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Navigating young-onset dementia caregiving: A qualitative study of unmet needs, support, and resilience
Sim JYS, Choong HPB, Ng SLA, Tan YZN, Wang S, Zhou W.. Research Square, 2026-07-27
Topic: Health services, long-term care and technology
Aim To explore the unmet needs, support experiences, and resilience strategies of informal caregivers of persons with young-onset dementia (YOD) in Singapore. Background YOD is defined by symptom onset before 65 years of age and presents caregiving challenges distinct from later-onset dementia. Despite these distinct challenges, evidence on the experiences and support needs of young-onset dementia caregivers in Singapore remains limited. Design: A descriptive qualitative study. Methods Semi-structured interviews were conducted with 11 informal caregivers of persons with YOD recruited through a neurocognitive service in Singapore between October and December 2024. Data were analysed using reflexive thematic analysis. Results Caregivers described YOD caregiving as emotionally and physically demanding, socially isolating, and financially disruptive. Their experiences were shaped by limited access to age-appropriate services, poor visibility of resources, and stigma surrounding dementia in younger persons. While caregivers drew on resilience strategies including self-care, meaning-making, humour, faith, and support from family, peers, and community networks, these efforts were insufficient. Overall, the findings highlight a mismatch between the complex realities of YOD caregiving and the services currently available to support caregivers. Conclusion Although caregivers demonstrated resilience and adaptive coping, YOD caregiving in Singapore remained constrained by limited access to visible, tailored, and age-appropriate support. More coordinated support is needed to address caregivers’ life-stage, psychosocial, and practical needs. Impact: This study extends understanding of YOD caregiving in an underexamined Asian context and highlights the need for healthcare and community services that better address caregivers’ needs. The findings can inform the development of more responsive models of caregiver support and future intervention research. Patient of Public Contribution: This study did not include patient or public involvement in its design, conduct, or reporting.
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APA 7th
Sim, J. Y. S., Choong, H. P. B., Ng, S. L. A., Tan, Y. Z. N., Wang, S., & Zhou, W. (2026). Navigating young-onset dementia caregiving: A qualitative study of unmet needs, support, and resilience. Research Square. https://doi.org/10.21203/rs.3.rs-10249782/v1
Vancouver
Sim JYS, Choong HPB, Ng SLA, Tan YZN, Wang S, Zhou W. Navigating young-onset dementia caregiving: A qualitative study of unmet needs, support, and resilience. Research Square. 2026. doi:10.21203/rs.3.rs-10249782/v1.
BibTeX
@article{sim2026-0bed91a8,
author = {Sim, J. Y. S. and Choong, H. P. B. and Ng, S. L. A. and Tan, Y. Z. N. and Wang, S. and Zhou, W.},
title = {{Navigating young-onset dementia caregiving: A qualitative study of unmet needs, support, and resilience}},
journal = {Research Square},
year = {2026},
doi = {10.21203/rs.3.rs-10249782/v1},
url = {https://doi.org/10.21203/rs.3.rs-10249782/v1}
}
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Key findings
- Results Caregivers described YOD caregiving as emotionally and physically demanding, socially isolating, and financially disruptive.
- Overall, the findings highlight a mismatch between the complex realities of YOD caregiving and the services currently available to support caregivers.
- Conclusion Although caregivers demonstrated resilience and adaptive coping, YOD caregiving in Singapore remained constrained by limited access to visible, tailored, and age-appropriate support.
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Study details
- Evidence strengthLow
How this study scored 16/100
Preprint — not yet peer-reviewed. It scored 21 on the same rubric, but non-peer-reviewed sources are capped at 16, so it shows as 16. Scored zero for study design, sample size, effect reported, studied in people and randomized / blinded because the record does not state it. We have no data on 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 and multicenter collaboration, so those were left out: it earned 13 of the 62 points we could judge it on, which is 21 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 2 / 10 | Tier 4 — not a peer-reviewed journal (Research Square) |
| Journal's citation record | 0 / 4 | Not a journal article, so the journal's record does not count |
| 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 | 4 / 10 | Preprint — not yet peer-reviewed. Hosted on a preprint server. |
| How recent | 5 / 5 | 2026 — within 1 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) |
| Randomized / blinded | 0 / 2 | No randomization 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 |
| Multicenter collaboration | — / 3 | Institutions not listed — left out of this score |
| Indexed in PubMed | 1 / 2 | Not in PubMed, but has a DOI |
| Free to read | 0 / 2 | Behind a paywall — scores zero |
| Points | 13 / 62 | Scored on 12 of 20 parts. We have no data for the rest, so they are left out: 13 of the 62 points we could judge it on is 21 out of 100. |
| Total | 21 / 100 | Capped to 16 because this is not a peer-reviewed article. |
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