Latimer: The under-diagnosis of dementia

Few specialists are qualified to give detailed testing for dementia…these services are not usually included under…medical coverage.

We have known for some time that dementia is under-recognized in most places around the world.

A recent study published in Neurology examined a group of 845 seniors 70 years or older and found that 55 per cent of individuals with clear symptoms of cognitive decline had not had a formal evaluation of their cognitive function.

The authors extrapolated from these data to conclude that in the US nearly two million seniors with clinical dementia had not seen a physician about their memory problems.

In the UK last year, the same problem was recognized and led the government to introduce a controversial program in which general practitioners were to be paid for each diagnosis of dementia made. In that country, the National Health Service estimated that only about half as many people with dementia had been diagnosed as should be based on population studies of the prevalence of this condition.

What is concerning about these findings is that dementia is a serious, life-changing condition requiring action from patients and their families. Both sufferers and their loved ones need support and may also need to make legal and financial decisions to cope with the reality of what is typically a degenerative disorder.

Of course, recognizing dementia is also a necessary step for treatment and research. Although there is currently no treatment that will stop the progression of dementia or reverse its effects, there are some treatments that can provide modest help.

There are also a growing number of investigational treatments in various stages of research that are actively seeking volunteers. Not only are volunteers essential in order for new treatments to be developed and approved, but there is also a chance of receiving help not otherwise available when taking part in a clinical study. Obviously, when unaware of a diagnosis, it is difficult to take part in treatment or study options.

Of course, not everyone with memory problems has dementia. As I wrote in last week’s column, there are many psychiatric conditions with cognitive deficits that can be difficult to treat and can even closely resemble dementia. Certainly, in my own specialist psychiatric practice, most people with memory issues do not have dementia.

One of the big concerns with the UK idea to pay physicians for a specific diagnosis is the likelihood of false positives.

Unfortunately, aside from the basic cognitive testing available from most physicians, more sophisticated testing for dementia is either hard to come by or costly – often leaving people reluctant to pay for it.

There are few specialists with the tools and training required to give more detailed testing for dementia and these services are not usually included under regular or extended medical coverage. Fear and stigma are also barriers for people concerned about the possibility of dementia.

Many people are afraid to ask the question because they don’t want to hear the answer or fear the possibility of losing their driver’s license or independence in other ways. Even doctors are sometimes reluctant to bring up the topic of dementia because they may feel ill equipped or as though there is little they can do to help patients and their families.

Dementia is a progressive disease whose consequences are eventually unavoidable. It is easier to deal with those consequences – both individually and as a community – when we can do so in a gradual, progressive way rather than when suddenly faced with a crisis.

If you have concerns about your memory I encourage you to speak with your doctor.