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NIDUS-Family: Programme supports people with dementia to live independently

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6 February 2024

Findings from the study examining the first-ever post-diagnostic dementia support programme are a ‘rare positive result’ and a ‘lifeline to thousands of carers across the UK’

The ‘New Interventions for Independence in Dementia’ or NIDUS-family programme focuses on practical goal setting based upon the priorities of the person living with dementia. The intervention can be delivered to either the person with dementia and family carer together, or the family carer alone.The nature of the goals included improvements in mood, activities, relationships, appetite and sleep. Participants then received tailored therapist support at intervals over a year.

The programme was co-designed with people living with dementia and family carers. It was able to be delivered in a variety of ways to suit the participant and this adaptability meant the trial was able to continue during the pandemic.

The results of the trial have been published in the Lancet Healthy Longevity and show that those on the programme were more likely to achieve their set goals than those on usual care over a year.

Lead author, Professor Claudia Cooper, Professor of Psychological Medicine and lead of the Centre for Psychiatry and Mental Health in the Wolfson Institute of Public Health 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.” 

Dr Richard Oakley, Alzheimer’s Society Associate Director of Research and Innovation, said:

"This 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 study was supported at a number of our mental health trusts across London. University College London sponsored the study with funding from the Alzheimer’s Society.

The published findings are available to read in the Lancet Healthy Longevity: A 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

You can read further details on the findings at Queen Mary University of London Wolfson Institute of Population Health: ‘Rare positive result' in trial of new support intervention for people with dementia and their family carers

The Alzheimer’s Society also have an article discussing the results: NIDUS-Family programme could enable people with dementia to live more independently

The programme has also attracted media attention in the Standard (New therapy for dementia patients ‘may help them live independently for longer’) and the Independent (New therapy for dementia patients ‘may help them live independently for longer’)



Image: Paul Theodor Oja