Use of routine and cohort data globally in exploring dementia care pathways and inequalities: A systematic review
Open accessAbstract
Abstract Objectives The aim of this systematic review was to evaluate studies which employed routine and cohort data sets to understand inequalities in dementia care pathways. Methods We identified 27 research papers using routine data sets to investigate inequalities in dementia care pathways through electronic and grey literature searches. Papers were independently assessed by two reviewers for inclusion based on defined criteria. Included papers were quality rated using the National Institutes of Health Quality Assessment Tool for Observational Cohort and Cross‐Sectional Studies. Data was extracted based on stage(s) in dementia care pathway and socio‐economic factors investigated. Results Inequalities were noted across dementia care pathways. Socio‐economic and protected characteristics were shown to impact the likelihood of people with dementia moving into institutional nursing care, the quality and consistency of their treatment, need for emergency and urgent healthcare, the rate of illness progression and their long‐term survival. Research was often disparate ignoring the multiple parts of the dementia care pathway, or the impact of specific factors across multiple stages. Conclusions Our study highlights issues in dementia care pathways based on socio‐economic or protected characteristics. Equitable service provision, more culturally appropriate services, improved health literacy and increased provision for both early diagnosis and care at home can help narrow the gap in dementia care inequalities. There is greater need for research investigating dementia care pathways as something greater than the sum of its parts; exploring the influence of socio‐economic factors from a person's entrance into the system and throughout.
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Inequalities in dementia and dementia outcomes have been illustrated across spatial contexts-including where somebody lives, the levels of deprivation in the area they live, and where their GP is based.
“Inequalities in dementia and dementia outcomes have been illustrated across spatial contexts—including where somebody lives, the levels of deprivation in the area they live, and where their GP is based [17,32,33].”
From The Impact of demographic, socio-economic and geographic factors on mortality risk among people living with dementia in England (2002–2016) (2021) · cites this paper as [17]
Though electronic health records have evidenced mortality risk among people living with dementia, there is limited use in evidencing social, demographic and geographic inequalities.
“Though EHRs have evidenced mortality risk among PLWD, there is limited use in evidencing social, demographic and geographic inequalities [17].”
From The Impact of demographic, socio-economic and geographic factors on mortality risk among people living with dementia in England (2002–2016) (2021) · cites this paper as [17]
Effective treatment and management of dementia and comorbidities has been illustrated to impact survival rates among people living with dementia.
“Effective treatment and management of dementia and comorbidities has been illustrated to impact survival rates among PLWD [16,17].”
From The Impact of demographic, socio-economic and geographic factors on mortality risk among people living with dementia in England (2002–2016) (2021) · cites this paper as [17]
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Giebel, C., Robertson, S., Beaulen, A., Zwakhalen, S., Allen, D., & Verbeek, H. (2021) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph182212233 · Cited by 54 · see citing works
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- Authors
- Watson, J., Giebel, C., Green, M., Darlington‐Pollock, F., & Akpan, A.
- Affiliations
- University of Liverpool (GB)
- Liverpool University Hospital NHS FT Liverpool UK
- Corresponding author
- Giebel, Clarissa
- Venue
- International Journal of Geriatric Psychiatry
- Publisher
- Wiley
- Published
- 2020-09-16
- Volume
- 36
- Issue
- 2
- Pages
- 252-270
- ISSN
- 0885-6230 (ISSN-L)
- 1099-1166
- OpenAlex
- W3083068455
- Cited by
- 39
- References
- 73
- Citations by year
- 2026: 1 · 2025: 6 · 2024: 18 · 2023: 8 · 2022: 1 · 2021: 5
- FWCI
- 0.58
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- International Journal of Geriatric Psychiatry (publishedVersion, cc-by)
- Funders
- National Institute for Health Research (NIHR ARC NWC)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
- Social Sciences › Health › Health disparities and outcomes
- Keywords
- dementia care pathways, health disparities, routine data, cohort data, socioeconomic factors, protected characteristics, disease progression, long-term survival, culturally appropriate services, health literacy, early diagnosis, home care
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