Needs of older people living with dementia in low and middle-income Asian countries: A scoping review

Abstract

Background

Population ageing in low and middle-income Asian countries is associated with increased prevalence of dementia. The proportion of people with dementia in countries such as Bangladesh and Thailand are increasing. People with dementia can have complex care and health service needs. If these needs are not adequately met, this can result in a decreased quality of life and burden on the health system. There is considerable research into the needs of people with dementia in high-income countries. However, research on the needs of people living with dementia in low and middle-income countries remains underexplored. The aim of this study was to review and summarise the literature on the health and social care needs of older people with dementia in low and middle-income Asian countries.

Methods

Five online databases (PubMed, Scopus, Web of Science, CINAHL and PsycINFO) and google scholar were searched. The databases were searched using a selection of key words. PRISMA-ScR approach was followed in reporting the process.

Key findings

We extracted eight studies related to the health and social care needs of people with dementia that met our inclusion criteria. From the available literature, needs were categorised across five categories: (i) social, cognitive, and mental health needs; (ii) physical needs; (iii) care and service needs; (iv) knowledge-related needs; and (v) spiritual care needs.

Conclusion

While eight papers were located which discussed the needs of people with dementia across a range of domains, this review demonstrates a deficit in the current evidence-base about the health and social care needs of people living with dementia in low and middle-income Asian countries. Further research is needed to identify health and care needs of people with dementia and how these needs are being met.

Keywords

dementia older people needs low and middle-income country Asia

Background

Population ageing is a growing concern. Data shows, globally, there were 703 million older persons (60 years and above¹) in 2019 (UN, 2019b). It is projected that number of older persons worldwide will be more than double by 2050, reaching over 1.5 billion persons (UN, 2019a). While population ageing was initially most evident in higher income countries, more recently it is low and middle-income countries (LMICs) that are experiencing the greatest change (WHO, 2022b). By 2050, two-thirds of the world’s population, aged over 60 years, will live in low and middle-income countries (WHO, 2022b).

Ageing is a predominant risk factor for many diseases such as cancer, cardiovascular disease, and neurodegenerative conditions such as dementia (Niccoli & Partridge, 2012). Stephan et al. (2018) in their longitudinal study reported that older age is related to a higher likelihood of developing dementia. Commensurate with population ageing and population growth Nichols et al. (2022) estimates that globally the cases of people with dementia will increase to 152·8 million by 2050 from 57·4 million in 2019. Nichols et al. (2022) also reported that the number of people living with dementia will increase in all regions of the world, but East Asia along with North Africa and the Middle East will experience the largest increase. Additionally, Mukadam et al. (2019) reported that the proportion of dementia cases at LMICs in Asia such as India (41.2%) and China (39.5%) were higher than their previous worldwide estimate (35%).

Dementia has significant impacts in terms of medical and social care costs, as well as informal care costs (WHO, 2022a). There is considerable literature that reports on the needs of people with dementia from research conducted in Western and developed Asian countries (Cataldi et al., 2023). However, the findings of such research may not reflect the needs of people living in LMICs. Indeed the availability of services, varying diagnostic approaches, and stigma associated with dementia in low and middle-income Asian countries are likely to influence the needs of this population (Gauthier et al., 2022). Given the projected increases in the number of people living with dementia in Asian LMICs, understanding the needs of this population is necessary if their health and social care needs are to be adequately met. A pragmatic decision was made to focus only on literature from Asian LMICs, as this scoping review also informed a study focused on understanding the needs of people with dementia in Bangladesh.

The concept of need can be understood as that which enables a person to achieve, maintain or restore an acceptable level of social independence or quality of life (Meaney et al., 2005). Understanding the needs of older people living with dementia is necessary for ensuring their quality of life and development of responsive care services (Abdi et al., 2019). In literature from high income countries, the range of needs that have been reported for people living with dementia are diverse and include physical, social, and cognitive domains. For example, a Canadian study by Khanassov et al. (2021) identified self-reported needs of people with dementia living in the community related to memory, physical health, eyesight/hearing/communication, and the ability to undertake instrumental activities of daily living (such as looking after the home and managing money). Miranda-Castillo et al. (2013) in their UK study, reported that food, memory and activities of daily living are the most common needs. Park et al. (2021) in a South Korean study found that memory problems, financial hardship, a lack of daytime activities, and social isolation were frequently reported needs.

An unmet need is defined as a situation in which an individual has a need for which an intervention exists, but the individual does not, or cannot, access the intervention (Herr et al., 2014). Research in Western countries such as Ireland (Meaney et al., 2005) and the United States (Cohen-Mansfield et al., 2015) have identified high levels of unmet needs in behavioural and mental health domains, social interaction, loneliness and meaningful activities. Unmet needs in physical, psychological, or social domains can contribute to behavioural and psychological symptoms of dementia and lead to decreased quality of life (Miranda-Castillo et al., 2010). In addition to unmet needs for social interaction, Mazurek et al. (2019), in research conducted in Poland, also found that people living with dementia frequently had unmet needs associated with carrying out activities of daily living and psychological distress. Gorska et al (2013) found that people with dementia in the UK had unmet needs related to early diagnosis, post-diagnostic support, and interventions to support social engagement. However, for less developed Asian countries, Zhang et al. (2021) also reported that unmet needs of the person with dementia often centre on social needs (company and intimate relationships) and assistance with looking after their home, self-care, and caring others (usually grandchildren). Lim et al. (2012) suggested that issues with service utilisation, could be due to lack awareness of available services.

