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NIDUS-professional aims to develop a new training and support programme to help home carers support people living with dementia.
Family carers consistently tell us that as well as support to care for people living with dementia, they also need access to good quality home care services. For people living with dementia without a regular family carer, home care services are often their only regular support. However, Alzheimer’s Fix Dementia Care campaign found that only 2% of people affected by dementia believed home care workers had sufficient dementia training. Nearly half (49%) of them believed that home care workers did not understand the needs of people with dementia.
Work completed so far
During Stream 1, we reviewed existing studies, interviewed family carers, people living with dementia and professionals and carried out observations of home care staff to find out about how and why people with dementia lose independence.
Co-production workshops
Co-production workshops, with family carers, home carers, people living with dementia and researchers have been held. Information gathered in Stream 1 is being used with our PPI (Patient and Public Involvement) co-production group's lived and clinical experience to inform the development of the NIDUS-professional. NIDUS-professional will involve six training and support sessions on how to support people living with dementia, each lasting around 1.5 hours and delivered flexibly to small groups of home care staff.
Future planned work
During Stream 3, we aim to determine the feasibility and acceptability of NIDUS-professional with linked delivery of NIDUS-family through two phases.
Phase 1: Pilot
The aim of the pilot is to ‘try out’ the newly developed training and support programme on a small scale, to see how it links with NIDUS-family and to gather feedback to finalise it before testing it in a larger study.
Researchers will deliver six training sessions over three months to a group of home care workers at one home care agency in Bradford. This will be followed by a three-month ‘implementation period’ where the research team will work alongside the agency to support them to put their learning into practice. Home carers will also be asked to invite 2-3 of their clients to receive NIDUS-family.
We will gather feedback from home care staff, people living with dementia, family carers and NIDUS researchers and incorporate this feedback to produce a final version of the training programme. This will be tested in a feasibility study with a larger number of home carers, family carers and people living with dementia.
Phase 2: Randomised Control Feasibility Trial
Researchers will work with three home care agencies in London: two will be randomly chosen to receive the training and support programme and one will be a control group (i.e. they will not receive the training and support programme). We will compare home carer stress, family carer satisfaction with services and quality life for people living with dementia in both groups.
The programme will last six-months and will follow the same format as described in Phase 1. People living with dementia, who are receiving support from home care workers assigned to receive the training and support programme, and their family carers will also be invited to receive NIDUS-family Our aim is to build links between the two programmes. Home carers who receive NIDUS-professional and family carers who receive NIDUS family will also be asked about their experiences of receiving the programmes, and this feedback will be used to adapt them if needed.