Participation at the heart of policy design and delivery: the National Dementia Lived Experience Panel

May 21, 2024 by No Comments | Category Lived experience

I am Indian; I am Scottish. I am a husband, a brother, a father, a grandfather. Some relations seem so distant now.

Another life? I recall the streets of my youth; I do not know my address. But I am still me.”

From a poem written by a member of our National Dementia Lived Experience Panel in tribute to his father, these words feature in ‘Everyone’s Story’, Scotland’s New Dementia Strategy. Launched in May last year, the strategy sets out a positive, shared vision for dementia in Scotland over the next 10 years.

Dementia is a disease which up to 90,000 people live with in Scotland right now, and up to 1 in 3 people born today may develop. It is also a disease that people can live with for a number of years and, with the right supports, enjoy a positive quality of life.

‘Nothing about us, without us’

In 2022, we set out to develop a new strategy for dementia to support people living with a diagnosis to live their best life. We knew the best way to deliver better experiences for people was to include them in policy design and delivery. Only someone who is living with dementia knows the complexities and nuances of dealing with it.

In keeping with the principle ‘nothing about us, without us’, dementia communities across Scotland have come together for decades to develop innovative community supports, to establish their own spaces for engagement and artistic endeavour, and to campaign for change. Our approach built upon this already well established work.

A collaborative approach

It was incredibly important that peoples’ voices guided policy change. To do this we created a panel of people with lived experience to have real power and control in how we consulted, created policy ideas, and looked critically at our own work.

We wanted to make sure the lived experience panel was open and independent from government. A recruitment group was created, who independently identified via an application process 22 panel members, made up equally of people living with dementia and care partners.

The Panel comes to life

Before our first Panel meeting in September 2022 we held individual discussions with all members of the Panel to ensure that any support needs and access arrangements could be agreed.

At our first meeting we covered:

  • a Terms of Reference jointly agreed as to the Panel’s purpose.
  • establishing shared hopes, ambitions and motivations.
  • what a new dementia strategy needed to do that was different from previous strategies.
  • what questions we should ask everyone with an interest in dementia, through  a National Conversation to help inform our Strategy.
  • the importance of holding ourselves to account and judging success based on people’s experience.

From our discussions the Panel quickly identified key themes that shaped the new strategy. These were:

  • their experiences of diagnosis
  • different approaches to post diagnostic support
  • a shared desire to end the stigma associated with dementia
  • a knowledge of ‘what experience of services should be’ but that this is often determined by where you live
  • better connected support for carers
  • recognition of the value of growing peer support and networks.

In collaboration with the Panel, we worked to ensure each of these areas were part of our strategy, including 5 ‘key points of difference’ we would use to measure progress towards success over the strategy’s lifespan:

  • recognising dementia as a condition of the brain that affects the whole person, while upscaling efforts to address its mental health and wellbeing impacts
  • ensuring services and supports are dementia-inclusive and create environments which enable people with dementia to live their best possible life
  • delivering equity of access to information, treatment, care and support for people living with dementia
  • upholding a person’s human rights throughout their dementia journey
  • ensure people are supported by a skilled, knowledgeable and trauma-informed workforce

Delivering change and improvement

With the strategy launched in May 2023, we began to look at how we would deliver it. This included working groups made up of members from multiple sectors, co-chaired by members of the Panel. This made sure we included a broad range of perspectives, including those with lived experience. Each of the co-chairs were supported to lead and set the focus for our discussions, guiding the conversation towards actions and deliverables that could impact the dementia experience. This informed the first key deliverables set out in the recently published Initial 2-year Dleivery Plan for our Dementia Strategy.

What’s next?

We are now working with all of our partners to deliver for our dementia communities in the first 2 years. This includes the planned launch of an anti-stigma campaign for the public, co-produced by the Lived Experience Panel. This uses messaging developed by the Panel, including the importance of continued social interaction and activities to help people living with dementia stay well for longer.

The Panel are vital in keeping us accountable for delivering change. We are confident that, by embedding the voice of lived experience in the development and delivery of policy, we are more likely to deliver the change we need to see locally – improving people’s access to appropriate supports and services that work for them, when they need them.

Final reflections

We have demonstrated our belief in genuine two-way dialogue, that values people who are experts through experience. Such a dialogue can challenge and disrupt traditional ways of working. However, it increases the level of balance that exists in debates and decision making and increases the level of delivery accountability in the process. It can be challenging to deliver, and it does take time and resources to develop trust and do it ‘right’ but the benefits we have seen in aligning to the priorities of our dementia communities cannot be overstated.

If we are truly to address the gap between policy and people’s lived experiences, we have to embrace more of this way of working, and be prepared to act on what we are told. Doing so will ensure we have the right conditions to deliver change in a way that supports, enables and empowers people.

If anyone has any questions, please contact

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