Introduction
Across the globe, the WHO estimates around 55 million people are currently living with dementia, the majority of which are residing in lower- and middle-income countries (ADI, 2022). This number is only rising, further exacerbating dementia as a global public health problem.
Social care and social support services such as paid home carers, respite care, day care centers, and peer support groups are all vital in enabling people with dementia and their carers to live well and to have some of the caring duties removed (i.e. Roes et al., Reference Roes, van Rijn, Rus, Dacier and Meiland2019; Samsi et al., Reference Samsi, Cole, Orellana and Manthorpe2022). The value of social care and social support services for dementia has been highlighted starkly during the COVID-19 pandemic, when sudden service closures left people living with dementia (PLWD) and their carers bereft and experiencing poorer mental well-being (Giebel et al., Reference Giebel2021a, Reference Giebel2021b). This lack of care and support has been corroborated in other research across the globe (Rainero et al., Reference Rainero2020; Rising et al., Reference Rising, Salcedo and Amadio2022) and been synthesized in recent systematic reviews (i.e. Giebel et al., Reference Giebel2022a, Reference Giebel2022b). Given different funding systems and care infrastructures across different countries, especially between lower- and middle-income countries and high-income countries, social care, and support services, may vary not only in their availability, but also in their formats, across different countries. Including a broad range of community-based services is thus important.
Barriers to accessing social care and support after a diagnosis were evident prior to the pandemic, but it appears they have been amplified since. There are a number of barriers for PLWD, and their carers, in accessing and utilizing the right care at the right time – including where they live (rural remote versus urban, the region within a country, as well as their postcode within a city), their ethnic, financial, and educational background, their health literacy, dementia subtype, living situation (alone or with a carer), and many others (Armstrong et al., Reference Armstrong2022; Stephan et al., Reference Stephan2018; Watson et al., Reference Watson, Giebel, Green, Darlington-Pollock and Akpan2021). People with dementia and their carers who are residing in more disadvantaged regions, for example, often have less choice, and awareness, of existing services, which is further amplified for people with rarer types of dementia, such as young-onset dementia. For those with rarer dementia subtypes, support groups which are mostly catering for older and Alzheimer’s disease dementia attendees are not suitable due to age and symptomatology (Millenaar et al., Reference Millenaar, Bakker, Koopmans, Verhey, Kurz and de Vugt2016). Similarly, people from minority ethnic backgrounds are often less likely to access external support and are instead mostly cared for by their family, despite external support offering some respite from caring (Nielsen et al., Reference Nielsen, Nielsen and Waldemar2021). While there is a growing body of literature on these individual barriers to accessing and using social care and support for dementia, these barriers and underpinning inequalities intersect and need to be considered jointly, not separately, in order to be addressed.
To date, there appears to have been no systematic review critically analyzing and synthesizing the literature on inequalities in access to and use of post-diagnostic community-based dementia social care. A recent systematic review has focused on inequalities in accessing health care for dementia based on routine and cohort data studies (Watson et al., Reference Watson, Giebel, Green, Darlington-Pollock and Akpan2021), and one review specifically focused on one barrier – ethnicity, over a decade ago (Cooper et al., Reference Cooper, Tandy, Balamurali and Livingston2010). Instead, some systematic reviews appear to focus on risk factors of dementia based on socioeconomic backgrounds (i.e. Bodryzlova et al., Reference Bodryzlova2022). In order to address inequalities in dementia care, we first need to have a coherent overview and critical understanding of those barriers and the evidence behind them, to then develop targeted solutions and generate facilitators to enable access to dementia care in different countries and settings.
Therefore, the aim of this mixed-methods systematic review was to explore and synthesize the evidence base on the barriers and enablers faced by PLWD in accessing and using community-based social care services. This will provide clearer solutions to addressing the intersectionality of barriers to accessing care and enable policy recommendations which need to be tailored to individual countries.
Methods
The protocol of this mixed-method systematic review was prospectively registered on PROSPERO [ID: CRD42022306150].
