50 people from across East Lothian and beyond came together at the Brunton Hall in Musselburgh to share their views on what the Scottish Government should put in Scotland’s Third dementia strategy.
The event brought together people living with dementia, their families and carers, professionals, volunteers and people from the Scottish Government. We worked in small groups to share our experiences and ideas. We were also joined by the Chair of the new Integrated Joint Board, Councillor Donald Grant. This new Board brings together services in health, social care and the third and community sectors to develop a better approach to services.
People spoke about what it was like to live with dementia – the stigma and discrimination. Some people had lost their jobs through dementia, others had lost friends, all through fear and ignorance about dementia. As one person put it “It’s not as if we chose to get dementia, we don’t decide ‘Oh I’ll just get dementia today’.” People with dementia and carers wanted to make sure that if you get a diagnosis of dementia you are also able to get your rights and get access to community-based support including respite care. It’s all about everyday life. People want things to do, places to go and people to see, just like everyone else.
We also spoke about how difficult it can be to get a diagnosis, some people had been waiting for a diagnosis for years. It is also essential to have services that are joined up, good quality and reliable to help people to stay living independently in their own homes. There was a sense that you have to reach a crisis before you get help and support. Carers also felt unsupported. And there is a particular lack of recognition of the needs of people under 65 who are often neglected. Most of the services are designed for much older people because we assume dementia only happens to old people, it doesn’t.
On the plus side there was a vote of appreciation for the support people get from Day Centres, dementia cafes and dementia friendly cafes and Dementia Friendly Communities. Just getting a bit of extra help when you’re out shopping or feeling confident to drop into a cafe can make a huge difference. People need information about what’s going on, where people can go for a cup of tea and a blether, what groups and activities are open to them. Also important is advocacy, being able to access rights. People also wanted to see more done to get good paid carers recruited and supported to make services better and more available.
Finally, people spoke about the need for transport, especially community transport that is affordable. And that we need to talk about preventing dementia, for generations to come and now – that little bit of help makes all the difference.
Information from the day will feed into the Scottish Government’s consultation process. The day has also been really useful in helping us to look at what we do through Dementia Friendly East Lothian – what should our priorates be and what should we be encouraging the new Integrated Joint Board, service providers and policy makers to do?
Many, many thanks to everyone who came along to the event, especially people affected by dementia who gave so freely of their experiences so that these can help other people have a better quality of life.
The Scottish Government expects that its draft policy will be issued late March. Watch this space and sign up for the newsletter to be kept informed of what happens next and opportunities to get involved.
The next DFEL event will be our learning event on 31 March in Haddington. Details will be out soon!