Perceptions of the impact of chorea on health-related quality of life in Huntington disease (HD): A qualitative analysis of individuals across the HD spectrum, family members, and clinicians.

Chorea, a hallmark symptom of Huntington's disease (HD), is characterized by jerky involuntary movements affecting the whole body that can interfere with daily functioning and impact health-related quality of life (HRQOL). To characterize chorea's impact on everyday functioning and HRQOL and identify patterns of perception and experiences of chorea among patients, caregivers, and providers. Data from focus groups of individuals with manifest HD (n = 8 early-stage HD; n = 16 late-stage HD), individuals at-risk or prodromal HD (n = 16), family HD caregivers (n = 17), and HD clinicians (n = 25). Focus group recordings were transcribed verbatim and analysed via constant comparison to identify meaningful and salient themes of living with chorea. Global themes of chorea's impact identified included: watching for chorea, experiences of stigma, and constraints on independence and relationships. Themes distinct to specific respondent groups included: Vigilance (at risk, prodromal); adaptation to chorea (early-stage); loss of autonomy and social life (late-stage); monitoring engagement (family caregivers) and safety (clinical providers). Living with chorea significantly constrains daily functioning, interactions, and HRQOL across the HD disease spectrum. Addressing these impacts via appropriate management of chorea can potentially enhance functioning, HRQOL, and overall satisfaction for persons with HD and their families.

Purpose in Life Among Family Care Partners Managing Dementia: Links to Caregiving Gains.

BACKGROUND AND OBJECTIVES: Purpose in life is associated with better health and has been found to minimize caregiving stress. Greater purpose may also promote caregiving gains (i.e., rewards or uplifts from providing care), yet the implications of purpose for positive aspects of the care role are largely unknown. The present study determined how perceptions of purpose in life among persons with dementia (PWDs) and their family caregivers are linked to caregiving gains. RESEARCH DESIGN AND METHODS: This cross-sectional study examined 153 co-resident family caregivers drawn from the 2011 National Health and Aging Trends Study and National Study of Caregiving. Linear regressions were estimated to evaluate associations between caregivers' and PWDs' reports of their own purpose in life and caregivers' perceived caregiving gains, along with whether these associations vary by caregiver gender. Models controlled for caregivers' sociodemographic characteristics, relationship to the PWD, care tasks, role overload, negative caregiving relationship quality, and both care partners' chronic health conditions. RESULTS: Caregivers' higher purpose in life was significantly linked to greater caregiving gains. Beyond this association, PWDs' higher purpose in life was significantly associated with greater caregiving gains for women but not for men. DISCUSSION AND IMPLICATIONS: Purpose in life is a psychological resource that contributes to positive caregiving outcomes. Interventions to improve caregiver well-being could benefit from strategies that strengthen and maintain feelings of purpose among caregivers and PWDs.

Implementing Sustainable Evidence-Based Interventions in the Community: A Fidelity-Focused Training Framework for the Savvy Caregiver Program.

Evidence-based (EB) programs provide a tested means for addressing serious public health concerns. While establishing and maintaining fidelity to these programs is critical for high-quality outcomes, unfortunately, implementation reports rarely describe the strategies used to train and monitor fidelity in community-based implementations. Thus, an essential translational ingredient is a clearly articulated model for establishing a systemic, sustainable fidelity framework. This article provides a detailed description of the fidelity-focused framework developed for Michigan's statewide implementation of the Savvy Caregiver Program. This framework, titled Creating Confident Caregivers® (CCC), instilled conceptual understanding of fidelity, practice adherence, and competence via ongoing progressive practitioner training, peer observation, participant evaluation, and experiential assessments. Practitioners maintained very high evaluations from participants, and a select cadre of practitioners achieved master trainer status to monitor regional fidelity. This framework promotes sustainable fidelity to EB interventions and provides a replicable platform for other community-based implementations.

The Savvy Caregiver program: the demonstrated effectiveness of a transportable dementia caregiver psychoeducation program.

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.

The savvy caregiver program: developing and testing a transportable dementia family caregiver training program.

PURPOSE: This article reports on the development and field testing of the Savvy Caregiver Program, the transformation of a successful, academic-based caregiver psychoeducational program into a self-contained program that can be adopted in other locations. DESIGN AND METHODS: Program development began with a prototype of a 12-hr course with the aims of introducing family caregivers to the caregiving role, providing them with the knowledge, skills, and attitudes needed to carry out that role, and alerting them to self-care issues. Results from initial field trials dictated a substantial revision of the workshop materials. The next version was field tested in multiple sites in southern rural Minnesota, Colorado, and Alaska. In this expanded testing, participants evaluated the program, and cross-group comparisons were conducted by use of well-established caregiver well-being scales. RESULTS: Virtually all respondents reported increased skill, knowledge, and confidence, and all would recommend the program to others. A preintervention versus postintervention analysis indicates that caregivers' reaction to the overall behavior of the persons for whom they provide care (i.e., "total reaction"), their self-reported burden, and their beliefs about caregiving (emotional enmeshment) changed significantly in directions indicating better caregiver well-being. IMPLICATIONS: Results suggest that it is feasible to translate a research-based caregiver intervention into a packaged program that can be adopted in other settings without the direct involvement of the program initiators.

Discourse-derived perspectives: differentiating among spouses' experiences of caregiving.

A method of constant comparative analysis was used to code open-ended interviews with 132 spouse caregivers regarding their experiences in caregiving. Results of this analysis yielded 69 qualitative code categories. We used these categories to compare the caregivers on several groupings that the literature has identified as providing meaningful ways to differentiate among caregivers. We used the qualitative responses to compare the caregivers by caregiver gender care-recipient dementia severity, and duration of caregiving. Results partly confirmed previous findings that wife caregivers are more distressed than husbands, but the results also indicated these caregivers were more similar than dissimilar The other analyses likewise indicated greater similarities than dissimilarities in the caregiving experience. We next continued the analysis and, using the coding categories as a springboard, identified four distinct patterns for construction of the meaning of the caregiving experience in the caregivers' discourse. These discourse-derived framing categories, applicable in about three-quarters of the caregivers, offered other ways to distinguish among caregivers. Further analysis of these robust groupings' showed important differences among the groups. These framing categories suggest ways to differentiate among caregivers, based on their perception of their role in the caregiving situation, ways that might point the way to intervention strategies for each of the groupings.