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

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.

Do people with dementia and carers get what they need? Barriers in social care and carers needs assessments

“…Individual or household finances can be a barrier in accessing post-diagnostic dementia care. Nationally and globally, people living with dementia and their unpaid carers are often found to struggle getting the support they need (Caprioli et al, 2023;Giebel et al, 2021bGiebel et al, , 2021aGiebel et al, , 2023a. Geographical location (rural, urban, postcode) and living situation (alone or with a carer), age, gender, ethnic background, education, health and digital literacy, as well as dementia subtype are barriers to accessing and benefiting from the right support.…”

Co‐producing a board game to learn and engage about dementia inequalities: First impacts on knowledge in the general population

“…Where people do receive a diagnosis, the journey afterwards is often also characterised by various hurdles. These can include inequalities due to dementia subtype, living location, geographical differences in service provisions (‘postcode lottery’, whereby residents in adjacent postcodes or nearby streets receive different access to care due to catchment areas), availability of an unpaid carer, financial background, education, knowledge of available services and many more 10–13 . Accessing postdiagnostic support, such as daycare, respite care, peer support groups and paid home care, can be facilitated by financial support from local government social care services in the United Kingdom and is means tested.…”

The landscape of inequalities in dementia across Europe: First insights from the INTERDEM taskforce

“…In addition to availability of services, or a lack thereof, people living with dementia and their carers may face many barriers when trying to access care and support services. These involve cultural, financial, and geographical barriers, availability of an unpaid carer, age, gender, dementia subtype, and lack of healthcare professional knowledge about dementia 12–15 . Coming from a minority ethnic background or a specific non‐White ethnic background is often linked to increased levels of stigma and lack of awareness of dementia, and difficulties in finding suitable services that cater to the cultural needs 12,16 .…”

“…Lacking the necessary finances to pay for care can also be a substantial barrier, despite means‐tested support, with additionally little to no guidance available on how to plan for or pay for future dementia care 18 . A recent systematic review explored the evidence base on inequalities in accessing and using community‐based social care for dementia, and synthesised evidence from 39 studies from 23 countries, highlighting five themes of situational (including economic factors), psychological (including carer beliefs), interpersonal (referring to relationships between people with dementia and carers, and support systems), structural (including lack of awareness of services), and cultural factors (including language barriers and stigma) 15 . The review highlighted how people living with dementia experience multiple barriers when trying to access community‐based care, and that a multi‐faceted approach to providing improved access needs to be taken.…”

“…These involve cultural, financial, and geographical barriers, availability of an unpaid carer, age, gender, dementia subtype, and lack of healthcare professional knowledge about dementia. [12][13][14][15] Coming from a minority ethnic background or a specific non-White ethnic background is often linked to increased levels of stigma and lack of awareness of dementia, and difficulties in finding suitable services that cater to the cultural needs. 12,16 Living in more rural locations is often linked to reduced suitable service availability, which can be a particular difficulty for people living with or caring for someone with a rarer subtype of dementia, such as Lewy Body, Parkinson's Disease, or semantic dementia.…”