Breaking the taboo: speaking out about dementia

It used to be cancer that was hidden, something that people didn't want to talk about because of the associated connotations of illness, pain and dying.The big taboo of today remains on the table, with as yet too little serious or major concerted input particularly on the part of Governments, to put this subject on everybody's lips and get some action happening, and quickly.

What is this taboo?

It's called dementia, the disease we are scared of, too scared to move out of the blaring headlights that are warning us of the impending tsunami of people likely to be living with or caring for someone with this disease.

The release of the film "The Iron Lady" may help with this, by encouraging discussion between families, between friends and perhaps politicians to really look at what dementia actually is, and what we can all do to help ourselves to resist the onset of this disease as well as to know what to do if we ourselves, or our partner or family member is affected.

In a newspaper article in the London Evening Standard Jan 11th the British Government Minister for Mental Healthcare Paul Burstow commented on the fact that there are over 40,000 people living in London who have dementia and are unaware of it. Now that is a worry.

There are already 65,000 people in London who have been diagnosed with dementia, with 26,00 receiving some form of treatment. He worries that this lingering taboo means many of these people face a delay in diagnosis or appropriate help because of the stigma attached. It's easier to ignore or deny a parent' s increasing forgetfulness and memory lapses until the crunch time occurs. This condemns them, to what he believes is a more miserable life and who will in the long run end up in hospital, receiving poorer care that may not be dementia specific. It of course removes the precious time remaining to them, when they and their families could be receiving advice and counselling about the management options and help care that is available.

This undiagnosed group is similar to those people who do not know they have diabetes. It has been known for a long time that there are probably an equivalent number of people who have diabetes, but do not know it, as there are people diagnosed with the condition.

If you have dementia and do not know it, what impact does that have on your own personal safety and those of others if for example you are out and about or driving a car?

Paul Burstow believes it is vital to bring dementia "out of the shadows" and wants London to become the first capital city in the world to be recognised as being "dementia-friendly" where staff in shops, Tube stations, superstores and cinemas are specially trained in helping confused people.

Whether you live in London, Sydney or Timbuktu, the primary message is that it is vital we are not afraid to speak up and talk about dementia.

We need to give ourselves permission to find out if we have memory problems, whether we do have a condition such as dementia and what we can do to ensure we keep safe while living in the community and to be able to access appropriate help.