This article was originally solicited for and published by Politik @ UNSW Magazine, and is reprinted here with permission.
Dr Margaret Chan, Director-General of the World Health Organisation (WHO), opened the first Ministerial Conference on Global Action against Dementia in March 2015 by describing the projected increase in dementia prevalence as an “oncoming tidal wave”(1). Dr Chan refers to the prediction that the number of worldwide cases, currently at 47.5 million, is expected to double every 20 years for the foreseeable future (2). She succinctly summarised the most worrying feature of this increase by remarking: “About 60% of this disease burden falls on low- and middle-income countries, which have the least capacity to cope”(3).
Dementia is a collective term to describe conditions, most commonly Alzheimer’s disease, that cause progressive deficits to memory, cognition, language and functioning. For the person diagnosed and their family, dementia can be associated with profound loss, grief and burden. Moreover, the financial costs are staggering; from productivity loss to community and residential care, these are projected to top US$1.2 trillion by 2030 (4).
An unequal burden
There are a number of reasons why the expected increase in dementia cases will disproportionately affect low- to middle-income countries (LMICs). The majority of the worldwide population, and two-thirds of people living with dementia, reside in LMICs (5). As socioeconomic development proceeds, these regions move through the ‘health transition’, in which disease burden moves from communicable to non-communicable causes. Accordingly, LMICs are experiencing demographic ageing and an associated rise in dementia incidence at a sharper rate (246%) than high-income countries (131%) (6).
The health transition is particularly relevant in the case of dementia, to which some communicable disease is etiologically related. For example, it is estimated that up to half of those living with the human immunodeficiency virus (HIV) will develop an associated cognitive impairment (7), with the most severe cases occurring when antiretroviral treatment is unavailable or is delayed. Currently, less than 40 per cent of people with HIV in LMICs receive timely treatment (8), potentially adding many millions to current dementia projections.
Adding a third layer of insult is that residents of LMICs experience, and will continue to experience, disproportionate exposure to known environmental and lifestyle risk factors for dementia. This includes poorer access to education and higher rates of prenatal insult and dietary deficiencies. A growth in exposure to cardiovascular risk factors is also predicted with increasing urbanisation (9). Finally, lack of awareness and barriers to diagnosis mean that the current prevalence of dementia in LMICs is probably underestimated (10). As detection and diagnosis improve, so too will the number of people eligible for social and financial aid.
Appropriate dementia diagnosis, treatment and care require sophisticated social and financial infrastructure that even the most developed regions have not yet mastered. To implement such infrastructure with their already limited resources, LMICs will need to take a multidimensional approach with particular focus on the below:
The first step in responding to a problem is to understand its scope and impact. In this race, LMICs have always been far behind; the vast majority of dementia research has long been conducted in high-income countries (11). In 1998, the 10/66 Dementia Research Group was established to rectify this problem, largely funded by bodies in high-income nations or by the WHO. The Group has since significantly improved knowledge of dementia prevalence, diagnosis, risk profiles and impact in LMICs, but gaps are still noticeable. Much remains unknown about the how specific cultures are impacted by and might respond to a
rise in cases. Group leaders argue that responsibility for funding this research must be shared among higher and lower income nations, recognising the collective benefit that would result (12).
Social protections in old age
A crucial element of the dementia response in LMICs will be to address intersections with poverty. It has been established that people with dementia and their families are more likely to experience financial disadvantage than older people without (13). Most LMICs do not provide disability benefits to people with dementia, and pension coverage is not comprehensive (14). Multi-generational co-residence is a norm in many LMICs, and dependents are often expected to shoulder the financial burden of care. Despite reducing state costs in the short term, this model ultimately adds to them: caregivers are forced to leave the workforce prematurely, and development stalls as increasingly educated residents, particularly women, are forced back into the home.
Sustainable poverty reduction schemes are required that consider the implications of dementia on the whole family unit. The implementation of social pensions for the elderly has been suggested to help to break the cycle of chronic, intergenerational poverty (15). In LMICs, pensions can make up more than a third of the household income, improving living conditions for the whole family (16). Moreover, older people are known to invest the money they have into the education and health of their dependents, which ultimately advances a country’s socioeconomic development (17). Most importantly, pensions ease dependency as paid/formal care becomes more affordable.
Workforce capacity building
While freedom from poverty also facilitates better access to health care, a long focus on managing acute medical conditions has left health providers in LMICs with limited understanding of the appropriate management of chronic disease (18). Changes to medical and nursing curricula and a broader role for specialists are required to appropriately meet increasing demand.
