14 - Disease and wellness across the lifespan: A global perspective on the mental health burden of dementia

Abstract

Dementia, and especially behavioral variant frontotemporal dementia (bvFTD), reverses the hard won freedoms and rights that are enjoyed by most adult human beings. The deficits in cognition and decision-making lead to a legitimate reduction in autonomy and rights. The prognosis for dementia is poor and it ultimately ends in death. These facts, along with the widespread fear of dementia, lead to social exclusion and stigmatization of both persons living with dementia and their family members, which contributes to significant mental health burdens. This chapter explores the perspectives of persons living with dementia, caregivers, and people at risk of developing dementia in order to give a human face and voice to a marginalized population that is increasing globally. Perspectives and challenges of early and later stage patients and care-givers are contrasted to preconceived notions of older adults as well as media representations of dementia in order to explore the social discourses of labeling persons as “demented.” The mental health burden of dementia is a global problem which can only be solved after innovative policies across the world are assessed for enabling healthcare delivery and empowering patients to lead as dignified lives as possible.