Raising awareness of dementia in Scotland
Paying attention to the simplest of details can make a real difference to the lives of those living with dementia. The Dementia Services Development Centre at the University of Stirling is at the forefront of highlighting dementiafriendly design and demonstrates how thoughtful design can help individuals make sense of their surroundings.
Its Design and Technology Suite showcases practical solutions. The living space is light and bright. Contrasting colours help provide clarity and make facilities more easily identifiable.
Clear-fronted cupboard doors that reveal their contents help make sense of identical-looking cupboards. The bathroom has traditional fittings that are clearly marked. Technology, such as seats fitted with pressure pads that turn on lights when you get up or sit down and an infra red beam by the bed which when broken can send an alert to let the carer know the person has got out of bed unexpectedly, is also on display. They are also trying a new lock that can be opened by preprogrammed fingerprints should the person go out without a key. While outside, the dementiafriendly garden is both beautiful and practical – a safe and secure place to enjoy the outdoors,stimulate the mind and replenish the soul.
Those who can’t visit the centre itself can take a tour of its virtual care home on its website. The centre also runs culture change programmes and its shelves are full of books penned by researchers outlining everything from helpful hints and design solutions for carers living at home with someone who has dementia, through to design features to assist patients with dementia in care homes and acute care settings.
“There are examples in the NHS where people have introduced our design principles and in care homes and they’ve noticed reductions in adverse incidents such as falls, reductions in aggression, reduction in incontinences. So there is a measurable difference when people do these things,” says DSDC director Professor June Andrews, who is determined that the lessons learned are shared as widely as possible.
Public understanding and awareness of dementia has increased “hugely” over the last few years, says Andrews. Sadly, the numbers affected are also growing. At present, around 84,000 people in Scotland are thought to have dementia. However, as our population ages this figure is expected to double within a generation, and all at a time when public expenditure is squeezed and there is a policy direction that is focused on people staying at home for as long as possible – creating what Andrews describes as “a perfect storm”.
In the eye of this storm dementia has become an overdue national priority. Certainly the financial ramifications can no longer be ignored, as, according to the Alzheimer’s Society, dementia costs the UK an estimated £23bn a year. Many countries, including each of the UK nations, now have their own dementia strategies in which increasing awareness is a central ambition. Another strand of the strategies all across Europe is a focus on early diagnosis, explains Andrews, as this is a good way of minimising some of the cost and difficulties.
While a third strand relates to improving the knowledge of health and social care staff, which in turn is also helping to raise general awareness.
“Of course they make up a huge percentage of the population,” Andrews points out. “So if all the health and social care workers are learning about it, and all the adverts are saying you should be aware of it, and healthcare systems and social care systems are asking people more and more whether or not they’ve got it…the public awareness and general profile of dementia as an issue in our populations has peaked.” This year’s Dementia Awareness Week runs from the 18-24 June. At its national conference in Glasgow, Alzheimer Scotland will seek to send out the positive message that you can live well with dementia. However, it will also be the launch pad of the two-year review of Scotland’s first national dementia strategy and a chance to review progress, explains chief executive Henry Simmons.
Simmons says it is important to commend the work the Scottish Government has done and the support it has given dementia in recent years. However, he adds that there is still a need to translate strong policy into a consistent experience for everyone with dementia, adding that this is what the next year of the strategy will be about.
One area that Alzheimer Scotland campaigned “vigorously” on when the strategy was being pulled together was post-diagnostic support.
“At a policy level, we are absolutely delighted that the Government have committed to a minimum of one year’s post-diagnostic support using the five pillar model that we’ve developed from a named and trained person,” Simmons explains.
Four test sites have been put in place and they will report in November, which Simmons hopes will be followed by a HEAT target in 2013.
“Now, that again is quite a life-changing and world-leading decision because what we can guarantee people from 2013 is that they will get a skilled practitioner who will work with them for a year to really help them come to terms with the illness, help them maintain their connections, help their family cope, sort out all the legal matters and plan. I think we needed that. If we didn’t get that direction in terms of a guarantee we would just find ourselves in this minefield of dementia getting consumed in older people’s agendas and not being properly understood for the illness and terminal nature of the illness that it is. I think that this guarantee will help so many people.”
