Inequitable Access to Dementia Diagnosis and Care in Low-Resource Settings – A Global Perspective

OBJECTIVES
The Global dementia action plan 2017-2025 calls for universal access to care for people with dementia and their caregivers. Yet, health systems globally are ill-prepared to support the increasing number of people with dementia, especially in low- and middle-income countries (LMICs).


METHODS
This article discusses the differential effect of country-income and rural vs urban setting on dementia service delivery and accessibility using data submitted to the Global Dementia Observatory (GDO).


RESULTS
While the majority of GDO countries provide community-based services for dementia, huge variability exists between high-income countries (HICs) and LMICs. Compared to LMICs, services for people with dementia and their caregivers are more frequently available and more universally accessible in HICs. Similarly, access to anti-dementia medication and the availability of health and social care facilities that provide dementia services is greater in HICs. Lower dementia diagnostic rates are partly due to a lack of trained workforce seen in LMICs.


CONCLUSIONS
Disparities between HICs and LMICs are often systemic and reflective of inadequate policy responses. Without accelerated joint efforts at all levels, the world will not reach the global dementia targets by 2025, particularly in LMICs where the majority of people with dementia live and will continue to live.


The Global Dementia Observatory: Gaps, Insights, and Opportunities
The GDO collates country data on 35 key dementia indicators covering epidemiology, policy, service delivery, and research. As the monitoring mechanism for the Global dementia action plan, the GDO measures progress and impact across the seven strategic areas and each of the global targets and recommended actions at national and global level.
Countries submit data using an electronic selfreport survey and accompanying reference guide (World Health Organization, 2018) to harmonize responses between countries. In the area of service delivery, the GDO collects information on a range of community-based services (see Table 1): their availability (yes/no), accessibility and -to certain extent -uptake by people with dementia and their caregivers (n of service users); a country's health system capacity with available specialized workforce (per 100,000 population) and facilities (types, number, available places/beds); as well as healthcare governance in the form of supportive policies, standards, guidelines and coordination mechanisms. To explore equitable access to services, all data can be disaggregated by country income level (HICs vs LMICs as defined by the World Bank Group); service data can further be disaggregated by availability in urban (i.e. capital and main cities) vs rural and remote or hard to reach areas (World Health Organization, 2018).  # For the purpose of GDO reporting, accessibility in rural areas is defined as accessibility outside a country's capital and major cities.
To date, 62 countries (44% LMICs) have submitted GDO data with significant regional and geographical variation. Together, these countries account for 65.5% of the global population and 76% of the population aged 60 years or older.
Community-based services for people with dementia and their caregivers are a vital component of service provision and are present in the majority of GDO countries (89% of countries for dementia services and 76% for caregiver services). However, there is huge variability between HICs and LMICs (Table 1). Not only are different dementia services more frequently available in HICs compared to LMICs, they are also more universally accessible in HICs vs LMICs. For example, access to diagnostic services outside of the capital and major cities is only available in 1 in 4 LMICs, compared to 2 in 3 HICs, highlighting the significant disadvantage of people with dementia living in rural and remote areas in LMICs. Likewise, cholinesterase inhibitors (medication available to treat dementia symptoms), especially generics, are approved by fewer LMICs compared to HICs (Table 1), and these drugs are also less frequently fully or partially included under national reimbursement schemes in LMICs, placing an added financial burden on already underprivileged and disadvantaged parts of the population.
Similar disparities between country income groupings (i.e. HICs vs LMICs) exist concerning facilities where people with dementia access health and social care services. Most facilities are available in more than 90% of HICs, but less frequently in LMICs (Table 1). Importantly, both HICs and LMICs struggle to provide data on available dementia-specific beds/places in health and social care facilities or on the use of these facilities by people with dementia (i.e. number of people served, Table 1). This lack of available information continues to hamper efforts to estimate dementia service coverage. Instead, a metric that is often used to gauge how effectively a health system is reaching people with dementia is the dementia diagnostic rate (i.e. the number of people with dementia receiving a diagnosis over the estimated number of people living with dementia in a given country). The global dementia action plan sets the target of 50% of countries reaching at least 50% diagnostic coverage by 2025. Among the 29 GDO countries that can report on this metric, the global median diagnostic rate is 48%. However, there is considerable variability with HICs (n = 19) reaching 58% diagnostic rate, while LMICs (n = 10) only achieve 21% (World Health Organization, 2021). Considering the supposedly greater dementiareadiness among participating GDO countries and greater lack of data from LMICs, the true diagnostic rate in countries globally is likely much lower. This not only makes it overall harder to reach the aforementioned global target for dementia diagnosis, but also means that an unacceptably high number of people with dementia worldwide continues to be not detected by the health system, depriving them from services and supports.
The lower diagnostic rates in LMICs are -aside from the above mentioned lacking diagnostic services and inadequate infrastructure -also a consequence of limited trained workforce. Access to dementia specialists in countriesnamely neurologists, geriatricians, or psychogeriatricians -varies greatly across countries. The median number of psycho/geriatricians, for instance, ranges from 0.02 per 100,000 population in LMICs to 2.2 per 100,000 in HICs. In addition, on average almost 1 in 5 LMICs does not provide basic dementia training (either pre-service or on-the-job training) 2 to relevant healthcare cadres (e.g. doctors, nurses, nurse aids, pharmaceutical personnel, social workers) compared to only 1 in 10 HICs. Likewise, only 1 in 3 LMICs has dementia standards, guidelines or protocols to support clinicians in providing care for people with dementia and their caregivers, compared to 4 in 5 HICs (World Health Organization, 2021).
The same differential effect between HICs and LMICs can be observed for caregiver support services (Table 1). On average, HICs seem to be on track for reaching target 5 of the global dementia action plan (i.e. 75% of Member States providing support services or training for caregivers of people with dementia). While access to different caregiver services may not be fully universal in all HICs as indicated by lower accessibility in rural or remote areas, overall the large majority of caregiver services are available at least in urban areas in most HICs (Table 1). In LMICs, on the other hand, less than half of the countries provide services and support for caregivers, with access in rural and remote areas even more limited (Table 1). Considering that the majority of people with dementia live in LMICs, where formal care services are scarce as detailed above, the fact that family caregivers as main care providers have insufficient access to training and support, places an additional major strain on the fragile dementia care and support systems in these countries.

