NIDUS-Family programme could enable people with dementia to live more independently

NIDUS Centre of Excellence

Alzheimer’s Society is committed to providing help now and hope for the future, for people living with dementia. 

One way in which we are realising this vision is by funding transformative research that will improve care and support for people living with dementia. That is why, in 2019, we created three Centres of Excellence, focusing their research on enhancing dementia care. 

We asked our staff, volunteers and people affected by dementia for their input to make sure the centres focussed on topics that were the most important and impactful. 

We learned that these key areas were: support after a diagnosis, help with independence at home, improvements to quality of life, and care in advanced dementia.

Enabling carers look after people with dementia at home

One of the centres was set up at University College London and is now running at Queen Mary's University London. 

It was created to run a project called ‘New Interventions for Independence in Dementia’ project – or NIDUS for short. 

The project is led by Professor Claudia Cooper and aims to understand how to help carers look after people with dementia at home. 

The NIDUS-family support programme

As part of the project, the researchers developed the NIDUS-family programme. It was co-designed with unpaid/family carers and people living with dementia and designed to empower the carers to provide high-quality care to people living with dementia. 

At the beginning of the programme, the participant pairs (of a family/unpaid carer and a person living with dementia) would discuss their story with a facilitator and would set goals which focused on allowing them to live independently at home for as long as possible.

These goals were then mapped to a menu of modules that the participant pairs could complete. These included information and strategies to address specific needs like exercise, activity and mobility; relaxation; and sleep, diet and healthy routines.

To test whether the programme worked, the researchers first tried it out on a small number of participant pairs to make sure that the programme was accessible.

Helping people with dementia reach their goals

Then they tested the NIDUS-Family support programme with over 300 people living with dementia and their unpaid carers.

The trial showed that the programme successfully enabled people reach their goals regardless of the type or stage of dementia.

One carer even said that the NIDUS-Family programme had given her and her husband “two more Christmases together” at home. 

What's next for the NIDUS-Family programme?

Through funding from the NIHR, in 2024 the NIDUS-Family team will look at implementing NIDUS-Family into health and social care practice. The research will contribute to addressing inequalities, by exploring how the therapy can be rolled out inclusively. This includes adapting the programme for non-English speaking UK populations. 

Alzheimer’s Society Associate Director of Research and Innovation, Dr Richard Oakley, 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.”