A recent report commissioned by Alzheimer’s Disease International (Gauthier et al., 2022) that addressed global issues with post diagnostic support for people with dementia, highlighted the importance of care being tailored to the needs of individuals within their cultural, social and health care contexts. It is an imperative to understand the needs of people living with dementia in low and middle-income Asian countries if post diagnostic and longer-term care is to adequately meet the needs of people with dementia and their family members. Hence, this paper addresses the following scoping review question: What are the health and social care needs of older people living with dementia in low and middle-income Asian countries?

Methods

This review followed the methodological framework of Arksey and O'Malley (2005) for scoping reviews. Reporting of the evidence was based on “Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist (Peters et al., 2021).

Data sources and search strategy

Five electronic databases (PubMed, Scopus, Web of Science, CINAHL and PsycINFO) were searched. In addition, hand-searching of reference lists of included studies was carried out. The searches were conducted between August 2019 to April 2020. Key terms used for searches were older, aged, dementia, Alzheimer disease, lower middle-income countries, health, and social care needs. Search terms were categorised into four concepts: i) aged, older; ii) geographic focus; iii) dementia; iv) needs. MeSH (Medical Subject Headings) terms, Extenders and SmartText were also applied during searches. Details of the search strategy and key terms are made available in Supplementary Materials.

Eligibility criteria

Table 1.

The scoping review applied the following inclusion and exclusion criteria.

Criteria	Inclusion	Exclusion
Study focus	The health and social needs of older people with dementia reported by people with dementia or reported by healthcare professionals	Early onset dementia, papers that only report on the perspectives of carers or healthcare professionals, and where the focus is on mental health conditions and not specifically dementia
Type of literature	Primary research articles, editorials, commentaries	Review articles
Time period	January 2000 to May 2020	Studies that do not fall within this period
Language	Published in English language	Published in non-English language
Geographic focus	Asian countries that include low, lower-middle and upper-middle income countries based on World Bank income grouping (Serajuddin & Hamadeh, 2020)	Lower and middle-income non-Asian countries e.g., Africa, Latin America; high income countries, including those in Asia such as Japan, Singapore, South Korea; transcontinental countries such as Turkey also excluded; studies involving people from LMICs living abroad
Setting	Any (rural/urban)	n/a

Screening

Search results were managed using EndNote and Microsoft Excel. After removing duplicate records, initial screening of all titles and abstracts was carried out by the first author (JM), and reviewed by a second member of the research team. Documents were excluded based on criteria detailed in Table 1. Any disagreement between the reviewers was resolved by discussion amongst all four reviewers until consensus was reached. Full text review of the remaining papers (182) was carried out by the first author (JM) and reviewed by the fourth author (Sharon). Studies were excluded because they did not meet one or more inclusion criteria, or at least one of the exclusion criteria applied. Several of the excluded studies were not in the Asian context or did not focus precisely on review topic or belonged to a high-income bracket. Further manual searching of the reference lists was carried out for the selected eight publications and no additional papers were found. The same inclusion and exclusion criteria were applied while undertaking a manual search of the reference lists. Data was extracted from studies selected for this review using a data-extraction chart designed by the first author (JM) and reviewed by the research team.

Data extraction

The following information was extracted from included papers: author and year, study objectives, setting or context of the study, study population, sample size, time of study, design of the study, and key findings. When papers reported on multiple objectives, only information related to the needs of older people with dementia was extracted. In papers where data on the needs of a person with dementia was reported from a dyad (person with dementia-family caregiver), only data that could be identified as coming from the person with dementia was extracted. If data could not be traced back to the person with dementia, then the paper was excluded. Needs related categories were identified while extracting the data. To ensure clarity and quality, these categories were reviewed by the author’s team. New categories were created where findings did not fit with existing categories. For example, the need of spiritual carewas identified in one paper, and was clearly linked to the impact of dementia. Ithad significance in relation to cultural background of the participants and thus warranted a discrete category. All data are reported in tabular and narrative format. Based on the advice from Munn et al. (2018, p. 3) “scoping reviews do not aim to produce a critically appraised and synthesised result/answer to a particular question” but rather aim to map the evidence of an emerging field. In such an endeavour there is no requirement to assess the quality of the publications. Thus, there was no critical appraisal undertaken of the quality of literature.

Results

The search of five databases produced 1495 records/publications and 113 records were returned from google scholar for a total of 1608. The records comprised peer-reviewed publications, editorials, commentary papers, policy papers and protocols. After removing duplicates, 1400 records remained. Initial screening of titles and abstracts excluded 1218 publications as these did not meet inclusion criteria. Full-text screening of the remaining 182 publications yielded eight primary research papers which were eligible for inclusion in the review (Figure 1). Study populations included older people with dementia and health professionals. Five studies were conducted in urban settings, one in a rural setting, and two in both rural and urban contexts. Geographic locations of the studies were China, India, Pakistan, and Malaysia. Quantitative research methodologies (3 survey and 1 cohort study) (Bao et al., 2019; Liu et al., 2009; Nikmat et al., 2015; Prince et al., 2011) accounted for half of the studies included in this review. Four studies (Asghar et al., 2018; Lian et al., 2017; Willis et al., 2020; Wu et al., 2016) were qualitative in approach.

Figure 1.

PRISMA-ScR reporting flow chart.

Key findings

A range of key needs of older people with dementia were reported (Table 2). Here we report these under five categories: (i) social, cognitive, and mental health needs; (ii) physical needs; (iii) care and service needs; (iv) knowledge-related needs; and (v) spiritual care needs. Some studies reported multiple needs and as such are reported across more than one category.

