Dementia and Its Profound Impact on Family Members and Partners
Rubina Shah, Sam Salek, Faraz M Ali, S J Nixon, Kennedy Otwombe, John R Ingram, A.Y. Finlay
Abstract
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.