Abstract
BackgroundPrimary informal caregivers play a critical role in the care and support of persons with Alzheimer’s disease (AD). A recent systematic review found little existing research into whether caregiver quality-of-life affects the level or quality of care that caregivers provide to their loved ones with AD. The dearth of research could be due to the absence of research questionnaires designed specifically to measure level or quality of care in AD. In the present study, we interviewed primary informal caregivers to obtain their views on the type of questionnaire that would be most suitable to assess level or quality of care in AD.MethodsA qualitative descriptive design was used. Purposive sampling was used to select participants. Participants were primary informal caregivers who were 18 years of age and older and were directly involved in the day-to-day care of community-dwelling (residing in private homes) persons with AD. A total of 21 caregivers were interviewed using focus groups or one-on-one interviews. Data were analyzed using qualitative content analysis.ResultsInformal caregivers identified a number of factors that researchers should consider when developing an instrument to measure level or quality of care that informal caregivers provide to their loved ones with AD. Overall, caregivers preferred a questionnaire that would employ a case management approach that recognizes the increase in care demands as patient health deteriorates, that acknowledges the importance of social support for caregivers, and that considers the role of hired help.ConclusionsThe information generated from this study can help in developing an instrument for measuring the level or quality of care provided. Such an instrument could guide nursing practice in supporting caregivers as they care for persons with AD.
Highlights
Primary informal caregivers play a critical role in the care and support of persons with Alzheimer’s disease (AD)
To start the process of questionnaire development, we identified two questionnaires and sought caregiver input on whether and how these questionnaires could be modified to measure level or quality of care in AD
Use of a case management approach In the context of the level or quality of care provided to their loved ones, caregivers reported preferring a questionnaire that had characteristics similar to the Caregiver Burden Scale (CBS) scale
Summary
Primary informal caregivers play a critical role in the care and support of persons with Alzheimer’s disease (AD). We interviewed primary informal caregivers to obtain their views on the type of questionnaire that would be most suitable to assess level or quality of care in AD. Over 5 million Americans are presently living with the disease [2, 3]. Projections suggest up to 16 million Americans will have the disease by 2050 [3, 4]. Approximately 40,000 Canadians develop the disease annually, with projections suggesting the total number of Canadians with AD or other dementias could double to 1.4 million people by 2030 [7, 8]
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