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Case study: Helping people with dementia live independent lives at home

Professor Martin Orrell has led a number of large studies in dementia, helped by several awards from NIHR Programme Grants for Applied Research. He outlines the inspiration behind his latest research - the Valuing Active Life In Dementia (VALID) trial.

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Helping people with dementia live independent lives at home

Author: Professor Martin Orrell

Inspiration from the Netherlands

People with dementia, and their carers, generally prefer to live at home for as long as possible and avoid having to go into hospital or into care homes. Advice and skills training from an occupational therapist could help people with dementia maintain their independence so they’re able to stay at home for longer.

Occupational therapists in practice told us that at the moment they usually only become involved in dementia care when people have more severe symptoms. If they’d been consulted early on, people would have more potential to respond to the therapy and maintain their independence better.

Dr Jennifer Wenborn and I were very impressed by a piece of research from the Netherlands, which tested a complex occupational therapy intervention to help people in the early stages of dementia retain their independence at home.

In the Community Occupational Therapy in Dementia (COTiD) programme, the occupational therapist, the person with dementia and their family carer work together to identify problems in carrying out activities and potential solutions, which are then put into practice. The idea is that occupational therapists help people with dementia to manage difficulties early, so they can maximise their potential.

The Dutch trial of COTiD showed that it could help people with dementia to carry out activities, as well as improved their quality of life and their mood. Carers’ quality of life, mood and sense of competence also improved, and the programme was shown to be cost effective.

Testing early occupational therapy in the UK

Many of the occupational therapists we talked to were very enthusiastic about COTiD, because it makes the best use of their specialist skills to help people cope better with difficulties in their everyday life. To us it was clear that with many highly skilled occupational therapists in the UK, the COTiD model could work very well, but it would need some adaptation.

The Valuing Active Life in Dementia (VALID) study, funded by NIHR Programme Grants for Applied Research, involves testing COTiD in the UK to see whether it is effective and good value for money in the NHS in comparison with usual care.

Led by Dr Wenborn, the programme manager for VALID, we have done a lot of early work on developing and adapting COTiD for a UK context and testing it out with occupational therapists. We’ve also looked at what training people needed, because the health system in the UK is different to the Netherlands. The Programme Grant format particularly suited this model of having to revise and adapt the intervention.

After this long process of adapting and testing adherence, we got a really good quality, well developed intervention that we could measure the efficacy of in a sensible way. We tested out the intervention in a small feasibility study and we’re now evaluating its effect on the functional independence of people with dementia through a large national pragmatic, single blind, randomised controlled trial.

We have recruited over 450 people with dementia to the VALID randomised controlled trial. We expect to finish follow up data collection by February and analyse the findings by May 2018. The impression so far is that people like the COTiD intervention, and the occupational therapists are very enthusiastic about what they’re doing.

Alongside the other studies, we are conducting research into the implementation of COTiD in clinical practice. Looking at potential implementation issues early on was an important part of this study. With a Programme Grant, you can look at implementation all the way through the programme of work, rather than just thinking about it at the end once you’ve got the results.

How occupational therapy might help

If it’s found to be both clinically and cost effective, COTiD could potentially have major benefits for people with dementia and their carers, helping them to cope better and avoid care home admission. What we really want is to help support people with dementia at home and help them manage with a better quality of life for longer.

Also, if the model works well, it could help to change the way that mental health teams for older people operate. Occupational therapists might become involved very early on in the first assessment of people and start helping people manage much earlier. And because the intervention is delivered by an occupational therapist, it’s potentially got very substantial implications for the multidisciplinary make up of mental health teams for older people.

The NIHR funding for the VALID programme of research has also helped to support and develop a number of enthusiastic occupational therapists. These professionals now have significant research experience, enabling them to start or extend their research careers. This has included one occupational therapist carrying out a PhD and another starting a MSc.

Professor Martin Orrell is Director of the Institute of Mental Health at the University of Nottingham.