Promoting Independence in Dementia: changing lifestyles – improving outcomes a web based trial of the PRIDE self-management app (PRIDE-app)
Why the research is needed?
In the UK over 800,000 older people have dementia, which can lead to social exclusion, loss of identity and loss of independence due to deterioration in cognition and activities of daily living, the double stigma of age and dementia, and the reduced capacity for social participation. In this way, dementia challenges society, and the individuals and their carers responding to it.
Dementia has profound effects on family carers who, through their actions, save the UK government over £6 billion a year. In the UK the provision of health and social care services for people with dementia costs the nation over £17 billion a year. Despite the enormous costs to individuals and society, less than 10% of UK research funding is focused on health and social care research (EU Joint Programme Neurodegenerative Disease Research [JPND], 2012). The EU JPND research programme has highlighted the need for psychosocial interventions promoting social inclusion, dignity and the positive contributions to society that people with dementia can make.
What is already known about the subject?
Key concerns of people with dementia include loss of power in the relationship with their family, the need to maintain a role outside the family, and a lack of basic information about diagnosis, prognosis and care. People with cognitive impairment and dementia can function below their potential due to stigmatisation, loss of independence and a sense that relatives seek to take over their tasks and run their lives. Low expectations mean that staff and carers may not encourage people with dementia to use their skills or learn new things, further contributing to decline. Hobbies and interests are often lost early in the disease process. A recent review indicated that provision of information and advice can improve quality of life in dementia. This help needs to be delivered as an easy to implement, low cost intervention to improve support and care. Support after diagnosis is critical to enhancing and maintaining the abilities of people with dementia. This study may help improve the experiences people with dementia and carers after diagnosis.
Who we are working with?
We will be working with people with dementia and their family carers, linking up with memory services and community services across the UK. We will also work with the join dementia research (JDR) database to help recruit people into the study. In addition, we will be working with researchers and clinicians with expertise in dementia care as well as organisations such as the Alzheimer’s Society. Lastly, we will be working with Ayup a technology company to ensure that the Promoting Independence in Dementia web application (PRIDE app) is relevant and easy to use for people with dementia and their family carers.
What we will do?
The Promoting Independence in Dementia (PRIDE research programme) has built up the evidence on how social and lifestyle approaches may help to reduce the risk of dementia, but also enhance independence in people with early dementia helping them to manage better and enjoy life more. Work so far has developed the PRIDE social intervention to enhance independence and quality of life for people with mild dementia and the friends and family that support them by enhancing decision making, reducing stigma and encouraging participation in mental, physical and social activities.
We are currently running a small clinical trial using a paper-based version of the PRIDE social intervention to look at the practicalities for carrying out a large-scale clinical trial using the paper-based manual with dementia advisors, in comparison with the usual care group not receiving the manual. As part of this we have developed and field tested the PRIDE app, which now needs to be evaluated as part of a low-cost clinical trial. For the proposed study we will be looking at the potential benefits of the PRIDE app used on tablet computers for people with dementia and their family carers. Participants will be randomly selected to either receive the app immediately after recruitment into the study, or be put on a waiting list to receive the app 3 months later. The waiting list will act as our control group for identifying the benefits of the app towards quality of life.
How are patients and the public involved?
We will involve patients and family carers in consultations in discussions about how user friendly the app is and how to improve it, in a PPI reference group and in various points of the study including interviews for the PhD candidate, feedback on information sheets/consent forms and advice on implementing and disseminating the app and the results
What the benefits will be?
If the PRIDE app is found to be effective, we would expect that quality of life for people with dementia improves. We would also expect them to have better morale and better maintenance of their usual activities, reducing stigma.
When the findings will be available?
We would expect the findings to be available in 2023, just after the PhD has been completed.
How we are planning for implementation?
We have developed an easy-to-use app which we would hope to be able to implement effectively across the memory services in the UK via the Memory Services National Accreditation Programme, which includes almost 100 services.
Dr James Roe, James.Roe@nottingham.ac.uk.