New Therapy for Dementia Patients and their Families

Claudia Cooper, Professor of Psychological Medicine at Queen Mary University of London, led a study that found a new therapy called NIDUS-Family, which helps patients with dementia and their family caregivers achieve personal goals.

The NIDUS-family package of care and support focuses on practical adjustments that people can make, with sessions tailored to the individual priorities of the person with dementia. It can be offered to the person with dementia and their family caregiver together, or to the family caregiver alone, via phone, video call, or in person.

The NIDUS-family experiment, which included 302 pairs of family caregivers and dementia patients and was published in The Lancet Healthy Longevity, encouraged participants to choose their own goals. These could include allowing the person with dementia to participate in more activities, having a better mood, sleep, appetite, relationships, or social engagement, or improving caregiver support and wellbeing.

Those receiving the expanded support package met with a therapist six to eight times in six months before receiving two to four additional support phone calls over the next six months. The assistance provided was suited to the goals they established.

The research results demonstrate that family caregivers and dementia patients who got the NIDUS-family intervention were considerably more likely to meet their goals than those who received their regular care over a year. This was true whether the intervention was delivered via video call, phone, or in person.

The intervention was carried out by non-clinical facilitators, who were supervised and trained. After one year, only 9.3% of the intervention group had transferred to a care facility or died, compared to 13.3% in the control arm. The researchers will follow up with study participants for another year to determine if the increased care helps people with dementia stay in their homes longer.

The new therapy has the potential to be used to support uniform, evidence-based, individualized dementia care throughout the NHS. The findings are consistent with a call from the All-Party Parliamentary Group (APPG) on dementia for a leveling of diagnosis rates and care after a diagnosis, recommending that high-quality post-diagnostic support services for dementia be made more widely available across England.

Dr. Richard Oakley, Associate Director of Research and Innovation at the Alzheimer’s Society, stated, “Currently, 900,000 people in the UK live with dementia, and for many, personalised post-diagnostic support is often lacking, leaving them feeling isolated and vulnerable.” […]NIDUS-Family has demonstrated its ability to assist people living with dementia in achieving their goals of remaining independent for an extended period of time. It is the first post-diagnostic support program that can be administered remotely and without clinical expertise, providing a lifeline to thousands of caregivers around the UK.

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

Professor Claudia Cooper, the primary author, stated, “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 personalized goals, can be remotely delivered, and should be implemented in health and care services.”

More information: 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., The Lancet Healthy Longevity (2024). DOI: 10.1016/S2666-7568(23)00262-3

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