(i) Social, cognitive, and mental health needs

Table 2.

Characteristics of selected studies.

Author & year	Objectives	Setting/context	Study population	Study period	Study design	Key findings
Prince et al., 2011	To study the extent of chronic physical comorbidity and its impact on cognitive function and disability in low and middle- income countries	Rural and urban settings of 7 low- and middle-income countries including India and China	Community dwelling people with dementia aged 65 years and over	Not specified	Cross-sectional survey (interviewer administered)	This study found that incontinence, sensory deficits, mobility impairments and undernutrition were associated with presence of dementia and impacted on functioning. After adjusting for Clinical Dementia ratings and sociodemographic factors, incontinence, hearing impairment and mobility impairment were strongly associated with disability. Hearing impairment made a notable independent contribution to cognitive impairment. Evidence of benefit is notable in those who used hearing aids effectively.
Lian et al., 2017	Understanding experiences of people with dementia pertaining to diagnosis	Daping Hospital, China	People living with dementia	March-May 2016	Interpretative study design - focus groups and interviews	The untreatable nature of dementia led to a fear amongst patients confronting the diagnosis. People with dementia were likely to deny they had a problem based on perceptions of who they thought would or would not get dementia. In the absence of knowledge about dementia, diagnosis can be delayed. Financial concerns/high medical costs were barriers to people with dementia seeking a diagnosis. There is a need for dementia screening in the community as a convenient and cost-effective way for people to engage with primary care services that could facilitate a diagnosis. More flexible and user-friendly screening methods are needed. Promotion of dementia knowledge and timely dementia diagnosis are needed to enable early diagnosis.
Willis et al., 2020	Exploring experiences with help-seeking, understandings of dementia, experiences with stigma, and the role of religion among people with dementia	Two urban sites in karachi and Lahore, Pakistan	People living with dementia in the community	Not specified	Qualitative exploratory design using semi-structured interviews	Results were presented in four themes – pathways to diagnosis, understanding of diagnosis, stigma, and religion. Pathways to diagnosis: People living with dementia, recognised dementia symptoms and often sought health services with a family physician Understandings of diagnosis: Participants with dementia did not know that they had dementia, they sought medical help for other health problems and health professionals recognised possible dementia and advised of need for diagnosis. Stigma: People with dementia faced greater negativity from family members than neighbours or members of the community, although family members were reported to be kind and supportive. Religion: Some participants with dementia forget to pray or forget the sequential steps of prayer which caused them distress.
Nikmat et al., 2015	Investigating depression and loneliness/social isolation among older people with cognitive impairment living in nursing homes	Government nursing home, Malaysia	Government. nursing homes residents (n = 149) (aged 60 and above) with cognitive impairment	Not specified	Cross-sectional survey design	This study reported that the majority of people with dementia had depression and were socially isolated. Regarding health status, 86% of participants had major depression and 81% were reported to be very isolated. The mean friendship scale (FS) (8.5) indicated that people with cognitive impairment were very isolated. Geriatric Depression scale scores (Median = 14, interquartile range is 12–15) indicated that depression has a strong association with age, educational attainment, financial status, health, cognitive impairment, and social isolation/loneliness. The FS showed a strong association of depression with relationship satisfaction with children.
Asghar et al., 2018	Investigating advantages, functionalities, and impact of Assistive technology (AT) on people with dementia	Four cities in Pakistan	People with mild dementia (MMSE score 20–25)	Not specified	Qualitative design using semi-structured interviews	This study highlighted the experiences of people with dementia using assistive technology (AT) in performing daily activities. Most of the participants lived at home (n = 17) and others (n = 3) resided in a care home. Some used more than one AT device at the same time. Results were presented under following themes: happy users (facilitated communication, facilitated travel, timely medication, and activities), non-happy users (promote social isolation and aggression, not tailored to the users need) and tech and human care (special training needs). Communication, monitoring, and reminders emerged as popular ATs. Most participants were happy with AT use and found the functionalities such as reminders, prompts, health monitoring (blood pressure, blood sugar, heartbeat rate), touch calling, communication support enhanced their socialisation, ability for independent travel and compensated for memory difficulties. Some participants were concerned that adoption of AT resulted in social isolation and some ATs were reported to not be fit for specific needs such as when AT’s functioning/use depends upon others. Suggestions for improvements included simplified functions of AT, and tailoring the functionality to the needs of the older person.
Wu et al., 2016	Examining state of health and support services available for older people with dementia and their families	Rural China	Three rural physicians, urban geriatricians, seven institutional directors of elder care Three civil affairs bureau officials	November 2014 to January 2015	Case study design with semi-structured questionnaire	The study highlighted a lack of specialised services designed to meet the needs of people with dementia. Services for non-psychiatric care were reported to be ill-equipped, with inadequate clinical staff and a lack of standardized, evidenced based practices for diagnosis, care, treatment, and rehabilitation for people with dementia. Admission of people with dementia to care facilities in rural public sector institutions is frequently denied which in turn forces family members to provide care in home settings. Geriatric hospitals lacked standardised procedures for diagnosis or treatment of dementia and related physical problems. Urban hospitals lacked staff specialised in diagnosis and treatment of neuropsychiatric disorders and staff were unable to prescribe medications for dementia. Rural physicians appeared to have poor knowledge of, and skills in, dementia diagnosis and management. Private sector institutions charge more for care of residents with dementia than other residents also impacting access.
Bao et al., 2019	Independent effects of physical multimorbidity and cognitive disorders in care dependence	Urban catchment areas in six countries in Latin America and China	Aged 65 or older in urban catchment areas	Baseline data between 2003 and 2007; follow-up between 2008-2010	Population-based cohort study	This study reported on how multimorbidity caused care dependence. Multimorbidity was assessed through 15 chronic conditions. Multimorbidity affected 31% respondents in China. Depression, anxiety, and dementia all have significant effects on care dependence independent of physical multimorbidity. Dementia increased the risk of dependence nine-fold.
Liu et al., 2009	Compare health characteristics, health service utilization, needs for care and informal care arrangements of older people in two Beijing communities	Urban and rural Beijing, China	Older people (aged 65 years and above)	January 2004 to April 2005	Cross-sectional survey	Dementia was associated with care needs. In the urban area 7.2% were diagnosed with dementia compared to 5.6% in the rural area. Rural residents (6%) utilised less health services than urban residents (38.6%). In both settings people with dementia were needing care much of the time. Carers of people with dementia spent most time assisting basic activities of daily living such as communication, dressing, eating grooming, toileting. Paid care is an available option in urban sites, but rural carers more likely to leave work or reduce their work hours to care for the person with dementia.

