Dementia strategy - national conversation: what people told us

Introduction

We are grateful to everyone who contributed to our National Conversation. The range of voices we heard, whether it be in writing, online or in-person, provided an incredibly strong basis on which to consider what a new Dementia Strategy for Scotland can and needs to achieve.

The engagement work was led and delivered by Scottish Government policy teams, working with a number of organisations who went to great lengths to engage communities across Scotland and to enable their voices to be heard. Such efforts have been essential in broadening out this conversation on what a new Strategy could look like, and we will continue to encourage these efforts as we progress from developing the Strategy and it's outcomes to identifying and delivering on actions.

What is this?

Our ambition with this document is to collate and share an overarching, high-level summary of the collective written and oral evidence we received.

We also want to outline the range of responses received, as well as the evidence-based rigour we brought to this analysis through using thematic analysis techniques.

What people told us

People who participated in our National Conversation focused on:

• The need to change how we talk about dementia – There is a negative and stigmatising view of what dementia is and what a diagnosis means. This negative societal perception can mean people 'putting off' seeking a diagnosis or asking for help, and can limit the type of support made available to people when they need it.
• Community – The importance of community in the lives of those living with or caring for someone with dementia came through strongly, as did the need to leverage a community-led, peer-support ethos wherever possible.
• Policy into practice gap – There is a gap between Scotland's world leading commitments on dementia policy and people's experiences of receiving support ('what it feels like'). This includes a lack of person-centredness towards individuals, their families and their carers in delivering or tailoring support that works for them.
• The 'postcode lottery' – The availability and provision of support, including the commitment of a minimum of 12 months Post Diagnostic Support (PDS), is inconsistent.
• Workforce issues – The challenge in providing care which support people where and when they need support in a way that works for them is a consistent message.
• Education and training – A lack of education and training about dementia is resulting in an underskilled workforce in both social care and health.
• Other key issues include: The trauma of diagnosis; the perception that dementia should be seen as a 'brain health' condition rather than a mental health one; the need for an upscaling of preventative and early intervention activities (to reduce demand at the crisis end), and; the prohibitive cost of seeking specialist care and support.

What's next?

• We have collated these responses to shape an initial outline draft of the new Dementia Strategy with which to engage our National Dementia Lived Experience Panel with.
• We will work with the National Dementia Lived Experience Panel to ensure, as our governance partner, it fully reflects their experiences and their views on what needs to change.
• We will also work in partnership with COSLA to ensure this is a Strategy that sets a new, long term agenda for change in dementia policy across society.
• Our Strategic Advisory Group will also play a critical role in evaluating further drafts of the Strategy.
• We have also commissioned a review of available evidence from senior academics. This will provide an evidence base with which to test the priorities which have emerged from our engagement.
• Accounting for all of this work, we will publish the Strategy in Spring 2023.

What will this Strategy look like?

Reflecting what we have heard, there is a clear need for a long-term vision and set of priorities. This reflects the extent and scope of change which people who have contributed to our National Conversation have called for, while being realistic about how long that change will take to deliver.

We will be informed by the large-scale independent evaluations of key commitments from previous strategies in assessing whether these commitments contribute to a better life experience for those living with dementia and those who provide care and support for them.

To begin to deliver a longer-term vision and in addition to continuing to deliver on our world leading commitments such as a year's Post-Diagnostic Support for people living with dementia, we need to engage further following the launch of the Strategy around the immediate to medium-term actions we can take forward and how we will do this. This process will be captured in an initial strategy delivery plan, which we will publish by the end of 2023.