I hate dementia. It's a horrible illness that strips us of our dignity and makes families lose their loved ones. It causes a huge burden in caring and as yet has little in the way of help or cure.
Dementia is an area that divides the medical profession. From Professor June Andrews statement that GPs should be sued for failing to diagnose dementia to the more pragmatic Dr Gavin Francis who was amongst a group of doctors who described the 'cash for diagnosis' policy on dementia and reaching new levels of absurdity. (this was a brief contract that offered GPs a sum of money for each new diagnosis of dementia they made)
All doctors are agreed that dementia is a very significant and emotive diagnosis. The division arises from the thought that diagnosing the illness early is of benefit.
There are a few drugs now available in the UK that are licensed to slow the progression of Alzheimers type dementia. The problem is they don't really have a clinically significant effect and have a high risk of side effects. One evidence review of multiple studies suggested that dementia medications showed a 2.8 point less deterioration in the ADAS-Cog dementia score after six months compared to placebo. Bearing in mind this is on a scale of 0-70 that's not going to make a huge difference in quality of life. It's also worth noting that there is very little published evidence out there comparing beyond 6 months.
There are some reasons that make it worth seeing your doctor early if you have concerns about your memory. First of all there are a host of investigations to rule out other causes, B12 deficiency, underactive thyroid and depression can all mimic dementia. And some dementia is caused by vascular disease in which case it is worth treating blood pressure and cholesterol.
Being diagnosed early can help with planning too. Facing the thought that you may one day not be fit to make decisions about your life is a hard subject to broach, but naming a medical and financial power of attorney is a much more straightforward process while you still have that ability.
When considering something like this, I ask myself what I would want if I was the patient, or their relative. I don't know that I would want to face the diagnosis at an early stage, and I definitely would not take dementia medication as I currently feel the impact of side effects greatly outweighs the benefits in disease progression. However if they ever come up with something more effective, I would reconsider.
What I would do is take up the offer of investigations, just in case there was a treatable cause. I would want to plan with my family the best option for future care, any financial considerations and sadly inform the DVLA (this is compulsory if you have been diagnosed with dementia).
I would follow any lifestyle advice that may help slow progression and I would support any causes that help support carers for people with dementia and research into the illness.
http://www.alzheimers.org.uk/
http://www.alzheimersresearchuk.org/
What I am planning to do, and hope other people take up the cause. Is make a special date for considering dementia on the 25th May. (okay it's after next week, but bear with me)
I am a huge, huge fan of Terry Pratchett. His books taught me more about the joys and frailties of human life than any degree or course. Anyone who has read 'Night Watch' will recall the revolutions of the 'Glorious 25th May'.So come the 25th May, change your profile picture to a sprig of Lilac. 'Wear the lilac' for dementia in memory of Sir Terry, and donate to his JustGiving site which is raising money for RICE
https://www.justgiving.com/Terry-Pratchett
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