Service innovation to close gaps in provision - Dementia Allies in Canterbury

The purpose

To improve the experience of people with dementia. In some areas people with dementia were able to access a Dementia Navigator after getting their diagnosis, but feedback from many people suggested this was not meeting their needs: 

• ‘...no immediate support following a diagnosis which left people feeling abandoned and as if they have been dropped off the edge of a cliff... we knew that the information was out there but we needed someone to direct us to it at that point when you feel lost.’ (Chris Norris ).

To provide a pilot project: a new peer support service for people diagnosed with dementia.

• 'It offers a different perspective  from that of a professional .The ambition is that this project will  challenge myths and fears and  engender hope that you can still live your life with dementia’ (Dr Joanna Vidal, Clinical Psychologist Kent and Medway Partnership Trust).

Preparation

Hearing the experiences and observations of people following their diagnosis prompted Chris Norris to discuss this with members of the Forget-me-nots group in Canterbury. (Members of the group (30 in total) are all people with dementia and their supporters. The group is funded by the Friends of Mental Health and supported by the Kent and Medway Partnership Trust.)

The partnership - Helen  Greatorex (CEO-Kent and Medway Partnership Trust) committed  the  time of a Psychologist and the Voluntary Services  teams .Psychology students from the University of Canterbury were engaged and the Alzheimer’s Society saw the opportunity to support this opportunity as part of their existing Dementia Support service work.
 

What happened  

The project proposal was developed following a discussion within the Forget-me-Nots group. 

Six members of the Forget me Knots group formed a working group, knowing that at any one time  four members would  be required  to make decisions.

They worked with partners over the following 18 months to develop and co-design every aspect of the ‘Dementia Allies’ project, taking it from   an initial concept idea through to the launch in January 2019 .

The working group decided that a Dementia Support Worker from the Alzheimer’s Society would play a pivotal role in facilitating meetings between the Volunteer Dementia Ally and the person who has been referred.

• This would enable the person with lived experience, to provide the peer support whilst the Dementia Support Worker could listen and respond to the other service needs identified during the visit.

The working group talked about the role of the Volunteer Dementia Ally and the scenarios that they may face.  Knowing that everyone’s dementia is unique to them they agreed that  it’s impossible to plan for every eventuality.
 

The Results

After eighteen months of hard work, absolute determination and the energy that has come from people with lived experience... we have been able to bring this initiative to life.'.(Helen Greatorex – CEO Kent and Medway Partnership Trust)

Dementia Allies support people following their diagnosis by meeting with them alongside a Dementia Support Worker to: listen, share their own experiences of being diagnosed, talk about how they found it and share what has continued to help them adjust to life with dementia. A debrief session between the Ally and the Dementia Support Worker takes place after every meeting and all of the Allies access group supervision sessions.

There are ten Volunteer Dementia Allies, all of which have been through an interview process and mandatory volunteer training.
 

What changed for people with dementia 

• ‘I saw this as a wonderful opportunity to support others… to show them that this is not the end of life, but a new beginning’ (Carol Fordyce)
• ‘I can help those going through similar situations …. To live a full and rewarding life’ (Anne Marie Norris)
• ‘Being involved in this has led to me enjoying life again... being able to help people through a very similar period in their life’ (Keith Griffiths)
   

Learning points

Having an existing trust based relationship with the local Kent and Medway Partnership Trust (KMPT) enabled the group to develop the proposal together with local partners from the very beginning.

• ‘There’s no quick fix to involving people living with dementia. You have to be prepared to take your time and discuss things and review things again. It seemed to take a long time for us to agree on the design of the leaflet but we got there eventually. ‘ (Liz Taylor)
   

Key contact if you would like to find out more:

Alzheimer’s Society's team in East Kent. Email: [email protected].