Our 10/66 Dementia Research Group has been on a long journey since starting work in 1998. From the outset, our focus was the neglected issue of dementia in low and middle income countries (LMICs). After pilot work on culture- and education-fair dementia diagnosis, care arrangements and carer strain, we began epidemiological studies in Cuba and Brazil (2003), Dominican Republic, China (2004), Peru, Mexico, Venezuela (2006), Nigeria (2006), and Puerto Rico (2007). Our research network has done much to raise awareness of the high burden and limited services for people with dementia in LMICs. Over 200 publications to date have fed into annual World Alzheimer Reports with our partners Alzheimer’s Disease International. Nearly two-thirds of all people with dementia live in poorer countries, and that proportion and those numbers will increase more rapidly in those regions, where population ageing is most pronounced.
We found that dementia was, overwhelmingly, the leading contributor to disability (ref 1) and care dependence (needs for care) (2) among older people – alongside other disorders of the brain and mind, such as stroke and depression. Not surprising when you think about it, given the importance of that organ to motivating actions, planning activities, and keeping ourselves safe and secure. However, brain health is neglected as Global Health leaders focus on ‘premature mortality’, and prioritise noncommunicable diseases (NCDs) such as heart disease, cancer and diabetes – all conditions that contribute more to years of life lost than years lived with disability.
Still, not all people with dementia have needs for care, and not all older people who are care dependent have dementia. And many middle income countries, and most low income countries currently provide very little in the way of age-appropriate health and social care for older people, in general. In these settings a condition-specific focus on dementia may have been premature. There have been few takers among these countries’ governments for national scale up of the Dementia Guideline WHO’s mhGAP (Mental Health Gap Action Programme), one of seven mhGAP prioritised mental and neurological disorders.
Perhaps we need instead to be talking about disability, and, in particular, care dependence as the most visible, tangible and impactful manifestations of population ageing and the NCD epidemic? This will be a wide-ranging conversation. It needs to address the determinants of gross inequalities in trajectories of ageing between and within countries. It has to cover social care, as much as healthcare. Critically, it is about social protection, the extent to which older people are insured (in the broadest sense of the word) against the existential risks that they face, should they become sick, disabled, no longer able to work, or need care. And it is about the roles and responsibilities of the state, communities and families in providing that guarantee.
The 10/66 Dementia Research Group began to highlight the importance of care dependence ten years ago, with detailed analyses of the situation in the Dominican Republic (3) and rural Nigeria (4). These attested to the economic vulnerability of older people needing care. They were were less likely than others to have paid work, and, in Dominican Republic less likely to be receiving a pension. In Nigeria they were less likely and in Dominican Republic no more likely than others to benefit from financial support from their family. In Nigeria, care dependence was strongly associated with health service use (particularly private doctor and traditional healer services) and with high levels of out-of-pocket expenditure. A later descriptive study across all 10/66 urban and rural sites in five countries in Latin America, India and China suggested that 5-15% of all those aged 65 years and over needed care, less in rural than urban sites (2).
The 10/66 INDEP study
In 2012, we started work on 10/66’s INDEP study. Our focus now was on care dependence among older adults in our rural and urban sites in Peru, Mexico, China and Nigeria. First, we classified households where older adults lived into three categories based on findings from the two previous waves of 10/66 surveys:
- Households where none of the older adult residents had needed care (‘no care’ households)
- Households where one or more adult residents had developed needs for care between the two previous waves (‘incident care’ households)
- Households where one or more older adult residents had needed care across the two waves (‘chronic care’ households)
We studied the social and economic impact of care dependence at the level of the whole household, assessing economic impact more directly than in previous studies, through detailed measures of household consumption and income, as well as assets, indicators of economic strain, and the out-of-pocket costs of health and social care (Peru, Mexico and China only). In selected households in all four countries we carried out detailed case studies with open-ended interviews with multiple household and family key informants, to explore mechanisms underlying any associations between care dependence and household impoverishment, and any factors that supported economic resilience.
With our partners from Institute of Mental Health, Peking University, Beijing; National Institute of Neurology and Neurosurgery of Mexico; IMEDER, Peru; and Nnamdi Azikiwe University Teaching Hospital, Anambra State, Nigeria, we have now published six main INDEP study papers, all easily accessible in ‘open access’ journals.
- a protocol paper with cohort description (5)
- a description of the economic status of households where older people live (6)
- quantitative findings on impact of care dependence on income and consumption (7)
- a Journey without Maps – findings from the qualitative case studies (8)
- processes of family bargaining in allocating care responsibilities (9)
- and our analysis exploring links between older persons decision-making autonomy, care dependence and personal income (10)
What did we find?
1. There was pronounced income inequality among the households where older people lived. Multigenerational households were the norm, and older people made an important contribution to total household income, mainly from their pension income, much of which was pooled. Differences in the coverage and value of older people’s pensions were therefore a major source of variation in household income among sites, including rural/ urban differences. In several of the countries, social protection had been linked historically to formal employment, favouring a small urban elite and entrenching these profound late-life socioeconomic inequalities. Strategies to formalise the informal economy, alongside increases in the coverage and value of non-contributory pensions and transfers would help to address this problem.
2. There was a high prevalence of dementia and stroke among index older people in chronic care households at both preceding surveys, and in incident care households at the second survey. At the time of the second survey, dementia affected up to half of the incident care households, and two-thirds of the chronic care households, underlining the typically long-term and progressive nature of needs for care.
