Perceived barriers to self-management for people with dementia in the early stages

Abstract

People with dementia in the early stages currently experience a care gap, which self-management may address. We explore perceived barriers to self-management. Using a systematic approach (logic mapping), 19 participants (people with dementia, carers, health care professionals and charity representatives) described self-management barriers facing people living with dementia. Thematic content analysis revealed six main themes: the lived experience of dementia, diagnosis, role of carer/family, impact of health care professionals, organisation of health services and societal views. People with dementia were seen as passive recipients of care, unable to self-manage owing to the impact of dementia on cognitive abilities. The need for interventions that are largely emotion focused, encourage activity maintenance and improve quality of life are described. Barriers to self-management exist at multiple levels, suggesting a whole-systems approach is required.