Two studies (Asghar et al., 2018; Nikmat et al., 2015) reported on social, cognitive, and mental health needs of people with dementia. Nikmat et al. (2015) investigated social and mental health needs among older people with cognitive impairment living at government nursing homes in Malaysia. The authors (Nikmat et al., 2015) reported that people with cognitive impairment were socially isolated and had high rates of depression, as assessed by a self-reporting Geriatric Depression Scale. Depression was strongly associated with loneliness/social isolation (Nikmat et al., 2015). However, relationship satisfaction with children was reported to help reduce depression (Nikmat et al., 2015).

In Pakistan, Asghar et al. (2018) studied the experiences of people living with dementia using assistive technology (AT) in performing daily activities and the needs that these technologies met. The results highlighted key social and communication needs of the participants which could be met by ATs. ATs included smart watches and smart walkers with Global Positioning Systems (GPS) which facilitated communication with friends and independent travel (Asghar et al., 2018). ATs were reported by participants to address needs such as loneliness through increased interaction and socialisation. ATs also supported participant’s cognitive needs by providing reminders to take medication on time (Asghar et al., 2018).

(ii) Physical needs

Two studies (Asghar et al., 2018; Prince et al., 2011) reported physical needs of people living with dementia. Prince et al. (2011) in their cross-sectional survey reported that continence, hearing, and mobility support were the most common physical needs across low-and middle-income countries and these physical needs were significantly associated with dementia severity. They also reported that hearing impairment made the most notable contribution to cognitive impairment. Asghar et al. (2018) in their study reported that ATs such as a smart walker with GPS, minimised functional difficulties in daily activities for people living with dementia and thus helped to meet their physical mobility needs. They also reported that other physical health needs of people with dementia such as blood pressure, weight and glucose monitoring could be met by ATs at home reducing the need for transport to health facilities for ongoing health monitoring.

(iii) Care and service needs

Four studies (Bao et al., 2019; Lian et al., 2017; Liu et al., 2009; Wu et al., 2016), were based in China. These studies focused on care and service needs associated with service utilisation, dependence on care, and staffing and resourcing of services.

Bao et al. (2019) in a recent cohort analysis in rural China showed that older adults with physical multimorbidity had a higher risk of care dependence and thus service utilisation. Care dependence was defined as the requirement for additional support from family carers (Bao et al., 2019). Multimorbidity was reported as impairments in areas such as vision, joints, or conditions such as hypertension, diabetes, heart failure (Bao et al., 2019). The researchers (Bao et al., 2019) argued that multimorbidity can cause depression or anxiety among older people with cognitive impairment which can in turn increase their level of dependence and need for care from others and increase their service needs.

Wu et al. (2016) carried out qualitative research in rural China and identified unmet service needs of older people with dementia. The research pointed to a lack of specialized non-psychiatric medical services designed for people with dementia. They further highlighted that existing long-term care facilities were ill-equipped to meet the needs of individuals living with dementia. Appropriate prescription of medication in rural China was also highlighted as a service need by Wu et al. (2016). Urban township hospitals lacked adequately qualified staff to prescribe medications for dementia and rural physicians with short-term basic health care training were reported to have poor knowledge in diagnosing dementia and its management (Wu et al., 2016). People with dementia were often denied admission to residential care facilities (Wu et al., 2016). These unmet service needs resulted in families having to provide care for people with dementia in home settings.

Liu et al. (2009) in a cross-sectional survey in two areas of China reported that diagnosis of dementia is higher in urban areas than rural settings. The authors (Liu et al., 2009) reported dementia was associated with higher health service utilisation (access and use of formal healthcare services) due to higher care needs. They further highlighted that carers (informal and formal) of older people with dementia provide help in areas of need associated with basic activities of daily living such as dressing, eating, grooming and toileting.

Lian et al. (2017) carried out an interpretative study to understand experiences of people with dementia and their caregivers regarding a diagnosis of dementia. The authors, (Lian et al., 2017), reported a lack of staff and resources for dementia screening in local facilities. This study highlighted the need for more easily accessible, cost efficient and flexible cognitive screening and dementia services in the community.

(iv) Knowledge-related needs

Two studies (Lian et al., 2017; Willis et al., 2020) considered knowledge-related needs of people with dementia. Willis et al. (2020) reported in their qualitative study that people with dementia in Pakistan had variable understandings of the disease and held predominantly lay perceptions about its causes. Given these understandings, the authors (Willis et al., 2020) identified that the person with dementia needed family caregivers who also understood about the disease and its common symptoms. In the absence of this, the person with dementia could be subject to negativity from family related to their symptoms. Likewise, Lian et al. (2017) in their interpretive study reported on information needs about dementia for those diagnosed with the condition.

