Blog: What's it like to be part of About Dementia's lived experience panel?

Meaningfully involving people living with dementia and their unpaid carers is at the core of what we do here at About Dementia. For our first experience of grant funding, this was no different.  

We launched our Empowering Dementia Friendly Communities Fund in February this year, thanks to funding from the Scottish Government. You can view our blog about the funding partnership here. The fund was designed to support new and existing Dementia Friendly Communities across Scotland and their community-led approaches to supporting people affected by dementia.  

Once the fund launched, we formed our lived experience assessment panel, and we were delighted to have 5 members on the panel: 2 people living with dementia and 3 current or former unpaid carers. It was important for us that these were paid positions at £20 per hour to recognise not only the importance of this role but also the value of our panellists’ time and expertise.  

We received 19 applications to our Empowering Dementia Friendly Communities Fund and 15 of those were passed onto our panel for assessment and decision-making. We had 3 assessment panel meetings in total to discuss their assessment of the applications based on the fund criteria and reach a consensus on which projects should be awarded funding. We funded 5 projects in total - you can read more about who we funded in one of our recent blog posts here. 

We wanted to share a little bit about the process and what we learned along the way. What better way to do this than to ask our panel members about their experience? We chatted to Myra and Mike about what it had been like to be involved:   

Q: How was your experience being a member of the assessment panel? 

Mike: I thought the panel was a very good mix of people living with dementia and unpaid carers. This was my first involvement with grant applications, and it was a good learning process for me, [learning] from other members from their own experiences on grants applications. I have certainly learned a lot about the whole process. I enjoyed going through all the different applications, it was pleasing to know that there is so much great work and good organisations involving dementia in Scotland.   

Myra: I was privileged to be on the assessment panel for the About Dementia funding programme. I had previous experience of being on funding assessment panels with the Life Changes Trust. Each experience was different and I always learn something new. I enjoyed working as a team and listening to other people's views.

Q: What was your favourite part of being a member of the assessment panel?  

Mike: I thought we worked very well as a team. Our team meetings were a good platform for us to exchange our assessments, we listened and valued each other's suggestions.  The two of you [Adam and Jen from About Dementia team] were excellent Facilitators.

Myra: I enjoyed reading the applications and learning the width and breath of local initiatives applying for funding. This broadened my local knowledge of services and I got to know what was happening across Scotland to support people living with dementia and unpaid carers. Some of the applications were very detailed and to expand my own knowledge of the geography and local authority areas, I did extra research about the area and organisation. This helped clarify points required in the assessment process. You are working on [your] own doing the individual review and making your assessment on each individual application...I also enjoyed our panel discussions which were very helpful in confirming our decisions regarding individual applications and reaching consensus. 

Q: What would you say to someone who is thinking about getting involved in future assessment panels? 

Mike: I know that the funding has gone to 5 organisations this time round; but I would encourage anyone else to be involved in future assessment panels and bring in fresh ideas. 

Myra: I enjoyed being one of an enthusiastic team and would not hesitate to recommend this experience to anyone who can devote the time to reading applications and attend group meetings to discuss and make decisions on the awards. It is very satisfying. It was a short turnaround and timescale, so required commitment and prioritisation. Knowing your decisions can help other people, in a similar situation that you have or had experience of, is very rewarding and worthwhile.  

We are very grateful to all our panellists for dedicating their time and skills to this process. We are currently planning our next round of funding which will be open for smaller, grassroots organisations to apply to this summer. We are very excited to be forming a lived experience panel to design the grants programme from the outset. Our panel will co-produce the fund criteria and design the application process in June as well as being involved in the assessment of applications received in August/September.  

If you are a person living with dementia and/or a current or former unpaid carer and like the sound of being involved with our panel, please get in touch with Jennifer at Jennifer.kean@agescotland.org.uk or on 0131 378 7283. She’d love to hear from you! There is no requirement to be involved in all the stages of this upcoming fund - you can choose to be involved in just one part, or dip in and out with what works for you. We work with our panellists so that they can participate in a way that is right for them.