New dementia strategy for Scotland: Everyone's Story

How this Strategy was Developed

The strategy recognises we start from a strong base. It has been designed to reflect and recognise the wide range of dementia experience and activity already in delivery across Scotland. It has looked for ways to learn from and embed what has had a positive impact as well as identify where the need for change and improvement remains.

We know that the experience of those living with dementia is varied and through our National Conversation, we intended to capture this and amplify seldom heard voices. We also want people living with dementia in Scotland to recognise their own stories in this strategy as a story of collaboration, empowerment, where strengths are recognised and rights are upheld.

Fostering an inclusive approach, where people living with dementia are supported and empowered to influence the strategy, has been integral in capturing this national story that is essential to transparent policy development. Our engagement with dementia communities from across Scotland has been invaluable in recognising unique and complex challenges that dementia brings to those who are diagnosed, care partners, families and service providers.

Lived Experience

The establishment of a National Lived Experience Panel, appointed by an independent group on behalf of the Scottish Government, has formed part of the formal governance which oversees the development (and subsequent delivery) of this strategy. The Panel comprises 22 people: 11 with a diagnosis; 11 as care partners/unpaid carers. Current Panel members have agreed to support the development and delivery of the strategy for two years when membership will evolve.

As well as working with the National Dementia Lived Experience Panel, we have and will continue to engage with pre-existing lived experience groups as reflected during the National Conversation.

Strategy Advisory Group

A new National Dementia Strategy Advisory Group has been established to inform and oversee the development of this strategy, chaired by the Scottish Government’s Chief Social Work Advisor. The group is multi-agency, engaging a wide range of backgrounds and interests including clinicians, the Third Sector, local government, providers of residential care, academia, Convention Of Scottish Local Authorities (COSLA) and Scottish Government colleagues covering areas such as planning and the National Care Service (NCS).

National Conversation

With our Lived Experience Panel and Strategy Advisory Group providing oversight, a National Conversation on dementia ran from September to December 2022. It was our invitation to everyone in Scotland with an interest in dementia to make a contribution on what is needed now and where we should go from here. The questions posed to stimulate conversation were:

1. What does dementia mean to you and those around you?

2. What supports work well for you?

3. What challenges need to be addressed?

4. How would addressing these change lives?

5. What do we need to build on/learn from what has been done before?

6. What else would you like to tell us?

139 responses were received via CitizenSpace, with an additional 22 from organisations and 6 from individuals submitted directly, giving us 167 in total. Of these, 64 were from organisations (38% of responses).

Roundtable Discussions

Four roundtable discussions with two groups, practitioners and academics, were brought together focussed on understanding and reflecting the latest practice and research. The practice round tables included a wide range of practitioners from community support to old age psychiatry. The academic roundtables brought together respected dementia specialist academics from Scottish universities to discuss how we connect with, understand and use the latest research on dementia. All four discussions formed part of the analysis of responses.

Community engagement

Taking a ‘go to people where they are’ approach, we held or joined with partners to deliver in person engagement sessions on the strategy in communities across Scotland; Orkney, Dunoon, Aberdeen, Dundee, Whitburn, Kirriemuir and Peebles to name a few. Events were designed to ensure that people were able to offer their views in places and environments that were comfortable for them. Alongside a limited number of online engagements for those who prefer that, this totalled 110 strategy events with a wide range of organisations and groups, reflecting our commitment to hearing a wider and more diverse range of voices.

We also held online meetings and sessions with a wide range of organisations including Alzheimer Scotland, Age Scotland: About Dementia, British Deaf Association (BDA), Minority Ethnic Carers of People Project (MECOPP), Social Work Scotland, Scottish Care, Allied Health Professional (AHP) Directors, Allied Health Professions Federation (AHPF) Scotland, Mental Welfare Commission, Scottish Social Services Council (SSSC), Post Diagnostic Support (PDS) Leads Network across Scotland and the Care Inspectorate (CI). Our open online engagement sessions drew mixed attendance from people living with dementia, care partners, and professionals.

All of the engagements were written up and used to supplement the formal written responses as part of our analysis process.