ArticleJournal of Alzheimer's disease reports2021
Quality of Life and Caregiver Burden of Alzheimer's Disease Among Community Dwelling Patients in Europe: Variation by Disease Severity and Progression.
Article in Journal of Alzheimer's disease reports, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
21 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- The needs and unmet needs for people living with dementia, caregivers and care workers in dementia health care systems: a systematic review.Frontiers in public health · 2025Pooled it
- Care burden on family caregivers of patients with dementia and affecting factors in China: A systematic review.Frontiers in psychiatry · 2022Pooled it
- Comparing mental health predictors among child and older adult caregivers in Canada: A convergent mixed methods study.Canadian journal of public health = Revue canadienne de sante publique · 2026Article
- Balancing benefit and risk in early Alzheimer's disease: the European Medicines Agency (EMA) assessment of lecanemab and donanemab.The Lancet regional health. Europe · 2026Review
- When support matters: quality of life in alzheimer's family caregivers "quality of life in alzheimer's family caregivers".Archives of public health = Archives belges de sante publique · 2026Article
- The Mediating Role of Resilience in the Relationship Between Anticipatory Grief and Quality of Life in Caregivers of People with Dementia: A Cross-Sectional Study.Healthcare (Basel, Switzerland) · 2025Article
- Caregiver Burden and Psychological Distress Among Informal Caregivers for Individuals with Dementia in the Republic of Kazakhstan: A Cross-Sectional Study.Healthcare (Basel, Switzerland) · 2025Article
- The Effect of Psychological Resilience and Self-Efficacy on Caregiver Burden: A Cross-Sectional Study Among Caregivers of People With Alzheimer's Disease.Nursing open · 2025Article
- The Unseen Burden: A Qualitative Investigation of Polish LGBTQ+ Caregivers' Experiences.Journal of clinical medicine · 2025Article
- Death Anxiety Among Peer Caregivers of Older Persons in Two US Prisons.Social sciences · 2025Article
- Quality of Life in Mild Cognitive Impairment and Mild Dementia Associated with Alzheimer's Disease: A Systematic Review.Neurology and therapy · 2025Review
- Navigating Dementia and Delirium: Balancing Identity and Interests in Advance Directives.Nursing philosophy : an international journal for healthcare professionals · 2025Article
- Factors associated with the occupational balance in caregivers of people with dementia: A cross-sectional study from the ATENEA project.BMC geriatrics · 2024Article
- Factors influencing the employed caregiver burden for patients with dementia residing in nursing homes: A cross-sectional study from China.International journal of nursing sciences · 2024Article
- Potential Impact of Slowing Disease Progression in Early Symptomatic Alzheimer's Disease on Patient Quality of Life, Caregiver Time, and Total Societal Costs: Estimates Based on Findings from GERAS-US Study.Journal of Alzheimer's disease : JAD · 2024Article
- Assessing Quality of Life, Economic Burden, and Independence Across the Alzheimer's Disease Continuum Using Patient-Caregiver Dyad Surveys.Journal of Alzheimer's disease : JAD · 2024Article
- Assessing out-of-pocket expenses and indirect costs for the Alzheimer disease continuum in the United States.Journal of managed care & specialty pharmacy · 2023Article
- Does Avoiding Distressing Thoughts and Feelings Influence the Relationship between Carer Subjective Burden and Anxiety Symptoms in Family Carers of People with Dementia?Journal of applied gerontology : the official journal of the Southern Gerontological Society · 2023Article
- Family Caregivers of People with Dementia Associate with Poor Health-Related Quality of Life: A Nationwide Population-Based Study.International journal of environmental research and public health · 2022Article
- Sustaining Our Relationship: Dyadic Interactions Supported by Technology for People with Dementia and Their Informal Caregivers.International journal of environmental research and public health · 2022Article
Corrections and comments
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Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAlzheimer's disease (AD) is a significant burden on patients and caregivers. How this burden increases as disease progresses has not been well researched.
objectiveTo assess the association of caregiver burden and quality of life with Alzheimer's disease severity and disease progression in community-dwelling patients in Germany, Spain, and the UK.
methodsThis was a prospective observational longitudinal study of mild-to-moderate AD patients (assessed by Mini-Mental State Examination, MMSE), and their caregivers. The humanistic burden was assessed using these instruments: [Rapid Assessment of Physical Activity (RAPA), EuroQoL-5-Dimension Level (EQ-5D-5L)] and caregiver-reported [Dependence Scale (DS), EQ-5D-5L, Zarit Burden Interview (ZBI)]. Caregiver-reported healthcare resource use was assessed using the Resource Use in Dementia (RUD) and ad-hoc questions.
resultsOf 616 patients recruited, 338 and 99 were followed-up at 12 and 18 months, respectively. The caregiver-reported EQ-5D-5L scores of patients' health-related quality of life (HRQoL) showed a negative trend over time (baseline: 0.76; 18 months: 0.67) while patient-reported HRQoL remained at 0.85. DS scores tended to worsen. Disease progression was an independent predictor of HRQoL and increased dependence.Mean ZBI score increased over time reflecting an increase in caregiver burden; MMSE being an independent predictor for caregiver burden. Patient resource utilization and caregiver time for caregiving tended to increase over time.
conclusionWe found significant association between disease progression and caregiver and patient burden. Independently, both disease-specific outcomes and disease burden measures increased over time, but as disease progresses, we also found incremental burden associated with it.
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