Search strategy
JW performed searches of seven electronic databases in March 2022 (APA Psycinfo, CINAHL Plus, Medline, Web of Science, PubMed, Scopus, and Cochrane Library). Databases were searched for qualitative and quantitative studies published since 01/01/2000 using the following search term strategy:
(‘dementia’) AND (‘inequalit*’ OR ‘inequit*’ OR ‘barrier*’) AND (‘social care’ OR ‘social support’ OR ‘day care’ OR ‘respite care’ OR ‘domiciliary care’ OR ‘home care’ OR ‘support’) NOT (‘pharmacolog*’ OR ‘medicat*’ OR ‘drug’)
Results from literature searches were exported into Endnote, where duplicates were removed. Snowballing of references from electronic literature searches for additional papers were also performed to locate any further, pertinent papers.
Inclusion and exclusion criteria
This systematic review included both quantitative and qualitative studies published from 2000 until February 2022, in English or German. Studies were included if they reported on access and usage to community-based social care and social support services for PLWD and/or unpaid carers. Community-based social care and social support services included day care, respite care, paid home care, befriending services, peer support groups, social activities, and meal deliveries. Studies were excluded if they were not published in English or German, contained no peer-reviewed data (i.e. letter to the editor, commentary, editorial, and thesis); did not focus on people with dementia and/or carers; did not include evidence on inequalities in accessing and using social care; or focused on residential long-term care. This was based on what was indicated first in the title and abstract, and then in the full text, as also described under study selection. Where social care and support service data were not referred to in the abstract, the paper was not advanced for full-text screening.
Study selection
Two researchers (WD, LO) assessed the title and abstracts of retrieved records against inclusion criteria and exclude papers that failed to meet inclusion criteria in Stage 1. The selected records were read in full in Stage 2 by two researchers (KH, WD), and papers that met the inclusion criteria were included in the final review. Any discrepancies at Stage 1 or 2 were resolved in discussion with a third researcher.
Data extraction
JW extracted data from the 39 papers included in this systematic review. All pertinent data were extracted by reading through each paper to identify the relevant information. JW generated a Microsoft Excel spreadsheet, with a column noting the following for each study: author, year of publication, study location (country(ies), geographic regions) study method (qualitative, quantitative or mixed-methods), design (semi-structured interviews, focus groups, surveys, etc.), the demographic or socioeconomic data, if any, collected of participants. Following the development of the themes in the findings section by KH and WD, fields for the types of barriers and facilitators studied in each paper, and a summary of the papers’ findings were added to the spreadsheet.
Quality assessment
Study quality was assessed using the QualSyst (Kmet et al., Reference Kmet, Lee and Cook2004). The QualSyst tool encompasses checklists to assess the quality of quantitative and qualitative research methodologies. For qualitative studies there are ten criteria to assess quality, for quantitative studies there are fourteen criteria. There are potential scores between zero and two in response to any of the included criteria. A maximum score of two is given if the paper met the criteria completely, one for meeting the criteria partially and zero if the study failed to meet the criteria. There are some criteria in both qualitative and quantitative quality assessment checklists which may not be applicable, and so “N/A” can be stated, reducing the potential overall score, as the study may not include methods which are related to the specific criteria within the checklist. Papers were assessed using the QualSyst method by JW and TM independently, with any discrepancies between ratings were discussed jointly. Quality ratings did not influence study selection, but were used in guiding the discussion of findings and drawing conclusions. A score of 80% or above indicates a strong study, 70–80% indicates good, 50–69% indicates adequate, and below 50% indicates a poor-quality study.
Data synthesis
KH and WD discussed the findings of the 39 research papers included in this review, with the generated themes finalized in discussion with the wider research group (CG, JW, and SS). This involved narratively synthesizing the data extracted as specified above, focusing on different key barriers and facilitators identified while reading through the included studies. As this is a mixed-methods systematic review, we synthesized findings from both quantitative and qualitative studies. By including both quantitative and qualitative research, we interpreted findings complementarily, by synthesizing quantitative and qualitative evidence first separately, and then jointly. This enabled understanding whether either type of methodology confirmed findings from the other research methodology.
