Hello. I’m Hilary Doxford and I was diagnosed with early onset Alzheimer’s disease in 2012. I have got lucky and it would appear my decline is very slow and I have been re-assured to see others similar to myself who received a diagnosis over 10 years ago and are still able to lead fulfilled if challenging lives.

I am still driving, working and on the whole able to mask the problems it causes me. I was relieved when I got the diagnosis as it explained my problems, gave me the proverbial kick up the backside and totally changed the course of my life.

That change began when I joined the Alzheimer’s Society research network which opened many other doors in particular enabling me to make some contribution to research work into finding a cure, delaying or slowing down progression and care for people with dementia. What I’ve seen and heard has been re-assuring. Although still there under the surface, my initial fear at what lies ahead has been reduced. I truly believe great strides have been made and continue to be made to overcoming dementia and helping us live as well as possible with it. BRACE impressed me from the start and I am pleased to be able to do what I can to support a local charity who show just how much can be done with limited resources. I applaud Mark and his team and I am pleased to be taking part in a clinical trial at the University of Bristol.

My life with Alzheimer’s is harder than it used to be, but still very manageable and enjoyable. It is true, you can live well with dementia and for a lot longer than we are sometimes given credit for. We just need to be given the time to garner our thoughts and the tools to help our brain do its job. I am often asked what symptoms I experience, I have a list of over 50, for now they are nuisances and irritations. However, I never knew that just thinking could be such hard and tiring work. My short term memory is my greatest difficulty. I do find complex multi-faceted problems or even long sentences difficult until I break them down into bite size chunks. My brain won’t hold the bits of information I need in its short term memory so I write a lot down, for example I can no longer even multiply a two digit by one digit number, because I need to retain a single carry forward number for a few seconds to complete the maths and my memory won’t do it - frustrating.

In my various voluntary roles I have areas where I push for change, my top five are:

1.       To avoid replication and duplication of research work nationally and internationally: resources and expertise are limited, we must ensure we get the best value from them and not re-invent wheels.

2.       Anecdotal evidence: academics and researchers are too quick to dismiss patient feedback on what works for them. I accept you need evidence before a treatment can be sanctioned but researchers should be listening and investigating, particularly interventions that nature already provides. I (and many others) take high doses of vitamin B and I am convinced I would not be working today if I didn’t take these (but check with your GP first).

3.       To understand, share and learn more from the failed trials: there is increasing evidence that the 130+ types of known dementias is underestimated and that for example Alzheimer’s can be sub-divided into different types. It concerns me that clinical trials are unable to target the right sub-groups and that so called failed trials could work for some people. This was recently evidenced by Eli Lilly and their review of a ‘failed’ trial that actually showed promise for those in the early stages of the disease.

4.       To take a common sense approach to research with respect to bureaucracy and red tape. So much time is lost in gaining ethics approval, hoops have to be jumped through to obtain relevant data. Yes we need checks and balances, but they need to be sensible and proportional to the risk. We can never eliminate all risk, if we did we would get no-where but the current risk/benefit ratio in my view is weighted in the wrong direction.

5.       To increase awareness of the problems of those with dementia and their carers, the enormity of their problems, their bravery and strength each day. I want everyone who is not part of the dementia community to know who the real heroes are, it is those at grass roots level who toil away day in and day out without the recognition so deserved. I may not be able to say thank you to your face, but believe me, every day I think of you and thank you.