A SURVEY OF SERVICES FOR YOUNGER PEOPLEWITH DEMENTIA

ROBERT BARBER1�1Lecturer in Old Age Psychiatry, University of Newcastle upon Tyne, UK

ABSTRACT

Objective. To identify the provision of services for younger people with dementia by trusts in England and toexamine their attitudes towards specialization.

Design. Postal survey.Participants. Hospital and community trusts in England. Of 354 trusts, 304 responded (84%).Main outcome measures. Provision of general adult and old age psychiatry services: type of services provided for

younger people with dementia and specialists providing these services; provision of specialists services for youngerpeople with dementia; attitudes towards developing specialists services; assessment of need.

Results. The majority of services were provided by trusts with existing psychiatric services, in particular old agepsychiatry services. Specialization was uncommon and practised by only 12 trusts. In contrast, 101 trusts saw thedevelopment of specialists services as `necessary', especially those trusts who had investigated the needs of youngerpatients with dementia ( p � 0:001).

Conclusion. This survey supports the notion that trusts and purchasers should undertake to assess the needs ofyounger patients with dementia. Role of specialization is discussed. # 1997 John Wiley & Sons, Ltd.

Int. J. Geriat. Psychiatry, 12, 951±954, 1997.No. of Figures: 0. No. of Tables: 1. No. of References: 14.

KEY WORDSÐpresenile dementia; health service research

Comprehensive services for older people withdementia are now widely established. In contrast,services for younger patients with dementia remainunderdeveloped (Williams, 1995).

Reviews by Jorm et al. (1987) and Kay (1995)found prevalence rates of 0.7% and 1% respect-ively for all types of dementia between the ages of60 and 64 years. In the UK an estimated 17 000people between the ages of 40 and 65 years havedementia (ADS, 1993). A signi®cant proportionof these patients are managed at home despitehigh levels of disability and low contact rates withstatutory services (Newens et al., 1995). Carersare often highly stressed and perceive availableservices as poorly coordinated and lacking age-appropriateness (Baldwin, 1994; ADS, 1995).

People with dementia will share common needsbut important di�erences between younger andolder su�erers are likely to exist. There is growing

recognition that services for younger people withdementia need to be more comprehensive andrecommendations have included the commission-ing of specialized services (ADS, 1996). The aim ofthis article is to identify the current provision ofservices for younger people with dementia by trustsin England and to examine their attitudes towardsspecialization.

METHOD

The survey was conducted by postal questionnaireof hospital and community trusts in England aslisted in the Institute of Health Service Manage-ment Health Service Year Book (IHSM, 1994).Single speciality trusts providing services unrelatedto this patient group (such as orthopaedic services,etc) were excluded. This gave a sample of 304 trustsfrom a total of 359. Questionnaires were sent tothe chief executive of each trust and a secondmailing was undertaken in the absence of an initialreply.

�Correspondence to: Dr R. Barber, Castleside Unit, NewcastleGeneral Hospital, Westgate Road, Newcastle upon Tyne, NE46BE, UK. Tel: 0191 273 6666, Ext. 22986. Fax: 0191 219 5040.

CCC 0885±6230/97/090951±04$17.50 Received 5 September 1996# 1997 John Wiley & Sons, Ltd. Accepted 8 May 1997

INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY, VOL. 12: 951±954 (1997)

The questionnaire was designed to collectinformation about the characteristics of theservices provided for younger people with dementia(565 years). Questions relating to the assessmentof need and attitudes towards developing specialistservices were also included.

RESULTS

From the original 304 trusts, 254 (84%) replieswere returned. One hundred and seventy-fourof these trusts (68%) provided general adultpsychiatric services and 169 (67%) specialist oldage psychiatric services.

Services for younger patients with dementia:current provision

Table 1 summarizes the range of services pro-vided by trusts for younger patients with dementia.Trusts with existing psychiatric services wereresponsible for providing the majority of services,including day hospital facilities, respite and con-tinuing care and multidisciplinary communityservices. A more focused provision centring onmedical assessment and follow-up was availablefrom a small number of trusts without establishedpsychiatric services.

As would be expected, a number of di�erentspecialists contributed to the management of thesepatients. Old age psychiatry had a prominent roleand provided services in 150 trusts. The results forgeneric adult psychiatry, neurology and generalmedicine were 113, 62 and 58 respectively. Eighty-three trusts used at least two or more of thesespecialists to provide a service.

Specialisation: current provision

Twelve trusts had established a dedicated servicefor younger people with dementia. Thirty-ninetrusts had an identi®able consultant with specialresponsibility for this patient group: 31 old agepsychiatrists, ®ve general adult psychiatrists, twoneurologists and one neuropsychologist. A smallnumber of trusts employed specialist non-medicalsta�: community psychiatric nurse (nine), socialworker (®ve), psychologist (four), occupationaltherapist (2) and research sta� (two).

Attitude towards specializationand future development

The development of specialist services for young-er people with dementia was viewed as `necessary'by 101 trusts, including 29 trusts actively preparing

Table 1. Services for younger people with dementia

Services Number of trusts Number of trusts Proportion (%) of

providing service with existing psychiatric available services provided

(in rank order) services providing service by trusts with existing

N � 254 N � 174 psychiatric services

Initial diagnosis and assessment 189 164 87%

Links with social services 182 160 88%

Medical follow-up 180 161 89%

Links with primary care 172 150 87%

Inpatient assessment and/or management 169 153 91%

Links with voluntary organizations 168 153 91%

Community psychiatric nursing 163 161 99%

Occupational therapy 161 147 91%

Support and counselling 145 136 94%

Day hospital services 142 138 97%

Social and ®nancial advice 139 126 91%

Education and information for carers 136 120 88%

Respite admission 135 127 94%

Carers groups 124 119 96%

Continuing care facilities 123 118 96%

Family therapy 69 67 97%

Genetic counselling 37 28 76%

Miscellaneous/others 23 21 91%

INT. J. GERIAT. PSYCHIATRY, VOL. 12: 951±954 (1997) # 1997 John Wiley & Sons, Ltd.

