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37/100

✓ Peer-reviewed alzhub usefulness score 37 out of 100. Digital health tools

Topic: Risk, prevention and care in population studies

Informed consent is a critical ethical requirement in research, ensuring the protection of participants' rights and promoting their wellbeing and autonomy. In dementia research, this process becomes particularly complex due to cognitive impairments and fluctuating capacity. While substantial work has been done to address these challenges, much of the literature on informed consent in dementia research has been shaped by the perspectives of researchers and healthcare professionals, with less focus on those with lived experience. This paper provides an overview of the perspectives of people with dementia and their carers resulting from Public Involvement activities organized by Alzheimer Europe. It builds on Alzheimer Europe's previous work with the European Working Group of People with Dementia and draws on discussions held during a face-to-face meeting about Participant Informed Consent forms and processes used in two specific European projects. We highlight views and key concerns raised by people with lived experience regarding the informed consent process, including barriers and facilitators. In addition to ensuring understandability, the discussions emphasized the importance of promoting respect and autonomy, ensuring that the values and interests of people with lived experience remain central throughout the research process. This paper contributes to the ongoing dialogue on improving informed consent practices in dementia research, highlighting the need for continuous involvement and the inclusion of people with lived experience in shaping consent practices to address both old and emerging challenges (i.e., new types of research such as artificial intelligence and data sharing/re-use) in dementia research.

Cite this study APA, Vancouver, BibTeX · download .bib or .ris

APA 7th

Diaz, A., Birck, C., Bradshaw, A. C., Georges, J., Lamirel, D., Moradi-Bachiller, S., et al. (2025). Informed consent in dementia research: how Public Involvement can contribute to addressing “old” and “new” challenges. Frontiers in Dementia. https://doi.org/10.3389/frdem.2025.1536762

Vancouver

Diaz A, Birck C, Bradshaw AC, Georges J, Lamirel D, Moradi-Bachiller S, et al. Informed consent in dementia research: how Public Involvement can contribute to addressing “old” and “new” challenges. Frontiers in Dementia. 2025. doi:10.3389/frdem.2025.1536762. PMID: 39967729.

BibTeX

@article{diaz2025-39967729,
  author  = {Diaz, Ana and Birck, Cindy and Bradshaw, Angela C. and Georges, Jean and Lamirel, Daphne and Moradi-Bachiller, Soraya and Gove, Dianne},
  title   = {{Informed consent in dementia research: how Public Involvement can contribute to addressing “old” and “new” challenges}},
  journal = {Frontiers in Dementia},
  year    = {2025},
  doi     = {10.3389/frdem.2025.1536762},
  pmid    = {39967729},
  url     = {https://doi.org/10.3389/frdem.2025.1536762}
}

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 names 7 authors; APA and Vancouver show the first six, BibTeX and the downloads carry all of them. Check the citation against the original before you use it.

Key findings

This paper provides an overview of the perspectives of people with dementia and their carers resulting from Public Involvement activities organized by Alzheimer Europe.
It builds on Alzheimer Europe's previous work with the European Working Group of People with Dementia and draws on discussions held during a face-to-face meeting about Participant Informed Consent forms and processes used in two specific European projects.
We highlight views and key concerns raised by people with lived experience regarding the informed consent process, including barriers and facilitators.
In addition to ensuring understandability, the discussions emphasized the importance of promoting respect and autonomy, ensuring that the values and interests of people with lived experience remain central throughout the research process.
This paper contributes to the ongoing dialogue on improving informed consent practices in dementia research, highlighting the need for continuous involvement and the inclusion of people with lived experience in shaping consent practices to address both old and emerging challenges (i.e., new types of research such as artificial intelligence and data sharing/re-use) in dementia research.

Why it matters

This paper reports the perspectives of people with dementia and their carers on informed consent in dementia research, gathered through Public Involvement activities. It concerns research ethics and process, not the treatment, cure or prevention of Alzheimer's disease.

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Study details

Evidence strengthLow

How this study scored 37/100

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.

Component	Points	Why
Journal tier	7 / 10	Tier 3 — peer-reviewed journal (Frontiers in Dementia)
Journal's citation record	0 / 4	Frontiers in Dementia: journal h-index 13 (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	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 14 times (OpenAlex, 2026-10-10)
Citations per year	2 / 5	4.7 citations a year over 3 year(s) since 2025
Impact for its field and year	4 / 6	Cited 11.9× 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 14 times in 2024–2026 (2026 still in progress; OpenAlex)
Senior author's track record	2 / 4	Last-listed author Dianne Gove: h-index 27 (OpenAlex, whole career)
Institution's track record	0 / 3	Alzheimer Europe: institution h-index 52 (OpenAlex)
Multi-centre collaboration	0 / 3	OpenAlex lists 1 institution(s) in 1 country — scores zero (affiliation lists can be incomplete)
Indexed in PubMed	2 / 2	Indexed in PubMed (PMID 39967729)
Free to read	2 / 2	Free to read
Total	37 / 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).

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