should be coordinatedat local level

There is a very strong move in the UK at present,exempli®ed by the current White Papers on thehealth services for England and Wales, and Scot-land (Department of Health (England and Wales),1997) and Scottish O�ce DOH (1997), to shiftdecision-making and allocation of funds as close tothe person as possible. The policy buzz words areall about partnership, integrated care, holisticassessment. This is clearly not unique to the UK.The trouble is that there is a lot of exhortation onhow this objective is to be achieved, but littleguidance. Joint work between health and socialcare sta� is still not customary in the UK. Themove towards increasing decision-making at thefamily doctor level may or may not make it happenmore often. If it can be made to work, it will exposeother boundaries such as the one between primaryand secondary care, or that between the acute andchronic sector. At a macro policy level, theboundary between policies for dementia that arerightly those of mental health and those which aremore appropriately aged care is unclear. There willalways be boundaries. We need to know which onesare best overcome by structural changes and whichcan be overcome by other mechanisms such as jointtraining or procedures.

A phenomenon which has existed in the UK fora number of years is the mental health team forolder people, and sometimes speci®cally fordementia. Numerous descriptions of their func-tioning have been written up over the last 10 yearsor so, the most recent being the publication by

Sheard and Cox (1998). The overriding impressionis that these teams are much liked and apparentlyvery successful, although systematic evaluations arerare (Mountain, 1998). Yet they are not sustain-able. To survive, they seem to need clarity ofobjectives and membership, as well as strongleadership and management support and strongpersonal trust and liking between participants.They rarely have all of these for any length of time.

Coordination is an elusive goal. In the UK weembarked on a policy of assessment and caremanagement in our community care legislationwhich placed the role for coordination ®rmly withthe local authorities without much clarity as to howhealth personnel were to be involved. Given themajor role of health services in the lives of peoplewith dementia, coordination was going to beproblematic, and so it has proved. There is awidespread view that coordination has not workedvery well. For some people with dementia who areperceived as having complex and enduring mentalhealth problems, the Care Programme Approachhas been instigated, which is basically a return tohorizontal coordination from the hospital outwardinto the community, with health taking the lead.The key issue is who should be responsible and theextent to which they are resourced in both skillsand time to do it. Coordination is not an easy by-product: it requires motivation, time, systems,meetings, knowledge and skills. The obviouslocus for coordination in the UK is the local healthcentre and all current health policies are towardsthe centrality of the family doctor in all aspects ofcare. In Scotland this has gone as far as theformation of Primary Care NHS Trusts. Thedi�culty in the ®eld of dementia care is the historyof lack of interest by most GPs. Models of localityplanning and provision of services do exist andresearchers should ensure that the impact of theseis monitored for people with dementia. It ispossible to take the view that if these new modelsof service coordination successfully integrate themedical and the social model of care for peoplewith dementia, they will work for everybody, sincedementia is the most complex biopsychosocialdisease.

The DSDC has produced a `continuum of care'in a report written to inform planning andcommissioning sta� (SNAP, 1997) as to whatrange of services should exist in any locality forpeople with dementia and their families. It is basedon research inasmuch as it existed when it waswritten. The key characteristics are that help should


90 M. MARSHALL

be available locally from the earliest stages of thedisease to the end, that there should be bothcoordination and continuity of care and thatservices should be seen as independent of speci®cbuildings. As far as possible, help should move tothe person and the family rather than requiringthem to attend or move. Continuity is notmentioned in the ETAS list, yet for people withdementia and their families it seems cruciallyimportant. We need research to assist us tounderstand the relative importance of continuityversus appropriateness. Is it more important thatpeople with dementia and their families receivehelp from the same people or is it more importantthat the person has the precisely appropriate skillsat the right time? The answer is always going to bea bit of both, but we need greater understanding ofthe way to judge the relative merits, particularlywhen crucial decisions have to be made aboutmoving people to more appropriate services orputting in more support at home.

This issue becomes very signi®cant indeedaround the issue of long-term care: how do weweigh up the relative merits of a home for lifeversus care for people in a setting where the needsof the residents are homogeneous? This might be inrelation to key characteristics, usually challengingbehaviour or need for physical care but sometimesissues of age, lifestyle and cultural background.Without research and e�ective dissemination,decisions on these matters are made on the basisof fashion or pragmatism.

