‘My dad lived with vascular dementia for 19 years. It began when I was just 12 years old and Dad was 66. Dad went without a diagnosis for 10 years and then spent the last nine years of his life in three different care homes. He died in April 2012, when he was 85. We went through a lot as a family as his dementia progressed, and experienced many different health and social care services, both excellent and exceptionally poor, but I believe all of those experiences can help to inform and influence others. I want my work to make a real and lasting difference for people living with dementia and their families, and that will be Dad’s legacy.’
Why did you start your blog, D4 Dementia?
‘It was never something I planned. The Government had launched the Prime Minister's Challenge on Dementia while my dad was very poorly and the condition was in the news a lot just after he died. I started the blog as a hobby, a way to respond to the debate and to talk about our experiences; writing felt like a cathartic activity for me. I launched D4 Dementia in Dementia Awareness Week and announced it on social media. Alastair Campbell, the journalist and aide to Tony Blair, retweeted one of my posts in the first week and it just went haywire. My blog was shortlisted for an award, I was involved in the planning for the G8 Dementia Summit in 2013 as well as making a film for the Summit, and that led to the campaigning and consultancy I do now. My background is as a freelance sports journalist and editor but dementia and issues around ageing in general have become my whole work life.’
Did your dad’s dementia affect his relationship with food?
Yes, because he loved to eat! He was a cattle farmer and would bring fresh, unpasteurised milk home from the farm. His favourite meal was roast beef. And he had two allotments where he grew fruit and vegetables. He wasn’t a brilliant cook, though; that was my mum. Then his approach to food changed – he stopped eating foods he'd previously enjoyed and wanted cheese with every meal, resulting in him putting on weight. It was one of the signs something was wrong, long before his diagnosis of vascular dementia.’
Beth with her father, Ray. Photograph copyright Beth Britton
Dementia can cause difficulties around eating. Was that your dad’s experience?
‘Sadly, yes. In the last four years of my dad’s life his swallowing reflex deteriorated – a condition called dysphagia. It caused him to choke and led to chest infections as food “went down the wrong way” into his windpipe, which meant he had to take a lot of antibiotics and had a few hospital inpatient stays when he was very poorly. Choking can leave someone gasping for breath and it’s terrifying to witness. The only safe way for Dad to eat was for him to be seated upright in a chair, propped up with lots of cushions, and for him to be given lots of time to chew and digest his food.’
How well was his dysphagia managed in his care settings?
‘We had problems with staff, particularly agency staff, who didn’t know how to manage Dad's dysphagia. And when he was admitted to hospital, staff would often refuse to order food for him or help him to eat as they felt eating was too dangerous. The nurses would hear Dad making noises that they assumed meant he was in pain, so they asked the doctors to write him prescriptions for morphine. But actually the sounds were signs that he was hungry. It meant that Mum and myself had to take charge of his food and eating. The consistency of foods is a key factor when it comes to swallowing difficulties. Too thick, and a food would get stuck in Dad’s mouth or throat and cause coughing. Too thin, and it would easily go down the windpipe. We found smoothies a great solution for Dad as they thicken well and are easier to swallow, but they’re also tasty and nutritious. Homemade soups are also excellent.
Nourish Beetroot and Sweet Potato Soup
Did your dad have any good food experiences in the homes?
‘The contrast in what Dad was served was incredible. Hospital food tended to be too thick and like glue. Care homes often served liquidised food that was thin and unappetising. The exception was the last home he stayed in, where Dad spent two weeks receiving end-of-life care. The chef produced meals that looked and tasted lovely, and that Dad could eat safely. It was such a difference and shows, not just that there is a lot of room for improvement, but that it can be done.’
Do you have any advice for those supporting people with dementia to eat?
‘I talk a lot about not being wedded to routine. Work around when the person wants to eat – "grazing" can be really great for someone who wants to walk a lot – and give the person foods they love, not just "what everyone else is having". You can have a dementia-friendly table setting with contrasting crockery that makes it easier to identify for the person living with dementia. In a care setting, avoid doing the vacuuming or cleaning while people are eating and reduce distractions – no TV! And make mealtimes relaxed, social events where the food actually looks appetising.'
What do you want to achieve next as a dementia campaigner?
‘In 2012, I did a presentation to BRACE, a dementia research charity based in Bristol. At the event, a care provider said, “You need to train my staff”, and it was a lightbulb moment for me. I’ve spent two years putting together a training package for social care providers to help them deliver intuitive, effective care for people living with dementia. I've begun to roll out my training, which includes strong elements around supporting families affected by dementia. As well as my 19 years of personal experience of dementia and related health and care services, in my consultancy work I meet so many people going through their own experiences, and I learn as much from them as they learn from me. I have always, and will always, advocate for the inclusion of people living with dementia and their families in every aspect of dementia care and support. Policies should always be made in conjunction with the people they affect.’