Dementia as a Terminal Illness: Time to Consider Palliative Care Betty R. Ferrell, PhD, RN December 02, 2014 Who Knows, Who Cares? Dementia Knowledge Among Nurses, Care Workers, and Family Members of People Living With Dementia Robinson 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. Viewpoint The field of palliative care is most often associated with cancer, followed by an increased focus on serious chronic illnesses such as end-stage heart disease or chronic obstructive pulmonary disease. However, numerous national reports from such organizations as the Institute of Medicine have identified the aging population and such associated diseases as dementia as critical concerns for the healthcare system, families, and society. Palliative care for people with dementia is emerging as an important topic with most sources recognizing that people with dementia are an underserved population.[1-7] This study offers valuable information to support the expansion of palliative care in dementia care. The investigators also made the important observation that it is vital for staff and family to have shared understanding of the illness to work together to plan the care of the patient with dementia. The investigators also cited specific knowledge deficits, such as failure to see declining mobility as a sign of progressive disease. The article includes the items of the dementia knowledge instrument for palliative care, which is a very useful tool for readers. These items can be used in assessing educational needs. The most important message of this study is the investigators conclusion that the first step to improving palliative care in dementia is for both staff and family members to see dementia as a terminal illness. This will lead to recognition of the potential value of palliative care for this population and better support for patients and families. Abstract References 1.Mitchell SL, Teno JM, Kiely DK, et al. The clinical course of advanced dementia. N Engl J Med. 2009;361:1529-1538. Abstract 2.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://health.gov.au/internet/main/publishing.nsf/Content/33A5C4EAB62FF446CA257BF0001C9698/$File/ COMPAC%20Vol%201%20RTF%20accessible%20WEB.pdf Accessed November 20, 2014. 3.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 4.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 5.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. 6.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 7.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. Medscape Nurses © 2014 WebMD, LLC
Posted on: Tue, 02 Dec 2014 21:44:28 +0000