Understanding the educational and support needs of informal care-givers of people with dementia attending an outpatient geriatric assessment clinic

Abstract Informal (unpaid) care-givers of older people with dementia experience stress and isolation, causing physical and psychiatric morbidity. Comprehensive geriatric assessment clinics represent an important geriatrician-led model of dementia care. Our qualitative study examined the educational and support needs of care-givers of people diagnosed with dementia at a geriatric assessment clinic, resources used to address those needs and challenges experienced in doing so. We conducted structured thematic analysis of interviews with 18 informal care-givers. Participants’ narratives reflected four themes. First, care-givers sought information from varied sources, including the Alzheimer Society, the internet and clinic staff. Responsive behaviours, the expected progression of dementia and system navigation were topics of particular interest. Second, care-givers obtained assistance from public, for-profit and voluntary sources. Third, care-givers received little assistance. Two-thirds received fewer than four hours of help weekly from all sources combined, and none more than 15. Several received no assistance whatsoever. Publicly funded support workers’ tasks, and their timing, were often unhelpful. Finally, while numerous care-givers felt physical and emotional strain, and worried about how poor health impaired their care-giving, many hesitated to seek help. The needs of this unique population of informal care-givers can be met by improved home-care service flexibility, and access to trustworthy information about the expected progression of dementia and skills for managing behavioural and psychological symptoms.