My nan was 85 (I think) when she died. I was 15. For the last couple of years, she kept calling me Katie. Or Janice. Or Babs. She would talk to me about things as if I’d been there when they happened. The war, or her time in India before my mum was born. Her life in Portsmouth or living in the New Forest. I rarely had any idea what she was on about and while it was sometimes fun to guess which relative I might be today, it was sad that I wasn’t just me. Nobody told me that she had dementia until a lot later, by which point I had figured it out for myself.
When people speak of dementia, we tend to think of grandparents, people being long in the tooth and past it, getting a bit forgetful in their old age and calling us by the wrong name. The truth is that it can affect much younger people, as shown in the recent blockbuster movie, Still Alice. Sir Terry Pratchet (pictured above), who died earlier this week, was only 66 when he died – and only 59 when he announced his diagnosis. 59 is not long in the tooth and past it; it’s younger than my mother.
My sister works in the dementia wing of a local care home, doing a job I really doubt many of us could cope with. Her charges are mostly older people, but there are a couple of people who look far too young to be in a care home. Before she had her children, she would volunteer to work Christmas Day every year. I asked her why she would volunteer to do that, and she said it was because at Christmas, families would visit and you would often get to see a glimpse of who the person really was, or had once been.
A lot of people find it difficult to visit a relative with dementia; it can be really hard to turn up and not be recognised, not be remembered, or mistaken for someone else. Lots of people skip a visit here and there, and before long they’re skipping more visits than they’re making. I can understand that; it is hard to see. But my sister told me on so many occasions, that there was a clear dividing line in the day room, between people who had regular visits from home, and those who did not.
One lady in particular, had a husband who still lived at home. He would visit every day, without fail. This lady still had dementia; she still struggled to find herself. But she anchored herself to her life with these daily visits. She knew where she was; she knew she had dementia; she knew her husband visited. Every day she would ask “has John visited yet today?” And the staff would tell her yes, he was here this morning; or no, he’s coming later. With this, she knew who and where she was.
Things that can help a person with dementia:
- Regular visits from friends and family. There are differing views on whether you correct someone who constantly mistakes you for someone else, or try to make them remember you if they don’t – but just being there regularly can help.
- Music. I have a friend who runs a choir for people with dementia, and another who goes into care homes to do music workshops for people with dementia. Both tell me of the recognition and joy in their charges’ faces as a song they know comes on.
- Becoming a Dementia Friend. Being a Dementia Friend doesn’t mean that you have to volunteer or donate – though of course, you are more than welcome to do both. It means being aware of dementia, and how it can affect people – so that people with dementia in the community won’t feel so alienated and lost.
- Tolerance and understanding. It can be infuriating if you’ve already told someone something several times, and they still keep asking. Or to be wasting your lunch break in a queue behind someone who can’t find the right money in their purse – or can’t find their purse in their handbag. Everyone understands how frustrating it is to be inconvenienced, but imagine how infuriating it must be to be that person, to know you were told something but not be able to put your finger on what it was. Take a deep breath, and try to see it from their perspective.
Still Alice is in the cinemas at the moment; aside from telling the story of a woman diagnosed with early onset Alzheimers, it is an amazing story based on an incredible book. Both the book and the film can help us to understand dementia through someone else’s eyes – and really, empathy is what this is all about.
I’ve just started reading a book called Elizabeth is Missing by Emma Healey. It’s about a woman living alone with her daughter and carers coming to the house throughout the day. She has dementia, and it’s told from her point of view. It gives an amazing insight into what it must be like; we see her go to the local shop, but she forgets what she needs and to avoid being embarrassed, puts several tins of peaches into her basket. At the counter, the shop owner smirks and makes a comment about her needing more peaches. She goes home and puts the bag down in the hall, forgetting about it until her daughter arrives later and asks her why she’s bought even more tinned peaches when the kitchen is already full of them. At once, it describes the frustration of the people around her, but also the way she feels – she leaves notes for herself on the table or in the sleeve of her cardigan to try and remember important things. She knows there are things she needs to remember, but she can’t make them stick in her head.
It’s great that dementia is being written about more widely, and that these books are being made into films. They are serving to make people more aware of the issues surrounding dementia, so that it’s not such a mystery to us. I was kept in the dark about my nan’s dementia until she was long dead; I think my family thought it was better not to confuse me with such things. These days though, there are resources available specifically to help young people to learn about and understand dementia.
When someone has dementia, they can still live well and independently for a number of years; they do not have to go straight to a care home. They are not to be feared or avoided; you can’t catch dementia, and it can’t hurt you. All they need is a little help and understanding from those around them.
I’m working with BritMums and Public Health Envland alongside the #BritMumsDementiaFriends campaign. I have been compensated for my time. All editorial and opinions are my own. Visit the Dementia Friends site for more information and resources about coping with dementia among family and friends.