Results
Overview of included studies
There were 39 research studies included in this systematic review (see Table 1). The PRISMA Flowchart (Figure 1) depicts the inclusion process. All papers included findings related to barriers for PLWD and/or their carers in accessing or using community-based social care services and four contained findings related to enablers to social care access or use. It was not always possible to identify whether the PLWD, their carer or the dyad was accessing the dementia services reported in the included studies. If clearly stated in the study, the intended recipient of the care has been included in the results. However, the authors concur that services can benefit both groups directly and indirectly, and so have not otherwise attempted to interpret the intended service user within the findings of this review if unstated.
Descriptive summary of methods and setting of the research papers included in systematic review
Thirty-five (89.7%) papers used qualitative methods, primarily employing semi-structured interviews and/or focus groups. Another three papers employed quantitative methods and one used a mixed-methods design. The three quantitative studies used different methods of analyses. These included pooled prevalence ratios for investigating equity of access to services across multiple countries (Albanese et al., Reference Albanese2011), a cross-sectional survey using logistic regression to explore barriers to service access (Kyriopoulos et al., Reference Kyriopoulos2014), and latent growth curve modeling using longitudinal data on unmet need, including the impact of various socioeconomic factors (Read et al., Reference Read, Hu, Wittenberg, Brimblecombe, Robinson and Banerjee2021). Giebel et al. (Reference Giebel2021) employed mixed-methods, with 103 carers of PLWD from either England or the Netherlands responding to a questionnaire, generating data on participant characteristics and access and use of social support services. A subset of the questionnaire respondents was recruited for semi-structured interviews, to understand their lived experiences and views of potential barriers to accessing and using post-diagnostic dementia care.
Of the 39 studies, four were conducted in more than one country, including Albanese et al. (Reference Albanese2011), Giebel et al. (Reference Giebel2021), Ketchum et al. (Reference Ketchum2022), and Stephan et al. (Reference Stephan2018). A total of 23 countries were represented within these studies, with seven countries included in more than one study: UK (14), USA (10), Australia (6), the Netherlands (3), Ireland (3), Germany (2), and Norway (2).
An iterative process resulted in authors generating five themes under which the nature of barriers and / or enablers to social care access fell, including (1) situational (aspects of the PLWD/carers’ life or living situation); (2) psychological (cognitive or emotional aspects); (3) interpersonal (family/friend networks and communication with services); (4) structural (characteristics of the services themselves); and (5) cultural (aspects of a given culture, religion, norms), with studies often encompassing findings in relation to more than one of the five social care access themes (Table 2), as discussed below.
Summary of findings from papers included, in relation to barriers and/or facilitators to social care access and use
Quality ratings
Although initial scores differed minutely for 33 papers, discussions resulted in subsequent agreements for individual criteria and the overall scores for all 39 research papers (Table 3, Appendix I).
Stage 1 quality ratings: authors’ initial independent quality rating of research papers included in systematic review
Appendix I. Stage 2 quality rating: Final agreed quality rating of research papers included in systematic review.
Eight studies were deemed adequate, with the remainder either good-quality (12) or strong (19). None of the studies were deemed to be of poor quality. The strength of the research included therefore can be the basis for a strong synthesis of the existing literature in relation to the aims of this systematic review.
Situational
Nine studies referred to situational factors that acted as barriers to social care access. Economic barriers were identified, due to the financial impact to the carer/person with dementia in accessing care, which was associated with increased experiences of unmet needs over time (Read et al., Reference Read, Hu, Wittenberg, Brimblecombe, Robinson and Banerjee2021; Winslow, Reference Winslow2003). Furthermore, economic barriers in England were experienced more frequently in those without a partner providing direct support (Read et al., Reference Read, Hu, Wittenberg, Brimblecombe, Robinson and Banerjee2021) and were experienced in Greece from those with a low income, low education, or unemployed (Kyriopoulos et al., Reference Kyriopoulos2014). The negative experiences of caregiving, including the perceived hassle of caregiving, and carers’ concerns over the quality of care provided, were also found to result in situational barriers to accessing or using social care services (Winslow, Reference Winslow2003).
