Keeping it dignified

Alzheimer Scotland chief executive, Henry Simmons, is proud that Glasgow has been chosen to host the annual Alzheimer Europe conference and of the attention being paid to Scotland’s efforts.
“People are interested in Scotland. They are interested in what we’ve been doing to change our culture and they are interested in how we’ve managed to get such big commitments, like the post-diagnostic support guarantee.”

As well as showcasing best practice from across Europe, the conference will explore how recognising the human rights of people with dementia, their carers, partners and families is key to ensuring dignity and respect, as well as overcoming stigma. And a particular highlight for Simmons will be the launch of the ‘Glasgow Declaration’.

“The whole conference theme is about dignity, autonomy, respect and rights,” he explains. “So the Alzheimer’s community across Europe will be coming together and will make a specific declaration on that, calling for action throughout the European Union to ensure that certain things are delivered. That is a European response to some of the G7 commitments. It will be nice that, like the Paris Declaration several years ago, this will be named the Glasgow Declaration. So I’m particularly pleased about that.”

We have good policy in Scotland, says Simmons, highlighting the commitment to one-year post-diagnostic support, through which he explains we have been transforming the way we think about someone with dementia.

“In the past if you got a diagnosis of dementia you might have got a little bit of support but effectively, what we are saying to people is you have a terminal condition. With that condition you have seven or eight years, perhaps, to live. We didn’t give people any help to have the best possible opportunity to have the best possible quality of life during that period of time. And what will happen is people would have been left, pretty much to their own devices. There was nothing there. You were clamouring to try and get information. And the problem is often when you get that diagnosis at the start, you don’t really need much physical help. And you probably don’t have any psychiatric conditions that would be a symptom. So the professionals who are involved at that time, say it is a psychiatric nurse or psychiatrist, looking at that person would say there is not much that I can do to help you at this point. And because you don’t have any social care needs at that point, you wouldn’t see a social worker. So what we’ve done with our model is we’ve worked really hard to say, actually, this is the time that you need to work entirely differently, and if you work with people at that point and help them build their understanding of the illness, build their community, use all their natural supports and their strength, we can really get people to take that year and get a robust platform to then go through the rest of their journey with.”

That work has required a complete shift in the mindset for professionals so it will not happen overnight, he acknowledges.

“But that is the significance of that commitment. It is saying that we are going to treat people with dementia in a very different way. We are going to treat them as citizens and we are going to treat them in a respectful way and we are going to give them help to come to terms with and navigate our way through a very difficult and what will ultimately be a very challenging condition for them. But we are going to get that right from the start.”

The need is great - around 7,000-10,000 people will be diagnosed with dementia each year in Scotland – and so selling that vision and ensuring it is consistently delivered across Scotland is still a job to be done, he says.

“I think we’ve got close and we are doing well but we need to use all the momentum that is in the system to help change it. Now what I argue is if we imagine that, say, 7,000 people are empowered and given choice and power and control right at the start of their diagnosis and illness, and let’s say they live well with that illness for several years. And let’s say they keep in their community and keep their social networks, and let’s say they don’t become isolated and they don’t lose all their natural strengths, in seven years from now they will reshape the system for us. They will drive change.”

The second dementia strategy was launched last summer and included a commitment to pilot Dementia Practice Coordinators as a means of providing better integrated care and support from the mid to late stage of the illness, and Simmons says they are currently researching a similar model that will focus on the advanced stage of the illness that they hope to present to the Scottish Government and ask them to make a priority for the next strategy in 2016.

“So our vision will be that if we focus on the beginning, the middle and the end over a nine-year period, we will have sorted out the journey for people from a policy perspective, at the very least,” he says.

There are difficulties in the system that need to be addressed, but Simmons says he believes we have policy that is turning that around and a government that is invested, so he hopes dementia will remain a priority.

“I think there are some real dangers that we take our foot off dementia because people maybe think that it has had a bit of a run, a bit of a focus, but it has only had a wee bit given that it has been a stigmatised illness since Plato and Cicero wrote about it!”