Category Archives: Dementia

Helga Rohra speaks at ADI2015

This week we are posting the speech given by one of our Board members, Helga Rohra, who is also Chair of the European Dementia Working Group. She was an invited keynote speaker on Day 2, asked to present on her life diagnosed with dementia. Helga’s presentation was poignant, funny, honest and very professional, and she was a shining star at the conference. When I have time. I’ll try and transcribe her speech to add as notes. Thank you for sharing your life with us all Helga.

It is important to note, that in Helga’s introduction, it was incorrectly stated she is the Chair of the first Dementia Working Group to have been set up in the world. Helga is Chair of the European Working Group, operating since 2012, but in fact, the very first working group, The Scottish Dementia Working Group,  was set up in 2002.  DASNI was set up two years before that, but has not remained exclusive to people with dementia, so there are six Dementia Working Groups around the world, where membership is exclusive to people with dementia, as is Dementia Alliance International.

Editor: Kate Swaffer

Cafe Le Brain Australia and our online Support groups

Screen Shot 2015-05-15 at 8.17.48 amCafe Le Brain Australia is re-commencing on the third Friday of May which is May 15th, being run again on a monthly basis from 1pm (Brisbane, Queensland time).

All DAI members will be sent the link to join as soon as it is back up on our Events calendar. For May, we will have a guest speaker, yet to be confirmed, but who will present on a topic of interest to people with dementia and their friends and family, and who will be available for questions.

Please keep May 15th free to join Cafe Le Brain Australia. 

DAI member, Mick Carmody from Brisbane in Australia, continues to host the weekly online support groups at a time suitable to those members living in Australia, New Zealand, Japan an other countries in time zones similar to them. Well done and thank you Mick for your dedication and enthusiasm. The details for this regular support group is below;

Online Support Group for people with dementia in Australia

Hosted by Mick Carmody on  Tuesdays 1:00pm – 2:30pm
at ZOOM Online video (map)
This support group is run by people with dementia, for people with dementia, and is a meeting place for people diagnosed with all dementias including Alzheimer’s disease or cognitive impairment under review. It is a confidential forum, not for professionals or interested others to attend, and the rule on confidentiality is that anything said in the group, stays in the group. Respect and dignity for all, as well as providing a safe and empowering environment are some of our goals.
Please contact [email protected] to register for this support group. The link to the group will be emailed to you the day before the support group meeting.
Go here for information about all of the DAI events and support groups.

Copyright: Dementia Alliance International

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

Last Night I wept, by Laurie Scherrer

Source:lugenfamilyoffice.com via Google images
Source:lugenfamilyoffice.com via Google images

This week we have a blog written by one of our members who has very generously agreed to share with you. Laurie writes beautifully about the losses, tears and sadness, but also acknowledges her ability to rejoice and be joyous.

Last night I wept.

I wept with an uncontrollable cry that consumed my throat, my heart and my gut.  Wrenching from me the feelings of guilt, loss and fear that have been held inside and stripping away every ounce of joy and hope.  I wept for the loss of my plans and dreams for life.  I wept because I know I am no longer what or who I was and am afraid of not being able to control the evolving me.  I wept for loosing my freedom to get into the car and go & do whatever/whenever.  I wept for the lost memories that now are only photographs to me.  I wept for the financial burdens this has brought.  I wept for my family and the changes they will have to make and the challenges they will have to endure.

There was no consoling me for there was no comfort for the overwhelming grief of what was and what is to come.  I wept until my shaking body gave in to exhaustion and I drifted to sleep.

Dementia (Alzheimer’s, FTD, LBD, etc.) doesn’t just happen over night.  It slowly robs us of our past, our present and our future.  Bit by bit taking away the person we were as it slowly eats away our brain.  I can longer be the Laurie I was.  It has robbed me of the ability to have a successful career, entertain large groups, enjoy parties, drive to see friends or relatives, or even keep up with household tasks.

It would have been easier, if I didn’t have the transition of knowing what is happening to me.  It is difficult seeing myself become less responsible and more dependent.  It is frustrating when confusion takes over my ability to reason, think, communicate and comprehend.  I am still Laurie, however I know by the way people treat me and by way I react, I am different – I am changing.  And at times I am afraid.  And at times, I weep.

