title: The Impact of Huntington Disease on Family Carers: a Literature Overview.
abstract: Caring for a person with chronic disease often rests on the patient's family. Nevertheless, most studies on the needs, quality of life and caregiver burden focus on different types of dementia, including Alzheimer's and Parkinson's disease, stroke, cancer or mental illnesses. Less attention has been paid to informal caregivers of patients with Huntington's disease (HD). Meanwhile, psychosocial implications of HD are much more serious and wide-ranging. Thus, this paper aims to review the literature on the costs of caring for a person with HD (pHD). The review identifies the aspects of caregiving that are the most burdensome to family caregivers: negative experience with health and social care services, dissatisfaction with caregiving role, concern over children, loss of meaningful relationship with pHD, family breakdown and loss of social contacts and decrease in health. It also describes strategies of coping with HD. While the analysis points to the many similarities between taking care of HD patients and those suffering from other neurodegenerative disorders, it also emphasizes the factors associated with HD that are not present in other diseases: early onset, severity of symptoms, prolonged trajectory, its genetic, i.e. hereditary character and social ignorance of HD. It concludes that while in medical setting the HD patient is the one who draws professional attention, it is often the unaffected family caregiver who needs the most attention, support and help.
authors.affiliation: Katedra Nauk Społecznych UM w Poznaniu.
authors.forename: Jan
authors.initials: J
authors.lastname: Domaradzki
mesh_terms: D000223:Adaptation, Psychological; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D005260:Female; D006701:Home Nursing / Q000523:psychology*; D006801:Humans; D006816:Huntington Disease / Q000523:psychology*; D008297:Male; D011788:Quality of Life / Q000523:psychology*; D012944:Social Support
keywords: Huntington's disease; family caregivers; needs