Alzheimer's degenerative brain disease : an investigation into the use of support systems by primary caregivers and patients
Date
1987
Authors
Peet, Dorothy Dobbie
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Abstract
The purpose of this study was to investigate the use of support systems by primary caregivers of patients with Alzheimer's degenerative brain disease. The study focused on the requirement and availability of support for both primary caregivers and patients during the three phases of the disease . Specifically, the following four research questions were considered : Does the type of support required by the primary caregiver and the patient vary with the progress of the disease? Does the type of support available to the primary caregiver and the patient vary with the progress of the disease? Do the primary caregiver and the patient believe they are receiving proper guidance and are correctly informed about medical care from the professionals whose services they require? Do the primary caregiver and the patient believe there is an increasing concern and public awareness about Alzheimer's degenerative brain disease?
The subjects were 50 primary caregivers (spouse, sibling , or adult child) of patients afflicted with Alzheimer's disease. Names of subjects were obtained from the Alzheimer Support Association, Victoria B. C. branch. Thirty-two of the caregivers were female and 18 were male. The majority (32) were between 61 and 80 years old. The caregivers also served as proxy respondents for their patients, 23 of whom were female and 27 male. The majority (38) of patients were between 71 and 90 years old. To maintain their anonymity, respondents were not required to sign their names to their returned questionnaires. The research design used was exploratory and descriptive. The researcher-made, 10 page mailed self-administered questionnaire included yes/no questions, open-ended questions, and brief checklists for some of the demographic information. All subjects were requested to respond from their memory or experience with the patient during the phase of the disease referred to in each question.
The research compared the circumstances of caregivers of patients in the three phases of the disease and responding from three situations, (a) the Alzheimer patient and the caregiver living at home. (b) the Alzheimer patient living in a care facility and the caregiver living at home, and (c) the Alzheimer patient deceased and the caregiver living at home. The results indicated that the type of support respondents required and their perceptions of various issues were (collectively and individually) consistently similar to findings in reports by professionals working with Alzheimer's patients and their families. The conclusions of the study were that (a) the type of support required by the primary caregiver and the patient varied with the progress of the disease, (b) the type of support believed available and actually utilized by the primary caregiver and the patient varied with the progress of the disease , (c) not all primary caregivers believed they and their patient were receiving proper guidance and were correctly informed about medical care from the professionals whose services they required, and (d) almost all of the respondents believed there is an increasing concern and public awareness about Alzheimer's disease.