Young Onset Dementia
Written by Sarah Race
Young Onset Dementia
Dementia has long been a disorder primarily associated with old age, affecting
over 700,000 people above the age of 65; however it is by no means exclusive to
this population. ‘Young Onset Dementia’ is a term that includes anyone
diagnosed with dementia under the age of 65, and Harvey et al estimated there
to be 18,319 people fitting this criteria within the UK (Harvey, Skelton-Robinson
& Rosser, 2003). The terms Young Onset Dementia (YOD) and Younger People with
Dementia (YPWD) are often used to refer to the condition and the individuals affected
by it.
Harvey (1998) observes that YPWD are more likely to experience atypical dementias
than their elder peers, such as Multi-Infarct, or Vascular Dementia; Frontotemporal
Dementia (FTD); Primary Progressive Aphasia; and dementias resulting from infection,
metabolic disorder, neurological conditions (e.g. Parkinson’s Disease; HIV
/ AIDS), or chronic exposure to toxic substances, most typically alcohol (Williams,
Cameron, Dearden, Harris, Pritlove and Richards, 1999). In light of such reports,
it is important to consider that memory problems may not be the initial presenting
problem in YPWD; other symptoms such as behaviour and personality changes, and
language disturbance may occur first (Ferran, Wilson & Doran, 1996). As a
consequence of these, and other similar findings, the National Service Framework
for Older People (NSFOP) (Department of Health, 2001) has stipulated that arrangements
within the NHS should be made specifically for the care of YPWD; a move supported
by the Alzheimer’s Society (2006; 2005; 1996). The Care Services Improvement
Partnership (2005) has made further specific recommendations for the development
of services for younger YPWD in its guide to older people’s mental health
services, ‘Everybody’s Business’.
Current Service Provision
Services for YPWD are inconsistent throughout the UK and often do not meet the
complex needs of young people or their families. Traditionally, the allocation
of resources and responsibility for YPWD has been haphazard, and has led to
a situation whereby many ‘fall through the net’ of health and social
care services. YPWD have been largely the responsibility of older age psychiatry
services because such services have expertise in the assessment and management
of PWD. However, services for older people are often inadequate, and rarely
has the responsibility for YPWD had the protection of contractual agreements
with service commissioners (Royal College of Psychiatrists and Alzheimer’s
Society, 2006). More recent policy developments have seen the introduction of
recommendations for services to meet the needs of YPWD (e.g. Royal College of
Psychiatrists and Alzheimer’s Society, 2006; NSFOP, 2001). Despite clear
guidance from the Royal College for Psychiatrists, the Alzheimer’s Society
and the Department of Health, uptake of NSF and Royal College recommendations
have been variable. In a survey by the Alzheimer’s Society (2006) 145
specialist projects / teams providing services for YPWD were identified across
the UK. Some regions have seen significant developments in the provision of
support to YPWD, but others have seen no improvement. Furthermore, where projects
are available for younger people, often they only provide one type of service
and do not provide for all of a person’s needs. As a consequence, access
to appropriate services and quality care for YPWD is random, largely depending
on where individuals live.
Role of Clinical Psychology within YOD Specialist Services
PSIGE recommends that each YOD service employs 0.5 wte Principal Clinical Psychologist
graded at a level that “enables the recruitment and retention of someone
with the appropriate knowledge and skills that reflect continuing professional
development in the specialist area” (Boddington, 2005; p5).
The role of a Clinical Psychologist within services for younger people with
dementia is discussed further in a recent PSIGE briefing paper (Guss, Hawkins,
Lough & Allen, 2006). As with most Clinical Psychology posts, the role within
a YOD service is varied and extensive and usually involves the following psychological
interventions:
• Neuropsychological Assessment
• Therapeutic Services
o with YPWD throughout the whole disease process; from assessment to diagnosis
to end stages
o with families and carers
o with staff from health, social and voluntary services
• Service development
The expertise and skills that Clinical Psychologists can bring to a multidisciplinary
team are central in meeting the needs of YPWD and their families and carers,
and should be utilised in the development of services. Central to achieving
such services is listening to the views of YPWD and their families. Without
such insights, service planners and providers will find it difficult to agree
on what services are necessary for YPWD and for people with dementia in general.
Potential Content for this Topic
Given the haphazard nature of service provision and the growing research interest
in YOD, I hope that this page can be somewhere for PSIGE members to share any
new research, developments in policy / legislation and our own service development
projects. If you have anything you wish to add to the site, please do not hesitate
in contacting me at this address or by using the form below.
