ArticleJournal of the American Geriatrics Society2025
"By the Time We Knew …": Poetic Analysis of End-of-Life Caregiving Experiences for Rapidly Progressive and Slower-Duration Dementia Syndromes.
Article in Journal of the American Geriatrics Society, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
2 citing papers in PubMed.
- Multidisciplinary recommendations for palliative and supportive care in Creutzfeldt-Jakob disease and related disorders.Age and ageing · 2026Review
- "They're exhausted": Hospice Staff Views on Caring for Patients and Families Impacted By Dementia.Journal of pain and symptom management · 2026Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
12 authors.
Funding
Abstract
backgroundOne in three older adults in the United States dies with or from dementia. Little is known about whether end-of-life caregiving experiences differ by dementia diagnosis.
methodsWe conducted a secondary analysis of two qualitative studies. Participants included caregivers of decedents with "rapid-type" sporadic Creutzfeldt-Jakob Disease (sCJD, survival prognosis of < 1 year) or "slow-type" Alzheimer's disease and related dementias (survival prognosis of 5-20 years). We used reflexive thematic analysis and a novel method, poetic analysis, to compare end-of-life caregiving experiences.
results"Rapid-type" caregivers (n = 12) had a median age of 59 (range 45-73) years; 6 were female, and 9 were spouses. "Slow-type" caregivers (n = 15) had a median age of 69 (45-82) years; 9 were female, and 11 were spouses. We identified three main areas of differential experience that were influenced by syndrome rarity and participation in research yet hinged on time. Time enables preparation: Due to the rarity of sCJD, "rapid-type" caregivers struggled to obtain accurate diagnoses, which prevented preparation for end-of-life care. Weeks or months before death, specialists simultaneously disclosed sCJD diagnoses and recommended hospice. In contrast, for "slow-type" dementia, preparation began years before death. Time complicates conflict: Most "rapid-type" caregivers described conflicts, rarely resolved before death, about code status, treatment, or care location decisions. Fewer "slow-type" caregivers experienced such conflicts, and these were typically resolved before death; instead, they experienced conflict between needs and what the care system provides. Postmortem experience contrasts with perimortem: For "rapid-type" dementia, short perimortem periods contrasted with elongated and often intense postmortem logistics and grief. For "slow-type" caregivers, preparation and perimortem grieving typically led to shorter duration and minimally intrusive postmortem logistics and grief.
conclusionsEnd-of-life care for dementia should attend to and support axes of differential experience based on diagnosis and rarity, time since symptom onset (affecting preparation and conflict resolution), and participation in research studies.
Indexed as
Identifiers
What OpenQuestion holds
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.