Hostname: page-component-669899f699-tzmfd Total loading time: 0 Render date: 2025-05-02T10:51:46.896Z Has data issue: false hasContentIssue false
  • English
  • Français

A systematic review on inequalities in accessing and using community-based social care in dementia

Published online by Cambridge University Press:  12 May 2023

Clarissa Giebel Open the ORCID record for Clarissa Giebel [Opens in a new window] ,
Kerry Hanna Open the ORCID record for Kerry Hanna [Opens in a new window] ,
James Watson Open the ORCID record for James Watson [Opens in a new window] ,
Thomas Faulkner ,
Lena O’Connell ,
Sandra Smith  and
Warren James Donnellan
Clarissa Giebel*
Affiliation:
Department of Primary Care & Mental Health, University of Liverpool, Liverpool, UK NIHR Applied Research Collaboration North West Coast, Liverpool, UK
Kerry Hanna
Affiliation:
School of Health Sciences, University of Liverpool, UK
James Watson
Affiliation:
Department of Primary Care & Mental Health, University of Liverpool, Liverpool, UK
Thomas Faulkner
Affiliation:
Department of Primary Care & Mental Health, University of Liverpool, Liverpool, UK NIHR Applied Research Collaboration North West Coast, Liverpool, UK Mersey Care NHS Trust, UK
Lena O’Connell
Affiliation:
Department of Primary Care & Mental Health, University of Liverpool, Liverpool, UK
Sandra Smith
Affiliation:
NIHR Applied Research Collaboration North West Coast, Liverpool, UK
Warren James Donnellan
Affiliation:
Department of Psychology, University of Liverpool, Liverpool, UK
*
Correspondence should be addressed to: Clarissa Giebel, Department of Primary Care & Mental Health, University of Liverpool, Waterhouse Building Block A, Brownlow Street, Liverpool, UK. Email: [email protected].
Get access

Abstract

Objectives:

To evaluate and synthesize the evidence base on barriers and facilitators to accessing and using community-based social care in dementia.

Design:

Mixed-methods systematic review.

Setting:

Community-based social care (such as day care, respite care, paid home care, and peer support groups).

Participants:

People living with dementia and unpaid carers.

Measurements:

Seven databases were searched in March 2022, including English and German evidence published from 2000 focusing on inequalities in community-based social care for dementia across the globe. Titles and abstracts were screened by two reviewers, with all full texts screened by two reviewers also. Study quality was assessed using QualSyst.

Results:

From 3,904 screened records, 39 papers were included. The majority of studies were qualitative, with 23 countries represented. Barriers and facilitators could be categorized into the following five categories/themes: situational, psychological, interpersonal, structural, and cultural. Barriers were notably more prominent than facilitators and were multifaceted, with many factors hindering or facilitating access to social care linked together.

Conclusions:

People with dementia and carers experience significant barriers in accessing care in the community, and a varied approach on multiple levels is required to address systemic and individual-level barriers to enable more equitable access to care for all.

Keywords

inequalitiessocial caredementia
Type
Review Article
Information
International Psychogeriatrics , Volume 36 , Special Issue 7: Issue Theme: Health inequities in health and social care in geriatric psychiatry , July 2024 , pp. 540 - 563
Copyright
© The Author(s), 2023. Published by Cambridge University Press on behalf of International Psychogeriatric Association

