Seeing the person behind the dementia diagnosis

If you read my January blog, you will realise I am speaking from some personal experience on this. My mum was formally diagnosed with dementia last year. Everyone's journey is different, and hers was a real eye opener for me. Firstly, the way it started was quite insidious. She didn’t start by forgetting anyone’s name. She just started to randomly, every now and again, forget to take her tablets. She had a medidose system (one of those cases with different little boxes for morning and evening for each day), which my sister filled up every week and we started seeing that on the occasional day, she’d just forgotten to take them. Not very often – at first. But it got more and more frequent. We changed the medidose system for one with an alarm to remind her. It didn’t make any difference. She complained she had too many to take, and didn’t like ‘those big ones’. It seems so ridiculous now, but we actually thought at the time she was doing it on purpose to make a stand in her own way – a bit of a ‘you’re not going to control me’ sort of stance and that was the only thing for some time. Then she stopped doing her jigsaws. She almost always had a 1000 piece one on the go and she was good at it. I realise now this was because she couldn’t concentrate – later on, she would enjoy doing simpler jigsaws - but at the time, she didn’t know what to do, so just stopped. She stopped reading books, but everything else seemed normal - she still read her magazines, so it wasn’t so noticeable. Again, books took more concentration. 

But on Boxing Day 2022 when I saw her at my sisters, she seemed not quite right. I couldn’t put my finger on it, but she had a rabbit in the headlights sort of look about her. And in the months following that, it started to quickly become clearer that something was wrong. She couldn’t remember what she’d had to eat. She stopped showering without a reminder. She had to have dressings on her legs and couldn’t remember why, so would remove them quickly after the nurse had gone. She started wondering off up the street and a couple of times fell over. She tried to give her house keys to the window cleaner. She stopped watching TV. She lost track of time and stopped going to bed. 

But she always knew who we all were. She always knew who I was, who my sister was. She always remembered her hospital consultant (he was apparently a ‘bit of alright’). People who she had long-standing relationships with, she remembered, even if she hadn’t seen them for a long time. Her new GP was always a surprise to her though, as she was transferred to him more recently.  

My mum was always very compliant, and I would say she ‘did dementia’ well. I put that partly down to her personality; she was a lovely and gentle person and partly down to my amazing sister, Sally, who was so reassuring to her, always. Think what it’s like when you lose the thread of what you’re talking about. It’s on the tip of your tongue, but you can’t quire remember it. Or you walk through a door to get something and then can’t remember why you’re there. This does occasionally happen to me (I’m a woman of a ‘certain age’ - I’m sure some of you who understand what this is like). It’s frustrating. But eventually I find a way of remembering. Imagine this happens more and more to you. It would start to make you anxious and eventually frightened. A lot of the behaviour exhibited by people living with dementia stems from anxiety, so they need a lot of reassurance, rather than being reminded that what they are talking about isn’t right. So, for example, a lady living with dementia at the hospital we were at with Mammy a few weeks ago was accusing the staff of taking her things. We saw one Healthcare assistant respond harshly to demand ‘why would I take your things?’ But actually the lady just couldn’t remember where she’d put anything, didn’t really understand why she was there in this unfamiliar environment and was simply anxious. My sister suggested to her that maybe her son, who had visited that afternoon, had got them put away safe, and that she didn’t need to worry and do you know what? She calmed down. It was a reassuring suggestion she accepted. My mum was the same when she couldn’t find her purse, for example. I’d say to her, Sally has that safe, don’t worry, and she was reassured. So correcting someone living with dementia can make them anxious. Going along with it or providing a reassuring reason for things does help.  

We all see patients living with dementia in our Nuclear Medicine departments. Notice that I call them patients living with dementia, not dementia patients. I strongly feel we should not label people or let things like their dementia define them. My mum was what I would call an extraordinary ordinary woman. She was a teacher, although she never moved very far away from where she was born - as is the case for a lot of people who live in the Yorkshire mining town where I grew up. She would often bump into people when she was pottering to the shops who would say she’d taught them. She used to say how old it made her feel as these people stopped being young mothers and became older women with grey hair and grandchildren themselves. But they all remembered Mrs Hepplewhite fondly. She made a difference to them. And to me she was the best mum anyone could have wished for. She was kind, she was generous and she was funny – even when she developed dementia. She called it ‘The Forgettery’. See, funny. Another thing I loved about her was that she was totally partisan. Always completely on my side, my cheerleader. And don’t we all need one of those? She was just the best sort of person. If you had her as a friend, as so many did, your life was richer for it and you were lucky.  

She was 86 and frail, and living with dementia – but my goodness, she was brave about it. No-one else’s face will ever light up like hers did whenever she saw me. That never changed. I remember when I told her I was President of BNMS, how impressed she was. Then she asked me to write it down so she got it right when she rang round all her friends to show off her bragging rights. 

So it sounds obvious, and I’m sure most of you do this, but when a person who is living with dementia comes to our departments, we need to remember that they are a person first and foremost. They will have lived their own extraordinary ordinary life. We need to respect them, to understand and reassure them, but not be condescending (don’t let me get started again on being called ‘sweetheart’ by strangers in hospitals). We need to be kind. 

You might have already guessed from the past tense references. Mammy succumbed to Sepsis and died on the 26th February. So this is my tribute to her. I couldn’t write a blog this month on anything else – it’s too much of a life-changing event for me. I’m so sad she’s gone, but so grateful to have had her for so long. Life will never be quite the same again, but a life having had her in it will be forever enriched.  

R.I.P. Barbara Hepplewhite, an extraordinary ordinary woman. 27.6.1937 – 26.2.2024

Ms Jilly Croasdale

BNMS President