Volunteer’s Journey on a Clinical Trial at Re:Cognition Health
Geoff’s wife Susie has been a clinical trials volunteer at Re:Cognition Health since 2013. Below he shares their story:
How old was your study partner when diagnosed?
My partner Susie was 64 when she was formally diagnosed with early onset Alzheimer’s in February 2013. She had been presenting with mild cognitive problems for about 18 months prior to diagnosis. Susie was retired when diagnosed and prior to this she was working as a medical secretary for the NHS.
Why did you decide to participate in a trial?
Sadly, the medications currently available for the treatment of Alzheimer’s only attempt to mask the symptoms and do nothing to stop the progression of dementia. The clinical trial route was the only option that could offer any hope of a positive outcome – it was an easy decision to make.
How do you think the trial has been beneficial?
For Susie, participating in the clinical trial has definitely slowed the progression of her Alzheimer’s, it has also reduced her apathy and anxiety. I measure this by observing her peers at various dementia groups we attend. Her cognitive abilities are way ahead of other people who were at an equivalent level, when we first met them a few years ago.
For me and our family, it gives an element of perceived control, we are being proactive rather than passively watching Susie’s gradual decline. TauRx, (the pharmaceutical company making the new drug that Susie has been taking since 2013) may not have found the silver bullet for Alzheimer’s but it is keeping us in the game and places us in the perfect position to take advantage of any opportunity that may arise with other trial drugs. We still have a light at the end of the tunnel.
How did you find out about the trials?
Our daughter Emma found out about the trials on the internet – she works in the NHS as a speech and language therapist – our first contact was with TauRx in America in May 2013 and we were passed onto Re:Cognition Health who were recruiting for the trial in the UK.
How has your clinical trials journey been? Any particular highlights?
Our journey so far has been excellent, we have always been treated with respect and understanding by everyone at Re:Cognition Health. Susie’s health has been monitored all the way through with any changes, however minor, being fed back to our GP for action if required. We turned clinic visits into days out, coupling them with an overnight stay and meeting up with old friends.
What were your expectations?
We hoped for the best, we were optimistic and six years on we still remain the same.
What advice would you give anybody in a similar position?
We will find a solution, the pharmaceutical companies are putting great efforts into finding one and they need our help. Don’t be a bystander, be a trailblazer and help find a solution now, a great legacy for our children and the next generations. My advice is as follows:
1) Accept the diagnosis, the sooner you do this the better you will both be at adapting to the challenges that you will face.
2) Focus on what you and your partner can do, not what you used to do and will probably struggle to do now. This helps banish resentment.
3) Go with the flow and empathise with your partner, the more you understand how they feel the easier it is for you to help them and reduce your own stress.
4) Avoid activities that can be unsettling or distressing to your partner.
5) Learn from your mistakes, build on the strategies that work when dealing with your partner’s mood swings, lack of understanding or unwillingness to co-operate. (It’s a bit like the film Groundhog Day). A small adjustment can have a significant benefit. e.g. Prompt or remind them rather than tell to do things; encourage and give praise rather than showing frustration at their unwillingness to co-operate. I picked most of this up observing how our daughters were with our grandchildren.
6) Be pro-active, join dementia support groups. You will get guidance and support and may learn some handy tips.
7) Take part in research both clinical and lifestyle. Currently, there is no cure for Alzheimer’s, the most common form of Dementia. Taking part in clinical research gives us hope – the breakthrough may be just around the corner – and we are at the front of the queue. (Sorry if that sounds selfish!)
8) Move closer to your children if possible, we did this a couple of years ago and get great support from our daughter and grandchildren (14 & 7) who are just 5 mins walk away.
9) As a carer, get to know your stress limits and let off steam when you need to – a good old swear now and again certainly works.
10) Most important of all: Always remember the person you love is still there, so hold hands, have a laugh and a cuddle, make sure they know you love them. Because you are both on this journey together try and make the most of it, after all, “Happiness is a journey, not a destination”.
If you or your loved ones would like to take part in our clinical trials or find out more about the trials, please contact our specialists today and we will get to you as soon as possible.