Caregiving and dementia/Topics/Palliative

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This NPA focuses on end of life and palliative care of people with dementia.


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Dementia is a terminal illness however the terminal nature of the illness has not been communicated well to, or by, families, health professionals or organisations responsible for the provision of appropriate dementia care services. Broader issues of understanding dementia in general terms, the financial and social costs of caring for people living with dementia and the provision of sufficient services have been the priority needs. Palliative care has largely been associated with services for people dying from cancer and in response to limited resources to those in final days or weeks of life. For people with dementia the final stages of dying can be difficult to identify and is a protracted journey measured in weeks and months.

A palliative approach to dementia care is in its infancy and implemented by only a few isolated dementia care services. There are pockets of excellence within some state and federal government organisations, in the private/not for profit area and a strong informal network of ‘champions,’ however there is little transfer of resources between and across areas and similar products and processes are being replicated across jurisdictions.

People living at home with dementia rarely seek or use specialist palliative care services such as Hospice. People with dementia who are at end stage are most likely to be cared for in Residential Aged Care Facilities or in their own home, cared for by family with assistance from home care providers. Tertiary qualified health professionals lack specific and specialist knowledge and skills to care for people with dementia at the end of the life. The quality of care people with dementia at the end of life is generally poor with pockets of care delivery that are excellent.

During 2010, educational resources were developed as part of the "Communities of Practice in Dementia Project", funded from the Australian Government department of Health and Ageing (Local Palliative Care Grants, Round 5). These resources are freely available on the Caresearch website.


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Toye, C., Robinson, A., Jiwa, M., Andrews, S., McInerney, F., Horner, B., Holloway, K. & Stratton, B. (2012). Developing and testing a strategy to enhance a palliative approach and care continuity for people who have dementia: Study overview and protocol. BMC Palliative Care, 11:4 doi: 10.1186/1472-684X-11-4. Retrieved from