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End-of-life experiences in individuals with dementia with Lewy bodies and their caregivers: A mixed-methods analysis
Easton Wollney, Kaitlin Sovich, Brian LaBarre, Susan M Maixner, Henry L Paulson, Carol Manning, Julie A Fields, Angela Lunde et al.. PloS one, 2024-08-29
Topic: Health services, long-term care and technology
Individuals with DLB (n = 50) died 3.24 ± 1.81 years after diagnosis, typically of disease-related complications. Only 44% of caregivers reported a helpful conversation with clinicians regarding what to expect at the end of life in DLB. Symptoms commonly worsening prior to death included: cognition and motor function, ADL dependence, behavioral features, daytime sleepiness, communication, appetite, and weight loss. Almost 90% of participants received hospice care, but 20% used hospice for <1 week. Most caregivers reported overall positive experiences in the last month of life, but this was not universal. Having information about DLB and what to expect, access to support, and hospice care were healthcare factors associated with positive and negative end of life experiences. Hospice experiences were driven by communication, care coordination, quality care, and caregiver education. Most caregivers of individuals who died with DLB reported positive end-of-life experiences. However, the study identified multiple opportunities for improvement relating to clinician counseling of patients/families, support/hospice referrals, and monitoring individuals with DLB to identify approaching end of life. Future research should quantitatively identify changes that herald end of life in DLB and develop tools that can assist clinicians in evaluating disease stage to better inform counseling and timely hospice referrals. TRIAL REGISTRATION: Trial registration information: NCT04829656.
Key findings
- Individuals with DLB (n = 50) died 3.24 ± 1.81 years after diagnosis, typically of disease-related complications.
- Only 44% of caregivers reported a helpful conversation with clinicians regarding what to expect at the end of life in DLB.
- Symptoms commonly worsening prior to death included: cognition and motor function, ADL dependence, behavioral features, daytime sleepiness, communication, appetite, and weight loss.
- Almost 90% of participants received hospice care, but 20% used hospice for <1 week.
- Most caregivers reported overall positive experiences in the last month of life, but this was not universal.
Study details
- Participants50
- Evidence strengthLow
How this study scored 50/100
Published in a peer-reviewed journal. Scored zero for study design, effect reported and randomised / blinded because the record does not state it. We have no data on journal's citation record, times cited, citations per year, impact for its field and year, cited by studies here, still being cited, senior author's track record, institution's track record, multi-centre collaboration and free to read, so those were left out: it earned 28 of the 56 points we could judge it on, which is 50 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (PloS one) |
| Journal's citation record | — / 4 | No journal record from OpenAlex — left out of this score |
| Study design | 0 / 12 | No study design recorded — scores zero, not guessed (not stated in the record — scored 0) |
| Strength of evidence | 1 / 5 | Rated “low” in our summary |
| Peer-review validation | 10 / 10 | Peer-reviewed. Published as an article in a named peer-reviewed journal. |
| How recent | 4 / 5 | 2024 — within 3 year(s) of the newest study here |
| Sample size | 1 / 4 | 50 participants |
| Effect reported | 0 / 3 | No effect size reported — scores zero (not stated in the record — scored 0) |
| Studied in people | 3 / 3 | Studied in people (participant count stated) |
| Randomised / blinded | 0 / 2 | No randomisation or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | — / 7 | No citation count (not found in OpenAlex) — left out of this score |
| Citations per year | — / 5 | No citation count or no year — left out of this score |
| Impact for its field and year | — / 6 | No field-weighted citation impact (OpenAlex has none yet) — left out of this score |
| Cited by studies here | — / 6 | Not yet checked against this library's citation graph — left out of this score |
| Still being cited | — / 4 | No yearly citation counts — left out of this score |
| Senior author's track record | — / 4 | Senior author's record not available — left out of this score |
| Institution's track record | — / 3 | No institution listed in OpenAlex — left out of this score |
| Multi-centre collaboration | — / 3 | Institutions not listed — left out of this score |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 39208192) |
| Free to read | — / 2 | Access not recorded — left out of this score |
| Points | 28 / 56 | Scored on 10 of 20 parts. We have no data for the rest, so they are left out: 28 of the 56 points we could judge it on is 50 out of 100. |
| Total | 50 / 100 | — |
What each of these 20 components measures, and what this score is not →
Read the original
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Cite this study APA, Vancouver, BibTeX · download .bib or .ris
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APA 7th
Wollney, E., Sovich, K., LaBarre, B., Maixner, S. M., Paulson, H. L., Manning, C., et al. (2024). End-of-life experiences in individuals with dementia with Lewy bodies and their caregivers: A mixed-methods analysis. PloS one. https://doi.org/10.1371/journal.pone.0309530
Vancouver
Wollney E, Sovich K, LaBarre B, Maixner SM, Paulson HL, Manning C, et al. End-of-life experiences in individuals with dementia with Lewy bodies and their caregivers: A mixed-methods analysis. PloS one. 2024. doi:10.1371/journal.pone.0309530. PMID: 39208192.
BibTeX
@article{wollney2024-39208192,
author = {Wollney, Easton and Sovich, Kaitlin and LaBarre, Brian and Maixner, Susan M and Paulson, Henry L and Manning, Carol and Fields, Julie A and Lunde, Angela and others},
title = {{End-of-life experiences in individuals with dementia with Lewy bodies and their caregivers: A mixed-methods analysis}},
journal = {PloS one},
year = {2024},
doi = {10.1371/journal.pone.0309530},
pmid = {39208192},
url = {https://doi.org/10.1371/journal.pone.0309530}
}
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