(v) Spiritual care needs

Willis et al. (2020) identified spiritual care needs as an important issue for people with dementia and their carers in Pakistan. In this qualitive study it was reported that people with dementia may forget steps in their obligatory daily prayer that would then require them to start the ritual again or seek assistance from family members. This study highlighted that the impacts of memory impairment on religious practices was upsetting not only for the person with dementia, but was a challenge for the carers.

Discussion

This review explored the needs of older people living with dementia in low and middle-income Asian countries. With the predicted increases in the number of people with dementia in these countries an understanding of their needs is paramount to designing responsive health and social care services, especially given that dementia care services and supports are still developing in these regions (Herat-Gunaratne et al., 2019). The needs of people living with dementia have significant impacts on the uptake of health care services and costs associated with social care and informal care (WHO, 2022a). The cost of dementia (for informal care, social care and direct medical care) worldwide was estimated to US$1313 billion in 2019, of which 74% was reported from high-income countries despite the majority (61%) of people with dementia living in low and middle income countries (Wimo et al., 2023).

While the health and social care needs of people living with dementia in developed countries has received considerable attention (Gorska et al., 2013; Hopper et al., 2017; Prince et al., 2014), significantly less is reported about the needs of people with dementia in low and middle-income countries (WHO, 2023). Our findings indicate that there is limited literature on needs of people living with dementia in some low and middle-income countries in Asia. Eight studies (Asghar et al., 2018; Bao et al., 2019; Lian et al., 2017; Liu et al., 2009; Nikmat et al., 2015; Prince et al., 2011; Willis et al., 2020; Wu et al., 2016) reported data from only four Asian countries - China, Pakistan, India, and Malaysia. The methodologies (qualitive and qualitative) were diverse reflecting the varied nature of the research questions. Interestingly, no literature was located that met our inclusion criteria for Bangladesh, which is the country of focus for a larger study that this scoping review was intended to inform, or Vietnam. One reason identified for the lack of research from Bangladesh is the shortage of resources to invest in research (Roy et al., 2020). While in Vietnam, research has focused on caregiver needs (Nguyen et al., 2021) and implementation of interventions previously tested in Western countries to improve caregiver outcomes, arguably there has been limited focus on the actual needs of people with dementia in that context.

This review identified needs of people with dementia across categories of social, cognitive, and mental health; physical health; care and services; knowledge; and spiritual needs. Our findings in several of these categories echo those in the international literature from developed nations about the needs of people with dementia. In particular, the findings of this review about needs of people with dementia related to social isolation, daytime activities, psychological distress, and dementia knowledge have also been reported by Miranda-Castillo et al. (2013) in their United Kingdom study and other European studies (Mazurek et al., 2019; Michelet et al., 2021). In an Australian study Bauer et al. (2019) reported that people with dementia had a need for increased education, and care that was unmet. Likewise, Khanassov et al. (2021) in the Canadian context found physical health, eyesight/hearing/communication, medications, looking after the home, money/budgeting as key areas required to address the needs of people with dementia, which is also congruent with our findings. Moreover, a scoping review by Soong et al. (2020) that investigated health service information needs amongst people living with dementia in high-income countries reported dementia knowledge need which resonates with our findings about the knowledge-related needs of people living with dementia (Lian et al., 2017; Willis et al., 2020).

Across the studies reviewed, the care and service need of people with dementia were at times clearly highlighted, while in some studies these were implied. For example, Bao et al. (2019) clearly highlighted care needs of people with dementia when they reported how physical multimorbidity (hence physical needs) resulted in higher risk of care dependence. However, the relationship between high care needs, service needs and care outcomes were less clear. Future research which looks explicitly at care and service needs of people with dementia in low and middle-income Asian countries and how these interact to impact quality of life is needed. Additionally, Wu et al (2016) highlighted unmet service needs in terms of people with dementia being denied admission to formal services, which in effect means that they needed to rely on family carers. However, other research (Andrews et al., 2017; Bressan et al., 2020) has highlighted that family members have a range of unmet information/knowledge-related needs about dementia. It is feasible that in addition to service needs, people with dementia cared for at home will also have a range of care needs which family members may not be equipped to manage.

Just one paper (Willis et al., 2020), included in this review, reported on the spiritual needs for the person with dementia. Other research, that did not meet our inclusion criteria, explored how religious beliefs of Vietnamese (Hinton et al., 2008) and Bangladeshi caregivers (Hossain & Mughal, 2021) can serve as a source of support and a way of understanding and accepting the condition particularly from the perspective of the caregivers. However, culturally and religiously sensitive resources are needed to support both caregivers and people living with dementia (Hossain & Mughal, 2021). We chose to exclude papers where needs of people with dementia were reported by family caregivers, and this is a potential limitation of this scoping review. As such, we suggest that future reviews should include the voice of family caregivers, especially given the cultural importance of family-based care in low and middle-income countries in Asia (Yamashita et al., 2013).

Finally, the results of this scoping review should raise concerns about the lack of research in which people with dementia can give voice to their needs. Recent literature has prioritised the voice of people with dementia in co-designing interventions and services (Lord et al., 2022; Wang et al., 2019). Without research that is focused on hearing the perspectives of people with dementia in LMICs, the development of person-centred services that are responsive to consumer needs is unlikely.

