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Behavioral and Social Aspects of Alzheimer’s Disease

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By Report by the AD Educ and Referral Ctr • • March 1, 1999

"Caregiving for a person with AD is intense, personal, and unrelenting," said Lisa Gwyther. Ms. Gwyther, assistant clinical professor in the Department of Psychiatry and Behavioral Sciences at Duke University in Durham, North Carolina, presented journalists with a sense of the current daily realities of life for people with AD and their families. "It is an extraordinary undertaking, often more demanding and overwhelming than caring for patients with almost any other chronic condition or disability."

Recent surveys and research, Ms. Gwyther said, have shown that caregiving activities for AD patients exceed the boundaries of usual family care, often including such difficult tasks as helping with bathing, dressing, or diapering a previously competent but perhaps stubborn and resistant parent or spouse. The National Survey on Family Caregiving in the United States, conducted for the National Alliance for Caregiving, indicates that at least one person in every four households cares for someone who is sick. In an estimated 5 million households (more than 20 percent of those surveyed), the illness is a dementia-related condition. Through heart-felt, real-life examples, Ms. Gwyther stressed to the attentive group, "clinicians need to listen to families."

The demands of caregiving for AD and the toll on caregivers’ health are becoming more evident with increased research into the effects on caregivers. Although the association between the perceived burdens of caregivers and their actual health status need to be clarified further, studies do indicate that the emotional and physical strain of caregiving is greater for those caring for dementia patients.

Ms. Gwyther described the NIA-supported Resources for Enhancing Alzheimer’s Caregiver Health (REACH) research project to evaluate strategies for coping with the conflict created by caregiving and the risks to caregivers’ physical and mental health. Families continue to be recruited for these studies.

With continued research on the possible health effects of caregiving on the caregivers themselves, two correlations are beginning to emerge: (1) problem behaviors of AD patients are consistently linked to psychiatric and physical illness of caregivers, and (2) the severity of the patient’s cognitive impairment is associated with physical illness of the caregiver. These insights in turn are spurring research into whether caregivers of people with dementia use health care and social services more or less than other caregivers.

"Research continues to show that families, including spouses, who usually have the primary caregiver role, can benefit greatly from additional sources of support," said Ms. Gwyther, "especially those that specialize in the disease." Newsletters and books, support groups and organizations, and telephone-, tape-, and computer-based information all can help families cope with conflict and isolation and find practical solutions to unanticipated problems. Education and outreach can provide validation, encouragement, reassurance, and a sense of control to families and give them sorely needed assistance in making difficult choices.

The "overwhelming and exhaustive" care affects virtually every aspect of the caregiver’s life, from mental and physical health to personal and social time and satisfaction to financial resources. Often, this taxing burden results in fatigue, anger, depression, and anxiety. Research has identified some successful coping strategies–including: religious faith/participation, changing expectations, decreasing "type A" behaviors, seeking dependable/ sufficient informal support, using humor and perspective, seeking respite/sabbatical, seeking expressive outlets, and using ingenuity/problem-solving skills.

Source: Connections Magazine [Volume 8(1), Spring 1999]

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