TY - JOUR
T1 - Nursing home residents with Huntington's disease
T2 - Heterogeneity in characteristics and functioning
AU - Ekkel, Marina R.
AU - Veenhuizen, Ruth B.
AU - van Loon, Anouk M.
AU - Depla, Marja F. I. A.
AU - Verschuur, Els M. L.
AU - Onwuteaka-Philipsen, Bregje D.
AU - Hertogh, Cees M. P. M.
N1 - Funding Information: The study was funded by Atlant, Pieter van Foreest Stichting, and Stichting Vermogensbeheer Hoogeland Zorg. The funders had no role in study design, methods, subject recruitment, data collection, analysis and preparation of paper. Funding Information: We would like to thank the patients and their families for their contribution to this study. We would also like to thank Kristel Kalkers of Mijzo and the personnel of the participating nursing homes: Amstelring, Archipel, Atlant, Land van Horne, Mijzo, Noorderbreedte, Patyna, and Topaz for their help in this study. Finally, we thank Monique Losekoot from Leiden University Medical Center for providing CAG-repeats to the elderly care physicians. Publisher Copyright: © 2023
PY - 2023/7/1
Y1 - 2023/7/1
N2 - Background: In Huntington's disease (HD), admission to a nursing home (NH) is required in advanced disease stages. To gain insight in care needs, more knowledge is needed on the functioning of this group. Objective: Describing patient and disease characteristics, their functioning, and gender differences. Methods: A cross-sectional descriptive design was used to collect data of 173 patients living in eight Dutch HD-specialized NHs. Data were collected on characteristics and functioning. We tested for gender differences. Results: Mean age was 58.3 years and 49.7% were men. Activities of daily living and cognition varied from 46 to 49% mildly impaired to 22–23% severely impaired. Communication was severely impaired in 24%. Social functioning was low in 31% and high in 34%. A majority of patients used psychotropic medications (80.3%) and showed neuropsychiatric signs (74%). Women were on average more dependent in ADL (severely impaired 33.3% vs 12.8%), more often depressed (26.4% vs 11.6%), and prescribed antidepressant medications more often (64.4% vs 48.8%) than men. Conclusions: The population of HD patients in NHs is heterogeneous in terms of patient and disease characteristics, and functioning. As a consequence, care needs are complex leading to implications for the required expertise of staff to provide adequate care and treatment.
AB - Background: In Huntington's disease (HD), admission to a nursing home (NH) is required in advanced disease stages. To gain insight in care needs, more knowledge is needed on the functioning of this group. Objective: Describing patient and disease characteristics, their functioning, and gender differences. Methods: A cross-sectional descriptive design was used to collect data of 173 patients living in eight Dutch HD-specialized NHs. Data were collected on characteristics and functioning. We tested for gender differences. Results: Mean age was 58.3 years and 49.7% were men. Activities of daily living and cognition varied from 46 to 49% mildly impaired to 22–23% severely impaired. Communication was severely impaired in 24%. Social functioning was low in 31% and high in 34%. A majority of patients used psychotropic medications (80.3%) and showed neuropsychiatric signs (74%). Women were on average more dependent in ADL (severely impaired 33.3% vs 12.8%), more often depressed (26.4% vs 11.6%), and prescribed antidepressant medications more often (64.4% vs 48.8%) than men. Conclusions: The population of HD patients in NHs is heterogeneous in terms of patient and disease characteristics, and functioning. As a consequence, care needs are complex leading to implications for the required expertise of staff to provide adequate care and treatment.
KW - Advanced stage
KW - Functioning
KW - Gender differences
KW - Huntington's disease
KW - Long term care
UR - http://www.scopus.com/inward/record.url?scp=85160737005&partnerID=8YFLogxK
U2 - https://doi.org/10.1016/j.bandc.2023.106002
DO - https://doi.org/10.1016/j.bandc.2023.106002
M3 - Article
C2 - 37269816
SN - 0278-2626
VL - 169
JO - Brain and Cognition
JF - Brain and Cognition
M1 - 106002
ER -