In July the Alzheimer’s Society held their Awareness Week and I had the privilege to be invited to the launch of its research study into patient experience of diagnosis.
The study highlighted the Society’s concern that many carers do not contact their GPs when they first notice that something may be wrong with their parent, spouse, partner or friend. The average length of delay in seeking medical advice, according to the research, came out at three years. Clearly people are uncertain about even suggesting the possibility of dementia in someone that they love and care for.
Yet today there are many new services and drug treatments for people with dementia and nowadays a person with such a medical condition is in no way without any prospect of treatment and improvement in their situation.
I am sure that there are few people reading this who do not know someone directly or indirectly who has been affected by having to care for someone with dementia. In meeting some of the members and the Society’s supporters it is clear that their enthusiasm is enhanced by the success that proper medical care can have today.
But I use the word proper in a positive way. Even the medical world is uncertain about the way forward with patients with Alzheimer’s or a similar illness. The research highlighted the fact that less than a third of GPs and nurses feel confident about giving a diagnosis or talking to someone about their diagnosis of dementia.
Yet so much can be done today and the earlier that a diagnosis can be made and treatment prescribed the better. I learned a lot from the research and it was important for me to understand that dementia is seen in a much more hopeful and better light than many years ago.
Most people are aware of the high profile businessman whose sudden descent into dementia many years ago during a trial and equally sudden recovery once he had been acquitted as unable to defend himself deeply hurt the legion of carers who were coping with the real difficulties that are created by Alzheimer’s or related diseases.
In talking to carers and doctors today it is clear that many are still uncertain of their ground in diagnosing dementia but they all felt that the negative publicity from that notorious court case acted as a positive spur for the improvement in the medical world which continues today.
It is estimated that over 700,000 people in the UK have dementia and more than half have Alzheimer’s disease. The burden continues to fall on carers and so it must be. But it is now clear to me that the fear of diagnosis is still holding back many patients’ improvement using the very latest treatments.
As Harry Cayton, Chief Executive of the Society said to me, People with dementia are actually very clear about what they want- they value an accurate diagnosis from the start which allows them prompt referral to specialist services leading onto treatment and support. Delay doesn’t help anyone.
I am very grateful that it is a problem that has not-to-date touched my family or close friends but I hope that, should the occasion ever present itself, I will be strong enough to encourage that person to seek an early diagnosis. I know I should like it for myself.