Dementia strategy - national conversation: what people told us

Our National Conversation

With our National Dementia Lived Experience Panel and Strategic Advisory Group providing oversight and governance to the strategy development, we announced an open 'National Conversation' on dementia running from 30 September to 5 December 2022.

The engagement approach is based around a small number of clear, open and easy to understand questions that allow people to offer their experiences.

The consultation questions 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?

Formal responses

We had 139 responses via CitizenSpace, with an additional 22 from organisations and 6 from individuals after the deadline closed, giving us 167 in total. Of these, 64 were from organisations (around 38% of responses).

The type of organisation was mixed, with health and social care providers, third sector, professional organisations, and community support groups among those who have contributed.

For individuals, the majority (65%) were from people who are caring/have cared for someone living with dementia.

Previous dementia strategies have not used a formal written template for response, so we do not have a prior comparison.

Informal responses

We held or joined our partners to deliver a number of in person engagement sessions on the strategy in various locations across Scotland, including Orkney, Dunoon, Aberdeen, Dundee, Whitburn, Kirriemuir and Peebles. Events were designed to ensure that people can offer their views in places and environments that are comfortable for them, rather than asking them to travel to central locations to engage. This led to 110 separate engagements with a wide range of organisations and groups, reflecting our commitment to hearing a wider and more diverse range of voices.

In addition, we have held numerous online meetings and sessions with a wide range of organisations including Alzheimer Scotland, About Dementia within Age Scotland, British Deaf Association, Minority Ethnic Carers of People Project (MECOPP), Social Work Scotland, Allied Health Professionals Directors, Scottish Dementia Working Group (SDWG), National Dementia Carer's Action Network (NDCAN), the Mental Welfare Commission, Scottish Social Services Council, Scottish Care and the Care Inspectorate. Officials have also run a number of online sessions at various times which anyone can sign up to and attend. These sessions have also been well attended and have included people living with dementia, carers, and professional staff.

All of these engagements have been summarised, with these written summaries used to supplement the formal written responses as part of this analysis.

Online engagement

We also held four online public engagement events. These were attended by 33 people in total, with a collective summary of these used as part of the analysis.

The role of our governance groups

National Dementia Lived Experience Panel

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, and;
• 11 as care partners.

The questions for our National Conversation were developed in collaboration with the group, and initial findings were presented to them prior to the full analysis.

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

National Dementia 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, bringing together a wide range of backgrounds and interests including clinicians, the Third Sector, local government, providers of residential care, academia, and Scottish Government colleagues covering areas such as planning and the National Care Service.

The group helped inform our engagement efforts round the National Conversation, and how we could support the fullest range of people and organisations to contribute.

Analysing responses

To bring scientific rigour to the process, we used a thematic coding structure for our analysis. This saw us:

• Take all of the formal written responses into a single excel sheet
• Conduct an initial analysis for words and key themes which kept being repeated across the responses.
• From a long list of codes which emerged, we combined these into a core list of headings, providing us the basis for categorising the responses and comments received.
• An equal weighting has been given to all responses, with particular quotes and points raised utilised.
• Points raised have also been quantified in some way. For example, we use the terms "all", most", "many", "some", and "few" to articulate the strength of opinion.

Points to Note

The following points should be noted:

• The analysis we have developed highlights those key issues and themes which emerged from our coding analysis at a high level. It does not reflect the totality of contributions and views which have been utilised to develop the Strategy itself.
• Respondents to any public consultation or engagement event are self-selecting, and the responses may not be representative of the population as a whole.
• Some organisations who attended a virtual or in-person engagement event also submitted a written response to the public consultation.
• The National Conversation was structured to allow respondents to answer questions independently in recognition that respondents may want to respond on one or some of the questions without wishing to express views on the others. All views have been carefully considered.
• Not all submissions to CitizenSpace, the portal that stored written responses, were presented in line with the Conversation questions.
• There does not appear to have been a campaign response, albeit there are some responses from individual respondents that use the same or similar wording. In part this likely reflects people operating/interacting with similar organisations in what is a small stakeholder pool and said stakeholders sharing the National Conversation out to their members and/or wider networks. Further, some organisations worked with others to prepare a joint response in addition to submitting a response from their own organisation.
• All responses, where the respondent has given permission for their comments to be published, will be made available on the Citizen Space website.