Finally, a very neglected aspect of coordinationacross another, and possibly the most di�cultboundary: that within and between the acute healthsector and the rest. Older people are high users ofthe acute sector, and for many of them it fails tofollow through their care into the community.There has been a great deal of research (Dalley andDenniss, 1997, for example) and practice guidance(Department of Health, 1989; Henwood, 1994) inthe UK into problems around discharge fromhospital, an issue which has become more signi®-cant as convalescence and rehabilitation beds havebeen phased out. As ever, the picture is even moreunsatisfactory for people with dementia, who areoften disabled by the experience of acute care itself,which can fail to maintain their remaining com-petence for a variety of reasons. People withdementia form a signi®cant proportion of the`blocked beds' (patients awaiting discharge who nolonger require acute care) and cause much resent-ment. The research on discharge from hospital has

not addressed this issue of excess disability in acutesettings and the implications for discharge. It issorely needed, both to identify appropriate inter-ventions and to stop people with dementia beingblamed for clogging up the system, with all the guiltand poor decision-making that result from such anattitude.

This policy theme above all the others raises avery central issue for this paper, which is the timelag in research. Service interventions rarely waituntil there is evidence for their e�cacy. Researchtends to follow wide implementation of policiesrather than precede it as in pharmaceuticalresearch. By the time ®ndings are available, policieshave often moved on. Service interventions aremuch more often in¯uenced by politics and policyfashion trends across a very wide ®eld. Macro shiftsin thinking create waves that a�ect every aspect ofservice planning and policy, with research playing arelatively small part until well after the wave haspassed. We need to be a great deal more skilful inlearning from research in related ®elds (eg learningdisability) and in identifying approaching trends insocial policy so the research is ahead of its wide-spread application.

5. Su�erers in institutional care should live insurroundings which are as `homely' as possible

Great strides have been made in the last 10 yearsin changing the vision of institutional care. Night-ingale wards with beds down each side for peoplewith dementia are now relatively rare. It is generallyassumed that people with dementia need smallerunits and to share bedrooms with small numbers ifat all. This change is not con®ned to people withdementia: indeed, it has been muchmore radical forpeople with learning di�culties, where principlesof normalization have had enormous impact. Weare still at the stage in dementia care of needing toknow more about the impact of the size of groupsrather than promoting the concepts of indepen-dent living, as is happening in learning disability.

The key issue is, `what does homely mean?'.It means di�erent things in di�erent countries.In Sweden, and increasingly in other parts ofScandinavia, it means group homes, usually innormal housing. In the UK and Australia, it moreusually means units of eight or 10, purpose-built asresidential or nursing homes. In the USA, itgenerally means nursing home units, thoughrecently assisted living dementia care has beengetting a lot of attention. In all countries the trend



is to more domestic furniture and ®ttings, and moresingle rooms in all facilities. For most of us withoutdementia these features have little to do with ourhomes, because they all presuppose group care.Few of us live with groups of other people,especially in old age. Very few communal settingsenable people to sustain the routines of home.

There is a remarkable international consensus ondesign for dementia (Calkins, 1988; Cohen andWeisman, 1991; Cohen and Day, 1993; Judd et al.,1998), which emphasizes either key characteristicsor key principles (Table 2).

There is a need for a great deal of research in this®eld, since the consensus is not based on researchexcept in the sense of consultations with sta� in this®eld and project development. As Lawton (1987)points out, there is an astonishing range ofprofessionals involved in design and they all havetheir own approach to research. Architects seeresearch as trying out designs (which appearswholly unscienti®c until you grasp the complexityof a building and the way every aspect is inter-linked), behavioural scientists struggle with the¯uid and multifactorial nature of living environ-ments, clinicians are deeply cynical of research inthis ®eld without experimental studies but rarelytry them (a small, honourable exception beingWilkinson et al. (1994) in New Zealand, who testedtoilet door signs), interior designers are moreconcerned with user satisfaction than researchinto e�cacy as far as outcomes for people withdementia are concerned. We seem to have had aresearch stalemate for a number of years, duringwhich time this consensus has developed.

Two trends can be observed which may be highlysigni®cant and will potentially rock the consensus.Both could be researched in time to inform furtherdevelopments. The ®rst is an increasing awarenessof diversity in cultural background. A home for therural aboriginal people of Australia or for peoplefrom the Bangladesh delta will be very di�erent as,on a smaller continuum, will be the home of aninner city Afro-Caribbean elder from the Bronxand a prairie farmer. We need to know the keydesign characteristics which really help people withdementia from these communities to feel at homeand to function at the highest levels possible. Thesecond is the trend towards keeping people withdementia in their own homes or providing normalsingle-person or family dwellings which have beenmodi®ed or purpose-built for dementia. We needto know what design characteristics are importanthere too.

