“Quality of Life” (QOL)–an Important Goal for All Who Care For Those With Memory Loss
When a person is suffering from any form of memory loss, it is very difficult to achieve the goal of care that offers quality of life, mainly because the the diminishing cognitive capabilities of the dementia patient. QOL is also difficult to measure because part of the disease process involves difficulty with communication. So how can we determine if a client with dementia has QOL?
There are a few QO: models for dementia patients. Below there are examples of two of the models:
1. M.P. Lawton’s (Alzheimer Disease Association Disorders, 1994) definition of QOL: encompasses four (4) domains:
A. Psychological well being
B. Behavioral competence
C. The objective environment
D. Perceived QOL
2. L. Volicer (Clin. In Geriatric Medicine) developed another model for patients with severe dementia:
A. Provision of meaningful activities
B. Treatment of medical conditions
C. Management of behavioral symptoms.
Even with these models there are no set guidelines for ensuring QOL for those with dementia. However, Sandy Burgener (1998) has developed QOL guidelines and interventions that are very helpful in caring for those individuals with dementia. They focus on patient experience and are as follows:
I. Pain and Comfort Status
Intervention: A.) Observe nonverbal pain expressions; B.) Inform those caring for patient about his/her expression of pain; C.) Integrate pain assessment into care giving routine.
II. Individual Touch Experiences
Intervention: A.) Observe verbal and nonverbal responses to touch; B.) Employ touch based on patient’s response.
III. Structural Care Routine:
Intervention: A.) Follow familiar pattern of care; B.) Build pattern of care around “routinized” behaviors.
IV. Low-Stimulus Environment
Intervention: A.) Reduce extraneous noise; B.) Reduce crowding or unfamiliar persons or objects; C.) Avoid misleading or distracting stimuli.
V. Health
Intervention: A.) provide palliative (comfort care and pain relief as apposed to restorative treatments) care interventions.
VI. Time Use and Social Behavior
Interventions: A.) Help family and friends who visit understand the nature of the disease and the person’s need for contact; B.) Encourage visiting by close family members and friends.
From a hospice perspective, it is important to note the reference made to addressing the pain and comfort status of the dementia patient. It is also important to note that two of the dementia experts cited, Volicer and Burgener, address the need to take care of the patient’s medical needs to maintain QOL while avoiding unnecessary aggressive or restorative treatments.
Thank you to Linda Debner of Hospice of the Twin Cities in Plymouth, Minnesota for permission to use information from her newsletter of March, 2009. The website for Hospice of the Twin Cities is:
http://www.hospiceofthetwincities.com
References:
Burgener SC: Quality of Life in Late-Stage Dementia in Hospice Care for Patients with Advanced Progressive Dementia. Edited by Volicer, L, Hurley A. New York: Springer, 1998, pp 88-113.
Lawton MP: Quality of life in Alzheimer’s Disease. Alzheimer Dis Assoc Disorders. 1194;8 Suppl 3:138-50.
Volicer, L: Management of severe Alzheimer’s disease and end-of-life issues. Clin in Geriatric Medicine. 2001; 17 (2): 377-391.
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