A further situational barrier identified includes the limiting impact in attending day care centers and respite due to the PLWD’s physical and behavioral needs. Advanced dementia, hearing difficulties, difficulties in social interaction, and confusion were reported to limit engagement with day centers in Australia, Latin America, China, India, and Nigeria (Albanese et al., Reference Albanese2011, Holm and Ziguras, Reference Holm and Ziguras2003, Phillipson and Jones, Reference Phillipson and Jones2012). Phillipson and Jones (Reference Phillipson and Jones2012) suggested that improvements to program activities and environments are required to ensure needs are met for those currently unable to access care.
Psychological
A total of 26 studies identified psychological barriers to social care usage, with only three of these studies describing psychological enablers. The nature of these psychological enablers varied depending on the population; for example, PLWD were more likely to use community dementia services if they had a sense of family responsibility and perceived the services as beneficial to them (Yiu et al., Reference Yiu, Zang and Chau2020). Family carers were more likely to use social care services available to caregivers (respite, home care services, support groups, and planned activity groups) if they believed that carers needed breaks away from the caregiving role and that there is often no perfect solution to difficult situations, necessitating the use of such services (Macleod et al., Reference Macleod, Tatangelo, McCabe and You2017). Carers were also more likely to use services if they had health literacy; that is, they were skilled in proactively seeking out support and information (Giebel et al., Reference Giebel2021).
Numerous psychological barriers to social care usage were identified. One prominent barrier was misunderstandings about available services (Casado et al., Reference Casado, Lee, Hong and Hong2015) and perceptions about costs associated with services (Gibson et al., Reference Gibson, Dickinson, Brittain and Robinson2015). Confusion and difficulties surrounding the process of using unfamiliar services served as additional psychological barriers in England and Australia (Nyman et al., Reference Nyman, Innes and Heward2017; Robinson et al., Reference Robinson2012).
Another psychological barrier was stress and anxiety. Both PLWD and carers across eight European countries, who experienced a loss of control, were less likely to access and use social care services, comprising nursing home care, day care services, community, long-term care medical care, and social care structures such as respite services (Stephan et al., Reference Stephan2018). There were also specific anxieties that were experienced by PLWD and carers, respectively. Studies across America, Singapore, and Europe reported that for PLWD, fears of abandonment (Judkins and Roberto, Reference Judkins and Roberto2001), stress, and entrapment (Leong et al., Reference Leong, Madjar and Fiveash2001) were barriers to service usage. PLWD who felt that service usage would threaten their independence (Stephan et al., Reference Stephan2018; Tetley, Reference Tetley2013) or lead to public acknowledgement of their condition (Robinson et al., Reference Robinson2012) were less likely to engage with services. Finally, PLWD in England who were not living in their own home environment were less comfortable in unfamiliar surroundings and therefore less willing to access services (Clarke and Bailey, Reference Clarke and Bailey2016).
Carers had their own anxieties, some of which centered around their PLWD and some were general anxieties. Carers who were worried about being separated from their PLWD (Stephan et al., Reference Stephan2018) and concerned about the safety of their PLWD in an unfamiliar environment (Hindley et al., Reference Hindley2017; Robinson et al., Reference Robinson2012; Vickrey et al., Reference Vickrey, Strickland, Fitten, Adams, Ortiz and Hays2007; Winslow, Reference Winslow2003) were less likely to engage with services. Finally, carers were reluctant to use support if it came at a cost of feeling diminished as a person (Baghirathan et al., Reference Baghirathan, Cheston, Hui, Chacon, Shears and Currie2020) and if they lacked trust in the services (Armstrong et al., Reference Armstrong2022; Macleod et al., Reference Macleod, Tatangelo, McCabe and You2017; Phillipson and Jones, Reference Phillipson and Jones2012; Winslow, Reference Winslow2003).
