Falls, Fear of Falling, and Preventive Measures in Huntington’s Disease: The Perspectives of Individuals with Huntington’s Disease and Caregivers in Long-Term Care

Article type: Research Article

Authors: Kalkers, Kristel^{a; b; *} | Schols, Jos M.G.A.^{c; d} | van Zwet, Erik W.^e | Roos, Raymund A.C.^a

Affiliations: [a] Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands | [b] Mijzo, Raamsdonksveer, The Netherlands | [c] Department of Health Services Research, Care and Public Health Research Institute (CAPHRI), Maastricht University, Maastricht, The Netherlands | [d] Department of Family Medicine, Care and Public Health Research Institute (CAPHRI), Maastricht University, Maastricht, The Netherlands | [e] Department of Biomedical Data Sciences, Leiden University Medical Center, Leiden, The Netherlands

Correspondence: [*] Correspondence to: Kristel Kalkers, MSc, Mijzo, Department of Psychology, Kloosterweg 1, 4941 EG, Raamsdonksveer, The Netherlands. Tel.: +31653198462; E-mail: [email protected].

Abstract: Background:Falls are common in Huntington’s disease (HD), which can have serious consequences and may therefore lead to fear of falling (FoF). There is little knowledge about falls or FoF in individuals with HD or about formal and informal caregivers’ fear about falls in individuals with HD. Objective:To explore prevalence of falls, FoF and fall preventive measures both those applied and those not included in managing falls in individuals with HD and their formal and informal caregivers, and to identify the relationship between FoF and, anxiety, awareness and cognitive functioning respectively. Methods:In a multi-center observational cross-sectional study, care-independent and -dependent individuals with HD and their formal and informal caregivers were recruited from six Dutch nursing homes specialized in HD. The participants were assessed by means of questionnaires enquiring about falls, FoF, awareness of fall risk, cognition, anxiety and fall preventive measures. Results:For all included 158 individuals with HD, the fall prevalence over the last 30 days was 28.8%. The prevalence of FoF in individuals with HD, formal caregivers and informal caregivers was 47.6%, 25.6%, and 63.5%, respectively, for care-independent individuals with HD and 46.9%, 26.3%, and 62.0%, respectively, for care-dependent individuals with HD. Anticipatory awareness of fall risks and gender are predictors of FoF in care-independent individuals with HD, though not in the care-dependent group. A combination of fall preventive measures is used in most individuals with HD. Conclusion:Fall prevalence is high and FoF is common in individuals with HD and their caregivers. Gender and anticipatory awareness are risk factors for FoF. In addition to the use of individual multifactorial fall prevention strategies, it is important to support both formal and informal caregivers in coping with falls

Keywords: Huntington’s disease, falls, fear, cognition, awareness, caregivers

DOI: 10.3233/JHD-210493

Journal: Journal of Huntington's Disease, vol. 10, no. 4, pp. 493-503, 2021