As 30 May – 4 June is Dementia Awareness Week in Scotland, Karen Lawson, Programme Lead for our Pioneering Collaborative Leadership Programme, wanted to share her own experiences of dementia care, and reflect on what this means for how we can approach public services in Scotland.
“I know your Dad isn’t really with us.”
These were the words my cousin wrote to me in relation to my dad and his dementia. Of course, I knew what she meant, but it doesn’t really convey the complexity of what life is like for my dad or the changing relationship of those who are close to someone with dementia.
This is Dementia Awareness week, so I thought I would share a personal story that I hope conveys that each person who has dementia is unique and needs support and care tailored to their individual strengths, interests and needs.
According to the Independent more than 225,000 people develop dementia every year, with around 850,000 people in the UK living with dementia. Startlingly, this is estimated to rise to two million by 2051. Though this story is a personal one, I hope it highlights that dementia is a complex issue requiring imaginative, empathic and innovative approaches. It is undoubtedly something that will touch all our lives, either as someone who develops the condition, a carer or as a friend.
So, if dad isn’t really with us, where is he? The last time my cousin saw him, he still lived at home, cared for by my mother, who hid much of the stress of looking after him. Her sense of stigma around dementia invoked a need to protect him from her perceived ignorance of the condition amongst those around her. Her heightened sense of protection of dad meant she went everywhere with him, skilfully filling in the gaps in his memory, and running after him when he would suddenly leave to make his way to his childhood home. Her only additional support came from a volunteer from Alzheimer’s Scotland, a wonderful, kind guy, that she waited over a year for, and who took dad out for a couple of hours every week. The volunteer was deeply respectful to both of them and I know his visits were a highlight in the week to my parents.
It was only when I was clearing out their house after her death, and dad’s move to a home that neighbours and friends told me they would have liked to do more but didn’t want to interfere. It’s difficult to know how she would have responded but here’s my advice – always ask. When she died last January, very soon after her diagnosis of multiple brain tumours, she was exhausted, but she fulfilled her promise to him, that while she was alive he wouldn’t be “put into a home.”
What does this say about her and many people’s images of care homes? My mum’s quick death precipitated a frantic search for a care home for dad. I thought it would be easy to get a list of care homes in Edinburgh that had spaces, but because they lived in Fife, the social worker only had knowledge of care homes in Fife.
We were fortunate that the social worker in Fife listened to my dad and I explaining what dad liked to do. He needed to feel that he was part of life, was able to contribute, be helpful to others, make choices, and be with people who were patient with him, but took him seriously. This is what it means to be person centred. John O’Brien’s 5 accomplishments encapsulate the very ethos of what we were looking for in a care home – somewhere he could contribute as well as having his care needs met. Somewhere he felt he belonged and that he would have as much choice over his everyday life as possible.
She found us a wonderful care home in a small ex-mining town in West Fife. There are a number of features that make it right for my dad and for the other residents with dementia. It’s small, only 20 bedrooms, each fitted out with residents’ own furniture and belongings. The kitchen and dining room is open all day, with small dining tables beautifully dressed with linen and fresh flowers; and meals, tea and coffee available all the time. The dining room lies at the heart of the care home, as it would in any family home.
But what makes my heart ease and gives me pleasure is to see how much dad is part of the home. He pushes the medicine trolley, folds the towels in the laundry, polishes the handrail, hangs the washing out, and dries the cutlery. He is part of a family there. He is understood, and has a valued role.
His desire to escape has tested out the security of the home, and although this has abated, he still has a strong urge to get out. We have worked with the staff to think of ways that he can get out to pick up the papers (normal activities) rather than subdue him.
It’s over a year since he first went to live there, and I think he is more settled and happier than before. His life has been enhanced. His choice for his recent birthday celebration was a cheese and wine party, and I appreciate that the staff created a celebration that really was focussed on his choices.
So, the dad who ran a business, played bridge and golf and travelled extensively with his wife hasn’t gone. Even if he doesn’t know my name or exactly who I am, he still knows me, and is still keen to get out for our weekly walk around the nearby loch. He still enjoys the coffee and cake we have every week, and I enjoy the moment when he cuts his cake, and slips half onto a plate for me. Ever generous, ever kind, ever my dad. Very much here and part of life. He lives life in the moment and is always appreciative of any kindness and the beauty and wonder of everyday life, whether that is the gorse blooming its vibrant yellow flowers, or the dogs and children playing around the loch.
The package of care he receives takes creative thinking and a willingness to look for non-traditional solutions. It’s innovative in its simplicity – it’s about knowing who he is and building on what capacity and interest he has.
So I am left thinking about this burning question of how do we place older people and especially those with dementia and their carers at the heart of our communities? How do we share the sparks of innovation, and ensure that Scotland is at the forefront on dementia care? In my current role I spend time working with organisations and groups to help them think through tough questions just like these. It’s not always easy to think outside the box and really bring creative approaches to our problems when we are all faced with the reality of having to deliver a high quality service day in day out.
In January 2018 I will be focused on supporting the Fire Starter Festival, a series of events about creativity and innovation in public services. The Fire Starter Festival provides an opportunity to explore issues like dementia with a network of people across (and beyond) public services. We are currently in the process of shaping our approach to this year’s festival. If you would like to be part of a conversation on dementia – or if you have your own burning issue you want to share – please let us know, or come to one of our taster sessions in the early autumn. For more information on the Fire Starter Festival please visit www.firestarterfestival.com.