PSIGE website Young Onset Dementia introductory article (50KB)
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 meansexclusive to this population. ‘Young Onset Dementia’ is a term that includesanyone diagnosed with dementia under the age of 65, and Harvey et alestimated 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 thecondition and the individuals affected by it. Harvey (1998) observes that YPWD are more likely to experience atypicaldementias than their elder peers, such as Multi-Infarct, or Vascular Dementia;Frontotemporal Dementia (FTD); Primary Progressive Aphasia; anddementias resulting from infection, metabolic disorder, neurological conditions(e.g. Parkinson’s Disease; HIV / AIDS), or chronic exposure to toxicsubstances, most typically alcohol (Williams, Cameron, Dearden, Harris,Pritlove and Richards, 1999). In light of such reports, it is important toconsider that memory problems may not be the initial presenting problem inYPWD; other symptoms such as behaviour and personality changes andlanguage disturbance may occur first (Ferran, Wilson & Doran, 1996). As aconsequence of these, and other similar findings, the National ServiceFramework for Older People (NSFOP) (Department of Health, 2001) hasstipulated that arrangements within the NHS should be made specifically forthe care of YPWD; a move supported by the Alzheimer’s Society (2006; 2005;1996). The Care Services Improvement Partnership (2005) has made furtherspecific recommendations for the development of services for younger YPWDin 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 notmeet the complex needs of young people or their families. Traditionally, theallocation of resources and responsibility for YPWD has been haphazard, andhas led to a situation whereby many ‘fall through the net’ of health and socialcare services. YPWD have been largely the responsibility of older agepsychiatry services because such services have expertise in the assessment
and management of PWD. However, services for older adults are ofteninadequate, and rarely has the responsibility for YPWD had the protection ofcontractual agreements with service commissioners (Royal College ofPsychiatrists and Alzheimer’s Society, 2006). More recent policydevelopments have seen the introduction of recommendations for services tomeet the needs of YPWD (e.g. Royal College of Psychiatrists and Alzheimer’sSociety, 2006; NSFOP, 2001). Despite clear guidance from the RoyalCollege for Psychiatrists, the Alzheimer’s Society and the Department ofHealth, uptake of NSF and Royal College recommendations have beenvariable. In a survey by the Alzheimer’s Society (2006) 145 specialist projects/ teams providing services for YPWD were identified across the UK. Someregions have seen significant developments in the provision of support toYPWD, but others have seen no improvement. Furthermore, where projectsare available for younger people, often they only provide one type of serviceand do not provide for all of a person’s needs. As a consequence, access toappropriate services and quality care for YPWD is random, largely dependingon where individuals live.Role of Clinical Psychology within YOD Specialist Services PSIGE recommends that each YOD service employs 0.5 wte PrincipalClinical Psychologist graded at a level that “enables the recruitment andretention of someone with the appropriate knowledge and skills that reflectcontinuing professional development in the specialist area” (Boddington,2005; p5). The role of a Clinical Psychologist within services for younger people withdementia is discussed further in a recent PSIGE briefing paper (Guss,Hawkins, Lough & Allen, 2006). As with most Clinical Psychology posts, therole with a YOD service is varied and extensive and usually involves thefollowing 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 amultidisciplinary team are central in meeting the needs of YPWD and theirfamilies and carers, and should be utilised in the development of services.Central to achieving such services is listening to the views of YPWD and theirfamilies. Without such insights, service planners and providers will find itdifficult to agree on what services are necessary for YPWD and for peoplewith dementia in general.Potential Content for this Page Given the haphazard nature of service provision and the growingresearch interest in YOD, I hope that this page can be somewhere for PSIGEmembers to share any new research, developments in policy / legislation andour own service development projects. If you have anything you wish to addto the site, please do not hesitate in contacting me at this or by using the formbelow.Dr Sarah RaceSpecialist Clinical PsychologistYoung Onset Dementia Team5 Eastbourne RoadMiddlesbroughTS5 6QSTel: 01642 820082Fax: 01642 email@example.comReferencesAlzheimer’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. www.alzheimer’s.org.uk/ypwdAlzheimer’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: http://www.psige.org/psige-pdfs/PSIGE-BP5%20Final%20Version.pdfCare 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: http://www.olderpeoplesmentalhealth.csip.org.uk/everybodys-business.htmlDepartment of Health. (2001). National Service Framework for Older People. London: Department of Health. Available Online at: http://www.dh.gov.uk/ en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/ DH_4003066Ferran, 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. Available Online at: http://home.kosha.net/~h1415c/report.pdfHarvey, 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. Available Online at: http://www.rcpsych.ac.uk/pdf/servicesforyoung.pdfWilliams, 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 InformationGenericHarvey, 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 YODBeattie, 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 YODHarris, 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 YPWDBentham, 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