ArticleJournal of the American Geriatrics Society2019
Quality of Life with Late-Stage Dementia: Exploring Opportunities to Intervene.
Article in Journal of the American Geriatrics Society, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 2 of them syntheses that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
8 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Defining end of life in dementia: A systematic review.Palliative medicine · 2021Pooled it
- Palliative care interventions in advanced dementia.The Cochrane database of systematic reviews · 2021Pooled it
- Prognostication in Alzheimer's disease and related dementias.Journal of the American Geriatrics Society · 2025Article
- Exploring subjective quality-of-life indicators in long-term care facilities: a mixed-methods research protocol.BMJ open · 2024Article
- Operationalizing deprescribing as a component of goal-concordant dementia care.Journal of the American Geriatrics Society · 2023Article
- Hospice Improves Care Quality For Older Adults With Dementia In Their Last Month Of Life.Health affairs (Project Hope) · 2022Article
- A Conceptual Model to Improve Care for Individuals with Alzheimer's Disease and Related Dementias and Their Caregivers: Qualitative Findings in an Online Caregiver Forum.Journal of Alzheimer's disease : JAD · 2021Article
- Designing technology to support greater participation of people living with dementia in daily and meaningful activities.Digital healthArticle
Corrections and comments
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Authors and funding
4 authors.
Funding
Abstract
BACKGROUND/
objectivesIn late-stage dementia, families often prioritize quality of life (QoL) and comfort, yet little research examines factors impacting QoL. We sought to (1) describe temporal trends in QoL in late-stage dementia, and (2) explore associations between patient characteristics, care interventions, and QoL.
designSecondary analysis of data from the Goals of Care clinical trial.
settingTwenty-two nursing homes (NHs) in North Carolina.
participantsFamily decision makers for residents with late-stage dementia. MEASUREMENTS: Family-reported QoL at baseline and at 9 months using the Alzheimer's Disease-Related Quality of Life Instrument (ADRQL) with five subscales scored 0 to 100 (higher scores indicate better quality). Families reported demographics, primary goal of care, and described their perceptions of residents' QoL. Chart reviews provided data on hospital transfers, treatment plans, and hospice enrollment. We ran mixed effects models of hypothesized variables and change in ADRQL over time.
resultsThe study sample was 241 dyads of residents with late-stage dementia and family decision makers. Family-reported ADRQL scores reflected moderately good QoL at baseline and at 9 months (69.1 vs 66.9; p = .106). Subscales for Awareness of Self (62.8; Global Deterioration Scale [GDS] = 5; 30.5; GDS = 7; p > .01) and Enjoyment of Activities (53.4; GDS = 5; 39.4; GDS = 7; p > .01) were lower in later stage disease. Qualitatively, family members associated better QoL for dementia with (1) activities, (2) opportunities to leave NH, (3) NH-structured activities, (4) attentiveness in NH, and (5) passive interaction. ADRQL at 9 months was associated with later dementia stage and referral to hospice (p < .01). Age (p = .004) and hospice enrollment were significantly associated with a larger decrease in ADRQL over 9 months (p = .019). A primary goal of comfort was associated with a larger increase in ADRQL (p = .022).
conclusionFamilies judge QoL to be moderately good in late-stage dementia. They perceive activities, opportunities to leave the NH, and quality of interpersonal care as ways to improve dementia-specific QoL.
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