International reflections on caring for people with advanced dementia

Abstract

Dementia is causing global concern with its massive impacts on affected individuals, families, society, and national economies. As the disease progresses, patients' needs increase in number, depth, and breadth, covering physical, psychological, social, and spiritual domains. Care varies from place to place, from country to country and from east to west. To learn from some of these variations, we explored advanced dementia care in United Kingdom and Japan. Informed by an overview of literature on care of people with advanced dementia, we reflected on direct nonparticipant observations of care in urban areas of Northern Ireland and Japan. While we identified a common purpose to address the complex needs of people living with dementia, there were differences in the approach to care. Broadly, dementia care in United Kingdom tends toward person-centered care with a strong interest in Advance Care Planning as part of a palliative care approach. In Japan, we found less evidence of early stage palliative care and more of family-based decision making to inform care of older people. In both countries, dementia care varies regionally, being more available in some areas than others. International knowledge exchange and further comparative studies will help to improve care for people with advanced dementia, everywhere. K E Y W O R D Scross-cultural comparison, dementia, Japan, northern Ireland, palliative care

Multi-disciplinary supportive end of life care in long-term care: an integrative approach to improving end of life

“…Canadian society in general values individual autonomy and the active involvement of older people in patient-centered care decision-making [ 26 ]. While the challenge in Canada is to more fully involve families in resident empowerment and engagement, families in other societies and cultures may tend to instead make decisions on behalf of their aging elders [ 28 ]. Future research could explore lived experiences of different cultures within the auspices of patient-focused care.…”

A Qualitative Exploration of the Needs of Community-Dwelling Patients Living with Moderate Dementia

“…This situation made the family constantly need to bring familiar images back in mind again to diminish their fear of forgetfulness or dealing with the unstable emotional states. With the progression of disease, patients living with dementia have significantly increased day-by-day physical, mental, social, and spiritual care needs [34]. From themes one and two, the results suggested that patients living with moderate dementia need to be accompanied by someone who was familiar with them.…”

Palliative care and advanced dementia: trajectory of hospitalized elderly people in their last 48 hours of life

“…A carência de publicações na literatura abordando este grupo de pacientes no ambiente hospitalar, não contribui para uma discussão mais abrangente dos resultados. Contudo, avaliando as publicações existentes, é interessante perceber que a abordagem de cuidados paliativos varia entre serviços e é fortemente influenciada por questões culturais, como publicado por Yumoto 24 , o qual comparou o perfil de assistência no Reino Unido e no Japão. No Brasil, ainda não há uma legislação específica que trate de cuidados paliativos, mas existem normas éticas do Conselho Federal de Medicina 25 e jurídicas que norteiam o entendimento desta matéria, bem como documento do ministério da saúde que fundamenta esta prática.…”