Challenges in dementia care: comparing key issues from Brazil and the United Kingdom

Abstract

ABSTRACT. The United Kingdom-Brazil Dementia Workshop took place in July 2019 in the city of Belo Horizonte, MG, Brazil, with an interdisciplinary group of health and care professionals from the United Kingdom and from Brazil to address challenges in diagnosis, public perception and care of dementia. The aim of this article is to present the results identified in relation to challenges in the care of dementia, including recommendations that could potentially guide local and State/Municipal authorities and care services for people with dementia in the future. Four key issues were prioritised to identify challenges and generate possible solutions in Brazil and the United Kingdom: I) limitations of current health systems; II) continuous and long-term support for family carers (pre-diagnosis, mourning); III) support for people with advanced dementia and end-of-life care; IV) support for people with young-onset dementia. In both countries, carers feel left without post-diagnostic support; information on the progression of dementia is lacking and some people do not even have a specific diagnosis; encouraging and providing training for carers best manage some of the symptoms is imperative; preparation for end of life care and support carers after the death of their loved ones remains highly needed; strengthening services and qualification of health professionals, also creating protocols to guide dementia-related services represent a common challenge to overcome. The authors outline recommendations according to the issues identified to assist future formulation of adequate policies and services for people with dementia and carers.

Current clinical and research practices on frontotemporal dementia in Brazil: a national survey

“…This highlights that the medical assistance in Brazil is limited not only by the lack of advanced technological facilities (e.g., molecular neuroimaging) but also by the scarce number of health professionals specialized in dementia. 2…”

“…The prevalence of age-related disorders, such as dementias, is increasing and represents one of the most frequent causes of mortality. 1 In particular, young-onset dementias represent a major challenge for the clinical management, as specialized health professionals and adequate structures are lacking, 2 thus increasing the burden of patients and families.…”

Manejo das demências em fase avançada: recomendações do Departamento Científico de Neurologia Cognitiva e do Envelhecimento da Academia Brasileira de Neurologia

“…A saúde mental dos cuidadores também deve ser abordada. Geralmente um membro da família, os cuidadores frequentemente apresentam estresse psicológico associado a sobrecarga de cuidador 140,141 . Assistência ao cuidador deve ser focada em proporcionar melhor qualidade de vida para a família inteira.…”

“…Caregivers’ mental health must also be addressed. Since they usually are a family member, they often show a psychological distress associated with the caregivers’ burden 140 ),( 141 . Caregiver assistance should focus on providing a better quality of life for the entire family.…”

Who are the people with Alzheimer's disease in Brazil? Findings from the Brazilian Longitudinal Study of Aging

“…In addition to cognitive and behavioral symptoms and loss of functional capacity, other factors may be associated with the increased burden of AD for patients and their families such as high presence of comorbidities [5][6][7] , impaired access to healthcare facilities 8 , and unhealthy lifestyle 9 . In this sense, Brazil has made important advances in the development and implementation of healthcare programs and policies focusing on mental and physical health of the older adult population to reduce the social and economic burden of AD 10 .…”