Peer to Peer Resources

National project
Award: £500-£7000 open funding available
Timescale: June 2016 - March 2019

Project aims

We firmly believe that people living with dementia and carers in Scotland have an enormous amount of knowledge and helpful information to share with each other.

This ‘person with dementia to person with dementia’ and ‘carer to carer’ support is sometimes called ‘peer support’.

This funding was to enable people with dementia or carers to produce their own resources that would help people understand dementia better and allow people with dementia and carers to equip and encourage each other.

They can also be valuable source of education and information for people who want to know more about dementia, e.g. hospital or care home staff, relatives or friends.

Background

One of the most influential projects we funded in 2015-16 was a booklet produced by a person with dementia called Agnes Houston, in collaboration with other people with dementia, on Sensory Challenges (read more about this project here). 

The Sensory Challenges booklet has made carers, professionals and others sit up and take note of what people with dementia are saying. It has influenced the re-writing of training and guidance for professionals in a number of organisations. 

The booklet has been read by at least 33,000 people in Scotland alone. It has been translated into Czech, Welsh, Chinese, French and Japanese (in those countries). This is a concrete example of empowerment.

More Information

It was clear that these resources could be of inestimable value. Therefore, we offered awards of £500 to £7,000 to people with dementia and carers to create peer to peer support resources, e.g. leaflets, DVDs, videos, etc. 

We funded resources that genuinely help other people with dementia or other carers, that are practical and which truly reflect the experiences and needs of people living with dementia and/or carers.

Due to the success of the Sensory Challenges booklet we went on to fund further peer-to-peer resources through which people with dementia and carers can raise awareness of a particular issue, offer advice or share learning that will help others. 

So far, we have funded:

  • Dementia and Sensory Challenges - read more about this project here
  • 'Driving and Dementia' - one man's experience of having to give up driving. Read more about this resource here
  • 'Travelling Safely with Dementia' resources produced by the Scottish Dementia Working Group.  Watch their video and read the booket here
  • 'Come On In' - guide written by the Care Inspectorate and Campbell Snowdon care home to help friends and family of people living in care homes make the most of their visit.  Read more about this project here 
  • BSL Videos for deaf people on the different types of dementia and diagnosis by the British Deaf Association (BDA) Scotland.  Find out more here
  • 'Top Tips' for people living with dementia, by the Scottish Dementia Working Group. Read their booklet here
  • ‘Core Principles for Involving People with Dementia in Research’, produced by the Scottish Dementia Working Group. Read more about Core Principles here
  • ‘Living and Learning with Dementia’ - a film made by Alzheimer Scotland and the Scottish Dementia Working Group. Find out more and watch the film here
  • A service and support directory and care checklist for carers of people with dementia. Read about our carers resources here
  • Urdu/Punjabi dementia awareness resource video produced by MILAN Senior Welfare Organisation. Find out more here
  • Come and Sing Café video - this is a 'How to’ video for setting up and running a Come and Sing Café for people affected by dementia.  Read more here
  • ‘Taste, Smell and Dementia’ booklet and video from Outside the Box ‘Food Buddies’ and Agnes Houston.  Find out more here
  • Easy-read, self-management and resilience resources for dementia carers, produced by NDCAN.  Read more here
  • Two video installations to capture the voices of people with dementia: ‘Things I Like About Dementia’ and ‘The Fog’ – Christeen Winford and artist Edward McLaughlin.  Read more and watch the videos here
  • Self-management multi-media toolkit - produced by Innovations in Dementia (in progress)
  • Short video and EP record of four songs based on unpaid dementia carers’ experiences (in progress)
  • The Coalition of Carers in Scotland's 'Peer to Peer Resource Project' and 'What to Expect' guidance leaflet can be found here

Outcomes we'd like to see

  • resources are used by professionals, e.g. hospital or care home staff as educational and informational tools around dementia
  • increased understanding of dementia and the experiences of those living with the condition and / or their carers in general
  • people with dementia and carers equip and encourage each other, increasing their confidence 
  • people with dementia and/or carers are empowered to speak out about their experiences