PRINCIPLES EMPHASIZED BY MOSTMEMBER STATES

1. There should be a systematic attempt to equateservice provision with need

The principle of assessing need was central to thecommunity care policies in the UK and we havelearned how very di�cult it is to achieve. It seemsto make very little sense to sta� doing theassessment and to the people being assessed. It ismuch easier to see assessment as a process ofassessing eligibility rather than need, but unlessneed is assessed we will not get away from staticmodels of provision. A good form helps, such asthe CarenapD promoted by the DSDC (McWalteret al., 1994), which directs the person completing itto met and unmet needs. One of the problems isthat we are living in a time of resource constraint,which means that sta� feel their main task isrationing rather than developing fresh responses tonew or newly recognized needs. Indeed, the guid-ance from the Scottish O�ce at the time stressedthat need was to be identi®ed only within theresources available (Scottish O�ce, 1991). In a

Table 2. The consensus on principles and key designfeatures

The consensus on principles of design includes:

. Design should compensate for disability

. Design should maximize independence

. Design should enhance self-esteem and con®dence

. Design should demonstrate care for sta�

. Design should be orientating and understandable

. Design should re¯ect a balance of safety and autonomy

. Design should reinforce personal identity

. Design should welcome relatives and the local community

. Design should allow control of stimuli

The consensus on design features includes:

. Small

. Familiar, domestic, homely in style

. Plenty of scope for ordinary activities (unit kitchens,

washing lines, garden sheds)

. Unobtrusive concern for safety

. Di�erent rooms for di�erent functions

. Age-appropriate furniture and ®ttings

. Safe outside space

. Single rooms big enough for lots of personal belongings

. Good signage and multiple cues where possible, eg sight,

smell, sound

. Use of objects rather than colour for orientation

. Enhanced visual access

. Controlled stimuli, especially noise


92 M. MARSHALL

sense, at a time when we were attempting a changeof culture, the environment in which it washappening reinforced traditional practice. Whenthe history comes to be written it will, I think, beclear that we failed to provide time, space andtraining for sta� doing assessments to learn how toassess need and match services to this need. It willbe very interesting to see how the rest of Europe isgrappling with this policy, given that most of themhave espoused it.

There has been a considerable amount ofresearch into the changes in practice resultingfrom the changes in community care policy in theUK, for example that undertaken by the SocialWork Research Centre at the University of Stirling(Petch et al., 1996). There have also been more¯exible responses to the meeting of needs whichrely less on current services and more on individualpreferences. The most well developed is person-centred planning (Svanberg et al., 1997; SHSIA,1997), which is best developed in relation tolearning disability. We need to know more aboutpractice with people with dementia.

One of the problems in most countries in theworld is the division of professional and organiza-tional boundaries into health and social care. Thisworks well for acute care but is really unhelpful forpeople with chronic and progressive conditions,especially if they are related to brain function. Herethe distinction between health and social is reallyimpossible to make. The Australian model ofmultidisciplinary aged care assessment teamswould seem to be a lot more appropriate, if ratherhealth-driven. Other international comparisonswould be very valuable indeed.

2. Categorical care should be replaced by carewhich addresses the general needs of su�erers

There is increasing awareness in the UK andclearly throughout Europe that people withdementia are not just receiving special health andsocial care but are moving about in our towns andcities like the rest of us. This realization has led theMinisterial Task Force on Dementia Services inVictoria (1997) to the view that dementia is a publichealth issue. Making our communities `dementia-friendly' is the challenge. To an extent, it could besaid that we have the expertise in our ®eld and wenow have to share it. We have to make sure thatour shopping centres are dementia-friendly, ouremergency services are su�ciently knowledgeable,our transport systems are as comprehensible as

possible, our general facilities for older people ableto cope with all but the most extreme di�cultiesexperienced by people with dementia, and so on. Ifour communities are dementia-friendly they canenhance independence and self-esteem, and if notthey can increase dependence and lack of con-®dence.

