'We must ensure that dementia care is understood as the responsibility of all of us, not simply of those who have the immediate and personal experience of supporting a person living with dementia.'
As life expectancy increases and global populations age, growing numbers of people live with a diagnosis of dementia: up to 47.5 million people worldwide, according to World Health Organization figures in 2016, with anticipated growth to 135.5 million by 2050. ‘Dementia’ is a generic term, used to describe a range of different syndromes and disease processes that are characterised by common symptoms: deterioration in cognitive function, particularly relating to memory, thinking, understanding, calculation, language, judgement and orientation.
In her research – Duties to Care: Dementia, Relationality and Law – Birmingham's Professor Rosie Harding argues that the increasing prevalence of dementia generates a set of pressing socio-legal concerns about how best to regulate health and social care. We need to support those who care for family members and friends as well as those living with dementia themselves. Harding’s research maps the experience of caring for a family member with dementia from diagnosis to death.
This Spotlight focuses on two aspects of Harding’s research into family carers’ experiences of the health and social care system: (a) the challenges of navigating the system; and (b) complaints about poor care. Her research shows that the current regulatory approach to dementia makes caring more difficult, and compounds the already devastating emotional and financial effects of dementia on families and carers.