Dementia is not a single specific disease but rather a range of diseases characterised by impairment of brain functions resulting in restrictions in language, memory, perception, personality, cognitive skills and activities of daily living. The most common type of dementia is Alzheimer’s disease. There is currently no cure for dementia and it is the greatest single contributor to burden of disease. Because dementia is a disabling health condition a large proportion of people with advanced dementia require full-time care and live in a residential aged care facility. An alternate to residential aged care are the Extended Aged Care at Home Dementia Packages (EACH-D).[1]
Issues common to people with dementia who require palliative care
Dementia is a terminal disease and a palliative approach should be considered from diagnosis. Issues concerning palliative care for people with dementia include:
- Decision making, communicating and advance care planning to ensure that the wishes of the person are identified and that appropriate ways of interacting are maintained.
- Pain assessment for people unable to verbalise pain. There are a number of tools that have been identified for this population.
- Treatment decisions as the disease progresses such as tube feeding or antibiotic use.
- Recognising issues and concerns of carers and family.
Many people with dementia have existing co-morbidities. They may not die from the dementia, but (for example) from heart disease or a stroke.
Dementia is used to describe symptoms of a large group of illnesses that contribute to a decline in intellectual functioning. Alzheimer’s disease is the most common form of dementia. However, symptoms can be similar to other conditions. Diagnosis of the disease and of subsequent symptoms can be important as some conditions such as delirium and depression could be treatable.
Several recent reviews have suggested that a palliative approach from diagnosis could be beneficial because it addresses people's physical and emotional needs as well as the needs of their families and carers. [3, 4] However, there are issues around how such an approach would be delivered and practical considerations around identification of specific palliative care needs.
Policies and resources
- Guidelines for a Palliative Approach in Residential Aged Care (APRAC) Commonwealth of Australia, 2004
Includes section on symptom assessment and management and a section on advanced dementia
- Guidelines for a palliative approach in community aged care. (COMPAC)
Project developing community guidelines and includes information relating to dementia.
- Healthcare professional resources
Alzheimers Australia
- Communication Tips
Alzheimer’s Australia website
- Pain in Residential Aged Care Facilities - Management Strategies Australian Pain Society 2005
Looks at pain, its identification and its management among residents of residential aged care facilities.
- The National Framework for Action on Dementia 2006 – 2010.
The framework for a better quality of life for people with dementia, their carers and families. It is an agreement between the Commonwealth Government and the states.
- National Institute for Health and Clinical Excellence Dementia Guideline
Evidence based guidelines for supporting people with dementia and their carers in health and social care. Has a specific section on palliative and end-of-life care. There is a companion document for lay carers.
- Decision-Making frameworks in advanced dementia
Decision-making framework of support for four major symptoms - pain, constipation, weight loss and agitation/confusion. Includes guidelines for nurses to enable them to assist people in residential aged care facilities.
- Palliative care and dementia Alzheimer’s Australia Discussion Paper Number 7
This paper sets out why palliative care can be important as death approaches.
- Palliative Care and Dementia
A discussion on palliative care, particularly as it relates to the final stages of people with dementia. Commissioned by Alzheimer's Australia, written by Professor Jenny Abbey
- Decision making in Advance Alzheimer’s Australia Discussion paper Number 8
This paper was commissioned by Alzheimer’s Australia to promote an informed discussion about the complex and confusing area of advance directives.
- Dementia Resource Guide
This resources aims to improve the care and quality of life for people with dementia by providing links to resources on 17 topic areas such as assessment and diagnosis, forward planning, medical treatment and support services
- National Dementia helpline Freecall: 1800 100 500, a 24 hour telephone information and support service available across Australia.
Websites
Related Care Search pages
Pain
Advance Care Planning
References
- Australian Institute of Health and Welfare 2007 Older Australia at a glance 4th Edition.
- Zanni GR, Wick JY. Differentiating dementias in long-term care patients. Consult Pharm. 2007 Jan;22(1):14-6, 18, 21-8. Review.
- Birch D, Draper J. A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia. J Clin Nurs. 2008 May;17(9):1144-63
- Sampson E, Ritchie C, Lai, Ret al. A systematic review of the scientific evidence for the efficacy of a palliative approach in advanced dementia. International Psychogeriatrics 2005. 17(1): 31-40.
- 5. Roger K 2006 A literature review of palliative care, end of life and dementia Palliative and Supportive Care 4 295-303
This page was created on 16 May 2008 and is due for review in May 2010
Last updated 4 August 2009