Research can help planning and policy acrossthis broader canvas by evaluating what works andwhat does not work. Our knowledge and skillsfrom the world of dementia care are under-researched, but the transfer of them to the widerworld will not wait. They will be modi®ed intransfer too. Some relevant research (O'Brien et al.,1993) probably exists in the ®eld of disability,especially learning disability. But on the whole itseems unlikely that disorientation will have hadanything like enough research attention.

If we take the acute hospital wards as a casestudy, we know that the ®rst area needing attentionis admission and assessment systems. To takean example: in the UK, to ensure the highestpossible levels of bed occupancy, patients are oftenmoved around the wards. This is very unhelpful topeople with dementia. We need to know if studieshave been done on the impact of these policies onpeople without dementia, or people with acuteconfusional states. We need to know if there aresystems anywhere for identifying patients for whomthis policy is contraindicated and how these work.

The second area needing attention is the skill offrontline sta� both in dealing with challengingbehaviour and in preventing it. It seems likely thatthere is a literature on this issue. Does it make anydi�erence if sta� are aware and trained? Can wereduce excess disability? Another area needingattention is design modi®cations. Can we makeacute hospital wards more orientating? How?Answers to these questions would have a hugeimpact on very substantial numbers of people withdementia as well as other patients. It is a truismthat `dementia-friendly' equals more `friendly' foreveryone.

Raising general levels of awareness about theunnecessary disabilities associated with dementia isan urgent task for policy-makers for severalreasons, one of which will be covered in the nextsection. It would seem likely that there is researchon how best to achieve this goal from the disabilityliterature. There are many parallels with mobilityproblems. People in wheelchairs have had long andhard experience of raising public awareness, someof which must have been the subject of research.



We need to learn from this and then identify how toproceed for dementia.

3. Early diagnosis of dementia should beencouraged

This is an illustration of how policies race aheadof research. We know little about the advantagesand disadvantages of early diagnosis (and someauthors take opposing views) except in the sensethat the new cholinesterase inhibitors seem to bemost e�ective in the early stages of Alzheimer'sdisease. I suspect the policy has little to do withresearch and more to do with a user-centredprinciple: that people should have an earlydiagnosis so that they can be given the diagnosiswhen they are still able to understand it and makesome decisions (Fearnley et al., 1998).

In this area of dementia care there is consider-able attention from researchers, in the sense of howearly diagnosis is made and by whom. Theaccuracy of diagnosis is improving, which removessome of the particular dilemmas arising fromuncertain diagnosis in our ®eld (Jobst et al.,1997). The issue of sharing the diagnosis is alsoattracting research attention, not least from theCentre for Social Research in Dementia. There is agreat deal we need to know. There is probably aliterature about sharing diagnoses of terminalillnesses in ®elds such as cancer and the neurologi-cal diseases. How do we know whom to tell andhow? What kind of help is needed at these times?What do patients want to know? Is this the besttime to write advance directives? Issues of terminalcare need to be addressed.

There has been far too little research onmemory clinics. It seems likely that they couldhave a central role in dementia care, providing notjust a diagnosis but a link to sources of help andadvice. They would appear to be able to cutacross a whole set of boundaries such as age andaccess arrangements. We need to know moreabout the most e�cacious arrangement for theseclinics. Should they be integrated into social aswell as health care systems? What professionalsare necessary and what are their respective roles?Are they better as a roving resource which goes tothe place most acceptable to the patient or do theyneed an identi®able location? What about accessarrangements, especially for the less proactivepatient? Should they have open access or accessvia the family doctor? By whom and how should

the diagnosis be shared? What is their role inmanagement, for example in decisions likewhether or not the person with dementia shouldbe allowed to drive?

4. The needs of people with dementia are notaddressed separately from the needs of olderpeople in general at the national level

This Eurospeak phrasing is raising the oldchestnut of segregation versus integration. Thereality is that in every country most people withdementia will be cared for in mixed settings: theneed is for these settings to be geared up to provideadequate dementia care. Segregation is only evergoing to be available for a minority, and the keyquestion is: which minority? Generally speaking,specialist dementia care is more expensive so ittends to be for people who have high levels ofchallenging behaviour. But it might equally be forpeople in the terminal stages. Specialist care alsooften exists for groups of younger people withdementia, although here too it is rare. There are afew units for people with Korsako�'s dementia andunits planned for those with Down's syndrome.The unit for people with HIV-related cognitiveimpairment in London has recently closed. Theneed for specialist home and day care for youngerpeople with dementia, both Alzheimer's diseaseand vascular dementia, seems well appreciated evenif it is yet to be a reality in much of the UK. Weneed to know a great deal more about whensegregation is useful and when it is not.

