Dementia and Its Profound Impact on Family Members and Partners: A Large UK Cross-Sectional Study.

Autor:	Shah R; Division of Infection and Immunity, School of Medicine, Cardiff University., Salek MS; Institute of Medicines Development.; School of Life & Medical Sciences, University of Hertfordshire, Hatfield, UK., Ali FM; Division of Infection and Immunity, School of Medicine, Cardiff University., Nixon SJ; Multiple Sclerosis Society, Cardiff., Otwombe K; Statistics and Data Management Centre, Perinatal HIV Research Unit, Chris Hani Baragwanath Academic Hospital, University of the Witwatersrand, Johannesburg, South Africa., Ingram JR; Division of Infection and Immunity, School of Medicine, Cardiff University., Finlay AY; Division of Infection and Immunity, School of Medicine, Cardiff University.
Jazyk:	angličtina
Zdroj:	Alzheimer disease and associated disorders [Alzheimer Dis Assoc Disord] 2024 Oct-Dec 01; Vol. 38 (4), pp. 338-343. Date of Electronic Publication: 2024 Nov 07.
DOI:	10.1097/WAD.0000000000000647
Abstrakt:	Introduction: Dementia can adversely affect the quality of life (QoL) of family members/partners of those affected. Measuring this often-neglected burden is critical to planning and providing appropriate support services. This study measures this impact using the Family-Reported Outcome Measure (FROM-16). Methods: A large UK cross-sectional online study through patient research platforms, recruited family members/partners of people with dementia, to complete the FROM-16. Results: Totally, 711 family members/partners (mean age=58.7 y, SD=12.5; females=81.3%) of patients (mean age=81.6, SD=9.6; females=66.9) with dementia completed the FROM-16. The FROM-16 mean total score was 17.5 (SD=6.8), meaning "a very large effect" on QoL of family members, with females being more adversely impacted. Conclusions: Dementia profoundly impacts the QoL of family members/partners of patients. Routine use of FROM-16 could signpost provision of care support, reducing family members' burnout. Such routine data could be used in economic analysis of the burden of dementia as well as in predicting institutionalization. Competing Interests: F.M.A. is employed by Cardiff University: Cardiff University receives royalties from some uses of FROM-16. A.Y.F. reports personal fees from Novartis Lecture honorarium, personal fees from Medscape Podcast honorarium, personal fees from Eli Lilly Lecture honorarium, outside the submitted work. M.S.S. and A.Y.F. are joint copyright owners of the FROM-16 for which Cardiff University receives royalties for its commercial use, and they receive a share under standard university policy. J.R.I. receives a stipend as Editor-in-Chief of the British Journal of Dermatology and an authorship honorarium from UpToDate. He is a consultant for Abbvie, Boehringer Ingelheim, ChemoCentryx, Citryll, Novartis, and UCB Pharma and has served on advisory boards for Insmed, Kymera Therapeutics and Viela Bio. He is co-copyright holder of HiSQOL, Investigator Global Assessment and Patient Global Assessment instruments for HS. His department receives income from royalties for the use of the Dermatology Life Quality Index (DLQI), Family Reported Outcome Measure (FROM-16) and related instruments. The remaining authors declare no conflicts of interest. (Copyright © 2024 The Author(s). Published by Wolters Kluwer Health, Inc.)
Databáze:	MEDLINE
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