Dr Sarah Race
Specialist Clinical Psychologist
Young Onset Dementia Team
5 Eastbourne Road
Middlesbrough
TS5 6QS
Tel: 01642 820082
Fax: 01642 826631
References and Additional Sources of Information
Alzheimer’s Society (2006). Ready or Not? A Survey of Services Available in the UK for Young People with Dementia. London: Alzheimer’s Society.
Alzheimer’s Society (2005). Younger People with Dementia: An Approach for the future.
 Alzheimers YPWD website
Alzheimer’s Society (1996). Younger People with Dementia: A Review &
Strategy. London: Alzheimer’s Society.
Boddington, S. (2005). Briefing Paper 5. Commissioning Clinical Psychology Services for Older People, Their Families and Carers. Leicester: British Psychological Society. Available Online at:
 Briefing paper 5 :: Commissioning Clinical Psychology Services - services for older people, their families and other carers [approx 155K]
Care Services Improvement Partnership (2005). Everybody’s Business.
Integrated Mental Health Services for Older Adults: A Service Development Guide. London: Department of Health. Available Online at:
CSIP website
Department of Health. (2001). National Service Framework for Older People. London: Department of Health. Available Online at:
DH website
Ferran, J., Wilson, K., & Doran, M. (1996). The early onset dementias: A study of clinical characteristics and service use. International Journal of Geriatric Psychiatry, 11, 863-869.
Guss, R., Hawkins, J., Lough, S. & Allen, J. (2006). Briefing Paper 23. Services for Younger people with dementia and the Role of Clinical Psychology. Leicester: The British Psychological Society.
Harvey, R. J. (1998). Young Onset Dementia: Epidemiology, clinical symptoms and family burden, support and outcome. London: Dementia Research Group. Download available Online at:
Document download
Harvey, R.J., Skelton-Robinson, M. & Rosser, M. N. (2003). The prevalence and causes of dementia in people under the age of 65 years. Journal of Neurology, Neurosurgery and Psychiatry, 74, 1206-1209.
Royal College of Psychiatrists & Alzheimer’s Society (2006). Services for Younger People with Alzheimer’s Disease and Other Dementias. London: Royal College of Psychiatrists & Alzheimer’s Society. Download Available Online at:
Download from RCP website
Williams, T., Cameron, I., & Dearden, T. (2001). From pillar to post - a study of younger people with dementia. Psychiatric Bulletin, 25(10), 384-387.
Additional Sources of Information
Generic
Harvey, R.J., Skelton-Robinson, M. & Rosser, M. N. (2003). The prevalence and causes of dementia in people under the age of 65 years. Journal of Neurology, Neurosurgery and Psychiatry, 74, 1206-1209.
Hodges, J. (2001). Early Onset Dementia: A Multi-Disciplinary Approach. Oxford: Oxford University Press.
Assessment & Diagnosis of YOD
Beattie, A., Daker-White, G., Gilliard, J., & Means, R. (2004). 'How can they tell?' A qualitative study of the views of younger people about their dementia and dementia care services. Health Social Care in the Community, 12(4), 359-364.
Cordery, R., Harvey, R., Frost, C., & Rossor, M. (2002). National survey to assess current practices in the diagnosis and management of young people with dementia. International Journal of Geriatric Psychiatry, 17(2), 124-127.
Experiences of YOD
Harris, P. B. (2002). The perspective of younger people with dementia: Still an overlooked population. Social Work in Mental Health, 2(4), 17-36.
Harris, P.B. and Keady, J. (2004). Living with early onset dementia: Exploring the experience and developing evidence-based guidelines for practice.
Alzheimer’s Care Quarterly, 5(2), 111-122.
Services for YPWD
Bentham, P. & La Fonteine, J. (2005). Services for younger people with dementia. Psychiatry, 4, 100-103.
Ferran, J., Wilson, K., & Doran, M. (1996). The early onset dementias: A study of clinical characteristics and service use.
International Journal of Geriatric Psychiatry, 11, 863-869.
Quinn, C. (1996). The Care Must Be There: Improving Services for People with Young Onset Dementia and their Families. London: Dementia Relief Trust.
Williams, T., Dearden, T. & Cameron, I. (2001). From pillar to post - a study of younger people with dementia. Psychiatric Bulletin, 25(10), 384-387.
Resources for our Clients & Carers
Downloads
The above text can be downloaded as a word document using the link below
 PSIGE website Young Onset Dementia introductory article (50KB)
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