ArticleJournal of Alzheimer's disease : JAD2021
Comparison of the Caregiving Experience of Grief, Burden, and Quality of Life in Dementia with Lewy Bodies, Alzheimer's Disease, and Parkinson's Disease Dementia.
Article in Journal of Alzheimer's disease : JAD, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers, 1 of them a synthesis 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
26 citing papers in PubMed, 1 synthesis or guideline pooled it, 38 citations in OpenAlex.
- A systematic review of coping and pre-death grief among dementia family caregivers.Palliative & supportive care · 2025Pooled it
- "Triggering the palliative intent"?: A qualitative implementation evaluation of a prognostication model for advanced dementia (PRO-MADE) in a geriatric tertiary care setting for the integration of early palliative care.BMC palliative care · 2026Article
- Caregiver experiences after the death of a person with dementia with Lewy bodies: A mixed-methods analysis.Journal of Alzheimer's disease : JAD · 2025Article
- Utilization Patterns and Clinical Factors Associated With Hospitalization in Early-Stage Dementia With Lewy Bodies.International journal of geriatric psychiatry · 2025Article
- Suffering and loss in Lewy body dementia: Applying a palliative care lens to a longitudinal narrative study.Palliative & supportive care · 2025Article
- Research on the perspectives of people affected by dementia with Lewy bodies: a scoping review.Alzheimer's research & therapy · 2025Article
- Assessment of the Psychological Burden Among Family Caregivers of People Living With Dementia, Parkinson's, and Alzheimer's Disease Using the Zarit Burden Interview From Bangladesh.Brain and behavior · 2025Article
- "By the Time We Knew …": Poetic Analysis of End-of-Life Caregiving Experiences for Rapidly Progressive and Slower-Duration Dementia Syndromes.Journal of the American Geriatrics Society · 2025Article
- Resigned but Resilient: Caregiver Perceptions of Role Ambiguity and Quality of Care During Hospital-to-Home Transitions of Older Latinos Living With Dementia.Journal of aging and health · 2025Article
- Parkinson's Disease and Caregiving Roles, Demands, and Support Needs and Experiences: A Scoping Review.Healthcare (Basel, Switzerland) · 2025Article
- Delineation of the cognitive and neuropsychiatric features of Pisa syndrome in dementia with Lewy bodies.Frontiers in aging neuroscience · 2025Article
- Health-Related Quality of Life and Bereavement in the 2019 Georgia Behavioral Risk Factor Surveillance System.Behavioral sciences (Basel, Switzerland) · 2024Article
- Parkinson's Disease Carepartners' Perceptions of the Challenges and Rewards of Caregiving.The American journal of hospice & palliative care · 2024Article
- Substantia nigra hyperechogenicity and brain ventricular size as biomarkers of early dementia with Lewy bodies.Alzheimer's research & therapy · 2024Article
- Caregiver Experiences and Burden in Moderate-Advanced Dementia With Lewy Bodies.Neurology. Clinical practice · 2024Article
- Environmental risk factors provoke new thinking for prevention and treatment of dementia with Lewy bodies.Heliyon · 2024Review
- Compound impact of cognitive and physical decline: A qualitative interview study of people with Parkinson's and cognitive impairment, caregivers and professionals.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Ethical Considerations for Identifying Individuals in the Prodromal/Early Phase of Parkinson's Disease: A Narrative Review.Journal of Parkinson's disease · 2024Review
- Factors Associated With Increased Health Care Utilization for Patients With Dementia With Lewy Bodies: A Narrative Review.Journal of patient-centered research and reviews · 2024Review
- Outcome measures for Alzheimer's disease: A global inter-societal Delphi consensus.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 3 institutions in 1 country.
Funding
Abstract
backgroundCaregivers of persons living with Alzheimer's disease (AD), dementia with Lewy bodies (DLB), and Parkinson's disease dementia (PDD) are faced with numerous challenges. However, little is known about the caregiving experience across different dementias.
objectiveThe aims of this cross-sectional study were to examine the differences in the caregiver experience between DLB, PDD, and AD.
methodsRespondents were caregivers (N = 515; 384 DLB, 69 AD, 62 PDD) who completed a 230-question survey including sociodemographics, disease severity, neuropsychiatric symptoms, and measures of grief, burden, depression, quality of life, social support, well-being, care confidence, and mastery/self-efficacy.
resultsThere were no differences in caregiver age, sex, race, or education, or in the distribution of disease severity between diagnostic groups. Constructs were highly intercorrelated with positive attributes (caregiver QoL, care recipient QoL, social support, well-being, mastery and care confidence) being inversely correlated with negative attributes (burden, grief, and depression). Across dementia etiologies, no differences were reported for quality of life, social support, depression, well-being, psychological well-being, mastery, care confidence, burden or grief. Instead, we found that the caregiver's experience was dependent on caregiver characteristics, person living with dementia characteristics and their most disturbing symptom, with behavior, personality changes, and sleep having the greatest effect on constructs.
conclusionCaregiver ratings of psychosocial constructs may be more dependent on care recipient-caregiver dyad characteristics and the current symptoms than the underlying cause of those symptoms. Interventions to improve the caregiving experience should be developed to address specific psychosocial constructs rather than focusing on disease etiology or stage.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.