Listening to voices of experience at every stage of dementia care and policy is essential in supporting people to live well with dementia in Scotland, but a lot remains to be done to achieve effective inclusion according to the head of a leading Alzheimer’s charity.

Speaking at the Neuroprogressive Diseases and Dementia Conference on including voices of experience in research earlier this month, Henry Simmons, CEO of Alzheimer’s Scotland, said:

“We need to be led by people with lived experience. Alzheimer’s Scotland are absolutely, 100% committed to the power of participation.”

Mr Simmons shared the challenges faced by people across Scotland and what support is needed, adding that “people just don’t feel empowered in our health and social care system”.

Empowering voices of experience

Age Scotland’s Dr Manji says that a lot of what has been missing from reforms in Scotland’s care is the need for “quite a fundamental culture change” in healthcare:

“A lot of it is about giving up control and recognising that the people with lived experience are the very best placed to know what they need, what their priorities are, to trust this and take creative approaches. A lot of the time it really doesn’t cost a huge amount of money, but returns can be really quite phenomenal.

“Winning the hearts and minds and being able to back that up with actually delivering on what the heart and mind want to be able to achieve by involving people more, giving up control and amplifying voices of lived experience.”

Drawing from the Alzheimer’s Scotland’s charter, Mr Simmons says that accessibility, participation, equality and protecting a person’s choice in their healthcare must be a baseline.

He says individual voices need to be listened to “right at the start” as part of a Scotland-wide human rights approach, acknowledging that different people want their voice to be heard in different ways. However, access to support services can be limited:

“What you’ll not see is that when somebody has a really early diagnosis, at that point they wouldn’t meet any social work criteria for community services.”

Th Alzheimer’s Scotland team try to support people in the way they want, as well as fostering a positive approach to living well with dementia.

From policy to practice

Mr Simmons says how individuals want their voice to be heard must be treated with respect and strong independent voices and organisations like the Scottish Dementia Working Group (SDGW) must be supported.

Founded over two decades ago, the SDWG is an independent advocacy group run by and for people with dementia funded by Alzheimer Scotland and the Scottish government.

Mr Simmons adds that independent voices that are not “curtailed because they’re part of a government group” are vital to progress but that such voices, while strong nationally are less so in local policy:

“Local policy and politics are pretty elbows-out environments and require a lot of energy to get onto a health and social care partnership; getting that voice of people into that system is a crucial component for how we go forward.”

Martin Robertson, a member of Scotland’s treatment guideline network (SIGN), says one thing he is determined to change is healthcare categorisations and labels which can limit access to care. He has dementia which mainly affects spatial and visual functions.

Mr Robertson, who was first diagnosed with posterior cortical atrophy (PCA) six years ago, says the care offered from his local authority is effectively “non-existent”. He explains that since PCA is very rare and mainly affects spatial and visual functions rather than cognitive abilities, he is not eligible for social care support from his local authority.

Mr Robertson is part of the Scottish government’s Dementia Strategy Lived Experience Panel and the Human Rights Lived Experience Panel. He says that money for dementia care needs to be ring-fenced in local authorities across Scotland or should be administered directly by the Scottish government.

Mr Robertson says this would prevent exclusion of people and avoid a “postcode lottery” in care provision.

Community care

Dementia friendly community stories initiatives have been particularly helpful for Mr Robertson in his diagnosis.

He says: “The dementia strategy for the local area is not bad – I was involved in helping with it – and they utilised storytelling; what they do is they create a person and then try and work out what they need.

“However, I tried to get on the partnership board as a patient representative so I could tell them what particular cuts will actually mean, but they didn’t want that – it felt like they didn’t want to know the human story.”

Mr Simmons says that the dementia community must come together to “work strategically with government” so ministers can understand the scale of the challenge and lay out a “transformational” strategy going forward.

Earlier this month, Scotland’s Minister for Social Care said the Scottish government is working with people with lived experience on the new National Dementia Strategy. Alongside launching the living well at home report on dementia – which highlights building local services and community networks as a key action – Mr Stewart announced the development of this new strategy.

Age Scotland’s Dr Manji, who called for government to learn from previous work in dementia in its strategy development, says a better understanding of what personalised care involves is key:

“We must develop a better understanding of what that [personalised care] involves, recognising it's not just about personalised clinical care – though that’s absolutely important – but it is about that social care, that care that takes place within the community.

“Social care is not just about moving people through a production line of the basic needs ingrained in the legislation, it’s about people's human rights, and being able to achieve the things important to them.”

She adds that “rhetorically, we have all the right policies” but, as Feeley revealed in his independent review of adult social, there is an enormous implementation gap:

“People are being diagnosed with dementia all the time who will have their year of post-diagnostic support and lots of input if they’re fortunate and that’s fantastic. But then there’s this big gap before they hit a crisis – and people tend not to have anything within this gap period.”

She says that working with About Dementia – Age Scotland’s dedicated forum for improving policy and practice with people living with dementia – she hopes to support people during this period both to live well independently and prevent longer-term crises in care.

Mr Robertson says this year of post-diagnostic support should be available from when the person desires it, not just from the moment of diagnosis, in order to meet changing levels of needs.

Rural needs and funding

He is also concerned that “central belt organisations” like About Dementia from Age Scotland are not doing enough to meet the needs of people in more rural or remote areas.

He says:

“What’s being said is fine in theory, but the practice is never happening, and I think the National Care Service should set the standard and each local authority has to keep to it – with far more accountability built into delivery.”

Mr Robertson, who lives 25 miles north of Aberdeen, says he is lucky to have a great neurologist in Aberdeen and a GP who researched the condition to provide support – but he receives no peer-to-peer support in his areas.

He adds that while it’s understandable that organisations require flagship projects to raise funds and awareness, it often leaves people living with dementia isolated:

“They do not enable individuals enough. They want groups, and for meetings and resource centres to look good. They have to, in a way, because they need money coming in so they’ve got to look good but then that’s where the postcode lottery arises.”

Contributing to the panel on the next Dementia Strategy, Mr Robertson has seen that requests for funding illustrate a large unmet demand for support and says better distribution is needed.

Mr Simmons says there are “multiple challenges” for people living in rural areas and working with local communities is necessary to meet people’s individual needs:

“My view is people live where they live, they are entitled to receive the support in terms of that post-diagnostic support and really skilled link workers will maximise opportunities around that person’s life. But you will always have the difficulty in terms of physical location.”

He adds that local health and social care partnerships “understand the rural nature of their communities and have the duty to commission services” for the individual.

Read more: Insight: Care homes embracing technology; Music's potential to help with dementia; Insight: Dementia's hidden injustices

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