Worried about your memory? Or a parent’s memory? Is it time to be tested for Alzheimer’s disease and have your fears confirmed or put to rest? Given the stigma, the lack of useful medicine, the absence of a cure, I’ve wondered about the point of an early diagnosis. How soon is too soon to know? The first time you put the kettle in the fridge? The first time you can’t find your way home? Surely once a person is labelled with the disease it changes how they’re viewed and treated by family, friends, and the wider world. Surely it’s better to bumble along for as long as possible unlabelled.
Not everyone shares this view. I’m full of admiration for the people in the Alzheimer’s Australia campaign, launched last week, to end the stigma around dementia. You really must see this video. It shows three people in their 60s, Glenda, Graeme and Keith, who have a diagnosis of dementia and are happy to reveal it. They’re articulate; poignant about the exclusion they’ve suffered, but engaged in life. They sing in a choir, bowl, do volunteer work. They demonstrate that dementia doesn’t arrive full-blown; it doesn’t start with the wordless, blank stare of the end-stage. For many years people can lead purposeful lives if others show understanding and make allowances.
Yet getting the diagnosis and “coming out” come with costs. “I felt as though I wanted to run away,” says Glenda, a former school principal. “I wanted to almost die…It felt to me as though it was going to be the end of my life.” Friends disappear; no-one knows what to say…it’s all too embarrassing. Not a lot has changed since Hazel Hawke, wife of the former Prime Minister, bravely came out on the ABC’s Australian Story in 2003. She’s still the only prominent Australian to admit to suffering Alzheimer’s as far as I know. Despite greater awareness, we’re no less frightened of the disease, and no closer to a vaccination, a treatment or a cure.
It doesn’t surprise me that, according to Alzheimer’s Australia, 50 per cent of people with dementia die without the disease having been diagnosed. Perhaps a lot of people wonder what’s the point. But now there’s a big push for early screening of dementia. Memory clinics have flourished in the UK – the government has committed to “one in every town and every city” – and GPs are rewarded for administering memory tests to older patients. In the US, Medicare covers an annual wellness visit to a doctor that includes a memory test. PET scans of the brain are the latest development with their controversial promise to detect signs of Alzheimer’s 15 years or more before the disease manifests.
Australian specialists in geriatric medicine, including Professor David Le Couteur, from the University of Sydney, and Dr Helen Creasey, formerly of Concord Hospital, caused a stir with a paper published in the British Medical Journal last year that criticised the rush to early testing. Such tests were often distressing, costly and inaccurate, they argued, and would expand the diagnosis of dementia to include ever more people. “Although evidence suggests that only five to ten percent of people with mild cognitive symptoms will develop dementia each year, current policy in many countries is aimed at encouraging more widespread and earlier diagnosis of dementia,” Professor Le Couteur said.
In Australia most experts think getting a formal diagnosis is a good idea, and some consultants, I’m told, are already using the PET scans on patients who can pay. But the emphasis here is more often on a “timely” diagnosis than an early one. Glen Rees, the CEO of Alzheimer’s Australia, told me: “If a person has had a succession of dramatic and frightening events that prove to them they’re not functioning, at that stage if not before, it’s wise to go to the doctor. Many people with dementia say it’s a relief to get a diagnosis. It confirms what they know — that something’s wrong. It enables access to services and the care system, and it can be a prompt to putting one’s affairs in order.”
In the case of the trio in the video, a formal diagnosis was probably imperative given the symptoms began in their 50s. With early onset dementia (before age 65), families are desperate for an explanation for a loved one’s bizarre behaviour. Dementia might be the furthest thing from anyone’s mind so a formal diagnosis can solve a mystery.
I went to Professor Le Couteur and Dr Creasey, the critics of early screening, to ask if there was a right time for a formal diagnosis. Both agreed that as with other health problems if symptoms were having a significant impact on a person’s life, they should see a doctor. Dr Creasey said it was often the carers who wanted the certainty of a diagnosis. Once connected to support groups, carers can benefit from learning how best to respond to a loved one with Alzheimer’s. “But for the person with Alzheimer’s the benefits of a diagnosis are not so clear,” she said. “People can get depressed, even suicidal. They’re ostracised, they can lose their status and autonomy.”
Professor Le Couteur turned more philosophical: “There’s more to being old than being a professional patient, having tests, taking pills and seeing doctors,” he said, adding that “frailty and dementia await many if not most people if they live long enough.”
So let’s accept the reality that dementia will be a prominent part of life as more of us live longer; weigh the pros and cons of a formal diagnosis; be inclusive of, not embarrassed by, people with memory issues; and focus help on people with established dementia whose families are really struggling.
Here is the link to the video
What’s your view on getting a formal dementia diagnosis? Please comment.
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