Fixing dementia home care in England

Professor Claudia Cooper is centre lead and Professor of Psychological Medicine at the Centre for psychiatry and mental health at Queen Mary University London’s Wolfson Institute of Population Health. A consultant old age psychiatrist in East London NHS Foundation Trust memory services, she also leads the Alzheimer’s Society Centre of Excellence for Independence at home, including the development of NIDUS-Professional. She co-directs the NIHR Dementia and Neurodegenerative diseases Policy Research Unit based at QMUL (DENPRU-QM), as well as being a member of the UK Cabinet Office Evaluation Task Force Advice Panel, and NIHR Senior Investigator. @ClaudiaACooper1 @DeNPRU_QM

Professor Sube Banerjee, Pro-Vice Chancellor and Professor of Dementia at the Faculty of Medicine and Health Sciences, University of Nottingham, is an old age psychiatrist and clinical researcher working on improving quality of life and quality of care for people with dementia. He is the director of Time for Dementia, which seeks to improve dementia attitudes and skills in the workforce, and of DETERMIND, an ESRC/NIHR programme of research into inequalities and inequities in dementia care and outcomes. He also co-directs DENPRU-QM with Professor Cooper.  

Getting home care right and empowering home care workers to care effectively is key to enabling people with dementia to live well in their own homes. Our Age and Ageing article shares positive findings from preliminary testing of a NIDUS (New interventions for Independence in Dementia) support package, a co-designed, six‐session manualised training programme for home care professionals working with people with dementia. The group sessions explore practical actions that home care workers can try in order to support their clients’ independence, and self‐care strategies to manage job stresses. Facilitators then meet monthly with the groups over three months to support them in putting their learning into practice.

We believe this feasibility study is the first Randomised Controlled Trial of a dementia training and support intervention in UK home care. It was conducted in 2021/22, when staff were working under immense pressure, as pandemic effects compounded existing problems in a sector characterised by high staff turnover and recruitment challenges. We found participants welcomed the opportunity for peer-to-peer learning and support. Peer learning groups are mandated for doctors as a condition of registration, and it would be unthinkable for any health professional to provide client-facing care without training involving case-based, peer learning. Yet most home care workers have no such training, and NIDUS provides this.

We welcome English policymakers’ plans to increase social care workforce, capacity and skills.This has the potential to benefit clients directly and promote staff retention in a sector in crisis. Vacancies in home care services in England are at 13%, four times the average for UK jobs. Many home care agencies provided less care in 2023 than in previous years, despite higher needs, due to recruitment problems…

We are working with national home care providers to plan and conduct a future large-scale definitive pragmatic trial. We will engage agency research champions to collect aggregated, anonymised client outcomes, providing real-world client data. In our feasibility trial, only a minority of family carers and clients were willing and able to consent to direct participation.

We plan that UK home care agencies adopting NIDUS-Professional, in our future trial and beyond, will access the NIDUS-Professional staff support package, which we will train agencies themselves to co-deliver. They will also have access to training for home care workers to deliver NIDUS-Family to clients who would like to receive it, three-quarters of whom are state funded. If forthcoming analyses show NIDUS-Family is cost-effective, its provision within social care-funded domiciliary care plans would be a logical next step.

Taking a wider view

Fixing home care is a wicked international problem – solving it will require broad, cross-national collaboration. For example, the Australian Promoting Independence Through quality dementia Care at Home study, which informed NIDUS-Professional co-design workshops, is yielding promising findings.

In April 2024, we welcomed Dr Anita Goh from PITCH and 17 home care workers from across England to a workshop in London, to take a wider view of the home care worker dementia training evidence base. This was part of the work of the NIHR Dementia and Neurodegenerative Disease Policy Research Unit (Queen Mary), launched in 2024, to understand how policy on knowledge and skills development in the health and social care workforce caring for people with dementia and neurodegenerative diseases does and could drive better quality care. This will help develop a shared understanding, across providers, policy-makers and researchers, of how to fix dementia home care in England.

Read the research paper Feasibility and acceptability of NIDUS-professional, a training and support intervention for homecare workers caring for clients living with dementia: a cluster-randomised feasibility trial in Age and Ageing now.