Future Directions
Globally, at the current pace, the world is failing to reach the targets outlined in the global dementia action plan (World Health Organization, 2021), particularly in LMICs. Data presented in this article indicate disparities in dementia service delivery and support for caregivers not only between HICs and LMICs but also between urban and rural areas in both HICs and LMICs. The COVID-19 pandemic exacerbated existing inequities even further. Similar patterns emerged for other strategic areas of the global dementia action plan such as policy, awareness raising, risk reduction, and research but were not presented here (World Health Organization, 2021).
Differences between HICs and LMICs are often systemic and reflective of lacking or inadequate policy responses to dementia. This is particularly concerning given the fact that the majority of people with dementia live and will continue to live in LMICs. The global dementia action plan calls for comprehensive policy responses that recognize and address the complex needs of people with dementia. Of the 50 countries that had a stand-alone or integrated dementia plan in September 2021, 65% were HICs and only 35% were LMICs (World Health Organization, 2021). Most stand-alone dementia plans are from HICs, while the majority of LMICs tend to integrate dementia into existing plans, such as mental health, aging or non-communicable diseases. Given that most people with dementia globally are supported by close family members or friends, policies and programmes must also be designed to provide adequate support for caregivers. Yet, the current lack of widespread support and training available to informal caregivers, especially in LMICs, is alarming.
Continued inaction and complacency with small achievements in some areas are luxuries we as a society but particularly people with dementia and their caregivers cannot afford. This article put a spotlight on LMICs and highlighted the particular double burden people with dementia who are living in rural and remote areas face.
There are other inequity measures not addressed here but worthwhile discussing: for example, the disproportionate burden of dementia on women or the inequitable access to diagnosis and care for marginalized population groups (Alzheimer's Disease International, 2021). Unfortunately, the GDO in its present form cannot fully disaggregate indicators by these equity measures nor are countries able to report that information, which emphasizes the importance of continued efforts to strengthen health information systems and disaggregated data for dementia globally. More robust health information data will also enhance the possibility to estimate dementia diagnostic rates and service coverage for dementia.
Participation in the GDO is voluntary and largely depends on a country's ability, capacity and preparedness to collate relevant information at national level. This led to a selected sample of 62 "dementia-ready" countries. Moreover, self-report data carry the risk of being positively biased. These two limitations taken together potentially paint a more optimistic picture of the global dementia response than we may find once GDO data collection is extended to the rest of the world, making the call for urgent accelerated action even more critical.

Conclusion
The observed disparities between LMICs and HICs begin with prevailing stigma, misconceptions and lack of dementia knowledge; are reflected in inadequate policy responses; translate to systemically ill-prepared health and social care sectors and limited neurological workforce (World Health Organization, 2017b), and hamper research more broadly. We need to address dementia with concerted efforts by all stakeholders to improve the lives of people with dementia and their families. That means raising awareness about the impact of dementia and risk reduction measures at all societal levels; providing training and support for caregivers and families, and creating a dementia-inclusive society where people with dementia can continue to be part of their communities. We must also urgently act to strengthen the capacity of the healthcare workforce and improve access to, and quality of, diagnosis and care services. Additionally, effective and routine monitoring of dementia indicators are needed and essential to support the formulation and implementation of evidence-based policies, service planning and delivery, and to track progress at national and subnational levels. Finally, research programmes and collaborations must be established, with strategies to better understand, prevent and treat the underlying brain pathologies that cause dementia and at the same time, provide care and support for people with dementia and their caregivers.
A wide range of WHO tools such as mhGAP (World Health Organization, 2019a) and iSupport (World Health Organization, 2019b) can support national-level responses to dementia. But we need to come together as a global community and join forces to effectively tackle these issues and address dementia in a global and coordinated effort.

Notes
1. The Global Dementia Observatory (GDO) is WHO's monitoring and accountability mechanism for the Global dementia action plan. https://www.who.int/data/ gho/data/themes/global-dementia-observatory-gdo. 2. For the purpose of GDO monitoring, basic dementia training spans dementia care competencies such as diagnosis, assessment of comorbidities, assessment and treatment of behavioral and psychological symptoms of dementia, risk reduction, palliative care, and assessment and treatment of carer distress and can occur during undergraduate or graduate curricula, residency programmes, continuing education programmes, specialist certification or clinical practice on dementia care competencies.

Disclosure statement
No potential conflict of interest was reported by the author(s).

Funding
The author(s) reported that there is no funding associated with the work featured in this article.