Ninety people who are living with dementia and their carers from across north Wales, have contributed to new research findings which have shown that personalised cognitive rehabilitation therapy can help people with early stage dementia to significantly improve their ability to engage in important everyday activities and tasks.
The large-scale trial presented at the international Alzheimer’s Association International Conference (AAIC) 2017 today (Tuesday July 18), found that cognitive rehabilitation leads to people seeing satisfying progress in areas that enable them to maintain their functioning and independence.
The Goal-oriented Cognitive Rehabilitation in Early-stage Alzheimer’s and Related Dementias: Multi-centre Single-blind Randomised Controlled Trial (GREAT) trial involved 475 people across eight sites in England and Wales. Half of them received ten cognitive rehabilitation sessions over three months, and the other half did not. The group receiving the therapy then took part in four “top-up” sessions over six months. The research was funded by the National Institute for Health Research Health Technology Assessment programme.
The researchers found that those who took part in the therapy showed significant improvement in the areas they had identified, after both the ten week and “top-up” sessions. Family carers agreed that their performance had improved. Both participants and carers were happier with the participants’ abilities in the areas identified.
Cognitive rehabilitation involves a therapist working with the person with dementia and a family carer to identify issues where they would like to see improvements. Together, they set up to three goals, and the therapist helps to develop strategies to achieve these goals.
The goals participants chose were varied, as dementia affects people in a wide range of ways. Some participants wanted to find ways of staying independent, for example by learning or re-learning how to use household appliances or mobile phones. Some wanted to manage daily tasks better; for example a participant from north Wales, featured on the BBC’s Horizon programme in May 2016 worked with a therapist to develop strategies to prevent him burning food when cooking meals. Others wanted to stay socially connected, and focussed on being able to remember details like the names of relatives or neighbours, or improving their ability to engage in conversation. Sometimes staying safe was important, so strategies focused on things like remembering to lock the door at home or withdrawing money safely from a cashpoint.
Professor Linda Clare, of the University of Exeter and formerly of Bangor University, who led the research, said: “We now know that cognitive rehabilitation effectively supports people to achieve the everyday goals that matter to them. The next step is to quantify benefits such as whether this approach delays the need for people to go into care homes by supporting them to live independently for longer. This could have important financial benefits for social care. We must also assess whether the therapy can be integrated into how practitioners routinely work, so that more people can have access and are supported to live better lives with dementia.”
Bangor University recruited the north Walians to take part in the research, and the University’s NWORTH Clinical trials Unit team were involved in designing the study methodology; they designed and carried out its statistical analysis, developed, tested, deployed and maintained the study`s electronic data capture systems and provided quality assurance input for all aspects of the sizable, multi-centred trial.
Dr Andrew Brand, Trial Statistician for the study commented “It was great to work with such an experienced trial team and to be involved in research tackling dementia, which is such a prevalent and debilitating condition. We congratulate the team on their significant achievement.”
Prof Bob Woods of the University’s Dementia Services Development Centre, led the research from Bangor University and said: “Having been involved in developing this approach over a number of years it is exciting to see the evidence for its benefits becoming clearer. We are grateful to all the participants and families for giving readily of their time, and to our colleagues at Betsi Cadwaladr University Health Board, who made it possible for north Wales to be the top-recruiting site. We now plan to continue working closely with them in making the approach widely available in the years to come.”
Dr Ola Kudlicka, who managed the trial, said: “We know there’s a great deal that can be done to support people to live well with dementia. Our research is about finding out what matters most to individuals and working with them to find strategies to manage important tasks and maintain their interests. Contrary to popular belief, our trial shows that people with early-stage dementia, given the right kind of support, have the capacity to learn and to improve their skills. We aim to support them in their right to live a fulfilling and happy life and be as independent as possible.”
Alzheimer’s Society funded an initial pilot study for this work to make sure that the methods were acceptable for people affected by dementia and is now funding an implementation study so the researchers can work with NHS and social care providers to adapt the therapy for use in real-life practice.
The charity’s Head of Research Development, Colin Capper, said: “Learning to live well with dementia is vitally important for the people affected and their carers. The personalised nature of this therapy highlights that everyone with dementia is different and that tailored approaches to care and setting individual goals can show clear benefits. We are thrilled at the results of this study and look forward to helping this important work to move forward and be brought closer to the people who need it.”
The trial was a collaboration and also involved the Universities of Bradford, Cardiff and Manchester; Kent and Medway NHS and Social Care Partnership Trust; London School of Economics and Political Science; Northumberland, Tyne and Wear NHS Foundation Trust; the Research Institute for the Care of the Elderly (RICE) in Bath; Kings College London; and Dementia Pal Ltd.