NIDUS-Family care package reduces dementia support costs

The NIDUS-Family package of care uses goal setting to help people with dementia live well at home for longer. New research from Queen Mary University of London in collaboration with UCL shows that, in addition to these known benefits, NIDUS-Family also reduces the costs associated with providing support to people with dementia. 

Approximately 982,000 people in the UK have dementia, and the costs of providing dementia support across health and social care are expected to rise to £90 billion by 2040. Finding ways to support people with dementia to continue to live in their own homes is likely to improve wellbeing, reduce inequalities in accessing treatment, and be cost-effective. 

Designed by researchers at Queen Mary University of London, NIDUS-Family is a package of care and support which focuses on practical changes people can make, with sessions built around the specific priorities of the person with dementia – such as increasing time spent in enjoyable activities, improving sleep or for carers to have more time to focus on their own wellbeing. It can be delivered to the person with dementia and family carer together, or the family carer alone, by phone, video-call or in person. 

A randomized controlled trial, led by Claudia Cooper, Professor of Psychological Medicine at Queen Mary and funded by Alzheimer's Society, found that family carers and the people with dementia they supported who received the NIDUS-family intervention were significantly more likely to achieve the goals they set than those who received their usual care over a year. This was true whether the intervention was delivered by video-call, phone or in-person. 

New data from the study, published today in Lancet Healthy Longevity, shows that NIDUS-Family is also the first personalised care and support intervention to demonstrate cost-effectiveness from the perspective of the quality of life of people with dementia. People with dementia who took part cost the NHS and social care £8934 (37%) less on average over one year than people who did not receive the additional help. These cost savings came about thanks to the person receiving the intervention spending less time in hospital and using less state-funded social care, compared with controls, costs of which far exceeded the modest £346 annual cost of this preventive intervention. 

Professor Claudia Cooper said: "The new therapy has the potential to be rolled out to support consistent, evidence-based personalised dementia care across the NHS. Given NIDUS-family helps people with dementia and their families, and also costs less, it should be widely available within routine care."  

Dr Richard Oakley, Associate Director of Research and Innovation at Alzheimer's Society, said: "Dementia devastates lives and around one million people in the UK have the condition, yet there are very few widely available therapies offering personalised support to help people improve their day-to-day life and wellbeing. 

"Therapies on offer tend to be expensive, difficult for people in remote areas to access, one-size-fits-all, and need to be delivered by clinicians so are reliant on our over-stretched care system. That's why the NIDUS-Family programme is a game-changing intervention for people with dementia, and we're really proud to have funded this work as part of Alzheimer's Society's Centres of Excellence initiative. 

"This research shows we have at our fingertips a cost-effective, realistic solution offering people living with dementia access to tailored, personalised support to achieve their own goals, which we would like to see as an option in routine care." 

Given the challenges associated with improving care for people living with dementia, it's great to see an intervention that delivers tangible benefits to patients and their families as well as potentially having a positive financial benefit to the NHS." 

Professor Rachael Hunter, Senior Author, Research Department of Primary Care and Population Health, UCL

Co-author, Professor and Chair Helen Kales, from the UC Davis Health Department of Psychiatry and Behavioral Sciences, said: "Because dementia is such a prevalent syndrome that impacts the entire family, we urgently need evidence-based, low-cost interventions for families and people living with dementia. The trial results showing the cost-effectiveness of NIDUS-Family are very exciting. In the United States, this personalized intervention can inform care within the Centers for Medicare & Medicaid Services (CMS) new dementia model, Guiding an Improved Dementia Experience (GUIDE) Model sites." 

A family carer who took part in NIDUS described how it helped the family: "There was lots of little things that we would never have thought about but I think the main thing was the understanding of how my mum's mood affected her and how she was and her behaviour. So for us to get to the bottom of that and understand that a bit more, we could deal with the whole situation in a different way."  

The new therapy has the potential to be rolled out to support consistent, evidence-based personalised dementia care across the NHS. The findings coincide with a call from the All-Party Parliamentary Group (APPG) inquiry on dementia for a levelling up of diagnosis rates and the care people receive after a diagnosis, recommending that high-quality post-diagnostic support services for dementia must be available more equitably across England. 

Although current national guidelines recommend that everyone with dementia receives personalized, post-diagnostic support, few do. Nearly two-thirds (61%) of those aged over 65 with dementia in the UK live in their own homes, rather than in care homes. However, unmet needs, poor self-care, home safety risks and burden reported by family carers are common reasons necessitating a move to a care home. 

Queen Mary University of London has a large and growing portfolio of dementia research. Its Wolfson Institute of Population Health hosts one of two NIHR Policy Research Units for Dementia and Neurodegeneration.