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

The Global action plan on the public health response to dementia 2017–2025 (World Health Organization, 2017a) outlines targets and recommended actions to enable countries to address the growing dementia challenge worldwide. The action plan identifies a timely and accurate dementia diagnosis – ideally delivered at primary care level – as essential for achieving universal access to care and support for people living with dementia and their caregivers. Particularly low- and middle-income countries (LMICs), where the majority of people with dementia live (61%) (World Health Organization, 2021), are ill prepared to provide care and support for the expected increase in people with dementia going forward (World Health Organization, 2021). Even in high-income countries (HICs), certain population groups are underserved, such as people living in rural and remote areas (World Health Organization, 2021).

Using data submitted by World Health Organization (WHO) Member States to the Global Dementia Observatory (GDO),¹ WHO’s Global status report to the public health response to dementia took stock of the progress made since the adoption of the action plan in 2017. The report calls for urgent international action, as the world risks falling behind the 2025 dementia targets even further amid the ongoing COVID-19 pandemic.

This article analyzes the available GDO data to demonstrate the differential effect of two common inequity measures, namely country income classification (as defined by the World Bank Group as HICs vs LMICs) and urban (spanning capital and major cities) vs rural settings, on dementia service delivery and accessibility for people with dementia and their caregivers.

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 self-report 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).

Table 1. Availability and access to community-based services for people with dementia and their care partners, health and social care facilities and access to medication by country World Bank income classification.

For people with dementia
	HICs (N=34)				LMICs (N=27)
Service availability	Available		Accessible in rural areas		Available		Accessible in rural areas
	n	%	n	%	n	%	n	%
Diagnostic services	30	88	23	67	17	63	7	26
Assessment and management of BPSD	30	88	20	59	19	70	6	22
Psychosocial services and rehabilitation	28	82	21	62	19	70	3	11
ADL support	29	85	24	71	17	63	7	26
Palliative/end-of-life care	26	76	19	56	13	48	4	15
Social/financial protection benefits	30	88	29	85	14	52	13	48
Health and social care facilities	Available		% not able to report on		Available		% not able to report on
	n	%	beds/ places	usage	n	%	beds/ places	usage
Outpatient health care centres	33	97	---	53-68*	24	89	---	78-96*
Long-term care facilities	31	91	29		19	70	77
Adult day care centres	32	94	62		18	67	73
Hospice centres	25	74	68		12	44	81
Anti-dementia medications	Available		Fully/partially reimbursed for on-label use		Available		Fully/partially reimbursed for on-label use
	n	%	n	%	n	%	n	%
Any drug approved by regulatory authorities	33	97	30	88	21	78	12	44
Generic version available	29	85	---	---	16	59	---	---
For caregivers of people with dementia
Service availability	Available		Accessible in rural areas		Available		Accessible in rural areas
	n	%	n	%	n	%	n	%
Caregiver training	27	79	21	62	12	44	2	7
Psychosocial support	28	82	23	68	12	44	9	33
Respite services	26	76	21	62	9	33	1	4
Legal information	26	76	22	65	10	37	2	7
Financial/social protection benefits	28	82	27	79	4	15	2	7

Legend: ADL = activities of daily living; BPSD = behavioral and psychological symptoms of dementia; HICs = high-income countries; LMICs = low- and middle-income countries; MS = Member States; n/N = sample size.

*Based on dementia hospital admissions and estimated number of people with dementia living in long-term care facilities.

§ Although 62 countries submitted data to the GDO, one country does not have a World Bank classification for the reference year 2019, and for this reason their responses were not included in analyses disaggregated by income-levels.

# 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 dementia-readiness 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 countries – namely 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.

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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.