But Laurie can still rejoice…

Today, I rejoice.

The weeping is over, the day is new and I am so thankful for all the things I can still share and accomplish.

I’m thankful I can laugh with Aunt Joyce while getting a manicure, and laugh with Roy over the beautiful colors of the huge bruise on my butt (fell on ice), and laugh with Becky over the ridiculously difficult puzzle I gave her.  I’m thankful there is joy in the little things.

I’m sure my emotions will once again invade my happy space and require some grieving time, but not today.  Today, I am going to laugh and enjoy all the beauty in my life.   Know any good jokes?

Thank you Laurie for allowing us to share your wisdom and insight.

Author: Laurie Scherrer Copyright 2015
Editor: Kate Swaffer

Seeking volunteers

volunteer
We are seeking the support of more volunteers, with and without a diagnosis of dementia.
Dementia Alliance International, an advocacy and support organisation, of by and for people with dementia. We are also a registered not for profit organisation thanks to the very generous donation by Dr Richard Taylor PhD. 
A few of our Board members, and some members of our Circle of Friends already volunteer significant amounts of time and expertise to run DAI, and some are working for huge amounts of time to run this group. 
We also currently have some very generous support from one person without dementia, who has informed us she will only be available to continue with assistance until July this year.
We have no regular funding, although last year a few members personally raised enough funds to support six members to attend ADI Puerto Rico, and this year, we have had limited funding from ADI since our collaboration with them, also only for use to support members to ADI Perth and certainly not enough for more than a very few to be able to attend, plus attendance at the two WHO meetings.
It can be frustrating trying to be an active member of any group, but specifically in this one due to our own symptoms of dementia it can be more difficult. 
Everything takes much longer. Sometimes we forget to do things we promised we'd do. Sometimes we even forget we said we'd do them. Members might find it frustrating, and due to their own symptoms of dementia, may not be able to be more supportive in the running of the group, but as members, they still expect a lot. Sometimes there are misunderstandings, personalities get in the way, and the D-factor is hard for us ALL to live with, even those members working hard to live better with dementia than others think possible.
We ALL have dark days, when it seems it would be easier to give up and cry.
The more we give to each other, to this organisation, and indeed to our own communities, the more we get back, and we need more people to give of their time and expertise to support the work of a very few members. Please consider actively volunteering rather than waiting for someone to contact you.
Specifically, we need people who would be able and willing to undertake some administrative support including the following;
  1. Support as required for taking and typing up minutes of meetings (in Australia, this is often at 6am - athough we record the meetings, so they can be done after!), assisting with editing and other administrative assistance as required.
  2. Support with social media and our website
  3. Mentoring new members
  4. Managing our online programs, including setting up the Event brite invitations, managing the time zones, etc. To give you an idea of what this entails;
    • We have a monthly Webinar called A Meeting of the Minds, usually with guest speakers
    • We run weekly support groups in two time zones
    • We run monthly cafes called Cafe Le Brain
    • During Dementia Awareness Month in 2014, we ran weekly Master classes and would need assistance with this if we repeat them later this year
    • We have a YouTube channel which occasionally requires support, e.g. uploading of new videos
  5. Some support with newsletters, marketing, and any other thing that might be requested of us, including presentations and other material to support attending or presenting at conferences.
Also, an update on the Wish Project we were working on, including the possibility of producing a book of wishes and images, is not for any organisation to use to sell, if it gets completed, it will be for promoting our members wishes. However, if there was a suitable way DAI could turn that into revenue raising, obviously with appropriate consents, it may be worth considering.  All funds would go to members and services; it costs money on a monthly basis to run DAI, which we don't have other than from some generous but only occasional donors.
If you don't have time to volunteer, but can afford to make a donation, then please do so. If you are attending any of our Webinars, and can afford to donate at the time you register, then also please consider doing so as it costs us money to run these events, for which we currently have no regular funding. 
What we can't do alone, we can do together.