Simmons believes this focus on some of the most difficult areas, such as early diagnosis, post-diagnostic support and acute care have been important starting points for the strategy. But at the conference he will also be presenting a new challenge for government and others to think about.
“What we are going to now turn our focus onto is to say that when someone is in the midstage, they need guarantees about interventions that will help tackle their dementia as well as basic care. So they need access to skilled therapy, reminiscence therapy, cognitive stimulation work, they need support to overcome risk and be risk enabled. They need further help to come to terms with the changes and losses that are going through their life and they really need someone to support them and their family throughout that process.”
Within that there is also a need to interject specific supports for carers of people with dementia, he argues. Last month it was revealed that Jeanette Maitland’s husband Ken was seen by 106 different carers in a single year before he died from a dementia-related illness in May.
Commenting on the case, Alzheimer Scotland said that no one should have to go through the experience that the Maitlands faced and that “unjustifiably frequent changes of support and care staff are simply not acceptable in any circumstance”.
There are many challenges that go with the dementia journey, says Simmons, and so later this year the charity will launch its new National Carers Dementia Action Group, which will help government and other organisations get a sense of what carers for someone with dementia need in terms of additional support. The group, which is being led by former MSP and chair of the Alzheimer’s Cross-Party Group, Irene Oldfather, has already begun its work but will be officially launched later this summer.
In turn, SNP MSP Mark McDonald has taken up the reins as co-convener of the new Cross- Party Group on Dementia, after Oldfather was not returned to the Scottish Parliament in the 2011 election. It is an issue he has a “strong personal interest in”, he says.
“My grandmother, who sadly passed away recently, she had dementia and my mum was her carer so I saw first hand how dementia affects not just the individual but also the family around them,” he says.
The last CPG had a strong voice in the Parliament, leading to the creation of a charter of rights for people with dementia and their carers. For his part, McDonald is keen that the current group helps ensure that dementia remains on the radar of not just the Government, but the whole Parliament.
“I’m also a member of the Finance Committee and we are about to do a series of sessions on demographic change. As we move forward, dementia is going to become an everincreasing component of society, we absolutely have to have people around the table, policy makers, interested groups, absolutely focused on what are the ways to deal with the issue of more prevalent dementia going forward but trying very hard not to use some of the more emotive language that gets used about these things. People talk about things being a burden or a timebomb. There are many people who have dementia who would perhaps see that as devaluing them as people. The key thing here is to ensure we are still recognising it is a person who needs to be helped and cared for, and that is really where the focus is.”
Within this, he would also like to see closer working between related CPGs, such as older people and carers’ groups.
“I think the Standards Committee is currently doing a review of CPGs. I think one of the things that CPGs need to do more is collaborative working, particularly where there are clear crossovers.”
Alzheimer Scotland has been working with McDonald to re-establish the group and welcomes the continuing focus on the condition within the Parliament. While dementia has enjoyed the attention of the Scottish Government and Health Secretary Nicola Sturgeon, who made it a personal and national priority in recent years, Simmons stresses that there are no quick fixes and this is something that will have to be a longterm priority for the current and future governments.
“The full facts and figures and the cost to our society, both human and financial costs, are, I think, terrifying and I think anyone who has had a serious look at what we are facing can’t but say that dementia will have to be a priority forever,” he says.
“It is not going to be the next three years. It is not only going to be the next ten. Every consecutive government, both national and local, will have to focus attention on how to intervene in terms of dementia and what they mustn’t do, what we are worried about people doing, is that thinking about dementia just through the older person’s agenda that they’ll deal with it. You wouldn’t think about cancer in that way. You wouldn’t think about diabetes or other conditions in that way. So dementia needs to be recognised as an illness that we only have four drugs to treat [the symptoms].
“I think this is the crux of the matter for me. It is a terminal condition… one in three people die with dementia, and you don’t want to scare the life out of the public by putting that message out there all the time but this is the truth.”