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Caring for People With Dementia: Mapping the Experience and Journey From Diagnosis
Ruth Brookman, Ruby Lipson‐Smith, Olivia R. Maurice, Nina McIlwain, Lukas Hofstaetter, Michelle L DiGiacomo, Danielle Ní Chróinín, Madeleine Cannings et al.. The Gerontologist, 2025-02-13
Topic: Risk, prevention and care in population studies
Data indicated that participants' needs fluctuated, with 3 key time points of heightened need: dementia diagnosis, in-home care, and transition into residential care. Thematic analysis identified 3 corresponding themes of carer need and risk: "psychological support/distress," "social connection/social isolation," and "knowledge/disempowerment." DISCUSSION AND Findings suggest a critical role of time in dementia care journeys, impacting the support that care partners need from health care and aged care systems. The potentially foreseeable, time-based nature of unmet needs suggests that education and training of practitioners can highlight the needs of carers for knowledge, support, and connection, and the importance of prioritizing them differentially according to the stages of the carer journey.
Key findings
- Data indicated that participants' needs fluctuated, with 3 key time points of heightened need: dementia diagnosis, in-home care, and transition into residential care.
- Thematic analysis identified 3 corresponding themes of carer need and risk: "psychological support/distress," "social connection/social isolation," and "knowledge/disempowerment." DISCUSSION AND Findings suggest a critical role of time in dementia care journeys, impacting the support that care partn
- The potentially foreseeable, time-based nature of unmet needs suggests that education and training of practitioners can highlight the needs of carers for knowledge, support, and connection, and the importance of prioritizing them differentially according to the stages of the carer journey.
Why it matters
This longitudinal study found that carers' needs fluctuated with three key time points of heightened need: dementia diagnosis, in-home care, and transition into residential care, with corresponding themes of psychological support/distress, social connection/social isolation, and knowledge/disempowerment. It suggests that support should be prioritized differently according to the stages of the carer journey, but does not test any treatment, cure or prevention for Alzheimer's disease.
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Study details
- Study designlongitudinal study
- Evidence strengthModerate
How this study scored 50/100
Published in a peer-reviewed journal, and it is a longitudinal study following the same people over time. Scored zero for sample size, effect reported, studied in people and randomised / blinded because the record does not state it.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (The Gerontologist) |
| Journal's citation record | 2 / 4 | The Gerontologist: journal h-index 238 (OpenAlex, 2026-10-29) |
| Study design | 7 / 12 | A longitudinal study following the same people over time |
| Strength of evidence | 3 / 5 | Rated “moderate” 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 | 0 / 4 | Participant count not stated — scores zero (not stated in the record — scored 0) |
| Effect reported | 0 / 3 | No effect size reported — scores zero (not stated in the record — scored 0) |
| Studied in people | 0 / 3 | Not stated whether this was studied in people — scores zero (not stated in the record — scored 0) |
| Randomised / blinded | 0 / 2 | No randomisation or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | 2 / 7 | Cited 13 times (OpenAlex, 2026-10-10) |
| Citations per year | 2 / 5 | 4.3 citations a year over 3 year(s) since 2025 |
| Impact for its field and year | 4 / 6 | Cited 8.3× 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 | 1 / 4 | Cited 13 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 2 / 4 | Last-listed author Celia B. Harris: h-index 26 (OpenAlex, whole career) |
| Institution's track record | 0 / 3 | University of Technology Sydney: institution h-index 576 (OpenAlex) |
| Multi-centre collaboration | 2 / 3 | OpenAlex lists 4 institution(s) in 1 country |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 39945461) |
| Free to read | 2 / 2 | Free to read |
| Total | 50 / 100 | — |
What each of these 20 components measures, and what this score is not →
Read the original
Full text: free to read — OpenAlex lists this copy as free to read: the link above (checked 6 Feb 1020).
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
Brookman, R., Lipson‐Smith, R., Maurice, O. R., McIlwain, N., Hofstaetter, L., DiGiacomo, M. L., et al. (2025). Caring for People With Dementia: Mapping the Experience and Journey From Diagnosis. The Gerontologist. https://doi.org/10.1093/geront/gnaf053
Vancouver
Brookman R, Lipson‐Smith R, Maurice OR, McIlwain N, Hofstaetter L, DiGiacomo ML, et al. Caring for People With Dementia: Mapping the Experience and Journey From Diagnosis. The Gerontologist. 2025. doi:10.1093/geront/gnaf053. PMID: 39945461.
BibTeX
@article{brookman2025-39945461,
author = {Brookman, Ruth and Lipson‐Smith, Ruby and Maurice, Olivia R. and McIlwain, Nina and Hofstaetter, Lukas and DiGiacomo, Michelle L and Chróinín, Danielle Ní and Cannings, Madeleine and others},
title = {{Caring for People With Dementia: Mapping the Experience and Journey From Diagnosis}},
journal = {The Gerontologist},
year = {2025},
doi = {10.1093/geront/gnaf053},
pmid = {39945461},
url = {https://doi.org/10.1093/geront/gnaf053}
}
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