Literature Review and Needs and Feasibility Assessment of Services for People with Younger Onset Dementia
Duration: July 2013 – February 2014
The project included an international literature review and national consultation process to identify the needs and feasibility of services to support people with younger onset dementia. The majority of dementia support services are located in the aged care sector, which is not well placed to address the needs of people who are younger and who have different personal, family, social and vocational needs and aspirations. The CHSD approach included looking beyond the traditional dementia services, and examined disability services, community organisations and businesses that employ volunteer services, to explore the capacity of these organisations to contribute to improved quality of life for people with dementia.
What we did
The international literature review was the largest ever undertaken for younger onset dementia, and included over 300 journal articles, reports, presentations and websites. The needs and feasibility analysis included face to face consultations with over 200 people across most States and Territories. Importantly, this included a number of people with younger onset dementia and family carers whose insights highlighted the need for a significant re-framing of the way in which services are provided, as well as the nature and breadth of those supports and services. Consultations were also held with service providers, special interest and needs groups, peak body representatives, researchers and jurisdictional policy and program advisors. An online survey was also conducted to widen access to the consultation process. Findings suggested that service and policy development for people with younger onset dementia should be guided by the following: a focus on the individual; timely and accurate diagnosis; appropriate services; integrated care; continuity of care; service specific issues such as the need for respite care and peer support; and good policy and program design.
View the journal article
Sansoni J, Duncan C, Grootemaat P, Capell J, Samsa P and Westera A (2016) Younger Onset Dementia: A Review of the Literature to Inform Service Development. American Journal of Alzheimer's Disease and Other Dementias, 31 (8): 693-705.
Download the Final reports and executive summaries
Sansoni J, Duncan C, Grootemaat P, Samsa P, Capell J and Westera A (2014) Younger Onset Dementia: A Literature Review. Centre for Health Service Development, Australian Health Services Research Institute, University of Wollongong.
Westera A, Fildes D, Duncan C, Samsa P, Capell J, Grootemaat P and Sansoni J (2014) Final Report: Literature Review and Needs and Feasibility Assessment of Services for People with Younger Onset Dementia. Centre for Health Service Development, Australian Health Services Research Institute, University of Wollongong.