Costs of formal and informal care at home for people with dementia: ‘Expert panel’ opinions from staff and informal carers

Abstract

Effective home support in dementia is key in delaying nursing home admission. However, home support is frequently not tailored to the individual needs of people with dementia. Staff allocating home support services may not identify important care needs, which only be recognised by informal carers.The purpose of this study was to explore the balance of informal and formal home support and their associated costs from the perspectives of both informal carers and paid staff. Five case vignettes of people with dementia were designed based on an existing English data set from a European study into transition into long-term care (the RightTimePlaceCare programme), representing 42 per cent of the English sample. In total, 14 informal carers and 14 paid staff were consulted in separate groups, as expert panels, regarding their recommendations for home care services for each vignette. Care recommendations of carers and staff were costed based on nationally available unit costs and compared. Informal carers allocated fewer hours of care than staff. Personal and domestic home care and day care centres were the most frequently recommended formal services by both groups, and some vignettes of people with dementia were recommended for care home admission. The ratio of costs of informal versus formal support was relatively equal for paid staff, yet unbalanced from the perspectives of informal carers with a greater proportion of formal care costs. Recommendations from this study can help shape dementia care to be more tailored to the individual needs of people with dementia and their carers.

Effective public involvement in the HoST-D Programme for dementia home care support: From proposal and design to methods of data collection (innovative practice)

“…Moreover, all patient and public involvement members from both groups were either emailed (virtual lay reference group) or handed out paper copies (small reference group) of any outputs arising from the programme, including annual newsletters and published journal articles acknowledging their involvement (i.e. Clarkson et al, 2016).…”

“…This is always conducted at the beginning of each small reference group session, and the lay advisory group is informed about the changes as a result of their input by each subsequent email involvement. The impact of the members' involvement is also outlined in every output arising from the programme, such as the protocol for the evidence synthesis (Clarkson et al, 2016). The research team also seeks evaluation and feedback at the end of each small reference group session with the possibility of improving subsequent sessions (most useful and least useful aspects of session and how could be improved), if required.…”

“…These components were also used in the project investigating people with dementia and carers' preferences for care (the 'Discrete Choice Experiment'). The input from carers and patients during this specific meeting is acknowledged in the first output from the programme (Clarkson et al, 2016). Patient and public involvement members suggested that there are no clear pathways from one to the next element in dementia care:…”

“…Hence, no changes were made, although their feedback was important to ensure that actual participants would easily comprehend the study information. The input of members of the virtual lay reference group is acknowledged and discussed in the output of this particular study (Study 3.1) (Giebel et al, 2016).…”

Resource allocation decision-making in dementia care with and without budget constraints: a qualitative analysis

“…Participants were asked to allocate services as appropriate to needs across the six dementia case types. They were given a service list which was based on that used by Giebel et al (2016) modified for the Irish context and informed by a mapping study of dementia-specific services in Ireland carried out in 2016/17 (Alzheimer Society of Ireland & National Dementia Office, 2017). Twenty community-based service types were listed (see Table 2).…”