“By the Time We Knew …”: Poetic Analysis of End-of-Life Caregiving Experiences for Rapidly Progressive and Slower-Duration Dementia Syndromes

Background

One 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.

Methods

We 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.

Conclusions

End-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.