‘Rare positive result’ in trial of new support intervention for people with dementia and their family carers
A new therapy called NIDUS-Family helps people with dementia and their family carers attain their personal goals, a new study reveals.
The research, led Queen Mary University of London, with collaboration from the University of Exeter, shows that a 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 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 deliveredby 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.
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.”
Co-author Dr Iain Lang, of the University of Exeter Medical School, said: ““There are often news stories about new treatments that might prevent dementia or slow its progress. But for people who have dementia or are caring for someone who does, those things can feel distant and of little real use.
The reason this study is important is that we were able to show that a new way of supporting people with dementia and family carers makes a real difference and can help them get what they want out of life. It’s not something that people can do themselves, because it involves working with a facilitator, so our focus now will be on trying to make sure the service becomes available to people when and where they need it. If we can get local providers on board to deliver or commission this work, it could make a real difference to people’s lives here and now.”
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.”
Professor Martin Knapp, Director of the NIHR Research Programme for Social Care said: “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.”
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.”
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.
The paper is entitled ‘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‘. It is published in Lancet Healthy Longevity .