A theme of this paper has been the need to knowmore about meeting the needs of people withdementia wherever they are. We learn fromspecialism and apply it both to services for olderpeople generally and to society as a whole. It mightbe more helpful to write all policies for older peopleas if they had dementia. It would certainly help allolder people if this was the case and would go along way to a more socially inclusive policy. Thereare useful parallels from other parts of thedisability movement. For example, if all buildingsare accessible for people in wheelchairs it also helpsthose of us who are a bit sti�. We know far too littleabout the relative impact of separate versus generalpolicies, and indeed formal policies may have littleto do with service development and practice on theground unless the users are skilled in demandingimplementation. There is an urgent need for moreuser-driven outcomes in research.


94 M. MARSHALL

CONCLUSION

Evidence-based practice has become a mantrawhich often excludes debate. There is a need formore debate about the nature of evidence; it ismuch easier with pharmaceutical or surgicalinterventions than it is with services. There is alsoa danger of doing nothing because there is no orpoor evidence. As serious is the way that lack ofevidence can be used to justify ageist practice. Thelack of evidence for single rooms rather thandouble rooms which is used to justify the latter, forexample, would never be used with young disabledpeople who expect to be treated like normal adults.Related is the issue of the limitations of policiesthat focus on the measurable, to which I havedrawn attention. It is very di�cult to measuremotivation, for example, which may often be thekey determinant of outcome.

I have also drawn attention to fashion and trendsin policy-making where the ripples of some distantstone thrown into world thinking ®nally reachdementia care. Where does the push for a localityfocus come from? Is it related to policies of sub-sidiarity in Europe? Is there an inevitable swing of apendulum between central and local control? Is itfundamentally about reducing costs of publicexpenditure and therefore related to major inter-national economic trends? User involvement isanother `hot' policy imperative, the origins ofwhich are far from clear. Does it relate to theincreasing power of the disability movement? Doesit relate to the increasing value given to autonomyover collective provision?

The time lag issue has been mentioned and is socentral an issue that it needs no further emphasis. Ihave mentioned the need to identify key issues onthe horizon so research might better run aheadof policy. Having done this we could makemuch better use of research ®ndings from other®elds or from other countries. My judgement is,for example, that a public health approach will soonbe seen as sensible for dementia and we can learnfrom numerous other ®elds and from othercountries.

The need to learn from other ®elds is a recurringrefrain in this paper, in part because it seems sowasteful of time and e�ort not to. We could, forexample, learn from child psychiatry about thee�cacy of close professional collaboration and aconsistent approach in that ®eld. We canlearn about the problems that arise for specialistservices for people with dementia with challenging

behaviours, which are well known in the ®eld oflearning disability.

REFERENCES

Alaszewski, A. and Manthorpe, J. (1998) Welfareagencies and risk: The missing link? Health Soc.Care Commun. 6(1), 4±15.

Calkins, M. P. (1988) Design for Dementia: PlanningEnvironments for the Elderly and the Confused.National Health Publishing, Maryland.

Cohen, U. and Day, K. (1993) Contemporary Environ-ments for People with Dementia. Johns HopkinsUniversity Press, Maryland.

Cohen, U. and Weisman, G. D. (1991) Holding onto Home: Designing Environments for People withDementia. Johns Hopkins University Press, Maryland.

Cox, S. and Sheard, D. (Eds) (1998) Teams, Multi-disciplinary and Interprofessional Working and Demen-tia. Dementia Services Development Centre, Stirling.

Dalley, G. and Denniss, M. (1997) Patient Satisfaction:The Discharge of Patients from Hospital. Centre forPolicy on Ageing, London.

Department of Health (1989) Discharge of Patients fromHospital. HMSO, London.

Department of Health (England and Wales) (1997) TheNew NHS: Modern and Dependable (White Paper).HMSO, London.

Department of Health, Social Services Inspectorate(1989) Homes are for Living in. HMSO, London.

European Alzheimer Clearing House (EACH)(1997) Report on Workpackage 2: Examples of GoodPractice in the Continuum of Care. Dementia ServicesDevelopment Centre, Stirling.

