Dementia caregiving across Latin America and the Caribbean and brain health diplomacy

Abstract

The prevalence of dementia in Latin America and the Caribbean is growing rapidly, increasing the burden placed on caregivers. Exacerbated by fragile health-care systems, unstable economies, and extensive inequalities, caregiver burden in this region is among the highest in the world. We reviewed the major challenges to caregiving in Latin America and the Caribbean, and we propose regional and coordinated actions to drive future change. Current challenges include the scarcity of formal long-term care, socioeconomic and social determinants of health disparities, gender-biased burdens, growing dementia prevalence, and the effect of the current COVID-19 pandemic on families affected by dementia. Firstly, we propose local and regional short-term strategic recommendations, including systematic identification of specific caregiver needs, testing of evidence-based local interventions, contextual adaptation of strategies to different settings and cultures, countering gender bias, strengthening community support, provision of basic technology, and better use of available information and communications technology. Additionally, we propose brain health diplomacy (ie, global actions aimed to overcome the systemic challenges to brain health by bridging disciplines and sectors) and convergence science as frameworks for long-term coordinated responses, integrating tools, knowledge, and strategies to expand access to digital technology and develop collaborative models of care. Addressing the vast inequalities in dementia caregiving across Latin America and the Caribbean requires innovative, evidence-based solutions coordinated with the strengthening of public policies.

The Psychiatric Misdiagnosis of Behavioral Variant Frontotemporal Dementia in a Colombian Sample

“…In the case of women patients, the majority of caregivers were daughters while in the case of men, their caregivers were more likely to be their wives. Studies of FTD caregivers' demographics are not extensive in Latin America ( 15 ). However, the impact of bvFTD caregiver burden and financial strains in the region seem to be higher than other dementias ( 29 – 31 ), and it appears, as with other dementias, that this burden falls disproportionately on women ( 32 – 35 ).…”

“…It also carries financial risks for patients and their families ( 13 , 14 ). The bvFTD-PPD differentiation seems to be more challenging in Latin America, as in comparisons with other region such as US or Europe, the health professionals receive less specific training around this condition ( 15 ), have less access to biomarkers ( 16 ), and the caregivers can experience more burden as consequences of misdiagnosis ( 15 ). The goal of the present study is to describe the clinical presentation characteristic of bvFTD in a Latin American population that has been under-represented in research.…”

Dementia and COVID-19 in Chile, New Zealand and Germany: A Research Agenda for Cross-Country Learning for Resilience in Health Care Systems

“…This might be especially true for health care systems of emerging economies where support structures are mostly privately organized and funded or are just starting to be implemented at a policy level, e.g., in Chile. Across LACs, only 1% of the population over the age of 60 years receives governmental support for long-term care, and only the wealthiest families can afford private long-term care [43]. With an expected poverty increase, most social determinants of health will worsen, resulting in increasing inequalities among those with dementia across LACs [44].…”

Caregiving for Patients With Frontotemporal Dementia in Latin America

“…Governmental support is extremely limited and private markets are not regulated, allowing private facilities to charge more to care for people with behavioral symptoms. Most families willing to access these services would need to pay high out-of-pocket costs that are not possible for most middle- and low-income families ( 41 , 42 ). Caregivers must also contend with the reluctance of patients with bvFTD to be institutionalized and a sense of guilt in the context of cultures that view institutionalization as a form of disrespect or betrayal ( 43 ).…”