Dementia is a Terminal Illness 

WHO KNOWS, WHO CARES? DEMENTIA KNOWLEDGE AMONG NURSES, CARE WORKERS, AND FAMILY MEMBERS OF PEOPLE LIVING WITH DEMENTIARobinson A, Eccleston C, Annear M, et al

J Palliat Care. 2014;30:158-65
Knowledge as a Prerequisite for Care
The number of people with dementia is increasing rapidly worldwide. With this population growth, the use of nursing homes (known as residential aged care facilities) in Australia for individuals with dementia is growing. As a terminal condition, dementia is best managed by instituting a palliative approach to care. A good knowledge of dementia, including its progression and management, among staff and families of people living with dementia is essential for clear decision making and the provision of appropriate care. Yet there is limited information about relative levels of dementia knowledge.
This article reports the results of a study that assessed dementia knowledge among cohorts of residential aged care facility staff and family members. Family members were selected from residents with moderate to severe dementia in these facilities, and they were sent letters to invite their participation. The Dementia Knowledge Assessment Tool, consisting of 21 items, was completed by 279 staff members (59% of the staff, including registered nurses and other care workers) and 164 family members of residents with dementia.
Dementia knowledge deficits were evident in both family members and staff members across a range of areas. Both groups had generally accurate knowledge of several aspects of dementia, such as the pathophysiology of the disease and behavioral/psychological systems. Both groups scored lower on items related to dementia as a terminal illness. Approximately 50% of the staff and 60% of family caregivers failed to recognize dementia as a terminal illness. The investigators pointed to the significance of this knowledge gap in that failure to recognize dementia as a terminal illness results in such unnecessary, futile, and burdensome treatments as intravenous fluids and nutrition, tube feedings, and hospitalizations in the last months of life.
Robinson and colleagues concluded that it is critical to identify and address dementia knowledge deficits to support evidence-based dementia care.http://www.medscape.com/medline/abstract/19828530

References
Mitchell SL, Teno JM, Kiely DK, et al. The clinical course of advanced dementia. N Engl J Med. 2009;361:1529-1538. Abstract
Department of Health and Ageing (Australia). Guidelines for a Palliative Approach for Aged Care in the Community Setting: Best Practice Guidelines for the Australian Context. Canberra, Australia: Department of Health and Ageing; 2011. https://www.health.gov.au/internet/main/publishing.nsf/Content/33A5C4EAB62FF446CA257BF0001C9698/$File/

COMPAC%20Vol%201%20RTF%20accessible%20WEB.pdf Accessed November 20, 2014.
Di Giulio P, Toscani F, Villani D, Brunelli C, Gentile S, Spadin P. Dying with advanced dementia in long-term care geriatric institutions: a retrospective study. J Palliat Med. 2008;11:1023-1028. Abstract
Finucane AM, Stevenson B, Moyes R, Oxenham D, Murray SA. Improving end-of-life care in nursing homes: implementation and evaluation of an intervention to sustain quality of care. Palliat Med. 2013;27:772-778. Abstract
Hughes J, Bagley H, Reilly S, Burns A, Challis D. Care staff working with people with dementia: training, knowledge and confidence. Dementia. 2008;7:227-238.

Jones C, Moyle W, Stockwell-Smith G. Caring for older people with dementia: an exploratory study of staff knowledge and perception of training in three Australian dementia care facilities. Australas J Ageing. 2013;32:52-55. Abstract

Toye C, Lester L, Popescu A, McInerney F, Andrews S, Robinson AL. Dementia Knowledge Assessment Tool Version Two: development of a tool to inform preparation for care planning and delivery in families and care staff. Dementia (London). 2014;13:248-256.

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About Jennifer Carter

I am currently undertaking a PhD on End of Life studies. I have created this blog to discuss with you matters related to end of life.
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