Beyond the Margins: Accessing support for people with dementia in the community

Research project: A look into how to help people with dementia take control of their own support and care

Lead Investigator: Professor Charlotte Clarke

  • Institution: University of Edinburgh
  • Grant type: Implementation
  • Duration: 30 months
  • Amount: £344,414.36

Why did we fund this research?

Comments from our Research Network volunteers:

‘Poor or lack of post diagnostic support is recognised as a major issue for people living with dementia and improving this situation has to be a priority.’

Project summary

This project aims to develop a ‘Personal Development Programme’ (PDP) for people living with dementia.

PDPs can help people with dementia take control of their own support and care. The programme will be developed and delivered with and for people living with dementia.

It will focus on supporting people with dementia who aren’t accessing support available in the community that is available to them.  

The background

Support groups and peer-support network play a crucial part in supporting people affected by dementia in the community after their diagnosis.

However, many people with dementia are ‘on the margins’ and don’t engage with the support that is available. 

PDPs can help people increase self-confidence and take ownership of their own support. They are commonly used to support people with other conditions and have proven to be beneficial.

However, their use in dementia care is fairly new and we need more research to understand how effective they are. 

The team will develop the Beyond the Margins PDP using findings from two other projects. The first aimed to empowering people with dementia after receiving a diagnosis and the second aimed to improve the understanding of the impact of dementia on people and their support networks.

What does this project involve?

The research team will work with people living with dementia to develop the programme.

Their work will be carried out in three phases:

  1.  Professor Clarke and her team will work with people affected by dementia to develop the programme through a series of workshops, interviews and events. Both people affected by dementia and staff delivering support will be involved. 
  2.  The research team will ask people with dementia to test the programme which will be monitored and evaluated throughout the process. 
  3. The PDP will be finalised based on the feedback and learnings from the evaluation to ensure that it is fit for use as well as sustainable.  

How will this project help people with dementia?

This project acknowledges that people with dementia have different needs so there should not be a ‘one size fits all’ approach to support.

The research team aim to give people affected by dementia greater knowledge and awareness of self-management and personal goals.

It will make sure people affected by dementia are more in control of their own support, empowering them to make more informed decisions about their care in the community.

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