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Article purchase

Temporarily unavailable

References

Albanese, E. et al. (2011). Equity in the delivery of community healthcare to older people: findings from 10/66 Dementia Research Group cross-sectional surveys in Latin America, China, India and Nigeria. BMC Health Services Research, 11, 153–153.CrossRefGoogle Scholar
Alzheimer’s Disease International (ADI). (2022). World Alzheimer Report 2022 - Life after diagnosis: Navigating treatment, care and support. London: ADI.Google Scholar
Armstrong, M. et al. (2022). Trust and inclusion during the Covid-19 pandemic: perspectives from Black and South Asian people living with dementia and their carers in the UK. International journal of geriatric psychiatry, 37.CrossRefGoogle ScholarPubMed
Baghirathan, S., Cheston, R., Hui, R., Chacon, A., Shears, P. and Currie, K. (2020). A grounded theory analysis of the experiences of carers for people living with dementia from three BAME communities: balancing the need for support against fears of being diminished. Dementia (London, England), 19, 1672–1691. https://doi.org/10.1177/1471301218804714.Google ScholarPubMed
Bass, D. M. et al. (2013). Caregiver outcomes of partners in dementia care: effect of a care coordination program for veterans with dementia and their family members and friends. Journal of the American Geriatrics Society, 61, 1377–1386.CrossRefGoogle ScholarPubMed
Bodryzlova, Y. et al. (2022). Social class and the risk of dementia: a systematic review and meta-analysis of the prospective longitudinal studies. Scandinavian Journal of Public Health, 14034948221110019. https://doi.org/10.1177/2F14034948221110019.Google ScholarPubMed
Bruce, D. G. and Paterson, A. (2000). Barriers to community support for the dementia carer: a qualitative study. International Journal of Geriatric Psychiatry, 15, 451–457.3.0.CO;2-K>CrossRefGoogle ScholarPubMed
Casado, B. L., Lee, S. E., Hong, M. and Hong, S. (2015). The experience of family caregivers of older Korean Americans with dementia symptoms. Clinical Gerontologist: The Journal of Aging and Mental Health, 38, 32–48.CrossRefGoogle Scholar
Cascioli, T. R., Al-Madfai, H., Oborne, P. and Phelps, S. (2008). An evaluation of the needs and service usage of family carers of people with dementia. Quality in Ageing, 9, 18–27.CrossRefGoogle Scholar
Choudrie, J., Pheeraphuttranghkoon, S. and Davari, S. (2020). The digital divide and older adult population adoption, use and diffusion of mobile phones: a quantitative study. Information Systems Frontiers, 22, 673–695.CrossRefGoogle Scholar
Clarke, C. L. and Bailey, C. (2016). Narrative citizenship, resilience and inclusion with dementia: on the inside or on the outside of physical and social places. Dementia (London, England), 15, 434–452.Google ScholarPubMed
Contreras, M., Mioshi, E. and Kishita, N. (2022). What are the educational and support needs of family carers looking after someone in the early stages of Alzheimer’s disease? A qualitative retrospective approach. Health & Social Care in the Community, 30, 1726–1734.CrossRefGoogle ScholarPubMed
Cooper, C., Tandy, A. R., Balamurali, T. B. S. and Livingston, G. (2010). A systematic review and meta-analysis of ethnic differences in use of dementia treatment, care, and research. American Journal of Geriatric Psychiatry, 18, 193–203.CrossRefGoogle ScholarPubMed
Cotton, Q. D. et al. (2021). Dementia caregivers’ experiences engaging supportive services while residing in under-resourced areas. Journal of Alzheimer’s Disease, 84, 169–177.CrossRefGoogle ScholarPubMed
Czapka, E. A. and Sagbakken, M. (2020). It is always me against the Norwegian system: barriers and facilitators in accessing and using dementia care by minority ethnic groups in Norway: a qualitative study. BMC Health Services Research, 20, 954–954.CrossRefGoogle ScholarPubMed
Dwyer-Lindgren, L. et al. (2017). Inequalities in life expectancy among US counties, 1980 to 2014 – temporal trends and key drivers. JAMA Internal Medicine, 177, 1003–1011.CrossRefGoogle ScholarPubMed
Ferguson-Coleman, E., Johnston, A., Young, A., Brown, F., de Sainte Croix, R. and Redfern, P. (2020). How do we know what we don’t know? Exploring Deaf people’s experiences of supporting their Deaf family member living with dementia. Dementia (London, England), 19, 1381–1396. https://doi.org/10.1177/1471301218798993.Google ScholarPubMed
Gibson, G., Dickinson, C., Brittain, K. and Robinson, L. (2015). The everyday use of assistive technology by people with dementia and their family carers: a qualitative study. BMC Geriatrics, 15, 89–89. https://doi.org/10.1186/s12877-015-0091-3.CrossRefGoogle ScholarPubMed
Giebel, C. et al. (2021a). Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: a qualitative study. Aging & Mental Health, 25, 1281–1288.CrossRefGoogle ScholarPubMed
Giebel, C. et al. (2021b). A UK survey of COVID-19 related social support service closures and their effects on older people, people with dementia, and carers. IJGP, 36, 393–402.Google ScholarPubMed
