Participation
National Conversation on Dementia Strategy
November 11, 2022 by Jen Swan No Comments | Category consultation, Get involved, Guest blog, Our work, Participation in action, Scottish Government insights
Scotland’s new dementia strategy is currently being developed. I recently caught up with Aidan and Sandhra from the Dementia Policy Unit within Scottish Government. We discussed how they are involving lived experience and other experts in the development of this new strategy, and how you can get involved too!
What is a Dementia Strategy?
A broad range of dementia stakeholders have asked for a new national strategy that sets out clear priorities for how we will support people living with dementia, and demonstrates we have learned lessons from the pandemic.
We are keen for the strategy to discuss dementia in its broadest sense. That means talking about prevention and living well with dementia as well as understanding the best ways to provide care and support. We are also keen that it reflects innovations in practice being delivered across a wide spectrum of areas here in Scotland, and internationally. This requires making connections right across government, and exploring the potential for new partnerships and new approaches or ways of working.
We also want to take an outcome focussed approach, ensuring that we are trying to deliver what people have told us is important to them. In doing so, we want to broaden the understanding of what dementia is and hear the aspirations and expectations of people living with dementia and their carers. We want to work with people with lived experience to understand how we can enable the delivery of support that works for them and their circumstances.
What is the “national conversation to inform a new Dementia Strategy”?
We are inviting people living with dementia, their families, and carers, as well as anyone with an interest in Dementia to tell us:
- What does dementia mean to you and those around you?
- What supports work well for you?
- What challenges need to be addressed?
- How would addressing these challenges change lives?
- What do we need to build on/learn from what has been done before?
People can respond to these questions online. We are also running a series of online and in-person discussions to make it as easy as possible to contribute. Some of these events have already taken place but we have 1 upcoming event:
The responses will feed into a new strategy – driven by the National Dementia Lived Experience Panel – which will provide tangible ways to improve the lives of those living with the condition.
To quote our Minister (for Mental Wellbeing and Social Care) Kevin Stewart:
“Scotland has a track record in supporting people living with dementia, as shown by our world leading commitment to provide immediate support in the first year after people receive a dementia diagnosis.
“If we are to improve that record further, we need to put people and carers at the vanguard of our policy work – helping us develop a new story together that improves the understanding of dementia and allows more people to live well with it. ”
You’re taking a co-productive approach to designing the strategy, tell us about that?
We want to involve as many different groups of people as possible and lived experience will be at the heart of the strategy development. We want it to be engaging and interactive through listening to people and learning from previous experiences. Our National Lived Experience panel has a key governance role in the Strategy’s development and formation, and we are also keen to work with them on its subsequent delivery.
Tell us more about the National Dementia Lived Experience Panel (NDLEP)
Earlier this year we established a National Dementia Lived Experience Panel. Applications were overseen by an independent assessment group which included lived experience, academia, policy and practice. We received 56 applications from across Scotland and the assessment group agreed an equal split of carers and those with a diagnosis of dementia who now make up the panel.
The panel has already helped us set the questions we are asking for our national conversation. It will also play a key role in analysing the responses we receive and turning these into a new, forward-thinking strategy.
From ongoing conversations with our partners during the implementation of the Covid-19 Action Plan, it was clear that we needed to expand our lived experience engagement. People living with dementia and unpaid carers wanted a direct voice into government to share their experience and inform policy development alongside other groups, organisations and partners.
Input from this panel, the National Conversation and our Strategy Advisory Group (we explain what this is in a minute!) will help ensure this strategy sets out a ‘new story’. Helping us all understand what we all need to do together to ensure people living with dementia and their families/carers can be supported to live well, in a way that suits them.
What has happened with the panel so far?
The panel first met in September at the Dementia Services Development Centre in Stirling. They helped to design the questions set out in the national conversation. They were officially welcomed by the Minister via a pre-recorded message. The panel members also had the opportunity to:
- get to know each other
- agree what the Panel’s role is
- agree how and when meetings take place and how they should run
- agree the questions we ask organisations and individuals on the new dementia strategy.
Our Lived Experience panel’s preference was for a hybrid meeting. We were able to arrange this and used the Dementia Services Development Centre’s facilities.
The first part of the meeting focused on getting to know the members. The second session focused on the vision for the new strategy and national conversation questions.
Facilitation for Lived Experience panel is being undertaken by colleagues in the Dementia Policy Unit. We are also covering all reasonable costs for travel expenses. Since our first meeting, we have asked for constructive feedback and are using this feedback to make improvements for future meetings and how we work together. We are continuing to learn and improve.
What’s next for the panel?
We’ve been allowing the engagement to take place but will be sharing some very early feedback on what’s coming out of the engagement so far at our next meeting on 29th November 2022.
We are expecting Kevin Stewart, Minister for Mental Wellbeing and Social Care, to join the panel and hear more from its members.
We’ve learned a lot so far and are looking forward to working more closely with the panel over the coming months and years.
Tell us more about the Strategy Advisory Group.
Our Strategy Advisory Group is made up of a wide range of professions and practitioners including members from equality organisations who have been asked to join to share their professional views and expertise.
This group sits alongside our lived experience panel and will have a role in informing and shaping Scotland’s dementia policy, as part of the governance arrangements of the new national dementia strategy.
Who’s the discussion for, and how can people get involved?
Everyone with an interest in dementia and understanding more about dementia, people living with dementia, and those providing care and support.
We need as many voices as possible to help inform a new Strategy for Dementia in Scotland. This Strategy will set out a ‘new story’. It will broaden the discussion on what we all need to do together to ensure we all understand more about dementia and people living with dementia and their families/carers can be supported to live well, in a way that suits them.
Applications are now closed to our groups. We would however like to encourage people to give us their views online by the 5th December 2022. We also encourage people to attend our final National Conversation Event on Monday 21 November
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