‘Rare positive result' in trial of new support intervention for people with dementia and their family carers  

Research led by Claudia Cooper, Professor of Psychological Medicine at Queen Mary University of London, shows that a new therapy, NIDUS-Family, helps people with dementia and their family carers attain their personal goals.     

The NIDUS-family package of care and support focuses on practical changes people can make, with sessions designed around the specific priorities of the person with dementia. 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. In the NIDUS-family trial involving 302 pairs of family carers and people with dementia published today, participants were supported to set their own goals. These might be enabling the person with dementia to carry out more activities, experience better mood, sleep, appetite, relationships or social engagement, or to improve carer support and wellbeing. Those receiving the new support package met with a therapist 6 to 8 times in six months, then received 2 to 4 further support phone calls over the next 6 months. The support provided was tailored to the goals they set.    

The trial results, published today in Lancet Healthy Longevity, show that family carers and the people they supported with dementia 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. The intervention was delivered by non-clinical facilitators, who were provided with supervision and training. Only 9.3% of intervention arm versus 13.3% of control arm had moved to a care home or had died after one year. The researchers will be following up trial participants for a further year to see whether the new support helps people with dementia stay in their own homes longer.  

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.     

 This research was funded by the Alzheimer’s Society.  

 Alzheimer’s Society Associate Director of Research and Innovation, Dr Richard Oakley, said: “Currently 900,000 people live with dementia in the UK and for many personalised post-diagnostic support is often lacking, leaving them feeling isolated and vulnerable. Made possible thanks to Alzheimer’s Society’s funding, NIDUS-family has shown it can help people living with dementia achieve their goals aimed at living independently for longer. It is the first post-diagnostic support programme which can be delivered remotely and without clinical training, acting as a lifeline to thousands of carers across the UK.   

We're delighted that the researchers have secured further funding to take these findings to the next level and make the programme more inclusive and accessible. This will help to deliver the universal care and support people living with dementia desperately need.”   

Lead author, Professor Claudia Cooper said: “Because NIDUS-family can be delivered by people without clinical training, it has the potential to enable many more people to access good quality post-diagnostic support. NIDUS-Family is the first readily scalable intervention for people with dementia that is proven to improve attainment on personalised goals, and can be remotely delivered, and it should be implemented in health and care services.”  

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.”  

Around 885,000 people in the United Kingdom have dementia. Although 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.   

The Wolfson Institute of Population Health has a large and growing portfolio of dementia research. It hosts one of two NIHR Policy Research Units for Dementia and Neurodegenerative disease.   

ENDS   

NOTES TO EDITORS   

Contact:   

Honey Lucas  

Faculty Communications Officer – Medicine and Dentistry   

Queen Mary University of London   

Email: h.lucas@qmul.ac.uk    

Paper details:   

Centre for Psychiatry and Mental Health, Wolfson Institute of Population Health, Queen Mary University London, London, UK (Prof C Cooper PhD); Research Department of Primary Care and Population Health, UCL, London, UK (Dr V Vickerstaff PhD); Department of Statistical Science, UCL, London, UK (Dr J Barber PhD); Research Network Volunteer, Alzheimer’s Society, London , UK (Mrs Rosemary Phillips; Miss Margaret Ogden); Research Department of Primary Care and Population Health, UCL, London, UK (Prof K Walters PhD); St Luke’s Campus, University of Exeter (Dr I Lang PhD); Division of Psychiatry, UCL, London, UK (Dr P Rapaport PhD; Dr Vasiliki Orgeta PhD); Division of Geriatric Medicine, Dalhousie University, Canada (Prof K Rockwood MD); Centre for Psychiatry and Mental Health, Wolfson Institute of Population Health, Queen Mary University London, London, UK (Dr Sara Banks DClinPsy); Division of Psychiatry, UCL, London, UK (Dr Marina Palomo DClinPsy); Faculty of Science and Engineering, Anglia Ruskin University (Prof LT Butler PhD); Centre for Applied Dementia Studies, University of Bradford (Dr K Lord PhD); Division of Psychiatry, UCL, London, UK (Prof G Livingston MD); Faculty of Medicine and Health Sciences, University of Nottingham (Prof S Banerjee MD); The Policy Institute at King's, King's College London (Prof J Manthorpe MA); National Ageing Research Institute (NARI) (Prof B Dow PhD); University of West London (Prof J Hoe PhD); Research Department of Primary Care and Population Health, UCL, London, UK (Prof R Hunter MSc); Department of Psychiatry and Behavioral Sciences, Johns Hopkins University (Dr Quincy Samus MD), Centre for Psychiatry and Mental Health, Wolfson Institute of Population Health, Queen Mary University London, London, UK (Ms Jessica Budgett MSc).  

The published paper: A new psychosocial goal-setting and manualised support intervention for Independence in Dementia (NIDUS-Family) versus goal-setting and routine care: a single-masked, phase 3, superiority Randomised Controlled Trial. 

Journal: Lancet Healthy Longevity  

Publication date and embargo: Embargoed until 23.30hrs (UK time) on Thursday 1 February 2024  

DOI:  10.1016/S2666-7568(23)00262-3 

Available after publication at:  https://www.thelancet.com/journals/lanhl/article/PIIS2666-7568(23)00262-3/fulltext  

Funding information:   

Alzheimer’s Society (Centre of Excellence grant 330).  

About Queen Mary   

www.qmul.ac.uk     

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 the 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. Alzheimer’s Society research shows that 900,000 people in the UK have a form of dementia. By 2040, 1.6 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 our dementia-friendly guide for tips on best practice to make sure dementia is accurately and fairly reported in the media: alzheimers.org.uk/mediaguide 

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