This article is about the trial of a transportable psychoeducation program for family caregivers of older adults with Alzheimer's disease and other dementias that was based on a program developed and previously tested in an academic setting. Family caregivers were recruited by agencies in three states and invited to participate in a randomized trial of this six-session program. Questionnaires were administered prior to randomization and again 5 to 6 months later to assess program effect. A total of 52 caregivers completed both questionnaires (22 were in the wait-list control group). Experimental participants' scores on measures of mastery and distress were significantly better than control participants' scores at follow-up (Time 2 Results for this transported program showed benefits to caregivers com parable to those in the previous trials. The program demonstrated that it could be offered in a variety of settings and that it had benefit for caregivers.
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"Another aspect of psychological function, family role function, was examined in five studies. Examples include the caregiver's perception of loss of self and of the relationship with the care recipient due to the disease  and family conflicts . Social dysfunction, such as avoiding social situations  and social integration of the caregiver in the community , were measured in one study each. "
[Show abstract][Hide abstract] ABSTRACT: Caregiver interventions may help improve the quality of informal care. Yet the lack of a systematic framework specifying the targets and outcomes of caregiver interventions hampers our ability to understand what has been studied, to evaluate existing programs, and to inform the design of future programs. Our goal was to develop an organizing framework detailing the components of the caregiving activities and the caregiver and care recipient outcomes that should be affected by an intervention. In so doing, we characterize what has been measured in the published literature to date and what should be measured in future studies to enable comparisons across interventions and across time.
Our data set comprises 121 reports of caregiver interventions conducted in the United States and published between 2000 and 2009. We extracted information on variables that have been examined as primary and secondary outcomes. These variables were grouped into categories, which then informed the organizing framework. We calculated the frequency with which the interventions examined each framework component to identify areas about which we have the most knowledge and under-studied areas that deserve attention in future research.
The framework stipulates that caregiver interventions seek to change caregiving activities, which in turn affect caregiver and care recipient outcomes. The most frequently assessed variables have been caregiver psychological outcomes (especially depression and burden) and care recipient physical and health care use outcomes.
Based on the organizing framework, we make three key recommendations to guide interventions and inform research and policy. First, all intervention studies should assess quality and/or quantity of caregiving activities to help understand to what extent and how well the intervention worked. Second, intervention studies should assess a broad range of caregiver and care recipient outcomes, including considering whether expanding to economic status and health care use of the caregiver can be accommodated, to ease subsequent economic evaluations of caregiving. Third, intervention studies should measure a common set of outcomes to facilitate cross-time and cross-study comparisons of effectiveness.
[Show abstract][Hide abstract] ABSTRACT: The purpose of this study was to describe health literacy needs related to incontinence and skin care among family or friend caregivers of individuals with Alzheimer disease (AD) and develop supportive and educational materials that address these needs.
The sample included 48 family/friend adult caregivers of individuals who had advanced dementia. Caregivers were spouses (44%), daughters (31%), or extended family members/friends (25%) recruited from community-based agencies, with a mean age of 64 ± 14 years (mean ± SD), and 75% were female. Nearly half (48%) had a racially or ethnically diverse background.
Focus groups, interviews, and written surveys were conducted to assess health literacy needs of AD caregivers related to incontinence and skin care; verbal responses were audiotaped, transcribed, and summarized. To address these needs, a set of educational and supportive materials was developed, whose content was directed by caregiver responses and supported by a literature review of current evidence and consultation with clinical and research experts. Study procedures were guided by an advisory committee of AD caregivers.
Caregivers had numerous health literacy needs related to incontinence and skin care; areas of need were categorized into knowledge, skills, and attitudes. Caregivers expressed a need to validate the health literacy they possessed. Fourteen educational and supportive documents were developed to address these needs.
Materials developed in this study are suitable to incorporate into interventions that support caregivers of persons with AD. They offer the potential to raise health literacy and care capacity of caregivers, increase communication with health care providers, and improve health outcomes of care recipients.
Journal of wound, ostomy, and continence nursing: official publication of The Wound, Ostomy and Continence Nurses Society / WOCN 01/2013; 40(5):515-23. DOI:10.1097/WON.0b013e3182a3ff24 · 1.18 Impact Factor