952 R. BARBER

business plans. Nineteen trusts were uncertainabout the bene®ts of specialization and the needto change existing practices. Specialization wasviewed as unnecessary by the remaining trusts(N � 134), including all those trusts withoutexisting psychiatric services (N � 80).

Assessment of need

Fifty-two trusts (20%) had investigated thenumber and/or needs of younger people withdementia. Following this assessment, 10 trustshad established a specialist dedicated serviceand 33 viewed this development as `necessary',including 20 with active business plans to developspecialized services. Only nine of the 52 trustsconcluded specialization was not necessary.Reasons given included low levels of estimatedmorbidity and/or satisfaction with existingpractices. Trusts which had completed an assess-ment of need were more likely to view the develop-ment of specialists services as `necessary' (w2 �10:7, df � 1, p � 0:001 for trusts with existingpsychiatric services).

DISCUSSION

The high response rate of this survey suggeststhe results provide a useful indication of the rangeof services available for younger people withdementia. The survey did not evaluate the e�ect-iveness or quality of these services.Services were mainly provided by trusts with

existing psychiatric services, especially old agepsychiatry. This ®nding is consistent with theexperiences of patients and their carers and hasbeen associated with concerns about the availa-bility of age- and illness-appropriate facilities. Themajority of trusts with existing psychiatric servicesprovided a range of services. This ®nding couldindicate that the organization and coordination ofthese services may be of greater relevance than anoverall lack of provision.

In general, trusts expressed a positive attitudetowards specialization even though specialistsservices were uncommon (less than 5% of trusts).Importantly, the majority of trusts who hadinvestigated the needs of younger people withdementia viewed the development of a specialistservice as `necessary' and a sizeable proportion ofthese trusts have plans to introduce, or alreadyhave introduced, specialized services. The low

prevalence of early onset dementia and thetendency for people to be treated by a number ofdi�erent professionals, perhaps in di�erent trusts,is likely to leave the overall level of need hidden.

A systematic evaluation of services for thispatient group has not been completed and thereare no guidelines indicating appropriate levels ofservice provision (Williams, 1995). Nevertheless,de®cits in current practices have been identi®ed andchanges recommended (Furst and Sperlinger, 192;Hammond, 1993; Lloyd, 1993; Shakespeare andAnderson, 1993; Baldwin, 1994). A model of carecentred on increased specialization has been con-sistently favoured (Williams, 1995; ADS, 1996).Potential advantages of this approach includeimproved coordination, e�ectiveness and age-appropriateness of services. It may clarify referraland care pathways and thereby improve access andcontinuity of care. Specialization also provides aframework to develop diagnostic, treatment andresearch clinics as well as closer links betweenstatutory and voluntary services. Finally, a highlevel of expertise is required to manage the complexdiagnostic, psychosocial and genetic needs of thesepatients and their family, and specialization mayfacilitate sta� training and supervision.

Experience of specialization is limited. Potentialbene®ts need to be fully evaluated and appropriatepurchasing and strategic mechanisms developed.The composition and function of establishedspecialist services has varied and so far develop-ments have occurred on an ad hoc basis with nostandard model of patient care (Williams, 1995;HAS, 1997). Local factors will inevitably in¯uencethe con®guration of services and need to be con-sidered. Indeed, in this survey a small proportion oftrusts who had completed an assessment of needpreferred to continue with existing practices ratherthan develop specialists services.

Recently the National Health Service HealthAdvisory Service (HAS, 1997) have advocateda strategy to improve services. Their reportemphasized the need for a designated clinicalleader and a philosophy of comprehensive multi-disciplinary working. It recommended the develop-ment of appropriate care pathways, improved linksbetween di�erent services and argued for moree�ective commissioning and strategies based on anassessment of local needs. This survey supports thenotion that trusts and purchasers should undertaketo assess the needs of younger patients with dementiaand examine their current practices. Change mayfollow.

# 1997 John Wiley & Sons, Ltd. INT. J. GERIAT. PSYCHIATRY, VOL. 12: 951±954 (1997)

SERVICES FOR YOUNGER PEOPLE WITH DEMENTIA 953

ACKNOWLEDGEMENT

I would like to express my thanks to Mr C. Evers,Dr J. Byrne and all respondents.

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Kay, D. W. K. (1995) The epidemiology of age-relatedneurological disease and dementia. Rev. Clin.Gerontol. 5, 39±56.

Lloyd, M. P. (1993) Early Onset Dementia in the Maid-stone Area: Identifying Needs of Su�erers and Carers.A Report for the Maidstone Health Authority andMid Kent Area of Kent Social Services. MaidstoneHospital, Maidstone.

Newens, A. J., Forster, D. P. and Kay, D. W. K.(1995) Dependency and community care in presenileAlzheimer's disease. Brit. J. Psychiat. 166, 777±782.

Shakespeare, J. and Anderson, J. (1993) Huntington'sdiseaseÐfalling through the net. Health Trends 25,19±22.

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INT. J. GERIAT. PSYCHIATRY, VOL. 12: 951±954 (1997) # 1997 John Wiley & Sons, Ltd.

954 R. BARBER