The champion and the bookcases
It sounds like a title from the CS Lewis series of novels about Narnia, but it’s far from fiction, writes Alison Fisher, our Day Opportunities Manager at Southampton Living Well and Dementia Friends’ Dementia Champion.
There are an incredible 120 types of dementia including Alzheimer’s, vascular dementia, Parkinson’s, Huntington’s, and Lewy body dementia. And there are currently around 900,000 people in the UK with dementia according to the Alzheimer’s Society.
All of us are likely to come across someone with the condition in our lifetime and it may impact on a friend, parent, partner, or sibling. It’s also important to point out that dementia doesn’t care about your age, and it can be genetic.
Some people are diagnosed young, so it shouldn’t be pigeon-holed as an issue for those in old age. You could be in your 40s and physically fit.
Yes, some people do you get it because of lifestyle. For example, there is a type that is related to alcoholism, but in general there’s no rhyme or reason and it could happen to anyone.
At our Southampton Living Well hubs and through our SCA Care home care teams, we focus on the person first and dementia second. It’s very important, as part of our person-centred approach to care, that we treat everyone as an individual. Like everything in life, one size doesn’t fit all.
I can’t stress enough how important it is to look at the person not the condition. Your relative or friend is still an individual and everyone is on their own journey.
Also, just because someone has dementia, we shouldn’t forget that they have the same emotional needs as everyone else.
When people talk about dementia they often forget about the person – they are still there. They dwell on all the negative connotations associated with the condition such as confusion, memory loss, disorientation, and mood swings.
But it’s important to remember that someone with dementia is still your loved one and is still able to have conversations and should not be treated like a child.
Seven years ago, when I was studying for my Level 4 NVQ, I did a research project on the portrayal of dementia on social media and how society viewed people with the condition. Things weren’t good then and although awareness is much greater now, dementia is still treated negatively.
When I’m asked, ‘what does it mean to live with dementia’ my answer is simple – why should there be a distinction, people with dementia feel like everyone else does and it should be viewed as not being different, but part of being ‘normal’.
I love the bookcase analogy. Have you heard it before? It’s where we all have two bookcases each. The first bookcase is a factual one. It’s flimsy and can be easily knocked over and each shelf represents a decade. This bookcase is the one that holds information like what we had for breakfast, which is on the top shelf. If you go down to the bottom shelf, that’s where you find your childhood memories.
The second bookcase is an emotional one. It’s made of solid oak and is full of emotions. It’s packed with the way something made us feel, the way someone made us feel and it’s always there.
Just because someone has dementia it doesn’t mean this bookcase has fallen to pieces. So, it’s vital to ensure that making someone happy, whether that’s with a day out to the seaside, chatting to them or by singing with them, isn’t neglected. It shouldn’t be passed over in favour of simply caring physically for them by providing them with meals, helping them get dressed and reminding them to take their medication. Although all this is of course equally as important.
If you have a friend or relative with dementia, it’s essential you don’t argue with them, for example, as this will make them sad. And as their emotional bookcase is very much intact, it will have a profound impact on them and their wellbeing. It’s vital for us to remember that just because they’re not mentally with us and using the top shelves and all the books that fill the first bookcase, it doesn’t mean they don’t have feelings.
More recently I have been heartened that there has been an increase in mainstream TV coverage of dementia. Soap operas and TV dramas including Casualty, Holby City and Neighbours have all covered the condition.
People are talking about it more now and there is greater positive awareness. As we get closer to the Alzheimer’s Society’s Dementia Action Week running from May 16 to 22, I am sure there will be more conversations and greater coverage.
There are films that are worth watching too, if you’d like to find out more about dementia and get a feel for the person, not just the condition. I recommend the 2014 movie ‘Still Alice’ based on the novel by Lisa Genova. It stars Julianne Moore as Alice Howland, a university lecturer diagnosed with Alzheimer’s shortly after her 50th birthday.
There is also the 2020 film starring Anthony Hopkins and Olivia Colman called ‘The Father’, which is told from the father’s point of view as he succumbs to dementia. It’s deliberately confusing, just how someone with dementia might see the world.
For both films, remember to have a box of tissues handy. Your solid oak bookcase will be overflowing with emotion when you watch these!
To find out how you can join Alison’s team or work with our home care colleagues, please click here.