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Case study: Goal-oriented cognitive rehabilitation for people with early-stage dementia

Therapy to help people live well with dementia

For people living with early-stage dementia, difficulties with memory, planning and concentration can make it difficult to carry out normal daily activities. As dementia progresses, people find it harder to perform their regular activities and self-care, gradually leading to a loss of independence.

Support for people living with dementia is offered under the NHS’s Well Pathway which aims to deliver high-quality, evidence-based recommendations in each phase of the pathway: preventing well, diagnosing well, supporting well, living well and dying well.
To support this aim, and to improve the impact of dementia research evidence available on “Living well with dementia”, the NIHR HTA Programme commissioned the “Goal-oriented cognitive rehabilitation in early-stage Alzheimer's disease: multi-centre single-blind randomised controlled trial” (GREAT).

Professor Linda Clare, Professor of Clinical Psychology of Ageing and Dementia at the University of Exeter, led the multidisciplinary GREAT research team to develop cognitive rehabilitation (CR) therapy for people living with early-stage dementia to help them manage some of the daily challenges they face.

Professor Clare explained that: “Our work focuses around supporting people to live as well as possible with dementia, helping them retain as much independence and functional ability as possible.”

Giving people more independence

Cognitive Rehabilitation is designed to help people with mild dementia learn strategies that will help them function better in everyday life. Each patient and their therapist find several goals that they may struggle with, such as remembering names and faces and managing their shopping. The therapist then works with the patient and their family or carer to find ways to address them and build on the patient’s strengths. 

Professor Clare and her team of specialists recruited patients for the study with support for some sites from the NIHR Clinical Research Network’s Dementias and Neurodegeneration specialty group and Join Dementia Research. These organisations helped to access accredited memory clinics and assisted with identifying and contacting participants who then underwent all assessments and therapy within their own homes.

We were fortunate to secure NIHR funding through a dementia-themed call. We could not have done this trial without the support of NIHR and the clinical research networks in England and Wales.
Professor Linda Clare, GREAT Chief Investigator

The resulting group of 475 participants with clinically diagnosed early-stage Alzheimer, vascular or mixed dementia were randomly assigned to two groups across eight NHS sites in England and Wales. One group received ten sessions of CR over three months, followed by four top-up sessions over six months. The second group of control participants were able to set goals but received treatment as usual. 

The results after the first three months were promising. Patients who underwent CR therapy improved their functioning in relation to their targeted goals. While the control group also set goals, their functioning in those areas did not improve. 

When the patients were assessed six months later, patients who underwent CR continued to benefit from the therapy, indicating that the intervention had a lasting impact and could help them to function better and more independently at home. The results from the GREAT trial have been published in the International Journal of Geriatric Psychiatry.

The trial received positive feedback from participants and their carers, who said that CR had improved their confidence and helped them adjust to living life with dementia. Brian took part in the GREAT trial, focusing on his goal of improving his independence. He had been diagnosed with Alzheimer’s disease in 2012 and experienced memory difficulties and a loss of confidence. 

A year after the study ended, Brian still used the techniques to maintain some independence. He said: “I do a lot of shopping on my own now, and that’s really important to me. It means I get out of the house and talk to different people.”

The trial helped me find strategies that made a real improvement to my life, and I’m sure it could help others too.
Brian, GREAT participant

A participant’s family member explained how CR had also helped their relative’s confidence: "...sometimes just reaching his goal, being able to do it after a few days. Just little things like that, they help I think." 

Reflecting on the benefits of CR for those affected by dementia, Professor Clare commented, “Cognitive rehabilitation aims to enable people with mild-to-moderate dementia to function optimally in those aspects of daily life that are important to them. It is genuinely person-centred as the focus is on individual goals, and this means it is also flexible and adaptable to different settings or cultures.” 

The study also assessed the costs of delivering CR to people and found that the approximate cost under trial conditions was £1736 per patient. The actual cost of delivering CR within a service is likely to be less as the therapists would eventually be trained and supervised internally, and fewer CR sessions may be required.

Influencing policy and practice

The research has had a significant impact on policy, with the NICE guideline for dementia (2018) recommending that CR should be considered to support functional ability in people living with mild to moderate dementia.

The GREAT trial results were discussed at a national consultation on dementia at the House of Commons in 2016. In 2018 the research team also discussed their findings with the Alzheimer’s Society task force for dementia research. In 2019 the team’s experience of CR was presented at the US Department of Health’s Human Services National Alzheimer’s Project Act advisory committee. Professor Clare is currently contributing to a World Health Organization development group that is outlining a package of rehabilitation interventions for people with dementia.

Commenting on the GREAT trial and NICE’s recommendation, Dr Richard Oakley, Head of Research at Alzheimer’s Society, said: 

With the number of people with dementia set to rise to one million by 2025 and limited interventions available, we must ensure evidence-based programmes like this are available to those with dementia who need it.

He continued, “This is why Alzheimer’s Society is calling for it [cognitive rehabilitation] to be offered by commissioning services across the nations.”

Following on from the successful trial, the GREAT research team was awarded a grant of nearly £400k by the Alzheimer’s Society to put CR therapy into practice in NHS memory services and providers of home and community care services. This has enabled healthcare professionals and carers of people living with dementia at 12 NHS trusts and social care providers to adapt CR therapy to real-life practice. 

So far, 111 practitioners have been trained and 82 people with dementia have completed a course of CR, with the results showing that CR therapy is as effective in real-life settings as it was in the GREAT trial. Half of the organisations involved plan to continue providing CR as part of their service beyond the end of the project.

The team have continued to share their findings widely in other influential international settings such as the 2019 Sputnik Rehabilitation Centre’s annual conference in St. Petersburg, the 2020 Rotman Research Institute Conference in Toronto and the Memory Team Conference organised by the Norwegian National Advisory Unit on Ageing and Health in 2020.