Improving Care for the End of Life, Online Edition The Palliative Care Policy Center

Sourcebook : Improving Care for the End of Life : 13.4 Supporting Family Caregivers

Although a variety of detailed schemes to characterize the stages of progressive dementias have been outlined in the literature, clinicians often categorize the course of a dementing disorder in terms of early, middle, and late states. A person in the early stage of dementia experiences personality and emotional changes, a mild memory deficit, and decreased ability to perform complex activities. During the middle stage, the dementia victim experiences increasing difficulty carrying out activities of daily living, moderately severe short- and long-term memory deficits, impairments in judgment, and behavioral disturbances. Late-stage dementia includes loss of awareness of surroundings, severe communication deficits, immobility, and total dependence on others. Throughout the disease process, family caregivers are responsible for the supervisory and direct care needs of the impaired person and interactions with the broader social and health care networks necessary to keep the impaired person in the community.

Family caregivers differ widely in the level and type of care-related strain they experience, and only a limited relationship exists between the severity of the patient's disease and the caregiver's subjective perceptions of burden or strain. Many factors seem to influence how family caregivers respond to the caregiving role.

As organizations have come to understand the negative effects of caregiving on family members, some have developed interventions that target caregivers. Direct comparisons of interventions are difficult due to differences in treatment philosophies, populations served, frequency and duration of interventions, content of interventions, peer versus professional intervention agents, home or community-based treatment, outcome measures, and level of analysis of the research studies from these interventions. Nevertheless, the research to date has yielded a rich knowledge base from which to develop future interventions (Bourgeois et al., 1996). Interventions typically include a wide range of services:

While the approaches to caregiver interventions are quite diverse, all tend to be similar to those available to other groups requiring formal and informal support services to cope with psychological and/or physical disabilities.

13.4.1 Individual Counseling
13.4.2 Support Groups
13.4.3 Respite Care
13.4.4 Skills Training
13.4.5 Comprehensive, Multicomponent Interventions
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This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ ] and Oxford University Press. All rights reserved.

For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ ].

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