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Persistent barriers and facilitators to seeking help for a dementia diagnosis: a systematic review of 30 years of the perspectives of carers and people with dementia

Published online by Cambridge University Press:  06 February 2020

Michelle Parker Open the ORCID record for Michelle Parker [Opens in a new window] ,
Sally Barlow ,
Juanita Hoe  and
Leanne Aitken
Michelle Parker*
Affiliation:
Division of Nursing, City, University of London, London, UK
Sally Barlow
Affiliation:
Division of Nursing, City, University of London, London, UK
Juanita Hoe
Affiliation:
Division of Nursing, City, University of London, London, UK
Leanne Aitken
Affiliation:
School of Health Sciences, City, University of London, London, UK School of Nursing & Midwifery, Griffith University, Queensland, Australia
*
Correspondence should be addressed to: Michelle Parker, Lecturer in Nursing, Division of Nursing, City, University of London, Northampton Square, London, EC1V 0HB, UK. Phone: +020 70405514. Email: [email protected].
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Abstract

Objective:

To identify barriers and facilitators to help seeking for a dementia diagnosis from the perspective of carers and people with dementia.

Design:

A systematic review of the literature was conducted according to the PRISMA guidelines (PROSPERO protocol registration CRD42018092524). Nine electronic databases were searched for qualitative, quantitative, and mixed methods primary research studies. Two independent reviewers screened titles and abstracts, full texts of eligible studies, and conducted quality appraisal of included articles. A convergent qualitative synthesis approach was used.

Results:

From 7496 articles, 35 papers representing 32 studies from 1986 to 2017 were included. Studies originated from 13 countries across 4 continents. Barriers and facilitators were reported predominantly by carers. A small number of studies included people with dementia. Barriers included denial, stigma and fear, lack of knowledge, normalization of symptoms, preserving autonomy, lack of perceived need, unaware of changes, lack of informal network support, carer difficulties, and problems accessing help. Facilitators included recognition of symptoms as a problem, prior knowledge and contacts, and support from informal network.

Conclusions:

Studies from a 30-year period demonstrated that barriers to help seeking persist globally, despite increasing numbers of national dementia policies. Barriers and facilitators rarely existed independently demonstrating the complexity of help seeking for a diagnosis of dementia. Multiple barriers compounded the decision-making process and more than one facilitator was often required to overcome them. Multi-faceted interventions to reduce barriers are needed, one approach would be a focus on the development of dementia friendly communities to reduce stigma and empower people with dementia and carers.

Keywords

memory problemsdelayhelp seeking
Type
Review Article
Information
International Psychogeriatrics , Volume 32 , Issue 5: Issue Theme: Challenges and Facilitators for Diagnosis and Treatment of Dementia , May 2020 , pp. 611 - 634
Copyright
© International Psychogeriatric Association 2020

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