Conclusion

This scoping review provides evidence that there is a lack of literature about needs of people living with dementia in Asian LMICs. There are opportunities for future research to explore the spiritual needs of people living with dementia in this context. Given the highly integrated nature of religion and spirituality, a greater focus on this area could enhance our understandings, and inform creation of future resources that may be needed to support people living with dementia. Additionally, research that prioritises the experiences of people with dementia in Asian LMICs more broadly is needed. The development of person-centred, culturally appropriate care frameworks and systems for people living with dementia in these countries, will be reliant on increased research investment and outputs.

Supplemental Material

Supplemental Material - Needs of older people living with dementia in low and middle-income Asian countries: A scoping review

Supplemental Material for Needs of older people living with dementia in low and middle-income Asian countries: A scoping review by JM Abdullah, Helen Courtney-Pratt and Kathleen Doherty, Sharon Andrews in Dementia

Footnotes

Author’s contribution

Conceptualisation: JM Abdullah, Sharon Andrews, Helen Courtney-Pratt, Kathleen Doherty, Data gathering and curation: JM Abdullah, Data review: Sharon Andrews, Helen Courtney-Pratt, Kathleen Doherty, Data extraction: JM Abdullah, Review of extracted data: Sharon Andrews, Analysis and primary draft: JM Abdullah, Review of primary draft: Sharon Andrews, Review and editing: JM Abdullah, Sharon Andrews, Kathleen Doherty

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was carried out under generous support from University of Tasmania through Research Training Programme (RTP) scholarship.

Ethical statement

Ethical approval is not required for this scoping review because the methodology of the study only consists of data from articles already in public domains.

ORCID iDs

JM Abdullah

Kathleen Doherty

Supplemental Material

Supplemental material for this article is available online.

Note

JM Abdullah is a doctoral student at College of Health and Medicine, University of Tasmania, Australia. He did his Master of Social Science degree in Public Administration and then Master of Science degree in Regional and Rural Development Planning. He also worked at academia for several years in Bangladesh. His current research is on health and social care needs of elderly people living with dementia in Bangladesh. His research interests are in dementia care, population ageing, social care, health services and system among others.

Helen Courtney-Pratt is a Senior Lecturer at the University of Tasmania, with a key interest in aged care, translational research, and dementia care and support in both community and aged care settings. She is a Registered Nurse who has held a range of positions in tertiary and health care sectors, over the last 15 years. Other research interests include clinical placements for undergraduate nurses, community engagement in health care strategies to maintain wellness, and the impact of greenspace engagement.

Dr. Kathleen Doherty is a Senior Lecturer at the Wicking Dementia Research and Education Centre, University of Tasmania. She brings experience in qualitative and quantitative research from laboratory to community settings, researcher development, and translational health services research. Her expertise includes dementia literacy, translational health services research, mixed methods, and evaluation.

Dr. Sharon Andrews is a Senior Lecturer in Nursing and Associate Head Research at the University of Tasmania. Sharon has been involved with the ageing and the aged care sector as an academic and a Registered Nurse for around two decades. Her research and teaching interests include aged care nursing, dementia care, pain management for people with advanced dementia, palliative care, participatory action research and implementation research.

References

Abdi

Spann

Borilovic

De Witte

Hawley

(2019). Understanding the care and support needs of older people: A scoping review and categorisation using the WHO international classification of functioning, disability and health framework (ICF). BMC Geriatrics, 19(1), 45. https://doi.org/10.1186/s12877-019-1189-9

Andrews

McInerney

Toye

Parkinson

C.-A.

Robinson

(2017). Knowledge of Dementia: Do family members understand dementia as a terminal condition? Dementia, 16(5), 556–575. https://doi.org/10.1177/1471301215605630

Arksey

O'Malley

(2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology, 8(1), 19–32. https://doi.org/10.1080/1364557032000119616

Asghar

Cang

H. N.

(2018). Usability evaluation of assistive technologies through qualitative research focusing on people with mild dementia. Computers in Human Behavior, 79(1), 192–201. https://doi.org/10.1016/j.chb.2017.08.034

Bao

Chua

K. C.

Prina

Prince

(2019). Multimorbidity and care dependence in older adults: A longitudinal analysis of findings from the 10/66 study. BMC Public Health, 19(1), 585. https://doi.org/10.1186/s12889-019-6961-4

Bauer

Fetherstonhaugh

Blackberry

Farmer

Wilding

(2019). Identifying support needs to improve rural dementia services for people with dementia and their carers: A consultation study in Victoria, Australia. Australian Journal of Rural Health. 27(1), 22–27. https://doi.org/10.1111/ajr.12444

Bressan

Visintini

Palese

(2020). What do family caregivers of people with dementia need? A mixed-method systematic review. Health & Social Care in the Community , 28(6), 1942–1960. https://doi.org/10.1111/hsc.13048

Cataldi

Sachdev

P. S.

Chowdhary

Seeher

Bentvelzen

Moorthy

Dua

(2023). A WHO blueprint for action to reshape dementia research. Nature Aging, 3(5), 469–471. https://doi.org/10.1038/s43587-023-00381-6

Cohen-Mansfield

Dakheel-Ali

Marx

M. S.

Thein

Regier

N. G.

(2015). Which unmet needs contribute to behavior problems in persons with advanced dementia? Psychiatry Research, 228(1), 59–64. https://doi.org/10.1016/j.psychres.2015.03.043

10.

