Remotely delivered support programme improves quality of life for people with dementia

The NIDUS-Family package of care uses goal setting to help people with dementia live well at home for longer.

Approximately 982,000 people in the UK have dementia, and the costs of providing dementia support across health and social care are expected to rise to £80.1 billion by 2040. Finding ways to support people with dementia to continue to live in their own homes is likely to improve wellbeing, reduce inequalities in accessing treatment, and be cost-effective.

New research published in The Lancet Healthy Longevity, led by Queen Mary University of London in collaboration with UCL, reveals that NIDUS-Family is the first personalised care and support intervention to demonstrate cost-effectiveness while improving the quality of life for people with dementia.

The programme focuses on practical changes people can make, with sessions built around the specific priorities of the person with dementia – such as increasing time spent doing enjoyable activities, improving sleep or for carers to have more time to focus on their own wellbeing. 

It can be delivered to the person with dementia and their family carer together, or to the family carer alone, by phone, video-call or in person.

As a result, people with dementia who took part in the study and experienced the new interventions (204 people) cost the NHS and social care £8,934 (37%) less on average over one year, compared to people who did not receive the additional help (98 people).

These cost savings are due to less time spent in hospital and the need for less state-funded social care, compared with the control group.

Meanwhile the cost of the intervention itself was just £346 per year.

Senior author, Professor Rachael Hunter (UCL Epidemiology & Health) said: “Given the challenges associated with improving care for people living with dementia, it’s great to see an intervention that delivers tangible benefits to patients and their families as well as potentially having a positive financial benefit to the NHS.” 

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. 

Although current national guidelines recommend that everyone with dementia receives personalised, 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.

Lead author, Professor Claudia Cooper (Queen Mary University of London), who began the study while based in the UCL Division of Psychiatry, said: “The new therapy has the potential to be rolled out to support consistent, evidence-based personalised dementia care across the NHS.

“Given NIDUS-Family helps people with dementia and their families, and also costs less, it should be widely available within routine care.”  

The research was funded by the Alzheimer’s Society.

Dr Richard Oakley, Associate Director of Research and Innovation at Alzheimer’s Society, said: “Dementia devastates lives and around one million people in the UK have the condition, yet there are very few widely available therapies offering personalised support to help people improve their day-to-day life and wellbeing.

“Therapies on offer tend to be expensive, difficult for people in remote areas to access, one-size-fits-all, and need to be delivered by clinicians so are reliant on our over-stretched care system. That’s why the NIDUS-Family programme is a game-changing intervention for people with dementia, and we’re really proud to have funded this work as part of Alzheimer’s Society’s Centres of Excellence initiative.

“This research shows we have at our fingertips a cost-effective, realistic solution offering people living with dementia access to tailored, personalised support to achieve their own goals, which we would like to see as an option in routine care.”

Patient story

A family carer who took part in NIDUS described how it helped their 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.”  

Links

• Research in The Lancet Healthy Longevity
• Professor Rachael Hunter's academic profile
• UCL Epidemiology & Health Care
• UCL Population Health Sciences
• UCL Divison of Psychiatry
• UCL Brain Sciences

Image

• Credit: PIKSEL on iStock

Media contact 

Poppy Tombs

E: p.tombs [at] ucl.ac.uk