PLWD and carers experienced several other psychological barriers to using social care services. Some people were generally reluctant or resistant to using services in England and California (USA) (Herat-Gunaratne et al., Reference Herat-Gunaratne2020; Winslow, Reference Winslow2003) while a study of Chinese-American caregivers found that participants were simply not motivated to seek professional help (Sun et al., Reference Sun, Mutlu and Coon2014). Timing was another important psychological barrier, with some people feeling unsure of when to initiate support (Gibson et al., Reference Gibson, Dickinson, Brittain and Robinson2015) or delaying support until crisis point (Tetley, Reference Tetley2013). PLWD with communication difficulties and who had little insight into their condition often found it difficult to articulate their support needs (Clarke and Bailey, Reference Clarke and Bailey2016; Tetley, Reference Tetley2013) and were less likely to recognize the need for supportive services (Stephan et al., Reference Stephan2018). Furthermore, carers who felt a sense of duty, expectation, or responsibility to care for their PLWD (Contreras et al., Reference Contreras, Mioshi and Kishita2022; Herat-Gunaratne et al., Reference Herat-Gunaratne2020; Leong et al., Reference Leong, Madjar and Fiveash2001; Macleod et al., Reference Macleod, Tatangelo, McCabe and You2017; Nielsen et al., Reference Nielsen, Nielsen and Waldemar2021; Ryan, Reference Ryan2021; Yiu et al., Reference Yiu, Zang and Chau2020) or felt that relinquishing care to services was a personal failure (Stephan et al., Reference Stephan2018) were less likely to access services.
Interpersonal
Interpersonal factors referred to relationships and interactions between PLWD, carers, and informal and formal supports. Eight studies referred to interpersonal factors that acted as barriers to social care usage, with three of these studies describing interpersonal enablers. Enabling interpersonal factors included carers’ willingness to receive interpersonal tailored support (Contreras et al., Reference Contreras, Mioshi and Kishita2022), strengthening of relationships and trust (Armstrong et al., Reference Armstrong2022), and high-quality communication between PLWD and social care workers (Yiu et al., Reference Yiu, Zang and Chau2020).
PRISMA flowchart of papers included based on inclusion/exclusion criteria.
Conversely, a lack of communication was a prominent interpersonal barrier to social care usage. Some carers in Ireland were reluctant to communicate their concerns with community-based care providers, thus preventing and delaying support (Ryan, Reference Ryan2021). A lack of communication concordance and incongruent expectations that carers and community based and other formal service providers have for one another were both major barriers to support (Sun et al., Reference Sun, Mutlu and Coon2014). Indeed, carers in the USA and Germany were less likely to interact with service providers if they believed that they did not share a similar identity with themselves (Ketchum et al., Reference Ketchum2022).
For PLWD in the USA, the stress and anxiety associated with social care services was exacerbated by perceived barriers between themselves and social care workers (Judkins and Roberto, Reference Judkins and Roberto2001). Carers who questioned the suitability of collaborating with social care services in Africa, or believed that there were no good or trustworthy African social care workers, were less likely to use their services (Hindley et al., Reference Hindley2017).
Structural
Twenty studies referred to structural factors, which primarily reported barriers through lack of awareness. Several studies showed how carers lacked any knowledge of available formal dementia services (Armstrong et al., Reference Armstrong2022; Ketchum et al., Reference Ketchum2022; Macleod et al., Reference Macleod, Tatangelo, McCabe and You2017), while others reported that too little information was provided about the dementia diagnosis, or how to initiate post-diagnostic dementia care, including but not limited to, carer support groups, respite and day care centers, transport, befriending, and clinical support (Bruce and Paterson, Reference Bruce and Paterson2000; Giebel et al., Reference Giebel, Robertson, Beaulen, Zwakhalen, Allen and Verbeek2021c; Ketchum et al., Reference Ketchum2022; Macleod et al., Reference Macleod, Tatangelo, McCabe and You2017). In addition, for those PLWD with additional needs, such as deafness and poor language skills, information sources were harder to find (Czapka and Sagbakken, Reference Czapka and Sagbakken2020; Ferguson-Coleman et al., Reference Ferguson-Coleman, Johnston, Young, Brown, de Sainte Croix and Redfern2020). Where carers/PLWD were unable to find accessible information, they were unable to access available support (Tetley, Reference Tetley2013; Gibson et al., Reference Gibson, Dickinson, Brittain and Robinson2015). In contrast, too much information (which for many people is provided at the point of diagnosis [Robinson et al., Reference Robinson2012]) was found to be overwhelming to carers.
