30 January 2018

You’ve got a friend

Earlier this month, my workplace hosted a Dementia Friends’ information session. Dementia Friends is an Alzheimer’s Society initiative that aims to transform the way people think, talk and act in regard to dementia. I expected to be familiar with much of the course content, but opted to attend anyway, to formalise my support of this cause – I am now the proud owner of a pin badge confirming my status as a Dementia Friend!

In fact, it transpired that there was plenty for me to learn and I’d like to take this opportunity to share with you the five key messages promoted through this programme. The messages are in bold text below, but I’ve also included some elaboration, as well as my own comments, after each one.

Dementia is not a natural part of ageing

Many a friend or acquaintance, on hearing about my parents, has commented ‘Oh, my Mum/Dad doesn’t have dementia, but…’ and then gone on to describe behaviours that sound very much like dementia, but which they attribute to their parent’s age. While I’m no expert, the evidence presented often makes it clear that, at the very least, the situation requires further investigation.

It’s only natural to go into denial, if you fear dementia is at play, however, denial has never solved any problem! Given that diagnosis of the condition can be a lengthy process, it’s better to seek medical advice sooner rather than later. And there are many other illnesses that could be to blame – for example, urinary tract infections in the elderly can cause a significant level of mental confusion.

Above all, trust your gut instinct. You know your loved one better than any medical professional, so if you sense that something is wrong, you are, in all likelihood, right.

Dementia is caused by diseases of the brain

A lot of people use the terms ‘dementia’ and ‘Alzheimer’s Disease’ interchangeably. Alzheimer’s is actually one of many diseases that cause dementia, and, while it is the most common, there are actually 100+ types of dementia. The second most common is Vascular Dementia and others include Dementia with Lewy Bodies and Frontotemporal Dementia. 

Obviously it’s helpful for doctors to identify the type, to establish the best course of treatment – there are medications that can slow dementia’s progression – but it can also be useful in helping friends and family to understand how the condition will develop. For example, in Vascular Dementia, this tends to be a ‘stepped’ decline, with plateaus followed by sudden deterioration, while Alzheimer’s is usually more gradual.

Dementia is not just about losing your memory – it can affect thinking, communicating and doing everyday tasks

Never underestimate the ways in which dementia can affect somebody. The information session leader asked us to imagine the brain as being full of fairy lights, with each one representing a particular function. Nobody knows which fairy lights dementia will turn off, or in what order. That helped me to understand why Mum can race through a crossword, but is unable to write a Christmas card without help.

Every single aspect of a person’s functioning can, therefore, be affected, including mobility and visual perception. Somebody with dementia may, for example, be frightened to enter a shop because they perceive the dark-coloured rug at its entrance as a hole in the floor.

It’s possible to live well with dementia

In order to live well, it’s critical not only to be diagnosed – so that you know what you are dealing with – but also for this diagnosis to come early enough to implement measures that will facilitate independent living. My sister and I learned the hard way that, at a certain point, people with dementia become unable to take on board any new learning, whether that be a gadget or a system, such as notices or lists.

About a year ago, we bought our parents a day clock, which is simply a clock face with the days of the week marked on it and a pointer. We thought it would help them to keep track of the passage of time, but they never use it. Either they don’t recall that it is there – right in front of them in the living room! – or they simply don’t know what it is. At the time we introduced this, their symptoms were at the low end of moderate, yet it was still too late for them to adapt to this new feature in their lives.

I have, however, read some amazing stories of people with dementia who, with the right support in place, continue to work and travel and lead relatively normal lives. Some even blog about their experiences, including Kate Swaffer and Wendy Mitchell, both of whom have early-onset dementia. Wendy also has a book about her experiences coming out this week, which is a remarkable achievement by anybody’s standards.

There’s more to a person than the dementia

It can be hard to remember this, when your life seems to have been consumed by the practicalities of caring for somebody whose ever-changing needs all revolve around dementia. It’s hard also to remember this when so many elements of the person you love have already been lost. Yet nearly every time I speak to Mum and Dad, I’m reminded that they are fundamentally the same people they always were. 

Dad still displays his wicked dry sense of humour, enjoys listening to the football on the radio and loves his food – especially his post-meal chocolates. Mum delights in chatting about anything and everything, doing crosswords and walking – oh, and engaging in cheeky banter with any tradesman who visits their home! And they are still the Mum and Dad who worry about their daughters, as evidenced when I was recently laid low with a nasty virus.

How to be a Dementia Friend…

The Dementia Friends’ programme aims to help people learn a little more about dementia and to turn that knowledge into action - and they make clear that ‘No action is too small’. 

So that might simply mean being patient with the person in front of you at the supermarket checkout who is struggling to find the right change. Or not huffing and puffing at somebody who is blocking a shop doorway. Anybody you encounter could potentially be struggling with challenges caused by dementia. Give them the benefit of the doubt and, if you can, give them a hand.

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You can find out more about Dementia Friends here. You can also become a Friend yourself by watching this video or by attending a free one-hour information session – find your nearest one here.