Caregiver burden in Huntington's disease.

Abstract

Objective: Huntington's disease (HD) is an autosomal dominant heritable disease characterized by progressive neuron death and subsequent degeneration of motor, cognitive, and emotional functioning. Caregiver research studies in HD are few. The purpose of the current study was to examine caregiver burden in HD. Method: The sample consisted of 62 pairs of caregivers and care receivers (persons with Huntington's disease; pHDs). Caregivers were assessed regarding their psychological functioning, subjective appraisal of burden, and appraisal of problem-solving ability as well as the general level of daily functioning of the pHD in their care; pHDs were queried regarding their psychological functioning. Results: Analyses showed that caregiver subjective burden, pHD depression, and caregiver problemsolving appraisal were significantly associated with caregiver depression. The results did not support caregiver burden as a mediator. Conclusions: Findings delineate impact of caregiving in HD and highlight the importance of mood assessment and treatment in all groups. Suggestions for future research and implications for clinical interventions are discussed.

The relationship between burden and well-being among caregivers of Italian people diagnosed with severe neuromotor and cognitive disorders

“…These findings suggest that caregivers who are more satisfied have a lower probability to perceive high burden and to be thus exposed to burnout risk. These results were in line with studies conducted with caregivers of people with different diseases (Bassi et al, 2014;Brouwer, Exel, Berg, Bos, & Koopmanschap, 2008;Cohen, Colantonio, & Vernich, 2002;Pickett, Altmaier, & Paulsen, 2007). Moreover, the recent mental health continuum model (Keyes, 2007) provided empirical support to the WHO's definition of health as presence of well-being, showing that wellbeing and ill-being dimensions belong to two different and relatively independent continua, rather than being opposite poles of the same continuum.…”

Palliative Care in Huntington Disease: Personal Reflections and a Review of the Literature

“…The psychiatric burden of knowing a loved one is suffering from a life-limiting illness is stressful for caregivers, with caregivers having up to a 60% increase in mortality compared to non-caregivers 21. In neurodegenerative conditions, caregiver quality of life, burnout, and clinically significant depression are highly correlated with the severity of patient physical disability and neuropsychiatric symptoms 22,23…”

The Functional Implications of Motor, Cognitive, Psychiatric, and Social Problem-Solving States in Huntington's Disease

“…Moreover, caregiver burden in HD is positively and strongly associated with the affected individual's level of depression (Pickett Jr., Altmaier, & Paulsen, 2007)-an issue that research has shown can be ameliorated via social problem-solving therapy when SPS is deficient. In fact, psychiatric and behavioral issues-likely captured by this research and the inclusion of the novel SPS instrument-are the most frequently cited reasons for individuals with HD being institutionalized by caregivers (Rosenblatt & Leroi, 2000;van Duijn et al, 2007).…”