A further barrier included the structure of dementia organizations and services that were deemed unfit for purpose. Herat-Gunaratne (Reference Herat-Gunaratne2020) described poorly organized services in England, whereby high levels of family carer presence in the person with dementia’s home led to paid care workers coming out to the home less frequently, assuming the family carer would take on greater care responsibilities. In addition, Giebel et al. (Reference Giebel2021d) further identified how many forms of post-diagnostic services in England were not adapted to the needs of those with rarer subtypes of dementia. In particular, Young Onset Dementia (YOD) and Lewy Body Dementia (LBD) were impacted by unsuitable service design (Giebel et al., Reference Giebel2021d). The use of technology, which was found to be unfamiliar to many English service users, was particularly unsuitable to those with preexisting visual impairments (Nyman et al., Reference Nyman, Innes and Heward2017).
An additional structural barrier included the difference in care needs between the PLWD and the caregiver (Cotton et al., Reference Cotton2021; Leong et al., Reference Leong, Madjar and Fiveash2001), further illustrating services that are not specific to individuals’ needs. Leong et al. (Reference Leong, Madjar and Fiveash2001) reported that carers in the USA in their study required time away from caring duties for physical rest but are unable to access respite services at short notice, suggesting that current services should aim to be more flexible where possible to encourage user engagement.
The final structural barrier identified from this review included the geographical factors that impeded access to services, due to the location of the providers and facilitators and the costs associated with attending services. In Greece, it was found that geographical barriers were most likely to affect women, low-income patients, and patients with lower health status (Kyriopoulos et al., Reference Kyriopoulos2014). In addition, the COVID-19 pandemic was also found to exacerbate unequal access to formal care, as further physical limitations were put in place to curb the spread of the virus, which were found to be unequal nationally (Giebel et al., Reference Giebel2021d).
One way to address structural issues, and thus enable improved access to care, was the use of care navigators, or a dedicated link person, who can help to overcome barriers to accessing dementia care (Giebel et al., Reference Giebel, Robertson, Beaulen, Zwakhalen, Allen and Verbeek2021c). However, where the care services were situated outside the care navigator’s reach, they were unable to support the service user. The benefits of care navigators are corroborated by Macleod et al. (Reference Macleod, Tatangelo, McCabe and You2017), as good communication between services and the PLWD, and having an expert point of contact for the family carer, were reported as key facilitators to service usage. Although the use of technology has been reported previously as a structural barrier for PLWD, establishing a telephone hotline to support carers enabled carers to seek additional advice and information when needed.
Cultural
Thirteen studies reported cultural barriers to accessing care, relating to language barriers, cultural stigmas associated with dementia and/or mental illness, and their cultural identities not being addressed in current service delivery.
Culturally insensitive care was described where care workers did not speak the same language as the service user (Sun et al., Reference Sun, Mutlu and Coon2014; Herat-Gunaratne, Reference Herat-Gunaratne2020; Nielsen et al., Reference Nielsen, Nielsen and Waldemar2021). In a study including Chinese family carers, a lack of culturally and linguistically appropriate services were noted. Where language barriers exist, negative interactions have been found between the service user and the care providers (Zhan, Reference Zhan2004). Furthermore, Jutlla (Reference Jutlla2015) reported on the importance of understanding carers’ experiences of migration, which are closely related to their experiences of inequalities and institutionalized racism, from their study interviewing 12 carers from the Sikh community. It was recommended that person-centered dementia care models highlight the importance of understanding life histories to better support carers and their family members with dementia (Jutlla, Reference Jutlla2015).
Cultural identity plays an important part in the access to dementia care and support services. Armstrong et al. (Reference Armstrong2022) identified a perceived lack of person-centered and culturally sensitive care from care professionals, in their study of carers and PLWD from South Asian and Black communities.
The stigma of dementia was experienced by different cultures, including African American, Chinese American, and Hispanic American caregivers (Vickrey et al., Reference Vickrey, Strickland, Fitten, Adams, Ortiz and Hays2007). Chinese family carers reported stigmatization of dementia in their community to stem from a lack of knowledge about the disease (Sun et al., Reference Sun, Mutlu and Coon2014; Zhan, Reference Zhan2004). The lack of knowledge, and feelings of shame associated with mental illness in this culture that can lead to secrecy of the condition within the family, subsequently prevented the carer or PLWD from obtaining a dementia diagnosis and accessing support services (Sun et al., Reference Sun, Mutlu and Coon2014; Zhan, Reference Zhan2004).
