Summary Compounded by fragile health care systems, unstable economies and huge inequalities, the burden on caregivers in this region is among the highest in the world. In this work we address the main challenges of care delivery in Latin America and the Caribbean, and propose coordinated regional actions to drive future changes. Current challenges include the shortage of formal long-term care, disparities in socioeconomic and social determinants of health, gender-biased burdens toward women, the increasing prevalence of dementia, and the effect of the current COVID pandemic. -19 in families affected by dementia. We propose short-term local and regional strategic recommendations, including the identification of specific needs of caregivers, the development of local evidence-based interventions, the contextual adaptation of strategies to different environments and cultures, the active fight against bias gender, strengthening community support, provision of basic services and better use of information technology. Finally, we propose brain health diplomacy (global actions supported by the convergence of disciplines and sectors) as an innovative framework for long-term coordinated responses, integrating tools, knowledge and strategies to expand access to digital technology and develop collaborative models of care. . Addressing the large inequalities in the care of people with dementia in Latin America and the Caribbean requires innovative, evidence-based solutions, coordinated with the strengthening of public policies. |
The aging population in Latin American and Caribbean (LAC) countries is growing rapidly. With this demographic shift, the social and economic burdens of dementia and their caregivers will multiply.
Fragile health care systems, unstable economic development, deficiencies in formal care, and large economic disparities burden caregivers in the region.
Additionally, caregivers in LAC are disproportionately affected by the COVID-19 pandemic. Here we review the key social and economic challenges of caring for people with dementia in LAC.
Below, we present a set of short-term goals (3-5 years) to accelerate regional changes. Finally, we propose long-term strategies (3 to 10 years) to mitigate projected burdens by incorporating innovative approaches (Figure 1).
| Current challenges in caring for people with dementia in LAC |
Caregiver burden (or Bournot syndrome) is the perceived stress that results from the demands (physical and emotional) and restrictions (social and occupational) as a result of caring for a person with dementia. The caregiver burden in LAC is among the highest in the world. At the same time, caregivers in LAC exhibit poorer levels of mental health and quality of life, compared to those in other regions.
Formal care systems for patients with dementia are almost non-existent in LAC and their coverage is minimal (only 1% of the population over 60 years of age receives government support and only the richest families in LAC can afford the costs of care in settings private). The monetary impact of dementia in LAC is substantial and above what most can afford. Caregivers with a low educational level usually dedicate 8 to 11 hours a day providing care, implying a high indirect cost for families. Formal caregivers are underpaid in most countries and very few receive basic dementia training. Regional formal care policies for these patients are almost non-existent.
Caregiver stress in LAC increases when their socioeconomic level is lower.
Families bear a higher proportion of the costs of care in LAC compared to Europe and the United States. It is a cultural expectation in LAC countries that family members take care of other members who suffer from chronic illnesses. Most dementia patients remain at home where their caregiver is a family member, friend or neighbor who does not receive monetary compensation for care work. Women bear the vast majority of caregiver burdens and experience greater depression and general health problems compared to men . Additionally, caregivers have fewer opportunities to advance their own careers or to support their children’s educational or career advancement.
Stigma and underdiagnosis create additional challenges for caregivers. In our region, aging is conceived as a negative process associated with physical and mental deterioration, and dementia is often diagnosed late or not at all. Dementia syndromes with prominent psychiatric and behavioral symptoms, such as Lewy body dementia and frontotemporal dementia, cause greater family and financial disruption.
The coronavirus pandemic has worsened the suffering of families struggling with dementia care in LAC by delaying diagnosis and increasing the burden on caregivers. Approximately 55% of LAC’s population has informal jobs that require leaving home to work and often lack adequate accommodation. LACs are experiencing rapid demographic change, which implies a rapid increase in the population over 60 years of age and with dementia, which directly impacts the stress of caregivers. Without comprehensive systems of healthcare, social protection and support for caregivers, the economic and social burden will increase exponentially.
| Short-term regional strategies |
In response to the main challenges reviewed here, we propose seven short-term initiatives (3-5 years)
> Action 1. Establish systems to assess caregiver needs and resources: Systematic and validated instruments for regional assessment of caregiver burden are a critical step. Structured processes are required that allow for the identification of needs and resources, such as detailed guidance for physicians on how to assess caregiver burden. The United Nations Development Program provides guidelines for assessment and intervention that can be very useful. However, these must be adapted to the specific needs of each subregion. In addition, greater integration of different health sectors is required, including specialist dementia care, primary care and social development divisions.
