Supported self-management
How can we develop and implement a supported self-management approach for people with dementia or another neurodegenerative condition?
What are we trying to find out?
Many people want to stay as independent as possible and to have some control and choice over their condition. ‘Self-management approaches’ enable people to take an active role in their own care. In this project, we want:
- To explore what is already known about self-management among people with dementia and other neurodegenerative conditions, including how practical and effective it is, and how much it costs.
- To understand how and why the self-management approach creates benefits for both people and services.
- To identify what a supported self-management approach for people with dementia or another neurodegenerative condition should look like.
- To recommend ways in which a supported self-management approach could be put into practice in health and social care services, and adapted to regional and local needs.
Why is this important?
Self-management is about equipping and enabling people to be active partners in their care and exercise choice and control. This means knowing how to cope with the challenges of their condition and being able to navigate health and care services to get what they need. It does not mean leaving people to manage alone but represents a partnership within a network of services and support.
When people are more able to self-manage, it reduces demand on services as people are better equipped to cope with difficulties. Supported self-management is key to developing personalised health and social care services that address ‘what matters’ to the person, thus providing more targeted and cost-effective care.
Self-management approaches have not yet focused sufficiently on people with dementia and neurodegenerative conditions. However, we know that people with mild to moderate cognitive impairment can engage in supported self-management, including developing strategies to manage symptoms, sharing in decision making, and managing personal budgets. Here we explore the potential for developing this capability.
How are we going to do it?
- We will review the existing evidence to understand:- what we know about self-management, both formal self-management approaches and more informal use of self-management strategies by people living with these conditions,- theories and concepts that help to explain how and why self-management approaches work, and for whom they work.
- We will fill in any evidence gaps. This might include interviewing people living with a neurodegenerative condition, reviewing evidence relating to people with other conditions where cognitive impairment can play a part, or reviewing evidence about other approaches related to self-management.
- We will discuss the evidence with our Knowledge Exchange Community. We will jointly- outline what a supported self-management approach might look like and how to put this into practice- identify enablers and barriers to adopting a self-management approach and how to navigate the barriers
– provide recommendations about the proposed supported self-management approach including local adaptations.
Who is involved?
Professor Linda Clare (Exeter) is leading the project with colleagues Professor Kaarin Anstey (University of New South Wales Sydney) and Professor Claire Hulme (Exeter).
Two experts by experience are part of the project. They link the project with our broader Involvement Network.
How will we share our findings?
We will
- Prepare a report and a policy brief
- Produce targeted information for commissioners, service providers and practitioners, which can be shared with key policy and health and social care audiences
- Seek to prepare condition-specific reports jointly with relevant organisations
- present the findings in a webinar
- provide information for people living with neurodegenerative conditions and their families
- publish at least one scientific journal article