Giebel, C. et al. (2021d). Health inequities in the care pathways for people living with young- and late-onset dementia: from pre-cOVID-19 to early pandemic. International Journal of Environmental Research and Public Health, 18, 686.CrossRefGoogle Scholar
Giebel, C. et al. (2022a). The early impacts of COVID-19 on people living with dementia: part I of a mixed-methods systematic review. Aging & Mental Health, 27, 533–546. https://doi.org/10.1080/13607863.2022.2084509.CrossRefGoogle ScholarPubMed
Giebel, C. et al. (2022b). The early impacts of COVID-19 on unpaid carers of people living with dementia: part II of a mixed-methods systematic review. Aging & Mental Health, 27, 547–562. https://doi.org/10.1080/13607863.2022.2084510.CrossRefGoogle ScholarPubMed
Giebel, C. et al. (2022c). Guilt, tears and burnout – impact of UK care home restrictions on the mental well-being of staff, families and residents. Journal of Advanced Nursing, 78, 2191–2202.CrossRefGoogle ScholarPubMed
Giebel, C., Robertson, S., Beaulen, A., Zwakhalen, S., Allen, D. and Verbeek, H. (2021c). “Nobody seems to know where to even turn to”: barriers in accessing and utilising dementia care services in England and The Netherlands. International Journal of Environmental Research and Public Health, 18, 12233.CrossRefGoogle ScholarPubMed
Gove, D. et al. (2021). The challenges of achieving timely diagnosis and culturally appropriate care of people with dementia from minority ethnic groups in Europe. IJGP, 36, 1823–1828.Google ScholarPubMed
Herat-Gunaratne, R. et al. (2020). “In the Bengali vocabulary, there is no such word as care home”: caring experiences of UK Bangladeshi and Indian family carers of people living with dementia at home. The Gerontologist, 60, 331–339.Google ScholarPubMed
Hindley, G.et al. (2017). The role of traditional and faith healers in the treatment of dementia in Tanzania and the potential for collaboration with allopathic healthcare services. Age and Ageing, 46, 130–137.Google ScholarPubMed
Holm, S. and Ziguras, S. (2003). The host-homes program: an innovative model of respite for carers of people with dementia. Australasian Journal on Ageing, 22, 141–145.CrossRefGoogle Scholar
Judkins, W. and Roberto, K. A. (2001). Abandonment fears of persons with Alzheimer’s disease attending adult day care. American Journal of Alzheimer’s Disease and Other Dementias, 16, 247–250.CrossRefGoogle ScholarPubMed
Jutlla, K. (2015). The impact of migration experiences and migration identities on the experiences of services and caring for a family member with dementia for Sikhs living in Wolverhampton. UK Ageing and Society, 35, 1032–1054.CrossRefGoogle Scholar
Ketchum, F. B. et al. (2022). Pathways of care: a qualitative study of barriers and facilitators to engaging dementia care among underserved and minority populations in the US and Germany. Aging & Mental Health, 27, 389–398. https://doi.org/10.1080/13607863.2022.2033695.CrossRefGoogle Scholar
Kmet, L. M., Lee, R. C. and Cook, L. S. (2004). Standard quality assessment criteria for evaluating primary research papers from a variety of fields. Edmonton: Alberta Heritage Foundation for Medical Research (AHFMR). AHFMR - HTA Initiative #13.Google Scholar
Kyriopoulos, I.-I. et al. (2014). Barriers in access to healthcare services for chronic patients in times of austerity: an empirical approach in Greece. International Journal for Equity in Health, 13, 54–54.CrossRefGoogle ScholarPubMed
Leong, J., Madjar, I. and Fiveash, B. (2001). Needs of family carers of elderly people with dementia living in the community. Australasian Journal on Ageing, 20, 133–138.CrossRefGoogle Scholar
Macleod, A., Tatangelo, G., McCabe, M. and You, E. (2017). There isn’t an easy way of finding the help that’s available. Barriers and facilitators of service use among dementia family caregivers: a qualitative study. International Psychogeriatrics, 29, 765–776.CrossRefGoogle ScholarPubMed
Marsack-Topolewski, C. N. and Brady, A. M. (2020). Experiences of family caregivers of individuals with ID and dementia. Journal for ReAttach Therapy and Developmental Diversities, 3, 54–64.CrossRefGoogle Scholar
McHugh, J. E., Wherton, J. P., Prendergast, D. K. and Lawlor, B. A. (2012). Teleconferencing as a source of social support for older spousal caregivers: initial explorations and recommendations for future research. American Journal of Alzheimer’s Disease and Other Dementias, 27, 381–387.CrossRefGoogle ScholarPubMed
Millenaar, J. K., Bakker, C., Koopmans, R. T. C. M., Verhey, F. R. J., Kurz, A. and de Vugt, M. E. (2016). The care needs and experiences with the use of services of people with young-onset dementia and their caregivers: a systematic review. IJGP, 31, 1261–1276.Google ScholarPubMed
Morgan, D. G. et al. (2009). Improving access to dementia care: Development and evaluation of a rural and remote memory clinic. Aging & Mental health, 13, 17–30.CrossRefGoogle ScholarPubMed
Nielsen, T. R., Nielsen, D. S. and Waldemar, G. (2021). Barriers in access to dementia care in minority ethnic groups in Denmark: a qualitative study. Aging & Mental Health, 25, 1424–1432.CrossRefGoogle ScholarPubMed