Finally, the need for and value of dementia awareness is high; some LMIC cultures remain unfamiliar with the concept of neurocognitive disease, and many perceive dementia as a normal and anticipated part of ageing (19). This creates crucial barriers to diagnosis and receipt of care, and alleviates pressure on policy makers to provide adequate care services.
Knowledge of the early signs of dementia can lead to earlier diagnosis, allow for future planning, and facilitate access to peer support, known to protect against psychological distress (20). Understanding the modifiable risk factors for dementia can encourage preventative health behaviours in early and midlife, ultimately reducing late-life incidence of disease (and associated costs). Community awareness can also affect policy change. For example, the Australian government recognised dementia as a national health priority in 2012 after many years of lobbying from consumer and advocacy groups. Since then, funding for dementia has increased significantly, including a AUS$200 million boost to research announced in the 2014 budget (21).
Efforts to steel LMICs for the oncoming tidal wave are moving forward. Leaders from 80 countries, 80 philanthropic foundations, 45 non-Government organisations and 4 United Nations agencies signed the call for dementia action drafted by the WHO in March 2015. They committed to increasing public awareness, risk reduction campaigns, workforce capacity building and improvements to care, particularly in LMICs (22). It is increasingly apparent that only a coordinated approach between low, middle and high-income regions will allow LMICs to implement the infrastructure they need, but whether in-kind commitment transpires to effective action remains to be seen.
1. Chan, M, ‘Opening remarks at the First WHO Ministerial Conference on Global Action against Dementia’, speech in Geneva, Switzerland, 17 March 2015, <http://www.who.int/dg/speeches/2015/dementia-conference/en/>, para. 3, accessed 4 Apr. 2015.
2. World Health Organization, Dementia: A global health priority (2009), <http://www.who.int/mental_health/neurology/dementia/en/>, accessed 2 Feb. 2014.
3. Chan, op. cit., para. 5.
4. World Health Organization, op. cit.
5. Ferri, C.P. et al., ‘Global prevalence of dementia: a Delphi consensus study’, The Lancet, 366/9503 (2006), 2112-2117.
6. Prince, M. et al., ‘The global prevalence of dementia: A systematic review and metaanalysis’, Alzheimer’s & Dementia, 9/1 (2013), 63-75.
7. Cohen, R.A., Seider, T.R. and Navia, B., ‘HIV effects on age-associated neurocognitive dysfunction: premature cognitive aging or neurodegenerative disease?’, Alzheimer’s Research & Therapy, 7/37 (2015), 37-47.
8. World Health Organization, Global update on the health sector response to HIV (2014) <http://www.who.int/hiv/pub/progressreports/update2014/en/>, accessed 7 Apr. 2015.
9. Norton, S. et al., ‘Potential for primary prevention of Alzheimer’s disease: an analysis of population-based data’, Lancet Neurology, 13/8 (2014), 788-794.
10. Prince, 2013, op. cit.
11. Prince, M. et al., ‘Ageing and dementia in low and middle income countries – Using research to engage with public and policy makers’, International Review of Psychiatry, 20/4 (2008), 332–343.
16. Garcez-Leme, L.E., Deckers-Leme, M. and Espino, D.V., ‘Geriatrics in Brazil: a big country with big opportunities’, Journal of the American Geriatrics Society, 53/11 (2005), 2018–2022.
17. Prince, 2008, op. cit.
18. Beaglehole, R. et al. ‘Improving the prevention and management of chronic disease in low-income and middle-income countries: a priority for primary health care’, The Lancet, 372/9642 (2008), 940–949.
19. Prince, 2008, op. cit.
20. Schulz, R. and Martire, L.M. ‘Family caregiving of persons with dementia: prevalence, health effects, and support strategies’, The American Journal of Geriatric Psychiatry, 12/3 (2004), 240–249.
21. National Health and Medical Research Council, NHMRC unveils plan for $200m dementia boost [media release], 8 Aug. 2014, National Health and Medical Research Council, <https://www.nhmrc.gov.au/media/releases/2014/nhmrc-unveils-plan-200m-dementia-boost>, accessed 6 Apr. 2015.
22. World Health Organization, Governments commit to advancements in dementia research and care [media release], 17 Mar. 2015, World Health Organization, <http://www.who.int/mediacentre/news/releases/2015/action-on-dementia/en/>, accessed 2 Apr. 2015.