Cultural facilitators identified from this review relate to the benefits of faith and family values/responsibility to care. Strong cultural norms of familial responsibility for the care of older family members encourages carers to engage with services to ensure the PLWD receives the necessary care (Nielsen et al., Reference Nielsen, Nielsen and Waldemar2021; Yiu et al., Reference Yiu, Zang and Chau2020). In addition, Vickrey et al. Reference Vickrey, Strickland, Fitten, Adams, Ortiz and Hays(2007) reported that faith/spirituality can play a role in easing carer burden and provide an increased sense of purpose in supporting the PLWD.
Finally, Hindley et al. (Reference Hindley2017) described post-diagnostic dementia care in the form of faith healers, in their qualitative study interviewing Tanzanian healers and PLWD. Faith healers referred people with dementia to allopathic services when diagnosis and treatment was needed, acknowledging the limitations of their own practice such as prayers and plant extracts.
Discussion
This appears to be the first systematic review to comprehensively explore the evidence base on the barriers and facilitators of accessing and using community-based social care and support services for dementia, by focusing on multilevel inequalities as opposed to selecting a single factor. Overall, this review showed a large number of intersectional barriers faced by people with dementia when trying to access social care, and only a few enablers.
Numerous structural barriers, and thus system-based inequalities to accessing social care were evidenced, including lack of knowledge and availability of services, lack of suitable services based on dementia subtype and carer and people with dementia needs, as well as geographical availability of and accessibility to services. One way to overcome structural barriers and facilitate service uptake are Dementia Care Navigators. Care Navigators are employed in some countries under different names, with evidence emerging primarily from the US and to some degree from England and the Netherlands (Bass et al., Reference Bass2013; Giebel et al., Reference Giebel, Robertson, Beaulen, Zwakhalen, Allen and Verbeek2021c; Nowaskie et al., Reference Nowaskie2020). At the core of this role is the supportive navigation of the PLWD and carer through the care system from the point of diagnosis, to connect them with services in the community and necessary information and provide a listening support as a single point of contact about any queries related to the diagnosis. However, as evidence highlighted in this review showed, not all structural barriers can be overcome via this solution, and particularly geographical barriers can remain. Accessing dementia care in rural areas, for example, can be attempted to be facilitated via rural and remote memory clinics, as piloted in rural Canada (Morgan et al., Reference Morgan2009). With the digitalization of dementia care, particularly since the pandemic, geographical barriers can be overcome more easily. However, the digitalization of care generates new inequalities, such as digital illiteracy particularly in the older population (Choudrie et al., Reference Choudrie, Pheeraphuttranghkoon and Davari2020), digital infrastructure and financing, as well as the limited benefits of remote versus in-person care. Hence, a multidimensional approach to tackling structural barriers needs to be employed.
Care navigators or similar link persons could also provide a crucial link to facilitate improved communication between service users (carers, people with dementia) and service providers, to address and overcome interpersonal barriers in accessing care. Another way to address communication specifically, as opposed to linkage between users and providers, could be proposed by van Manen et al. (Reference Van Manen, Aarts, Metzelthin, Verbeek, hamers and Zwakhalen2021). The authors developed the Contac-d model, which provides a comprehensive overview of factors in the communication between nursing staff and people with dementia, including factors attributed to people with dementia, such as behavior and values, factors attributed to nursing staff, including individual experiences and nonverbal communication skills, as well as contextual factors, i.e. organization of care. This generated starting points for discussion to facilitate improved communication, such as respect for needs, a flexible and adapted communication approach, and longer duration of interaction. This model could be adapted or directly implemented in social care and social support services and translated for non-nursing staff.
