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A Qualitative Study to Characterize the Experiences of Patients and Caregivers With Dementia Diagnostic Disclosure Communication and Care Planning
Joanna Paladino, Heily Chavez Granados, Jade A. Connor Eruchalu, Carine Davila, Liliana A Ramirez Gomez, Alissa Bernstein Sideman, Daniel Paul Dohan, Elizabeth C. Lindenberger et al.. Journal of Geriatric Psychiatry and Neurology, 2025-10-15
Topic: Risk, prevention and care in population studies
BackgroundClinician communication at the time of a dementia diagnosis often inadequately addresses patient and caregiver needs. We aimed to characterize the communication experiences of patients and caregivers affected by dementia using an evidence-based serious illness communication framework.MethodsWe conducted semi-structured interviews of patients with dementia and caregivers. An interdisciplinary research team used thematic content analysis to identify themes.ResultsParticipants included 6 patients and 15 caregivers recruited from the community and health care settings (n = 21; 17/21 female; n = 13 White (61%); n = 4 Black or African American (19%); n = 4 Latino/a (19%); n = 2 Asian; n = 2 other). Five themes were identified. First, perceptions of respectful or disrespectful communication affect the relationship with clinicians and contributes to positive or negative communication experiences. Second, participants described the emotional impact of sudden or unsupported disclosures, in which they felt unprepared to receive the news or emotionally abandoned after diagnosis. Third, the absence of, or ambiguity around, a definitive dementia diagnosis contributes to patient and caregiver distress and to feeling dismissed by clinicians. Fourth, mixed responses to illness education and clinician recommendations after disclosure reveals the need for more personalized and comprehensive care planning. Fifth, careful consideration around the timing of prognostic communication and advance care planning discussions is necessary to meet the needs of patients and caregivers with different emotional readiness, illness beliefs, and information preferences.ConclusionDementia diagnostic disclosure would benefit from a structured yet tailored communication approach that prioritizes respectful communication, emotional support, and comprehensive care planning to meet the needs of patients and caregivers.
Key findings
- First, perceptions of respectful or disrespectful communication affect the relationship with clinicians and contributes to positive or negative communication experiences.
- Second, participants described the emotional impact of sudden or unsupported disclosures, in which they felt unprepared to receive the news or emotionally abandoned after diagnosis.
- Third, the absence of, or ambiguity around, a definitive dementia diagnosis contributes to patient and caregiver distress and to feeling dismissed by clinicians.
- Fourth, mixed responses to illness education and clinician recommendations after disclosure reveals the need for more personalized and comprehensive care planning.
- Fifth, careful consideration around the timing of prognostic communication and advance care planning discussions is necessary to meet the needs of patients and caregivers with different emotional readiness, illness beliefs, and information preferences.ConclusionDementia diagnostic disclosure would benefit from a structured yet tailored communication approach that prioritizes respectful communication, emotional support, and comprehensive care planning to meet the needs of patients and caregivers.
Why it matters
This qualitative study of patients with dementia and caregivers identified themes about diagnostic disclosure communication, including the emotional impact of sudden or unsupported disclosures and distress from ambiguous diagnoses. It concerns communication experiences and does not test any treatment, cure, or prevention for Alzheimer's disease.
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Study details
- Participants21
- Evidence strengthLow
How this study scored 41/100
Published in a peer-reviewed journal. Scored zero for study design, effect reported and randomised / blinded because the record does not state it.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Journal of Geriatric Psychiatry and Neurology) |
| Journal's citation record | 1 / 4 | Journal of Geriatric Psychiatry and Neurology: journal h-index 105 (OpenAlex, 2026-10-29) |
| 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 | 2025 — within 3 year(s) of the newest study here |
| Sample size | 1 / 4 | 21 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 | 1 / 7 | Cited 2 times (OpenAlex, 2026-10-10) |
| Citations per year | 0 / 5 | 0.7 citations a year over 3 year(s) since 2025 |
| Impact for its field and year | 2 / 6 | Cited 1.3× the average for papers of its field and year (OpenAlex FWCI) |
| Cited by studies here | 0 / 6 | No other study in this library cites it |
| Still being cited | 0 / 4 | Cited 2 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 3 / 4 | Last-listed author Christine Seel Ritchie: h-index 60 (OpenAlex, whole career) |
| Institution's track record | 3 / 3 | Harvard University: institution h-index 3,235 (OpenAlex) |
| Multi-centre collaboration | 1 / 3 | OpenAlex lists 3 institution(s) in 1 country |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 41092108) |
| Free to read | 2 / 2 | Free to read |
| Total | 41 / 100 | — |
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Read the original
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Cite this study APA, Vancouver, BibTeX · download .bib or .ris
Built from the record alzhub holds for this paper, not looked up. Volume, issue and page numbers are not held in the record. The record's author list ends in “et al.”, so not every author is named. Check the citation against the original before you use it.
APA 7th
Paladino, J., Granados, H. C., Eruchalu, J. A. C., Davila, C., Gomez, L. A. R., Sideman, A. B., et al. (2025). A Qualitative Study to Characterize the Experiences of Patients and Caregivers With Dementia Diagnostic Disclosure Communication and Care Planning. Journal of Geriatric Psychiatry and Neurology. https://doi.org/10.1177/08919887251388036
Vancouver
Paladino J, Granados HC, Eruchalu JAC, Davila C, Gomez LAR, Sideman AB, et al. A Qualitative Study to Characterize the Experiences of Patients and Caregivers With Dementia Diagnostic Disclosure Communication and Care Planning. Journal of Geriatric Psychiatry and Neurology. 2025. doi:10.1177/08919887251388036. PMID: 41092108.
BibTeX
@article{paladino2025-41092108,
author = {Paladino, Joanna and Granados, Heily Chavez and Eruchalu, Jade A. Connor and Davila, Carine and Gomez, Liliana A Ramirez and Sideman, Alissa Bernstein and Dohan, Daniel Paul and Lindenberger, Elizabeth C. and others},
title = {{A Qualitative Study to Characterize the Experiences of Patients and Caregivers With Dementia Diagnostic Disclosure Communication and Care Planning}},
journal = {Journal of Geriatric Psychiatry and Neurology},
year = {2025},
doi = {10.1177/08919887251388036},
pmid = {41092108},
url = {https://doi.org/10.1177/08919887251388036}
}
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