Category Archives: Diagnosis

Chris Roberts presents at ADI2015

DAI Board member Chris Roberts presenting at ADI2015 and Marc Wortmann, CE of ADI in the background
DAI Board member Chris Roberts presenting at ADI2015 and Marc Wortmann, CE of ADI in the background

Chris opened the workshop session on Friday 17 April, titled: Involving People with Dementia in Research and Clinical Trials.

I’m humbled and honoured to be a part of this conference and listening to all the great work actually being done on my/our behalf.

You see “I” have dementia, mixed dementia, vascular and Alzheimer’s, but with emphasis that I may “have it” but it certainly doesn’t have me!

Yet.

Who am I? ;

I’m 53 years young, married with five children and two grandchildren; my wife is still my caring wife. I live in North Wales, UK.

Pre diagnosis

For a couple of years before I was 50, I was having problems with scattiness, my memory and getting lost in familiar places, we never drew the dots between myself having a stroke in 2008 and what was happening, lack of education about the dementias.

But I also have a diagnosis of emphysema, so we likened my scattiness to my lack of oxygen and self diagnosed for a couple of years, totally wrongly! 

It was during a regular check up at the doctors that we mentioned this, she said no, no!! 

So the testing began.

My diagnosis only took 13 months, I didn’t mind this because as well as a timely diagnosis it also has to be a correct one.

No support or information was given during this process.

At diagnosis time, just as we were being told, there was actually a knock on the door. The receptionist asked if we could hurry up as someone had been waiting a long time and was getting agitated!

I was given what I call my ‘welcome pack’ and shown the door,

We knew absolutely nothing; we were just left all alone! 

We stood in the car park and cried.

We called family together for a holiday, the last one,

We were grieving and I wasn’t even gone yet.

Total lack of support and information!! 

But I had responsibilities, I am a father husband and grand father, we needed to know more, we researched and trawled the internet for information, but we needed correct information, there is so much rubbish around! 

Dementia is not death on diagnosis

 After researching, we realised it wasn’t death on diagnosis!

I pulled my socks up and decided to look forward now, not back, to embrace my new future.

Affairs were put in order; I even chose a care home for the future.

Then we got help from the Alzheimer’s Society UK, the dementia advisers were great.

We realised how little folk know, 

Everyone has heard the word… “dementia” but most don’t understand what it means! 

We decided to be up front with diagnosis, told everyone, even put it on face-book, I now use social media to help educate others, to spread good info, even started my own information page.

I was feeling empowered again! Worthy!! 

We now meet with our local council services and now advise for them, even started a new social group for all ages and their families

Joined the dementia friends initiative, trained as a dementia champion and with my wife’s help have delivered over 18 sessions over the last 12 months speaking to 300 people about what dementia means. 

I found Dementia Alliance International, who are for and by people with dementia, advocating, conducting webinars, virtual cafes and master classes; I even became a board member ! 

Joined and contributed to dementia mentors, hosting one of their virtual cafes, even started talking about my experience of dementia, after all we are the experts!

They’re now being 6 national working groups of people with dementia around the world with dementia alliance international at the forefront working in partnership with Alzheimer’s disease international. 

What about my family?

That’s me but what about my family? My diagnosis was also given to all my family, even my friends! 

We can’t ever forget that, they will long remember when I can’t.

It can affect them just as much.

As much info and support is needed for them, younger carers especially fall through the net.

My mum in law has recently moved in with us, herself being diagnosed with Alzheimer’s too, one more the wife might need a license?!

But as we’ve heard here today, things are changing and with the continuing support of people like you more people with dementia are also being included in their own decision-making.

Research is being funded better than ever, education is being promoted and stigma is being reduced.

Care and appropriate services are being supplied and more importantly being improved upon, 

But still there is a long way to go yet!

From the bottom of my heart, and on behalf of people with dementia, I thank all who are trying to make our lives better whilst we try to live well.

Thank you very much! 

Dementia Research Wrap Up #4

Slide4Our latest Dementia Alliance International Dementia Research Wrap Up #4  for April 2015, generously provided and written by Dr Ian McDonald.

Thank you Ian.

Over the past few weeks there have been a few advances in relation to treating the pathological signs of dementia (in the brain). This means trying to get rid of those toxic proteins which cause brain cells to die and memory loss and other dementia related symptoms to occur. While this news is always exciting to hear, most of this research being reported on is in its earliest stages and some of the trials are yet to move from animal testing. So while small steps are being made, a long road is still ahead. I’ll give you a brief overview of three of these new trials recently reported on.

Research out of Australia has shown that an ultrasound scanning technique can reduce and remove amyloid beta plaques from the brains of MICE with Alzheimer’s disease. The results, published in the Journal Science Translational Medicine, showed that applying the ultrasound technique on mice with Alzheimer’s disease removed amyloid beta plaques from the brain, and in some cases, cleared the plaques completely. Treated mice were also found to perform better on a variety of memory tests, indicating that it may also reverse the symptoms of Alzheimer’s disease.

Another lot of Australian research has provided evidence towards an infrared light therapy being able to treat Alzheimer’s disease. In this mouse study, published in the journal Alzheimer’s research and therapy, daily infrared light therapy was able remove and reduce the levels of toxic proteins and plaques associated with Alzheimer’s disease.

So while both of these approaches have been able to break up the plaques which are considered responsible for Alzheimer’s disease onset – so far the results have only been seen in mice. The skulls of mice are much thinner than those of humans and thus the approach would need considerable modifications before clinical trials can be undertaken in humans. We’ll certainly keep posted to see how this research progresses.

Moving along a bit further, results were also recently released by a pharmaceutical company called Biogen showing that a drug called Aducanumab has had promising results as an Alzheimer’s disease treatment during a Phase 1b clinical trial.

So what is a Phase 1b study? They are intended to demonstrate ‘proof of concept’ and confirm a hypothesis, while also evaluating the safety, tolerability, and efficacy of the experimental treatment. If the results are promising, the researchers will then move into larger trials and longer term trials, known as Phase 2 and 3.

In this their analysis of the results, the researchers found that this drug was able to reduce amyloid plaque levels, and in turn slow down cognitive decline in a small number of people with early stages of Alzheimer’s disease. So with these results, the researchers will now move into larger and longer term phase 2 and 3 trials and assess further if any side effects might occur as a result of taking this treatment.

So while it can always be exciting to hear about an Alzheimer’s disease breakthrough it is important to delve further into the results and see exactly what they say. I would also recommend anyone wanting to participate in a research clinical trial to have a read of some information on our website around what’s involved when participating in a research trial – http://dementiaresearchfoundation.org.au/whats-involved-participating

To read about these studies in full have a look through our blog here – http://dementiaresearchfoundation.org.au/blog

Video of Master Class 1: I’ve Been Diagnosed with Dementia. What’s Next?

On September 3, 2014, over 20 people gathered online in a “Zoom room” via video conferencing to learn how to plan and take control of their lives after a diagnosis of dementia. Our teachers were two DAI board members, both with dementia: Sid Yudowitch (USA) and Sue Stephen (Canada).

If you missed the class or would like to experience it again, here is the video.