Dementia diagnosis – When the light dawns

The first time I came across Mr Smith he wasn’t in the clinic or even a hospital bed. Instead, he was sitting at the wheel of his car, which he had somehow wedged into a small passage that leads only to the hospital waste bins. ‘I’m stuck’ he said, with a hearty laugh ‘..can’t find my way out of the hospital’. Bear in mind that we’re a small unit amidst the cabbage fields, with one road in to a little car park, and one road out. Warning bells (unheard by his family) started to ring.

We were looking after Mr Smith’s wife who had taken to her bed, her spirit no longer able to fight the daily battle of a crumbling spine. He hadn’t come to see her at first, but their sons travelled from London to visit. They explained that their father had been a little tired lately but no doubt would be along. ‘Mum and Dad are never apart for long’ they said. I asked them about their father’s health and they said with big smiles ‘Oh Dad’s fine. He’s just overdone things lately – too many rounds at the golf club probably!’

Warning bells

The second time Mr Smith came to see his wife, I watched more closely. The warning bells pealed louder as he asked her the same question several times over, seemingly unable to retain anything she told him. She good humoredly gave the same replies, perhaps used to this repetitive conversation or maybe just too weak to question it. It was time to talk to their sons again.

Gradually it was dawning on the family that all wasn’t well with their father.

‘I must admit’ said one ‘the house was in a terrible state when we came down. And there were half a dozen full milk bottles on the step. I’m not sure why Dad hadn’t got them in but why the hell did the milkman keep delivering? But you know what it’s like, we’ve both got busy jobs. Neither of us has been down for some time although we talk every week on the phone. In fact, Dad has rung us a lot lately, often late at night. He seems to be getting in a bit of a stew about their finances but two in the morning isn’t the best time to try to sort things out.’

Do you hear those bells again?

His brother added that an old family friend had been asking whether things were all right. She had bumped into Mr Smith at the supermarket, where he seemed to be struggling to find what he needed. He didn’t recognise her and brushed off her offer of help in an odd way. Meanwhile another friend had rung to ask why they hadn’t seen him at the golf club recently – it seems he wasn’t overdoing his favorite sport at all, but instead was losing interest.

Getting a diagnosis

Gradually it was dawning on them that all wasn’t well with their father. I explained a little about possible explanations for his symptoms, including dementia, and they later went with him to talk about it with his GP. I met them all again when they brought Mrs Smith back to my clinic for a follow-up check. Their oldest son explained that the local PsychoGeriatrician had confirmed dementia. ‘It was tough to hear, of course’ he said ‘but really its been a wake-up call for us. It’s made us realise that we haven’t too many years left with Dad, so we’re all spending more time together as a family, and that has actually been rather nice. And we’re making some changes which should improve things for both Mum and Dad, and make their last years easier.’

An estimated six out of ten people with dementia go undiagnosed. It’s something we see frequently, not just among our elderly patients but their visiting partners and friends too. Our experience quickly alerts us to subtle clues of cognitive problems – odd reactions, poor memory, a struggle to process instructions that we’re passing on. Meanwhile, people close to them, such as Mr Smith’s sons, can be surprisingly blind to the changes, perhaps because they develop slowly, or because families tend to find simple explanations.

Fear and stigma

But slowly the questions add up. Then the difficulty can be to find a way to broach the topic. Even when people are aware that they have problems with their thinking, the stigma and fear of a diagnosis of dementia may keep them from talking about it. We have time to explore the problem with our patients, but can’t intervene when someone is just a visitor. However, as in Mr Smith’s case, a quiet word with the family to suggest they starting considering the situation may be all that’s needed. Browsing the many resources on the web enables them to understand better the way dementia can affect people, and often they quickly start to recognise typical patterns of behaviour.

Mr Smith was easily persuaded to see his doctor to take things further but others may avoid the issue. One suggestion I often make to families is to talk about the value of a general health check to look for problems such as an underactive thyroid gland which are common in later life and can cause the body and mind to slow down a little. It may seem sneaky to focus on the small number of reversible causes of cognitive impairment, but it’s an easier way to start the conversation.

Once the person has accepted that there’s a problem and a doctor might be able to help, they usually open up to further investigation. And when people aren’t ready to face the issue, I just urge families to simply get more involved, learn about the challenges of dementia, and be ready to support their loved one in whatever way might be useful.

Many people question the value of knowing the diagnosis because there’s no cure. But just like many other diseases where there’s no cure, the enlightenment of a diagnosis can empower families and even the person themselves, helping them to understand what to expect in the coming years and take steps which will enable them to get the most from what time is left to them.

All names have been changed, photographs are posed by models.

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This is a cross Blog post with Department of Health Social Care News.