Creating better dementia care: How Abigail’s legacy lives on – Michelle Miller

There are an estimated 90,000 people living with dementia in Scotland. Michelle Miller, Healthcare Improvement Scotland’s (HIS) Community Care and Dementia Lead, tells us how seeing her grandmother’s experience of the condition led her to a lifetime of work to improve things for patients and families alike – and how a new HIS guideline can make a difference.

My gran, Abigail, was the heart of our family when I was growing up. Hers was the place we all went to for family gatherings. I remember going to her house after school and her teaching me how to bake, it was one of those things we shared. Her apple pie was her signature dish and my favourite birthday treat.

She never forgot anything or anyone.

And then, one day, she did.

It was my birthday, I was in my early twenties. We were having a wee party at the house and as always, my gran came over. When she saw it was my birthday, she got so upset. She’d forgotten. She hadn’t brought a card, no apple pie, no cake. My mum went to get her a card to write for me because she was so upset.

After that, we started to notice other things going wrong. She’d put the kettle onto the cooker to boil, she started to imagine somebody had chapped her window at night, things like that. She was beginning to notice things not being quite right and it was at that point we got a diagnosis.

A diagnosis that felt like a death sentence

My gran had dementia. No one in our family had had it before, so it came as a bit of a shock. She’d always been this very positive, active person, really fit and healthy.

I remember my dad saying to her “are you going to go on the old folks’ trip then, mum?” And she immediately said “Oh no. That’s just for old people. I won’t be going on that.” She must’ve been nearing 80 at the time.

Her diagnosis came at a time when there was very little support available. There was no Alzheimer Scotland and it felt like a bit of a death sentence, a very blunt diagnosis with no cure and nothing you can do to help.?That was really hard for the family to try and come to terms with, trying to find the best ways to support my gran without really fully understanding the disease and what it meant.

It’s a very progressive disease, and it proved really difficult to sustain her living on her own at home. Eventually she had to go into a care home. It wasn't a good experience, so I've always had a passion of how unjust that felt and how I could try and make a difference for people who have dementia and their families. It’s always been something that I've wanted to make better.

Making it better

My first job was as a Medical Secretary at Ayr Hospital before moving to the Health Technology Board and the practice development unit at QIS, which became Healthcare Improvement Scotland (HIS). I undertook an MBA and IHI quality improvement training. I worked as a programme manager and then as an improvement advisor in various improvement programmes including the older people in acute care programme before taking a secondment opportunity with the Patient Experience Programme at Scottish Government.

Then an opportunity came up to work as an improvement advisor for dementia at Scottish Government, which for me was the dream job.

Setting up that programme was where HIS’s Focus on Dementia programme was born, effectively. I had the opportunity to get involved in the EU Joint Action for Dementia which gave me really helpful understanding of the international context around dementia. I came back to HIS in 2015 and set up a team here, undertaking an MSc in Dementia Studies at the same time to help further my understanding of the condition. It was an amazing opportunity, being able to recruit all these people who were equally as passionate about helping people with dementia. And those people are still in the team today.

A world of learning: from Hiroshima to Pearl Harbour

While I was working at Scottish Government, I got support to apply for a Winston Churchill fellowship . It’s a trust fund set up so people can travel to other countries, learn from each other and bring that learning back to their home country. I chose to visit Japan and America, to compare how Eastern and Western cultures view, support and value ageing.

Japan has a very similar demographic to Scotland, and a similar dementia policy. It also has one of the oldest populations in the world, so there’s a significant number of people with dementia. But it also has the very first dementia friendly community in the world, Uji City . They have a very proactive approach to supporting people with dementia in the community. They’ve trained hairdressers, butchers, bakers, people in the community, to be dementia friends. Dementia friendly businesses have a lemon sticker in their windows so people know if they can’t find their purse or work out their change, the people there will understand and help them. They also have a completely different approach to care homes. They look like ordinary homes. And lots of them have day care centres attached too. When people just need a bit of help, they can go there and get to know the place and if and when they need more intensive care, they’ve already got those relationships and familiar environment so the transition is less difficult.

America was very different. Whilst pockets of innovation existed, the focus was more on finding the drugs to treat dementia. I remember being in Pearl Harbour, having started in Hiroshima, and thinking how very different they were in their approach. In the report I made back for the Churchill fellowship , I reflected on the fact that many temples in Japan which were once golden or brightly decorated are now old and brown in colour. Japan doesn’t restore temples back to their former glory, but instead the age and different stages of the temple are respected. Could this valuing of age be a clue to how communities in Japan respect their older people in contrast to our western culture, that often seems to be about defying ageing?

Bringing it all back home

What I saw in Uji City really made me view my own town, Prestwick in Ayrshire, in a different way. A couple of weeks after coming back, I was in the butchers and an older lady came in and couldn’t remember what she needed. The butcher was trying to help her, saying you normally have mince on a Monday then perhaps chicken on a Tuesday, that type of thing.

When the lady left, I said to him “Do you realise you’ve just been a dementia friend?” I explained what I’d seen in Japan and he thought it was an amazing idea. That’s where it started, this idea of creating a dementia friendly community in Prestwick. More and more people got involved, we set up a steering group which also included people with dementia and family members, and started to think about how we could make it work.

I’ll never forget the night before we launched. I’d asked all the businesses taking part to show their support by putting something purple in their window as it’s the colour used by a lot of dementia support charities. I was driving home from work through Prestwick and there was just this sea of purple everywhere, it was amazing.

From cliff edge to cutting edge

The work we did in Dementia Friendly Prestwick , has undoubtedly fed in to my work for HIS, as has what I saw in Japan and America.

In HIS one of the main things we want to do is improve access to high quality post-diagnostic support, to help people with dementia live their best lives. At the moment people are given post diagnostic support for a minimum of one year – while that’s a minimum, very few areas offer much more than a year. After that, families have told us that it feel like things fall off a cliff edge. We want to go from cliff edge to cutting edge in Scotland. The work my team is doing with our colleagues in the Scottish Intercollegiate Guidelines Network (SIGN), developing a dementia guideline , will help that.

Making a difference

A key element of the dementia guideline is around reducing stress and distress for people with the condition, understanding what triggers it and helping them avoid it. We know that being in hospital can create stress for people with dementia, that it can lead to falls, delays in discharge and other harms. A more person centred planned approach can help avoid that. More widely, we’re mapping how all our work in HIS feeds into the guideline and the wider dementia strategy for Scotland .

Because we really want to see this guideline making a difference, we’ve also put an offer out to teams across NHSScotland to come and work with Focus on Dementia around things like post-diagnostic support. We’ve got health and social care partnerships from Edinburgh, Dundee and NHS Lanarkshire working with us. We launched the SIGN dementia guideline . We’ve set up a learning system to share experiences and good practice. If we join up areas of good practice, teams can help each other. It’s about small steps for potentially big improvements.

It's estimated that there are 90,000 people living with dementia in Scotland. So no matter where you live, there'll be someone you know that either has dementia or is supporting someone who has it. While we’ve come so far in Scotland since my gran was diagnosed, there’s still so much to do.

Find out more about our dementia work.

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