Affiliations: [a] Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands
| [b] Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands
| [c] Huntington Center Topaz Overduin, Katwijk, The Netherlands
Correspondence to: Jessica Y. Winder, MD, Department of Neurology, Leiden University Medical Center, Albinusdreef 2, 2333 ZA Leiden, The Netherlands. Tel.: +31 71 526 5300; E-mail: [email protected].
Abstract: Background:Huntington’s disease is a progressive, incurable neurodegenerative disorder and it is not possible to delay onset or progression of the disease. Consequently, the disease leads to functional decline and loss of independency and finally to institutionalization. Objective:The aim of this study is to identify factors which are associated with nursing home admission in patients with Huntington’s disease. Methods:The Unified Huntington’s Disease Rating Scale (UHDRS) and the UHDRS-For Advanced Patients (UHDRS-FAP) were administered in 28 nursing home residents and 12 patients receiving day-care. Comparisons between the two groups were performed using Mann-Whitney U tests and Chi-square tests. The significantly different findings were fitted in individual univariate logistic regression models to determine which components were most predictive of institutionalization. Results:Day-care participants were more often married than nursing home residents (p = 0.006) and were functionally more independent: the Functional Assessment Scale (p = 0.022) of the UHDRS was significantly higher. Not being married was more predictive for nursing home admission than functional capacity in the regression models. Conclusions:Our results suggest that being married is protective for nursing home placement. Possibly, a caregiver living with a patient can assist with activities of daily living which the patient could not have done independently, resulting in being able to live at home longer. Providing support to unmarried patients, who do not have a caregiver living with them, by home care services specialized in Huntington’s disease might increase the chance of the best possible care before institutionalization and postpone nursing home admission.
Keywords: Huntington’s disease, advanced stage, nursing home admission, functional assessment, marriage