Literature Review
Between a rock and a hard place: Exploring the service needs of younger people with dementia
Denise Chaston
Universal College of Learning, Palmerston North, New Zealand; Department of Health and Human Services, Ulverstone TAS
PP: 130 - 139
Abstract
The commonly held perception that dementia is a condition of older age belies the fact that people under 65 years, and younger, present with dementia. Services for people with dementia have traditionally focused on the needs of older adults; people who are retired and more dependent. Younger people with this condition however, face different changes related to their young families', current employment and at times gaining a diagnosis.
Traditional healthcare services do not adequately cater for the needs of this population and evidence suggests a need for specialised service provision for younger people with dementia (YPWD). While specific services have been initiated in some counties, in New Zealand there is little evidence of recognition of this problem. To consider the effectiveness of available services a literature review was undertaken to determine the need for age appropriate services for YPWD.
Two main themes were identified, these relate to age appropriate service provision, a single entry point into services, and a defined care pathway. While there is some debate about the adequacy of existing services in meeting the needs of YPWD, the consensus suggests the importance and need for a focused specialised service to address the unique needs of this group. Further research is required to clarify the form and structure of a specialised service that supports best practice and meets the needs of YPWD in New Zealand.
Keywords
early onset dementia; younger people with dementia; working age dementia; young onset dementia; service development; age-appropriate services and dedicated services; nursing
References
Alzheimer's Australia. (2007). The needs of younger people with dementia in Australia. Accessed January 12, 2009, from http://www.alzheimers.org.au/upload/youngeronset.pdf
Alzheimer's Society. (2001). Younger people with dementia: A guide to service development and provision. London: Alzheimer's Society.
Alzheimer's Society. (2005). Younger people with dementia: A guide to service development and provision. London: Alzheimer's Society.
Armstrong, M. (2003). The needs of people with young-onset dementia and their carers. Professional Nurse, 18(12), 681-684.
Beattie, A., Daker-White, S., Gilliard, J., & Means, R. (2002). Younger people in dementia care: A review of service needs, service provision and models of good practice. Aging & Mental Health, 6(3), 205-212.
Beattie, A., Daker-White, S., 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 and Social Care in the Community, 12(4), 356-368.
Bentham, P., & La Fontaine, J. (2005). Services for younger people with dementia. Psychiatry, 7(2), 84-87.
Cantley, C., Woodhouse, J., & Smith, J. (2005). Listen to us: Involving people with dementia in service planning and developing services. Dementia North, Northumbria University, UK. Accessed September 12, 2009, from http://www.mentalhealthpromotion.net/resources/listen-to-us.pdf
Chaston, D., Pollard, N., & Jubb, D. (2004). Young onset dementia: A case for real empowerment. Journal of Dementia Care, 12(6), 24-26.
Coombes, E., Colligan, J., & Keenan, H. (2004). What users and carers think of a service for younger people. Journal of Dementia Care, 12(1), 36-37.
Daker-White, G., Beattie, A., Means, R., & Gilliard, J. (2002). Serving the needs of marginalized groups in dementia care: Younger people and minority ethnic groups: Summary of key findings and conclusions. Bristol, University of West England: Dementia Voice.
Deversen, T. (2005). New Zealand Oxford dictionary. Auckland: Oxford University Press.
Filley, C. M., Rollins, Y., Anderson, C. Y., Arciniegas, D. B., Howard, K. L., Murrell, J. R., et al. (2007). The genetics of very early onset Alzheimer's disease. Cognitive and Behavioural Neurology, 20, 149-156.
Fitzgerald and Associates. (2007). Dementia and delirium service provision: An issues paper. Accessed August 12, 2009, from www.waitematadhb.govt.nz/wdhb/links
Haase, T. (2005). Early onset dementia: The needs of younger people with dementia in Ireland. Dun Laoghaire: The Alzheimer Society of Ireland.
Harvey, J. (1998). Young onset dementia: Epidemiology, clinical symptoms, family burden, support and outcome. London: NHS Executive.
Harvey, R., Skelton-Robinson, M., & Rossor, M. (2003). The prevalence and causes of dementia in people under the age of 65 years. Journal of Neurology, Neurosurgery and Psychiatry, 74, 1206-1209.
Innes, A., Balckstock, K., Mason, A., Smith, A., & Cox, S. (2005). Dementia provisions in rural Scotland: Services users and carers expectations. Health and Social Care in the Community, 13(4), 354-365.
Jubb, D., Pollard, N., & Chaston, D. (2003). Developing services for younger people with dementia. Nursing Times, 99(22), 34-35.
Miesen, B., & Jones, G. (2004). The Alzheimer's café concept: A response to the trauma, drama and tragedy of dementia. In G. Jones & B. Miesen (Eds.), Caregiving in dementia - Research and application (Vol. 3, pp. 307-333). London: Brunner Routledge.
National Audit Office. (2007). Improving services and support for people with dementia. London: Stationary Office.
National Institute of Health and Clinical Excellence and The Social Care Institute for Excellence. (2007). Guidelines on supporting people with dementia and their carers. London: British Psychological Society and the Royal College of Psychiatrists.
Parahoo, K., Campbell, A., & Scoltock, C. (2007). An evaluation of a domiciliary respite service for younger people with dementia. Journal of Evaluation in Clinical Practice, 8(4), 377-385.
Polit, D. F., & Beck, C. T. (2008). Generating and assessing evidence for nursing practice. Nursing research (8th ed.). Philadelphia: Lippincott Williams and Wilkins.
Reed, J., Cantley, C., Clarke, C. L., & Stanley, D. (2002). Services for younger people with dementia. International Journal of Social Research and Practice, 1(1), 95-112.
Renholm, M., Leino-Kilpi, H., & Suominen, T. (2002). Critical pathways: A systematic review. Journal of Nursing Administration, 32(4), 196-202.
Royal College of Psychiatrists. (2006). Services for younger people with Alzheimer's disease and other Types of dementia. Interim Draft Policy Paper. London: Royal College of Psychiatrists.
Saad, K. (2004). Integrated care pathways for young-onset dementia. Journal of Dementia Care, 12(2), 29-31.
Werner, P., Stein-Shvachman, I., & Korczyn, A. D. (2009). Early onset dementia: Clinical and social aspects. International Psychogeriatrics, 21, 631-636.
Williams, T., Cameron, I., & Dearden, T. (2001). From pillar to post - A study of younger people with dementia. Psychiatric Bulletin, 25(10), 384-387.

eContent Home