Improved communication from services and service providers could also aid in the reduction of the myriad of psychological barriers experienced, including lack of trust in services. Addressing the wider personal barriers to accessing care services requires a multidimensional approach by tackling the misconceptions of services threatening independence, abandonment, and strong feelings of guilt from carers. Accessing social support services in the community enables independence, as opposed to threatening it, as some recent evidence from the US using Medicaid data confirms (Wang et al., Reference Wang, Yan, Temkin-Greener and Cai2021). This and many other advantages of accessing community-based social care and support for dementia need to be communicated more clearly to people with dementia and carers, to also alleviate any potential guilt which carers might experience, as this review has indicated. Feelings of guilt are common in carers and are not restricted to community-based care but also extend to residential long-term care (Giebel et al., Reference Giebel2022c; Statz et al., Reference Statz2022). This suggests that in addition to clearer communication, more readily available psychological support needs to be accessible for carers, but also potentially for people with dementia, to overcome any feelings of guilt, or other psychological experiences including stress and anxiety.
The notion of building trust in the system weaves through the identified barriers, as cultural barriers are similarly characterized by a lack of trust in services and service providers. This is compounded by dementia being a heavily stigmatized condition, which creates a personal barrier to accessing the care and support people require. The systemic inequalities can be addressed by providing targeted education and training to care providers on diverse and individual cultural needs, with this review extending a recent report by a European working group on the topic of cultural equity in dementia diagnosis and care (Gove et al., Reference Gove2021). Services need to be adapted to the dietary, religious, and linguistic needs of people with dementia, which can be difficult in the diverse societies that we live in today. However, a general approach of being mindful of and assessing the people with dementia’s needs, including cultural and noncultural needs, should be engrained into care delivery.
If systemic barriers were removed and adequate and suitable services existed, people with dementia and carers may still experience situational barriers in accessing services, as individual’s personal circumstances may inhibit them from accessing care, including financial barriers. Coming from a lower socioeconomic background can hinder people from accessing vital care (Czapka and Sagbakken, Reference Czapka and Sagbakken2020), unless they get needs tested and receive financial support. However, in England, for example, currently, the cap of care costs is £23,250, with any savings or income above this cap requiring people to pay for their own care. Care systems are financed differently in each country, and the US for example has no requirement for medical insurance, leaving many from lower socioeconomic backgrounds worse off in accessing any care (Dwyer-Lindgren et al., Reference Dwyer-Lindgren2017). Thus, wider system changes need to be implemented, with learning from different countries, to address this layer of barriers.
Limitations
This systematic review was conducted rigorously to avoid limitations in quality. However, limitations of the evidence were identified and should be noted. The criteria for this review included mixed-methods studies, although in principle only one quantitative paper was identified. This is likely due to the nature of research exploring lived experiences and perceptions, but this review thus highlights a gap in the literature. The included evidence was also mostly limited to providing a generic assessment of inequalities in accessing social care and social support services for dementia, as opposed to focusing on specific services, such as day care or peer support groups. This review included international studies, however, which produced rich data around barriers and enablers to accessing dementia care globally, although the variation in individual cultures and social care systems across nations should be considered. In relation to these differences in care systems and also funding structures in different countries, it is important to highlight that we tried to be as inclusive as possible in our inclusion criteria to account for different types of social care and support services. This is evidenced by having included studies from lower and middle-income countries (LMICs). However, there may be services which have not been captured, which are more utilized in LMIC settings for example. Finally, we found mainly barriers with relatively few enablers to access and use of social care and support services. This does not necessarily mean that few enablers exist, but that research has understandably focused more on the barriers. Future research should aim to identify both barriers and enablers so that we know what hinders but also what helps people with dementia and their carers.
Conclusions
People with dementia and unpaid carers severely struggle in accessing suitable dementia care after a diagnosis across the globe. While barriers, and the few enablers, to accessing and using community-based social care for dementia were categorized into situational, psychological, interpersonal, structural, and cultural factors, these factors overlapped in many instances. In order to address inequalities in service utilization and ultimately improve health and well-being outcomes for people with dementia and their carers, future research and implementation should attempt to be cross-country and generate cross-country policy learning, such as via Alzheimer’s Europe, Alzheimer’s Disease International or WHO, all of which generate cross-country policy and care recommendations.
Conflicts of interest
CG is Guest Editor for this Special Issue and is not involved in any review or editorial decisions of this manuscript.
Source of funding
CG is funded by the National Institute for Health and Care Research Applied Research Collaboration North West Coast (ARC NWC). The views expressed in this publication are those of the author(s) and not necessarily those of the National Institute for Health Research or the Department of Health and Social Care.
