“We want a national conversation with everyone interested in what a new Dementia Strategy for Scotland should like.”
This was the opening sentence to the Scottish Government’s recent consultation on a new Dementia Strategy for Scotland, and it was an ambition that the Scottish Dementia Working Group (SDWG) and the National Dementia Carers Action Network (NDCAN) were keen to help deliver.
As national campaigning and awareness groups we exist to ensure the voices of people living with dementia and their carers are heard, so that lived experience is at the heart of future policy and practice. As such, a call for a national conversation on the fourth Dementia Strategy was one that we were bound to answer.
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SDWG and NDCAN members were delighted to support and participate in the series of public engagement events organised across Scotland by Alzheimer Scotland, sharing our experiences and encouraging discussion with other people with dementia and their carers.
At these events we encouraged a wide discussion of individuals’ experiences of dementia and their views and opinions on future dementia policy in Scotland. People who had recently received a diagnosis told us about their challenging experiences, including long waiting times and a lack of knowledge and understanding of dementia by GPs, which made the path to diagnosis unnecessarily difficult and delayed access to crucial follow-up support.
“The amount of time to get a diagnosis was extremely distressing which causes a delay in getting the correct help and medication.”
At an engagement session for people under 65 living with dementia we heard of individuals being advised by their GP that dementia was not a viable diagnosis because they were “too young“. And it was highlighted that more needs to be done to support younger people with dementia to participate in employment, education, and training, and there needs to be better access to services and resources that are relevant to them.
“My employer lacked awareness – I knew I couldn’t continue working after my diagnosis but was devastated to be given 10 days’ notice that I was getting ‘retired’”
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Carers told us about their experiences of having to give up work or reduce their hours, and of having to abandon training and education opportunities, often due to a lack of support or respite. We heard about their challenges accessing social work and social care services and about financial worries.
“If I had a break every now and again then it wouldn’t feel quite so difficult… I would manage better, I would cope better.”
“Money is always at the back of my mind… everything is much more expensive now and I can’t care for my mum full-time and go out to work. I’m in a ‘Catch-22’ situation.”
People also spoke about the importance of post diagnostic support, and of the need to ensure good access to information throughout the dementia journey.
“Post diagnostic support has been really helpful, the link worker told me about Power of Attorney, Attendance Allowance and introduced me to Alzheimer Scotland.”
“It’s knowing about what support is out there and being directed to this at the point of diagnosis. Signposting is crucial.”
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Whilst experiences differed across the country our conversations demonstrated that the three previous Dementia Strategies had not been fully implemented or evaluated, despite having positive plans to improve people’s lives. As one carer said:
“We’ve had three Strategies so far and these have never been evaluated to identify any improvements. In my opinion, there are specific measurable targets needed because if we don’t know where we are, then we can’t possibly know where we’re going.”
Following the public engagement events, SDWG and NDCAN members met with members of the Scottish Government’s policy team to put forward their views as part of the consultation. We conveyed the messages we had heard directly from people across Scotland, and highlighted what has worked well and, perhaps more importantly, what needs to improve. We will continue to take every opportunity to amplify the voices of those living with dementia and carers in the formulation and delivery of the new Dementia Strategy. The consultation has now closed and through Alzheimer Scotland’s public engagement work we supported 127 people with dementia and 171 carers and former carers to have their say across 30 facilitated sessions. You can read the reports that came out of this work here.