Nowaskie, D. et al. (2020). Care coordinator assistants: job satisfaction and the importance of teamwork in delivering person-centered dementia care. Dementia, 19, 1560–1572.CrossRefGoogle ScholarPubMed
Nyman, S. R., Innes, A. and Heward, M. (2017). Social care and support needs of community-dwelling people with dementia and concurrent visual impairment. Aging & Mental Health, 21, 961–967.CrossRefGoogle ScholarPubMed
Phillipson, L. and Jones, S. C. (2012). Use of day centers for respite by help-seeking caregivers of individuals with dementia. Journal of Gerontological Nursing, 38, 24–34.CrossRefGoogle ScholarPubMed
Rainero, I. et al. (2020). The impact of COVID-19 quarantine on patients with dementia and family caregivers: a nation-wide survey. Frontiers in Aging Neuroscience, 12, 625781.CrossRefGoogle ScholarPubMed
Read, S., Hu, B., Wittenberg, R., Brimblecombe, N., Robinson, L. and Banerjee, S. (2021). A longitudinal study of functional unmet need among people with dementia. Journal of Alzheimer’s Disease, 84, 705–716.CrossRefGoogle ScholarPubMed
Richardson, V. E. et al. (2019). At the intersection of culture: ethnically diverse dementia caregivers’ service use. Dementia (London, England), 18, 1790–1809. https://doi.org/10.1177/1471301217721304.Google ScholarPubMed
Rising, K. L., Salcedo, V. J. and Amadio, G. (2022). Living through the pandemic: the voices of persons with dementia and their caregivers. Journal of Applied Gerontology, 41, 30–35.CrossRefGoogle ScholarPubMed
Robinson, A. et al. (2012). Seeking respite: issues around the use of day respite care for the carers of people with dementia. Ageing and Society, 32, 196–218.CrossRefGoogle Scholar
Roes, R. M., van Rijn, A., Rus, E., Dacier, S. and Meiland, F. (2019). Utilisation, effect, and benefit of the individualized Meeting Centers Support Program for people with dementia and caregivers. Clinical Interventions in Aging, 14, 1527–1553.Google Scholar
Ryan, L. (2021). Accessing community dementia care services in Ireland: emotional barriers for caregivers. Health & Social Care in the Community, 29, 1980–1989. https://doi.org/10.1111/hsc.13342.CrossRefGoogle ScholarPubMed
Samsi, K., Cole, L., Orellana, K. and Manthorpe, J. (2022). Is it worth it? Carers’ views and expectations of residential respite for people living with dementia during and beyond the COVID-19 pandemic. IJGP, 37. https://doi.org/10.1002/gps.5680.Google ScholarPubMed
Statz, T. L. et al. (2022). We moved her too soon: navigating guilt among adult child and spousal caregivers of persons living with dementia following a move into residential long-term care. Couple and Family Psychology: Research and Practice, 11, 300–314.CrossRefGoogle ScholarPubMed
Stephan, A. et al. (2018). Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries. BMC Geriatrics, 18, 131–131.CrossRefGoogle Scholar
Sun, F., Mutlu, A. and Coon, D. (2014). Service barriers faced by Chinese American families with a dementia relative: perspectives from family caregivers and service professionals. Clinical Gerontologist, 37, 120–138.CrossRefGoogle Scholar
Tetley, J. (2013). Articulation, service use, managing and coping: understanding the needs of older people and carers living with dementia. International Practice Development Journal, 3, 1–17.Google Scholar
Van Manen, A. S., Aarts, S., Metzelthin, S. F., Verbeek, H., hamers, J. P. H. and Zwakhalen, S. M. G. (2021). A communication model for nursing staff working in dementia care: results of a scoping review. International Journal of Nursing Studies, 113, 103776.CrossRefGoogle ScholarPubMed
Vickrey, B. G., Strickland, T. L., Fitten, L. J., Adams, G. R., Ortiz, F. and Hays, R. D. (2007). Ethnic variations in dementia caregiving experiences: insights from focus groups. Journal of Human Behavior in the Social Environment, 15, 233–249.CrossRefGoogle Scholar
Wang, S., Yan, D., Temkin-Greener, H. and Cai, S. (2021). Nursing home admissions for persons with dementia: role of home- and community-based services. Health Services Research, 56, 1168–1178.CrossRefGoogle ScholarPubMed
Watson, J., Giebel, C., Green, M., Darlington-Pollock, F. and Akpan, A. (2021). Use of routine and cohort data globally in exploring dementia care pathways and inequalities: a systematic review. International Journal of Geriatric Psychiatry, 36, 252–270.CrossRefGoogle Scholar
Winslow, B. W. (2003). Family caregivers’ experiences with community services: a qualitative analysis. Public Health Nursing (Boston, Mass.), 20, 341–348.CrossRefGoogle ScholarPubMed
Yiu, H. C., Zang, Y. and Chau, J. P. C. (2020). Barriers and facilitators in the use of formal dementia care for dementia sufferers: a qualitative study with Chinese family caregivers in Hong Kong. Geriatric Nursing (New York), 41, 885–890.CrossRefGoogle ScholarPubMed
Zhan, L. (2004). Caring for family members with Alzheimer’s disease: perspectives from Chinese American caregivers. Journal of Gerontological Nursing, 30, 19–29.CrossRefGoogle ScholarPubMed