‘Rare positive outcome’ in trial of new support intervention for people with dementia and their family caregivers

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 caregivers achieve their personal goals.

The NIDUS-family care and support package focuses on practical changes people can make, with sessions designed around the specific priorities of the person with dementia. It can be given to the person with dementia and their family carer together, or to the family carer alone, by telephone, video call or in person.

In the NIDUS-family trial involving 302 pairs of family caregivers and people with dementia, published in The Lancet: healthy longevity, participants were helped to set their own goals. These could enable the person with dementia to carry out more activities, have better mood, better sleep, better appetite, relationships or social engagement, or improve support and well-being. be caregivers.

People in the new support program met with a therapist six to eight times over six months, then received two to four additional phone calls over the next six months. The support provided was adapted to the objectives they set for themselves.

The trial results show 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 period of one year. This was true whether the intervention was delivered via video call, telephone, or in person.

The intervention was delivered by non-clinical facilitators, who received supervision and training. Only 9.3% of the intervention group compared to 13.3% of the control group had moved to a nursing home or died within a year. Researchers will follow trial participants for an additional year to see if the new support helps people with dementia stay in their homes longer.

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

Alzheimer’s Society Associate Director of Research and Innovation Dr Richard Oakley said: “Currently, 900,000 people are living with dementia in the UK and for many, personalized post-diagnosis support is often failing, leaving them feeling isolated and vulnerable. (…) NIDUS-Family has shown that it can help people with dementia achieve their goals of living independently for longer. It is the first post-diagnosis support program that can be delivered remotely and without clinical training, acting as a lifeline for thousands of caregivers around the world. Great Britain.

“We are delighted that the researchers have secured additional funding to take these results to the next level and make the program more inclusive and accessible. This will help deliver the universal care and support people with dementia desperately need.

Lead author Professor Claudia Cooper said: “Because NIDUS-family can be administered by people without clinical training, it has the potential to enable many more people to access post-diagnosis support from good quality. NIDUS-Family is the first easily scalable intervention for people. with dementia, it is proven to improve the achievement of personalized goals, can be delivered remotely and should be implemented in health and care services.

A family caregiver who participated in NIDUS described how it helped the family: “There were a lot of little things that we would never have thought of, but I think the most important thing was understanding how my mother’s mood was affecting her and how she was doing and “Her behavior. So for us to get to the bottom of it and understand that a little bit more, we could handle the whole situation in a different way.”

In the UK, around 885,000 people have dementia. Although national guidelines recommend that everyone with dementia receives personalized support after diagnosis, few do. Almost two thirds (61%) of people aged over 65 with dementia in the UK live at home rather than in care homes. However, unmet needs, poor self-care, home safety risks, and burden reported by family caregivers are common reasons requiring a move to a nursing 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 on dementia and neurodegenerative diseases.