Home › Research › Caregiving
Navigating Dementia Services: An International Review of Informal Caregiver Perspectives
Lewis McQueen, Philip Hodgson, Scott Cole, Divine Charura. Dementia (London, England), 2026-03-15
Topic: Health services, long-term care and technology
Dementia is a growing global concern, with informal caregivers, typically unpaid family members or friends, providing essential support to those living with the condition. Despite their central role, these caregivers often face fragmented services, poor communication, and limited guidance. This global review synthesizes findings from 30 qualitative studies to explore informal caregivers' experiences of navigating dementia services. Studies were identified through a comprehensive search of MEDLINE, PsycINFO, and CINAHL and analysed using Thomas and Harden's thematic synthesis method. Only English-language studies were included, and each was critically appraised for quality and relevance. Four central themes were conceptualised in this synthesis. First, caregivers frequently encountered confusing, disjointed systems, exacerbated by inadequate communication and a lack of relational continuity. Second, some services were experienced by carers as harmful, causing emotional strain due to inflexible, under-resourced, or impersonal care. Third, uncertainty about the future was a persistent source of anxiety, often worsened by a lack of professional support in care planning. Finally, cultural and linguistic barriers hindered access to services, pointing to a widespread need for more culturally responsive care. This review underscores significant shortcomings in current dementia service delivery, particularly in coordination, communication, and inclusivity. Despite policy commitments to caregiver support, implementation remains patchy and inconsistent. In some cases, services not only failed to assist but also contributed to caregiver burden. There is an urgent need for system-level changes that place informal caregivers at the centre of dementia care, ensuring services are person-centred, culturally sensitive, and better integrated. Supporting caregivers more effectively is critical to improve outcomes for both those living with dementia and those who care for them.
Key findings
- This review underscores significant shortcomings in current dementia service delivery, particularly in coordination, communication, and inclusivity.
New to this subject? Start with our plain-English guide: Caregiving →
Study details
- Evidence strengthLow
How this study scored 45/100
Published in a peer-reviewed journal. Scored zero for study design, sample size, effect reported, studied in people 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 25 of the 56 points we could judge it on, which is 45 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Dementia (London, England)) |
| 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 | 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) |
| 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 41833548) |
| Free to read | — / 2 | Access not recorded — left out of this score |
| Points | 25 / 56 | Scored on 10 of 20 parts. We have no data for the rest, so they are left out: 25 of the 56 points we could judge it on is 45 out of 100. |
| Total | 45 / 100 | — |
What each of these 20 components measures, and what this score is not →
Read the original
Free copy unknown: no free-copy check has an answer for this record yet. That does not mean it is paywalled.
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. Check the citation against the original before you use it.
APA 7th
McQueen, L., Hodgson, P., Cole, S., & Charura, D. (2026). Navigating Dementia Services: An International Review of Informal Caregiver Perspectives. Dementia (London, England). https://doi.org/10.1177/14713012261427142
Vancouver
McQueen L, Hodgson P, Cole S, Charura D. Navigating Dementia Services: An International Review of Informal Caregiver Perspectives. Dementia (London, England). 2026. doi:10.1177/14713012261427142. PMID: 41833548.
BibTeX
@article{mcqueen2026-41833548,
author = {McQueen, Lewis and Hodgson, Philip and Cole, Scott and Charura, Divine},
title = {{Navigating Dementia Services: An International Review of Informal Caregiver Perspectives}},
journal = {Dementia (London, England)},
year = {2026},
doi = {10.1177/14713012261427142},
pmid = {41833548},
url = {https://doi.org/10.1177/14713012261427142}
}
Related studies in Caregiving
Also tagged “caregiver”
195 studies in the library carry the topic tag “caregiver”; these are this study's neighbours in a fixed, alphabetical-by-hash tour of them, not the closest in content. All 195 tagged studies.