3. Household health and social care expenditure was 55% higher in care households and catastrophic healthcare expenditure 1.6 times more likely. At the preceding 10/66 surveys there appeared to be little difference in the longer-term socioeconomic status of ‘care’ and ‘no care’ households. However, by the follow-up, families were having literally to ‘tighten their belts’ to cope with the increased costs of care, cutting back on spending, including on food and essential items – consumption levels were 12% lower in chronic care households compared with care households. While total household incomes and income from private transfers (family and friends) were similar at the INDEP follow-up, income from paid work and income from government transfers were lower in care households – therefore both formal and informal mechanisms were failing to compensate families for the high costs of care.
4. Governments were largely uninvolved in the care and support of older dependent people, leaving families to negotiate a ‘Journey without Maps’. Women were the de facto caregivers but the traditional role of a female relative as caregiver was beginning to be contested. Families responded using a bricolage approach; household members moved in and out to meet the evolving needs of multiple generations, and to provide an income to support them. Nevertheless, family finances were stretched by the long-term increased out-of-pocket costs of health and social care. Restricting food consumption and other household expenditure was a commonly strategy across countries, often provoked by falling into debt. Selling off assets (a deterioration in household economic security, even if temporarily effective in maintaining household income) was another important coping mechanism identified in our qualitative research.
5. A high proportion of older residents reported constraints to their autonomy to make and act upon important decisions relating to their personal needs, and to the household as a whole. Poor health, and particularly its consequences, long-term disability and needs for care were strongly associated with lower decision making autonomy. It wasn’t ageism as such, since the tendency for lower autonomy at older ages was entirely accounted for by more needs for care. Why should needs for care be linked to reduced decision making autonomy? The association was not explained by dementia or cognitive impairment. Perhaps there is a tendency to assume that when older people need help and support, others should make decisions for them too? Or perhaps older people make a decision to trade autonomy for informal social protection and support? However, autonomy is a fundamental human right. And, consistent with a large body of international research, we found that older people who reported more autonomy in their daily lives also tended to report feeling happier and having better life satisfaction. One of the clearest findings from our research was that older people with higher personal incomes reported greater decision-making autonomy, after controlling for age, gender, education, health, disability and needs for care.
Why does this matter?
The INDEP study provides some of the first direct and detailed evidence, from middle income countries of a discernable negative economic impact on household-level economic functioning linked to care dependence of older adult residents. The needs of older people have, hitherto, never been prominent in the global health and development agendas. This study emphasizes that the health and wellbeing of older people, who live, typically, in multigenerational households, and are largely dependent upon their families for their basic needs, is inextricably linked with that of the household unit and extended family. Population ageing will rapidly increase the numbers of these ‘households where older people live’ and their societal significance. Numbers of care dependent older people may quadruple in LMIC through to 2050, while numbers of younger care dependent people remain stable.
Urgent policy responses are needed to make long-term care arrangements sustainable into the future. Attention also needs to be given to addressing structural determinants of diminished autonomy, particularly low education and poverty in general, and income insecurity among older people.This is likely to require some combination of:
- Improved income security in old age (social pensions, and greater access to contributory schemes),
- Incentivisation of informal care through compensation for direct and opportunity costs (disability benefits and caregiver allowances), and
- Incremental provision of structured social care services to support, and, where necessary, supplement or substitute the central role of informal caregivers.
For older people in countries with limited social protection, ‘dependency anxiety’ – not wanting to be a burden on relatives, fearing inadequate support, and therefore wishing to maintain independence – is a key motivating principle. Health insurance, social pensions, and targeted disability and caregiver benefits address these concerns directly, providing insurance against many of the risks that older people face. Such benefits help to reinforce reciprocal family ties, and allow dependent older people to be properly valued for their positive contributions. Family care could be bolstered, but also supplemented or substituted, where appropriate, by paid services.
Policies that confer status and promote security of older people within families; that strengthen their capabilities and expand their choices; and provide legal recognition of their rights; are likely to enhance autonomy and social and economic empowerment. Findings from our study also suggest a need to focus upon frail and dependent older people. The UN Convention on the Rights of Persons with Disabilities, if properly implemented, would overcome many barriers to autonomous action, whether participating in the life of the community, accessing transport or healthcare. The World Health Organization’s Age-friendly Cities project recommends actions to be pursued with the active involvement of older people; these target outdoor spaces and buildings, transportation, housing, social inclusion, social and civic participation, communication and information, and community and health services. In 2002, the Madrid International Plan of Action on Ageing (MIPAA) called for eliminating inequalities in access to healthcare; developing health and long-term care to meet the needs of older persons; and optimising function to ensure full participation of older persons with disabilities. However, in 2012, a 10 year review of MIPAA found that very little progress has been made towards achieving these objectives, particularly in low and middle income countries.
Perhaps that is beginning to change. There are encouraging signs. In 2016, WHO initiated its ‘Global Strategy and Action Plan on Ageing and Health‘ to run through into 2020. The plan (and by extension the governments that supported it), acknowledges the need for a transformation in health systems to “to ensure affordable access to integrated services that are centred on the needs and rights of older people”, requiring fundamental changes in the organization, funding, and delivery of care across health and social sectors. 2017 saw the launch of the ICOPE Programme, WHO’s Guidelines on Integrated Care for Older People. ICOPE brings evidence based, person-centred, holistic assessment and management into older people’s homes and communities. The guidelines focus on common morbidities at a syndromal level (low mood, cognition and behaviour, hearing, vision, mobility, falls, nutrition, incontinence) supporting detection and intervention by non-specialist healthcare workers.
As ever, nothing is going to change without political commitment, and will. To secure this, it really is time to start that conversation.
Watch our INDEP project video on the topic of care dependence in Peru
1: Sousa RM, Ferri CP, Acosta D et al. Contribution of chronic diseases to disability in
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