One of the most difficult issues about dementia, particularly in developed countries like the UK and the USA is whether we should attempt to diagnose it as soon as possible.
There are two lobbies that want to make the diagnosis of dementia earlier and earlier. In one corner are the pharmaceutical companies. The sooner you know you’ve got Alzheimer’s the sooner they can sell you some medication. This sounds cynical, but you could look at it as saying that the sooner you know, the sooner you can start to get clinical benefits from what medication is available, if you have the specific conditions that the medication is limited for. In addition, the sooner you know, the more helpful you can be in helping with research into the condition. In the same corner are those, like the Dementia Services Development Centre at the University of Stirling, who want to help people to live better with dementia. That’s the group I belong to.
While there is no cure, and the medication is not spectacular in its effects, at least you still have some things in your control that can ease your journey. The sooner you know, the more you can pack in before it is too late. Unfounded, or even well founded, suspicions about pharmaceutical industry influence should not rob patients of that.
Against both of them are clinicians who still think that there is little point in diagnosing dementia, and those who think that looking for it in the early stages is an unhelpful interference in the lives of people who are still independent and unworried. Why upset them, they argue, when there is virtually nothing we can do? Why look for it in the early stages, when we might make a mistake about whether it really is dementia?
Well, we need to tackle that view because even if some clinicians believe they have nothing to offer, the family, the community and the person affected by dementia may have a great many things they’d like to do, and diagnosis is the starting pistol that lets them get going in a race against time.
We can’t turn the clock back and I think has been a significant increase in awareness about dementia in recent years. One strong reason for this is the activism of great advocacy organisations like the Alzheimer’s Association in the USA and the Alzheimer’s Society in the UK. They and the media also bring dementia to the attention of governments, and raise money for research. A crucial intervention for waking up governments has been letting them know how much dementia costs them. In the UK it’s more than cancer, heart disease and stroke put together. And the numbers are going to double in the next twenty years, so we need to work out what we are going to do about it and how we are going to pay for it, if the cure or prevention work does not produce results in our life time.
We do need to ensure that we professionalise dementia care.
From my experience, as a dementia specialist working in a number of countries, I find myself often faced with enthusiasts who are newly aware of the problem and really want to make a difference in dementia or Alzheimer’s disease, but they really don’t know much about it. I’ve met people with job titles like “Alzheimer’s champion” or even “dementia adviser”, who don’t have the equivalent of a high school certificate in the subject (in the UK think GCSE). Don’t get me wrong… unqualified people can have fantastic knowledge, but if they were working in a cancer ward, or in community care for cancer, we would not call them “Cancer advisers” or advise a family doctor to call them for help. The international trend for getting citizens to be labeled “dementia friends” after doing a short awareness experience is remarkable. I recently worked with a health systems management team who were proud that they’d all done this dementia awareness, but eight out of ten patients with dementia in their locality didn’t even have a diagnosis, far less a specialist nurse or a referral to any agency or volunteer team for support. I have really strong view, based on evidence and international consensus about what works – which I wrote about in my book – and about what people with dementia would really benefit from. Failed diagnosis or amateur help is not enough for most patients.
This year an international survey about attitudes to dementia is being undertaken. The early results show that awareness of dementia is high but it raises interesting questions about how we are doing currently in dementia care and what we need to do to plan for the future. The outcome will be published at the International Dementia Conference in Birmingham at the Vox on November 4th and 5th.
So what is indicated so far? Some matches what appears in the press and general media reporting of dementia, reflecting increased awareness, some enthusiastic amateur responses in some parts of the world. Also we see a large dose of fear in the absence of organised services and a failure of confidence among many clinicians, in particular doctors, in existing services.
The survey is part of the Dementia Festival of Ideas. Although we are already harvesting information from this survey, it isn’t closed. It is not that sort of research. It’s part of a necessary conversation where we need to start challenging the idea that raising awareness is making any impression in the job of work that we have to do. So please join in.