Gauthier

Webster

Servaes

Morais

J. A.

Rosa-Neto

(2022). World Alzheimer Report 2022: Life after diagnosis: Navigating treatment, care and support. AZ International. https://www.alzint.org/u/World-Alzheimer-Report-2022.pdf

11.

Gorska

Forsyth

Irvine

Maciver

Prior

Whitehead

Reid

(2013). Service-related needs of older people with dementia: Perspectives of service users and their unpaid carers. International Psychogeriatrics, 25(7), 1107–1114. https://doi.org/10.1017/s1041610213000343

12.

Herat-Gunaratne

Cooper

Mukadam

Rapaport

Leverton

Higgs

Burton

(2019). “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. https://doi.org/10.1093/geront/gnz120

13.

Herr

Arvieu

J. J.

Aegerter

Robine

J. M.

Ankri

(2014). Unmet health care needs of older people: Prevalence and predictors in a French cross-sectional survey. European Journal of Public Health, 24(5), 808–813. https://doi.org/10.1093/eurpub/ckt179

14.

Hinton

Tran

J. N.

Tran

Hinton

(2008). Religious and spiritual dimensions of the vietnamese dementia caregiving experience. Hallym International Journal of Aging, 10(2), 139–160. https://doi.org/10.2190/ha.10.2.e

15.

Hopper

Joyce

Jelley

Woods

Orrell

Irving

Verhey

(2017). (Un)Met needs of community dwelling people with dementia: The importance of providing integrated holistic care. International Journal of Integrated Care, 17(5), 235. https://doi.org/10.5334/ijic.3545

16.

Hossain

M. Z.

Mughal

(2021). Dementia and revivalist Islam: New perspectives to understanding dementia and tackling stigma. Journal of Evaluation in Clinical Practice, 27(2), 213–217. https://doi.org/10.1111/jep.13412

17.

Khanassov

Rojas-Rozo

Sourial

Yang

X. Q.

Vedel

(2021). Needs of patients with dementia and their caregivers in primary care: Lessons learned from the Alzheimer plan of Quebec. BMC Family Practice, 22(1) 659. https://doi.org/10.1186/s12875-021-01528-3

18.

Lian

Xiao

L. D. X.

Zeng

X. M.

Wang

Ren

(2017). The experiences of people with dementia and their caregivers in dementia diagnosis. Journal of Alzheimers Disease, 59(4), 1203–1211. https://doi.org/10.3233/jad-170370

19.

Lim

Goh

Chionh

H. L.

Yap

(2012). Why do patients and their families not use services for dementia? Perspectives from a developed Asian country. International Psychogeriatrics, 24(10), 1571–1580. https://doi.org/10.1017/s1041610212000919

20.

Liu

Z. R.

Albanese

S. R.

Huang

Y. Q.

Ferri

C. P.

Yan

Prince

(2009). Chronic disease prevalence and care among the elderly in urban and rural Beijing, China - a 10/66 Dementia Research Group cross-sectional survey. BMC Public Health, 9(1), 394. https://doi.org/10.1186/1471-2458-9-394

21.

Lord

Kelleher

Ogden

Mason

Rapaport

Burton

Cooper

(2022). Co-designing complex interventions with people living with dementia and their supporters. Dementia, 21(2), 426–441. https://doi.org/10.1177/14713012211042466

22.

Mazurek

Szcześniak

Urbańska

Dröes

R.-M.

Rymaszewska

(2019). Met and unmet care needs of older people with dementia living at home: Personal and informal carers’ perspectives. Dementia, 18(6), 1963–1975. https://doi.org/10.1177/1471301217733233

23.

Meaney

A. M.

Croke

Kirby

(2005). Needs assessment in dementia. International Journal of Geriatric Psychiatry, 20(4), 322–329. https://doi.org/10.1002/gps.1284

24.

Michelet

Selbaek

Strand

B. H.

Lund

Engedal

Bieber

Bergh

(2021). Associations between unmet needs for daytime activities and company and scores on the Neuropsychiatric Inventory-Questionnaire in people with dementia: A longitudinal study. Aging & Mental Health, 26(4), 725–734. https://doi.org/10.1080/13607863.2021.1910792

25.

Miranda-Castillo

Woods

Galboda

Oomman

Olojugba

Orrell

(2010). Unmet needs, quality of life and support networks of people with dementia living at home. Health and Quality of Life Outcomes, 8(1), 132. https://doi.org/10.1186/1477-7525-8-132

26.

Miranda-Castillo

Woods

Orrell

(2013). The needs of people with dementia living at home from user, caregiver and professional perspectives: A cross-sectional survey. BMC Health Services Research, 13(1), 43. https://doi.org/10.1186/1472-6963-13-43

27.

Mukadam

Sommerlad

Huntley

Livingston

(2019). Population attributable fractions for risk factors for dementia in low-income and middle-income countries: An analysis using cross-sectional survey data. The Lancet Global Health, 7(5), e596–e603. https://doi.org/10.1016/s2214-109x(19)30074-9

28.

Munn

Peters

M. D. J.

Stern

Tufanaru

McArthur

Aromataris

(2018). Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach. BMC Medical Research Methodology, 18(1), 3. https://doi.org/10.1186/s12874-018-0611-x

29.

Nguyen

Tran

Hinton

(2021). “It’s extremely hard but it’s not a burden”: A qualitative study of family caregiving for people living with dementia in Vietnam. PloS One, 16(11), e0259788. https://doi.org/10.1371/journal.pone.0259788

30.

Niccoli

Partridge

(2012). Ageing as a risk factor for disease. Current Biology, 22(17), R741–R752. https://doi.org/10.1016/j.cub.2012.07.024

31.

