How does dementia begin? What are the early signs? When should you talk to the GP? Nobody’s story is exactly the same, but this is how it went for us.
It was a beautiful warm early summer day in 2012. Our two daughters were visiting and it was perfect weather for a picnic by the lake.
We weren’t the only ones making the most of the sunshine. A group of runners – about 20 of them – were making their way around the other side of the lake. A few minutes later and they were thundering past us, going for it, bodies glistening with the effort.
‘Who’s that?’ asked Lena. ‘What are they doing?’
‘Must be the local running club. Looks like they’re taking it seriously.’
We went back to our sandwiches, fed a few ducks, uncorked a bottle. And then, a few minutes later, the running pack circled past us again, still not letting up.
‘Who’s that? What are they doing?’
‘It’s the runners again. The ones who came past before.’
When she had the same questions on their third circuit, I caught Josie and Annelie’s eye. Little frowns. Had Mama had too much to drink? Was she OK?
For them, this was new – but it wasn’t for me. For a couple of years now, I’d been noticing little changes in Lena. She’d always been amusingly scatty, occasionally forgetful – like the time on our first overseas trip together in the early 1980s when she left her purse and all our holiday money in a Paris restaurant … when you’re young lovers who cares about little things like that?
But now it wasn’t just the morning hunt for the glasses any more. Lena would come up to the study and ask if I wanted a coffee. It never arrived. That bedtime book she was reading – it had been the same book for the past three months, and she kept asking me the meaning of the same word. And just last week, she’d been studying on a course for the befriending work she was doing: she’d broken down in tears saying that none of the words made sense any more. This just wasn’t Lena.
A year back, I’d asked her to talk about her new forgetfulness with her GP. When she came back, I asked her how it went. ‘Fine’, she said. ‘Nothing to worry about.’ After the lake events, I decided it was time for a second visit – and this time I’d go with her.
The GP was a formidable woman, someone who clearly had no truck with time-wasters. We had not much more than five minutes with her, and I quickly outlined my fears, explaining that Lena’s dad had been diagnosed with dementia in his late years.
‘Yes, but your wife’s only 63. Most unlikely to be something like that at her age. But if you make a new appointment, I’ll run a few tests if that’s what you want.’
She ran the tests – a series of mental ability questions – and we went back. The doctor was stern with me. ‘There’s nothing wrong with your wife at all. What you’re seeing is just the normal effect of ageing. We all forget things – you probably will too before long. So I suggest you just show Lena a little more understanding.’
To be honest, those may not have been her exact words – I don’t remember. But that’s the way she made me feel – as though I’d betrayed Lena.
18 months later, and we’d moved house – not by any means for the first time in our married lives. Normally Lena would have been in her element, making all the arrangements. This time, she struggled even to pack a box. When we got to our new home, she would set out for the shop and get lost. We registered with the local surgery, and they checked our medical history. Within a fortnight, they were sending Lena off for a brain scan at the hospital. Yes indeed, it was Alzheimers.
So when should you see the GP?
Don’t be put off by our bad experience with the first GPs we saw. In the past 5 years, the medical profession’s understanding of dementia has grown enormously, and it would be unusual these days to hear a doctor telling a patient that they’re too young for dementia: we understand now that it’s not just an illness of the aged.
Nevertheless, in 2016 just 61.5 per cent of patients with dementia were appropriately diagnosed, according to a recent report. Why? Partly because clinicians may ‘misattribute’ the symptoms to another condition, says the report. But also because people are afraid to present themselves to their GPs. A slew of statistics from Alzheimer’s Research UK helps us to understand this fear. 62% of people interviewed believe that a diagnosis of dementia means their life is over. 68% think that it would make them a different person. 42% think that they would stop recognising their loved ones. And 56% of people put off seeking diagnosis for a year or more.
Well, here’s my response. Yes it’s true that Lena, now in the late stages of dementia, struggles to recognise people, but she knows what love is and who loves her. Has it made her a different person? Yes – but only gradually, over a long period of time. Is her life over? Absolutely not. She still loves being with people, and we’ve had plenty of good times together post-diagnosis, still do – even though the nature of our relationship has inevitably changed.
The whole point of The Care Combine, and the work we’re doing with The Bine is to make these post-diagnosis years – and there may be many of them – just as productive and meaningful and happy as the years before. And to do so for both the person with dementia and their carer. There’ll be new challenges – just as there were when we started school or changed jobs. And the challenges won’t always be easy – but they never are in adventures.
These are our tips:
- Increasing forgetfulness or muddle-headedness may not be a cause for worry. I find it harder than it used to be to remember names. A couple of times recently, I’ve been planning to throw something in my left hand into the bin, but my right hand does it instead. But if you notice patterns of behaviour changing consistently – like repeating the same question every five minutes, then do seek advice from the GP.
- The GP will ask what evidence you’ve seen. Keep a notebook for a week or two noting examples of unusual behaviour repeated frequently.
- If you’re the partner of someone with suspected dementia, go to the GP with them. If it’s you who’s affected, take someone with you, someone close enough to be familiar with the changes.
- Don’t be afraid. There is a life after diagnosis, for carers too – and we’ll help you to find it. So will others – there’s lots of help out there these days if you’re prepared to look for it. And don’t think it means you’re getting old. Dementia hits people in mid-life too.
- If the GP says the symptoms are just a sign of old age, get a second opinion. Don’t delay, as we did.
How can you stop those repeated questions?
You can’t! If that’s the course dementia has decided it’s going to take, you can’t stop it. It’ll be the same with all the other changed behaviours you’re going to meet later.
What you can do, as carer, is take control of your own responses.
I’m learning that better now in the late stages of dementia. (I’m still learning as you’ll have seen if you read my story ‘The Day I Kidnapped My Wife’.) In the early days, I’d often snap back at the repeated questions – ‘I just told you. Why don’t you listen?’. Or if Lena made an assertion that was clearly untrue – like saying that her mum was still alive when she’s been gone for 15 years – I’d argue with her, point out the logic:
‘We visited her grave last month, when we were in Stockholm.’
‘I know, but she’s not dead. Don’t say that. You don’t know her.’
Logic doesn’t work with dementia. Nor does snapping back. Nor does ignoring the question. All it does is create confrontation, cause resistance. It makes Lena unhappy. And it makes me unhappy.
So, if you start getting those repeated questions –
– Who’s that? What are they doing?
… just give the same answer you gave before. When your head tells you to add ‘and that’s the tenth time I’ve told you‘, just learn to bite your tongue. It’ll hurt less.
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