Fearnley, K., McLennan, J. and Weaks, D. (1998) TheRight to Know? Sharing the Diagnosis of Dementia.Alzheimers Scotland±Action on Dementia, Edin-burgh.

Filkin, G. (1997) Spotlight on Best Value LGIU, London.Goldsmith, M. (1996) Hearing the Voice of Peoplewith Dementia: Opportunities and Obstacles. JessicaKingsley, London.

Henwood, M. (Ed.) (1994) Hospital Discharge Work-book: A Manual on Hospital Discharge Practice.Department of Health, London.

Jobst, K. A., Barnetson, L. P. D., and Shepstone, B. J. onbehalf of OPTIMA (1997) Accurate prediction ofcon®rmed Alzheimer's disease and the di�erentialdiagnosis of dementia: The use of NINCDS±ADRDAand DSM-III-R criteria, SPET, X-ray CT and ApoE4in medial temporal lobe dementias. Int. Psychogeriat.9(1), 190±223.

Judd, S., Marshall, M., Phippen and P. (Eds) (1998)Design for dementia. J. Dementia Care. p. 12.

Keady, J., Nolan, M. and Gilliard, J. (1995) Listen to thevoice of experiences. J. Dementia Care. 00, 15±17.



Lawton, M. P. (1987) Strategies in planning environ-ments for the elderly. J. Ind. Living. Fall, 000±000.

Martin, F. (1992) Every House You'll Ever Need:A Design Guide for Barrier Free Housing. EdinvarHousing Association, Edinburgh.

McWalter, G., Toner, H., Corser, A., Eastwood, J.,Marshall, M. and Turvey, T. (1994) Needs and needsassessment: Their components and de®nitions withreference to dementia.Health Soc. Care Commun. 2(4),213±219.

Ministerial Task Force on Dementia Services in Victoria(1997) Dementia Care in Victoria: Building a Pathwayto ExcellenceÐFinal Report. Department of HumanServices, Victoria Government, Victoria.

Mittelman, M., Ferris, S., Steinberg, G., Shulman, E.,Mackell, J., Ambinder, A. and Cohen, J. (1996)An intervention that delays institutionalisation ofAlzheimer's disease patients: Treatment of spousecaregivers. Gerontologist. 33(6), 730±740.

Mountain, G. (1998) The delivery of community mentalhealth services to older people.Ment. Health Rev. 3(1),7±15.

Murphy, C. (1998) Evaluation of Town Break BefriendingScheme. Dementia Services Development Centre,Stirling.

O'Brien, J., Pearpoint, J. and Forrest, M. (1993) PATH:Planning Alternative Tomorrows with HopeÐA Work-book for Planning Possible Positive Futures. InclusionPress.

Petch, A., Cheetham, J., Fuller, R., MacDonald, C.,Myers, F. with Hallam, A., Knapp, M. (1996)

E�ciency and E�ectiveness in the Delivery ofCommunity Care. Stationery O�ce, Edinburgh.

Relatives' Association (1998) As Others See Us.Relatives' Association.

Scottish Needs Assessment Programme (SNAP) (1997)Dementia. Scottish Forum for Public Health Medi-cine, Glasgow.

Scottish O�ce (1991) Community Care in Scotland:Assessment and Care Management. Scottish O�ce,Edinburgh.

Scottish O�ce (DOH) (1997) Designed to Care: Review-ing the National Health Service in Scotland. (WhitePaper). Scottish O�ce, Edinburgh.

Sheard, D. and Cox, S. (1998) Teams, Multidisciplinaryand Interprofessional Working and Dementia.Dementia Services Development Centre, Stirling.

SHSIA (1997) People, Plans and Possibilities: ExploringPerson Centred Planning. Washington Court, Edin-burgh.

Sinclair, I. (Ed.) (1988) Residential Care: The ResearchReviewed. HMSO, London.

Smith, A. (1997) What Does `Barrier Free' Mean forPeople with Dementia in Designing New Housing:Discussion Paper. Dementia Services DevelopmentCentre, Sterling.

Svanberg, R., Stirling, E. and Fairbairn, A. (1997)The process of case management with people withdementia. Health Soc. Care Commun. 5(2), 134±139.

Wilkinson, T. J., Henschke, P. J. and Handscombe, K.(1994) How should toilets be labelled for people withdementia? Austral. J. Ageing 13(4), 163±165.


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Documents

What do service planners and policy-makers need from research?