> Action 2. Evaluate the effectiveness of evidence-based interventions for caregivers: Current interventions in the region focus on providing economic support, reducing caregiver burden (respite care, strengthening resilience, optimism and mindfulness , cognitive-behavioral therapy), stabilize family dynamics (education programs, monitoring, community support), or advocate for formal care (government support, development of regulations). However, we do not have methodologically sound systematic reviews on its effectiveness. The so-called embedded pragmatic clinical trial design can be a useful strategy to systematically increase effectiveness.
> Action 3. Adaptation to heterogeneous environments and cultures: The World Health Organization (WHO) and regional dementia plans suggest the application of primary health care environments with the participation of specialists. However, fragmented care systems without public-private coordination require coordinated case management. Additionally, the region has unique circumstances for caregivers, such as advanced average age, rural environments with few resources, and indigenous communities. The culturally ingrained sense of duty towards older family members is another regional factor that must be addressed.
> Action 4. Reduction of cultural gender stereotypes: The disproportion of female caregivers, combined with the burden of household chores, work roles, and financial strain require urgent action. Government reimbursement and assistance policies can reduce women’s financial and emotional stress. Personalized support is essential, without neglecting the influence of religious beliefs, education, economic resources, access to information and access to nursing homes. Furthermore, the active participation of public and private society is needed to modify cultural beliefs about gender roles and stereotypes.
> Action 5. Promotion of community and intergenerational support: Alzheimer’s associations and similar are available in almost all Latin American countries. These organizations have an essential local role in disseminating relevant information, raising awareness and fighting discrimination. Other community organizations, such as churches and clubs, can partner with dementia-oriented organizations to provide coping strategies for caregivers. Mindfulness -based interventions are potentially scalable. However, these should be considered in combination with other approaches. Common repositories of virtual resources are needed.
> Action 6. Access to basic technological support: Local governments and private companies must support Internet access. Digital resources can be of great help to caregivers in rural or distant cities by facilitating access to hospitals, clinics, and online support groups.
> Action 7. Using technology to amplify access to care: International initiatives along these lines offer promising support for caregivers. Telephone counseling for caregivers of people with dementia is an intervention that can be further exploited in the region, especially in the post-pandemic. Research consortia in the region (ADNI, DIAN, FINGER, or ReDLat) can provide platforms to develop implementation science in the form of information technology solutions.
| Long-term global scalability: Brain health diplomacy and innovation tools |
There are currently no coordinated regional responses for caregivers. Most interventions in LAC have been carried out in small samples. Substantial and coordinated work is needed in implementing effective and scalable interventions. Caregiver health advocates (caregivers, families, dementia-focused communities, and political actors) do not have national platforms to help coordinate. Furthermore, LACs are highly heterogeneous and successful interventions require adaptation. Inequalities and cultural differences must be taken into account in any regional plan.
Brain health diplomacy (BHD ) and convergence science can provide an innovative framework for caregiver interventions in the context of inequalities, based on the integration of tools, knowledge and strategies developed in the multi-field interfaces. BHD is an initiative that crosses disciplinary boundaries while providing innovative, scalable resources that increase brain health. Compared to classical isolated approaches, BHD can better articulate multisectoral actions by developing integrated strategies that directly address caregiver challenges.
The BHD can provide translational support using scalable digital technology, mass data monitoring, and health assessments of caregiver dyads. However, scalability requires coordinated actions at the micro (individual), meso (community) and macro (national and transnational) levels through global policies to ensure better results. Brain health problems cannot be solved by brain sciences alone, and the BHD provides an innovative approach to coordinate disciplines and sectors. Clinical interventions, training, financial strategies and investment reallocation, policy regulations, public-private agreements and international support must be articulated at a transdisciplinary level that guarantees the success of long-term actions.
Numerous studies in the USA and Europe have shown that collaborative care models for dementia successfully reduce caregiver burden. However, even in developed countries, putting these effective models into practice has proven to be a challenge. An important cost-saving opportunity is to train unlicensed healthcare workers to provide support under the supervision of dementia specialists using telephone-based care.
The Care Ecosystem Randomized Clinical Trial combines these approaches. This trial has demonstrated benefits to the well-being of caregivers and patients while reducing emergency-related health care utilization. The BHD needs to build stable links with government plans to ensure integration into science-based policies. The development of long-term global strategies to scale collaborative dementia care, although challenging, is essential to support the growing number of dementia caregivers in the region and reduce the concomitant huge inequalities.
| Conclusions |
Coordinated initiatives are needed to address the enormous burdens faced by dementia caregivers in Latin America. Evidence-based short- and long-term solutions must be implemented.
Organizations focused on brain health, such as the Global Brain Health Institute (GBHI) or the Latin American Brain Health Institute (BrainLat) , can favor greater triangulation between global initiatives, emerging regional leaders and available public policies.