Nichols

Steinmetz

J. D.

Vollset

S. E.

Fukutaki

Chalek

Abd-Allah

Vos

(2022). Estimation of the global prevalence of dementia in 2019 and forecasted prevalence in 2050: An analysis for the global burden of disease study 2019. The Lancet Public Health, 7(2), e105–e125. https://doi.org/10.1016/s2468-2667(21)00249-8

32.

Nikmat

A. W.

Hashim

N. A.

Omar

S. A.

Razali

(2015). Depression and loneliness/social isolation among patients with cognitive impairment in nursing home. Asean Journal of Psychiatry, 16(2), 222–231.

33.

Park

Giap

T.-T.-T.

Jeong

Lee

D. Y.

(2021). Needs assessment of people with dementia and impact of caregiver burden. In Hoe

Orrell

(Eds.), Camberwell Assessment of need for the elderly: Cane (2 ed., pp. 52–61). Cambridge University Press.

34.

Peters

M. D. J.

Marnie

Tricco

A. C.

Pollock

Munn

Alexander

Khalil

(2021). Updated methodological guidance for the conduct of scoping reviews. JBI Evidence Synthesis, 19(1), 3–10. https://doi.org/10.1097/xeb.0000000000000277

35.

Prince

Acosta

Ferri

C. P.

Guerra

Huang

Jacob

Williams

J. D.

(2011). The association between common physical impairments and dementia in low and middle income countries, and, among people with dementia, their association with cognitive function and disability. A 10/66 Dementia Research Group population-based study. International Journal of Geriatric Psychiatry, 26(5), 511–519. https://doi.org/10.1002/gps.2558

36.

Prince

Knapp

Guerchet

McCrone

Prina

Comas-Herrera

Salimkumar

(2014). Dementia UK: Update. Alzheimers, http://www.alzheimers.org.uk/dementiauk

37.

Roy

Hassan

A.-M.

Alom

Rajib

M. H. R.

Al-Mamun

K. A.

(2020). The situation of alzheimer’s disease in Bangladesh: Facilities, expertise, and awareness among general people. Journal of Neurological Disorders, 8(7). Retrieved from https://www.hilarispublisher.com/open-access/the---situation---of---alzheimers---disease---in---bangladesh---facilities-expertise-and-awareness-among-general-people.pdf

38.

Serajuddin

Hamadeh

(2020). New world bank country classifications by income level: 2020-2021. World Bank, https://blogs.worldbank.org/opendata/new-world-bank-country-classifications-income-level-2020-2021

39.

Soong

S. T.

Kyaw

B. M.

Theng

Y. L.

Tudor Car

(2020). Information needs and information seeking behaviour of people with dementia and their non-professional caregivers: A scoping review. BMC Geriatrics, 20(1), 720. https://doi.org/10.1186/s12877-020-1454-y

40.

Stephan

Sutin

A. R.

Luchetti

Terracciano

(2018). Subjective age and risk of incident dementia: Evidence from the national health and aging Trends survey. Journal of Psychiatric Research, 100, 1–4. https://doi.org/10.1016/j.jpsychires.2018.02.008

41.

UN, D. o. E. a. S. A., Population Division . (2019a). World population ageing 2019: Highlights ( ST/ESA/SER.A/430) . https://www.un.org/en/development/desa/population/publications/pdf/ageing/WorldPopulationAgeing2019-Highlights.pdf

42.

UN, D. o. E. a. S. A., Population Division . (2019b). World population Prospects 2019. https://population.un.org/wpp/DataQuery/

43.

Wang

Marradi

Albayrak

Van Der Cammen

T. J. M.

(2019). Co-Designing with people with dementia: A scoping review of involving people with dementia in design research. Maturitas, 127, 55–63. https://doi.org/10.1016/j.maturitas.2019.06.003

44.

WHO . (2022a). Demenita. WHO. https://www.who.int/news-room/fact-sheets/detail/dementia

45.

WHO . (2022b). Ageing and health. WHO. https://www.who.int/news-room/fact-sheets/detail/ageing-and-health#:∼:text=In2050%2C80%25ofolder,childrenyoungerthan5years

46.

WHO . (2023). World failing to address dementia challenge. WHO. https://www.who.int/news/item/02-09-2021-world-failing-to-address-dementia-challenge

47.

Willis

Zaidi

Balouch

Farina

(2020). Experiences of people with dementia in Pakistan: Help-seeking, understanding, stigma, and religion. Gerontologist, 60(1), 145–154. https://doi.org/10.1093/geront/gny143

48.

Wimo

Seeher

Cataldi

Cyhlarova

Dielemann

J. L.

Frisell

Dua

(2023). The worldwide costs of dementia in 2019. Alzheimer's & Dementia. 19(7), 2865–2873. https://doi.org/10.1002/alz.12901

49.

Gao

Chen

Dong

(2016). Care services for elderly people with dementia in rural China: A case study. Bulletin of the World Health Organization, 94(3), 167. https://doi.org/10.2471/BLT.15.160929

50.

Yamashita

Soma

Chan

R. K. H.

Izuhara

(2013). Handbook on East Asian social policy. In Chapter 22: Re-Examining family-centred care arrangements in East Asia (pp. 472–490). Edward Elgar Publishing.

51.

Zhang

Yang

Wang

(2021). Met and unmet care needs of home-living people with dementia in China: An observational study using the Camberwell Assessment of Need for the Elderly. Geriatrics & Gerontology International, 21(1), 102–107. https://doi.org/10.1111/ggi.14093

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