Today I became a Dementia Friend.
Dementia Friends is an Alzheimer’s Society initiative. The idea behind is it to give people some understanding about what dementia is, what it’s like to live with dementia and how we as a society can use that understanding to help people with dementia live better.
The Dementia Friends site here explains it better as well as providing all the information you need to become one yourself. You don’t really need me to explain the ins and outs of it, just know that they’re not asking people to volunteer all of their time and money.
I knew very little about dementia before today and I decided to join in because of that reason and because I do come into contact with elderly clients sometimes working as a legal secretary. My employer offered it to everyone so I figured why not?
I’m not going to go into all of the details of the training as you can find it on the dementia friends website here, but it is really simple and not very time consuming at all.
Instead I’ll share some statistics, some info, two really good analogies, some examples of what dementia does to people, how we can help people and famous people who have had dementia.
First some stats and info!
So unbeknownst to me there are actually 100 different kinds of dementia as it’s a brain disease that can affect the 4 different cortexs of the brain in different ways.
If you want to learn more about the different kinds of dementia then the Alzheimer’s Society has a great link here.
There are currently 850,000 people with dementia in the UK. That number is set to rise to over 1 million by 2025 and 2 million by 2051.
1 in 14 people over the age of 65 will be affected by some kind of dementia.
That rises to 1 in 2 of people with downs syndrome.
Dementia is typically seen as an old persons disease. The youngest person to be diagnosed was actually in their 20’s. Carla Bramall, a mum of 2, was diagnosed at the age of 30 and now aged 39 is bedbound. You can find more about her story here.
Dementia can be genetic. The exact causes of dementia are uncertain but as well as being genetic, people who abuse alcohol and drugs are more susceptible to dementia later in life.
Analogies
I wanted to share these as they helped me understand dementia a lot better than oodles of info on the internet ever could.
Fairy lights
Imagine a long string of fairy lights. Each light represents a brain function or skill you’ve acquired. Thinhs such ch as breathing, moving, sleeping, talking, eating, being able to tie laces and get yourself dressed etc. Dementia is a progressive disease so first it attacks just one or two of those lights. It doesn’t switch those lights off completely, just makes them flicker on and off. After flicking those lights it then moves on and finds more lights to attack. And repeats the same thing over and over until there are so many lights constantly flicking on and off that some of them turn off completely. Eventually, the constant attacks from the disease just get too much and it shuts everything off.
Bookcase
Imagine your brain is a bookcase.
One half of the bookcase is made of solid oak and is very sturdy. This side houses your emotions.
The other half is very flimsy and houses your personality and your memory.
When dementia attacks, your emotions remain fine in the oak side (the part of the brain responsible for emotion is much more resilient to dementia). But the books containing your memories and your personality start rocking. Your top shelf is your most recent memories; what you had for breakfast, what your partner and children are called, the film you saw at the cinema last week. The shelves then go down by decades with the bottom shelf being your first years.
When dementia attacks, it rocks the flimsy side so that some of your top shelf books / memories fall out of the bookcase. But they find themselves back in the bookcase before too long and you’re fine again.
There’s only so many times the books can work their way back onto the shelves and eventually the books are lost forever. So you move to the next level in your bookcase and start reading those books. Except those books are from 10 years ago.
The same thing happens to those books so you move down to the next shelf, then the nect shelf, then the next shelf until you find yourself stuck reading the same set of books over and over again.
Step into their reality
What dementia friends is hoping to achieve is to make people understand that it makes people happier if you step into their reality rather than trying to drag them kicking and screaming into yours.
Most people with dementia revert to a time in their 20’s and 30’s when they had children, were working and were happy.
It’s always better to leave someone with dementia happy than upset and confuses.
Can you imagine how hard it must be to be constantly told that your husband / wife is dead and has been for a long time when in your reality you waved them off to work that morning?
You can’t change a dementia sufferers reality, so don’t try. Step into their instead.
How you can help dementia sufferers
First and foremost remember that dementia is a disease and there’s more to a person than just their disease.
Understand that one of the issues with dementia is that it can alter the sufferers perception. You know those big round mats in supermarkets? Some sufferers see those as blackholes. Blue carpet? Water to someone whose afraid of drowning.
Instead of trying to change their reality, understand what theirs is. I was told about an elderly lady who carries a doll with her and holds it to her breast to feed it because to her that baby is real and she’s feeding her child. I was also told about a man who hadn’t spoken for 2 years, everyone assumed he was a mute. In actual fact he was Polish and the dementia had attacked his ability to understand and speak English.
If someone has dementia it’s important to dig deeper because there’s always a way you can help them it’s just finding out how.
Abbeyfield House
I know there are more examples of dementia care homes thinking outside of the box but Abbeyfield House in Surrey is the one I’m sharing.
You can find out more here. But they’ve designed the whole facility with the fact that most residents believing they’re in the 50’s in mind. It’s not decorated to modern tastes, there are no mirrors to remind them of their actual age, there’s a dedicated nursery for those who still think they’re nursing and taking care of their babies. There’s a reason that the majority of their residents aren’t on any kind of drugs; they’re allowed to live happily in their own reality.
Terry Pratchett
I love Terry Pratchett’s discworld and he’s a really good example of how dementia affects different people in different ways.
Terry didn’t have memory loss problems. He had a rare form of demetia that affected his vision instead. He was diagnosed in 2007 and continued writing right up to his death in 2015. 2 weeks before he sadly died he did a radio interview. Terry didn’t have a problem with communicating but whilst he could do that interview with ease, he had a problem with sequencing so couldn’t dress himself.
Robin Williams
I loved Robin Williams growing up. Mork and Mindy. Mrs Doubtfire. Aladdin. I loved them. As I grew up I still appreciated both his work (jumanji and patch adams are firm faves) and who he was as a person.
So when he died I was genuinely sad. I was even more surprised when it came out that he suffered with depression, anxiety, paranoia and had the onset of Parkinsons disease. All of these things were just some of the unpredictable symptoms of DLB or Dementia with Lewy Bodies which was only diagnosed after his death. So severe was his DLB that in the months leading up to his death he was totally and utterly confused. So paranoid was he about his state of mind and what was happening to him that he took his own life.
These are just 2 well known examples, but this and more is happening to people we know and love. I have no doubt that most of the people who read this blog with either have first hand experience of dementia or know of someone whose had it.
The reason I’ve written this blog is because becoming a Dementia Friend is all about taking action.
I can’t volunteer to help people with dementia. I can’t support someone who has dementia. But what I can do is share the important message that as a community, if we had a better understanding of what dementia is we could help sufferers live well. Instead of being frustrated, angry and confused we can make their last years happy.
So my action is to help people understand that to help dementia sufferers we need to step i to their reality. If you see someone struggling with their pin number, ask them if they’re ok and need any help instead of getting frustrated and holding up the queue. If you see someone who looks lost, ask them where they’re going and if they need any help. If you see someone who looks confused in their surroundings, stay with them and distract them with chit chat until they’re less confused.
It’s easy to say “it’s not my problem” but you could be the 1 in 14 and wouldn’t you want the same understanding that these people need now?
Links
More about Terry Pratchett’s dementia
Robin William’s widow explains more about the months leading up to his death
What not to say to a dementia sufferer
Donate to Alzheimer’s Research UK