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.

Profile and needs of primary informal caregivers of older patients in Belgian geriatric day hospitals: a multicentric cross-sectional study

“…Based on our experience, despite the well-recognized critical role of social workers, GDH do not currently provide systematically social consultancy to patients, as it is the case for geriatric hospitalized patients, and PIC receive too little attention in outpatient settings [ 15 ]. A recent qualitative study in an outpatient geriatric clinic reported that PIC of older people with dementia often receive little or no help, seek information on dementia by internet, and are worried about how their poor health impair their caregiving [ 16 ]. We, therefore, aimed to better define the needs of PIC of older patients admitted to GDH, by describing their socio-demographic and psycho-social characteristics, their resources and by the analysis of factors associated with PIC psychological burden for all PIC, and for subgroups of adult children and spouses.…”

Barriers and Facilitators to Implementing Web-Based Dementia Caregiver Education From the Clinician’s Perspective: Qualitative Study

“…Internet-based caregiver intervention has emerged as a potential solution to address some of these challenges. A recent needs assessment outlined that caregivers were actively seeking trustworthy sources of information about dementia on the internet [ 7 ]. Various systematic reviews suggest that web-based interventions may result in a range of improved health outcomes for caregivers, including reductions in depression, stress, distress, and anxiety [ 8 - 11 ].…”

Health and long-term care of the elderly with dementia in rural Thailand: a cross-sectional survey through their caregivers

“…Formal care played an essential role in supporting and guiding efficient informal care as Bremer et al 57 found that proper informal caregiving led to lower healthcare spending. Nonetheless, the informal sector needs proper health literacy from the formal sector58 and the two systems have to support each other along the way for the best dementia care planning and the management of elderly patients with dementia. The present study found that more than half of the caregivers were unemployed and the caregivers with good health literacy could improve informal dementia care in Thailand.…”