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.

In ageing societies, policy makers aim for more contact between informal and formal care-givers as it may enhance the quality of care. So far, the linkage between formal and informal care-givers is generally studied from a one-sided or a single dyadic perspective, without taking into account that care networks of community-dwelling older adults often exist of multiple informal and formal care-givers. The current study examines discussion of care between all potential informal–formal care-giver dyads in a care network, and relates this to characteristics of the older care recipient, the care network and the care-givers. Seventy-four Dutch older care recipients provided information on all care-givers who helped with five different types of tasks; 410 care-givers reported on the contact between all care-givers identified. Multi-level logistic regression was conducted in 2,150 informal–formal care-giver dyads and revealed that in 26 per cent of all these dyads discussion on care occurred. This was more likely when both care-givers performed multiple types of tasks, the informal care-giver was residing with the care recipient, and contact within the formal and the informal sub-network was higher. To enhance discussion of care between informal and formal care-givers in care networks where no discussion occurs at all, home-care organisations may need to allocate formal care-givers who form a bridge with an extra-residential care-giver of care recipients living alone.