UNDER STRICT EMBARGO UNTIL UNDER STRICT EMBARGO UNTIL MONDAY 17 FEBRUARY 2025 AT 23.30 (UK TIME).
Peer reviewed | Randomised Controlled Trial | People
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 randomised 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.”
Senior author, Professor Rachael Hunter from the Research Department of Primary Care and Population Health, UCL, said: “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.”
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.
ENDS
NOTES TO EDITORS
‘NIDUS-Family’ stands for New Intervention for Independence in Dementia Study–Family.
Contact
Sophia Prout
Faculty Communications Manager – Medicine and Dentistry
Queen Mary University of London
Email: s.prout@qmul.ac.uk or press@qmul.ac.uk
Paper details:
Abdinasir Isaaq, et al. “Cost-utility of a new psychosocial goal-setting and manualised support intervention for Independence in Dementia (NIDUS-Family) versus goal-setting and routine care: economic evaluation embedded within a randomised controlled trial.” Published in The Lancet Healthy Longevity.
DOI: 10.1016/j.lanhl.2024.100676 https://doi.org/10.1016/j.lanhl.2024.100676
Available after publication at: https://www.thelancet.com/journals/lanhl/article/PIIS2666-7568(24)00202-2/fulltext
Under strict embargo until Monday 17 February 2025 at 23.30 (UK time).
A copy of the paper is available upon request.
Conflicts of interest: The authors declare no competing interests.
Funded by: Alzheimer’s Society (Centre of Excellence grant 330)
About Queen Mary
At Queen Mary University of London, we believe that a diversity of ideas helps us achieve the previously unthinkable.
Throughout our history, we’ve fostered social justice and improved lives through academic excellence. And we continue to live and breathe this spirit today, not because it’s simply ‘the right thing to do’ but for what it helps us achieve and the intellectual brilliance it delivers.
Our reformer heritage informs our conviction that great ideas can and should come from anywhere. It’s an approach that has brought results across the globe, from the communities of east London to the favelas of Rio de Janeiro.
We continue to embrace diversity of thought and opinion in everything we do, in the belief that when views collide, disciplines interact, and perspectives intersect, truly original thought takes form.
About Alzheimer’s Society
Alzheimer’s Society is the UK’s leading dementia charity. We provide help and hope to everyone affected by dementia - past, present and future.
Dementia devastates lives, but it’s not an inevitable part of ageing. Research commissioned by Alzheimer’s Society shows that around a million people in the UK have a form of dementia. By 2040, 1.4 million people will be living with the condition in the UK, and many millions more carers, partners, families and friends affected.
Dementia is the UK’s biggest killer, and one in three people born today will develop dementia in their lifetime.
Too many face dementia alone. Alzheimer’s Society wants everyone affected by dementia to know that whoever they are, whatever they’re going through, they can turn to us for expert support through practical advice, emotional support, and guidance for the best next step.
Alzheimer’s Society is the only UK dementia research charity to fund both biomedical and care research, funding research in dementia diagnosis, treatment and care, and is a founding partner of the UK Dementia Research Institute.
We will not rest until people living with dementia and their carers live more fulfilled and less fearful lives, free from stigma and inequality.
Alzheimer’s Society offers friendly support through a range of virtual and in-person services, including our Dementia Support Line (0333 150 3456), our online Dementia Support Forum, and Dementia Advisers.
Alzheimer’s Society relies on voluntary donations to continue our vital work. You can donate now by calling 0330 333 0804 or visiting alzheimers.org.uk Follow us on Twitter and Instagram @Alzheimerssoc and Like us on Facebook. Alzheimer’s Society YouTube channel youtube.com/AlzheimersSociety Download Alzheimer’s Society’s ‘How to talk about dementia - A media guide’ here. Press Office: 0207 423 3595/07802 688 774 Email: press@alzheimers.org.uk
Journal
The Lancet Healthy Longevity
Method of Research
Randomized controlled/clinical trial
Subject of Research
People
Article Title
“Cost-utility of a new psychosocial goal-setting and manualised support intervention for Independence in Dementia (NIDUS-Family) versus goal-setting and routine care: economic evaluation embedded within a randomised controlled trial.”
Article Publication Date
17-Feb-2025
COI Statement
The authors declare no competing interests.