Tag Archives: Editor: Kate Swaffer

Dementia Awareness Week UK Day 1

Slide5Research wrap #5: Reviews from ADI2015

By Dr Ian McDonald, Alzheimer’s Australia Science Communicator

Thank you Ian.

This week, we are publishing a blog each day as part of  Dementia Awareness Week in the UK, and with permission, I am commencing the series with three blogs written by Dr Ian McDonald, the Science Communicator at Alzheimer’s Australia, who usually write a monthly Research Wrap up for us. This will save him some work this month!

Scotland has a DAW scheduled in June, so we may find the energy to publish a blog e very day of that week too… please, if you have any articles you would like to write and have shared here, send them in.

I know these are a little delayed as it is almost a month since ADI2015 in Perth, but they are an interesting wrap of the conference. I have included an excerpt from each blog, but please do follow the links to the full articles. The next few days we will also be featuring more of the presentations by members, and others from ADI2015 in Perth, as they are uploaded to our YouTube Channel.

April 16 – Highlights from ADI2015: Developments Risk Reduction Diagnosis and treatment

Opening of ADI2015 Image source: Kate Swaffer
Opening of ADI2015
Image source: Kate Swaffer

Dr Richard Walley gave the official welcome to country on behalf of the Nyoongar people and said to attendees in his traditional language. Follow the link for the full blog.

I want to give presenters an ability to articulate messages in a clear manner and those who receive the message ability to pass it on and share,” said Dr Walley who also passed on a message stick to the conference which was accepted by two attendees.

April 17 – Highlights from ADI2015: Local and International Action against Dementia

Marc Wortman, the Executive Director of Alzheimer’s Disease International spoke about their current strategic plans now and into the future, telling attendees. Follow the link above for the full blog.

“Dementia is a societal problem and we need to provide care today while we look for the cure tomorrow,” Marc Wortman.

April 18 – Highlights from ADI2015: Engaging, Supporting and Including people living with dementia

The last day of the conference saw sessions focusing on new research into Younger Onset Dementia (YOD) as well as engaging people living with dementia and improving their quality of life. Today’s presentations had a focus on how society can best support and include people with dementia in everyday life.

Once again the discussion was led by those who are living with, caring for and/or working with those with dementia. Follow the link above for the full blog.

Editor: Kate Swaffer
Copyright 2015 Dementia Alliance International

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! 

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

DAI update on the first WHO Ministerial Conference on Dementia

Source: WHO
Source: WHO

It was significant and pleasing for our members that we were represented at this very important  World Health Organisation Ministerial Conference  on Dementia.  DAI Co-chair Kate Swaffer gave a key note speech on Day 2, and two DAI members Hilary Oxford from the UK, also a member of the World Dementia Council, and Michael Ellenbogen from the USA were part of a panel ‘The People’s Perspectives’ at the end of Day 1.

Alzheimer’s Disease International have reported on the event here, (the webcast of the DAI presentation is no longer available), and below is the transcript of the speech. Here also is the the power point presentation  WHO_17 March 2015_ppt for those of you interested.

Speaker notes: Day 2 Plenary Presentation

(Kate Swaffer, 8 minutes)

Slide 1: Distinguished guests, Ministers, ladies and gentlemen.

Thank you for the invitation to speak today; it is an honour and privilege to represent the members of Dementia Alliance International, and the global community of over 47 million people living with a diagnosis of dementia. It is important that people with dementia, in the same way as people with any other disabilities, are included as equal partners in the conversations about them. This is our basic human right.

Slide 2: In collaboration with Alzheimer’s Disease International, Dementia Alliance International has become the peak body for people with dementia globally, also working together with the Dementia Working Groups around the world. We also advocated for the World Dementia Council to invite at least one person with dementia onto the Council, and we are thrilled Hilary Doxford from the UK is a member. We welcome and appreciate this significant appointment.

I believe the People’s Perspectives session yesterday in many ways set the scene for people with dementia, because our lived experience is as important as finding a cure, and although I won’t share very much of my personal story, I have been a family carer for a number of family and friends with dementia, now deceased and am also a care recipient of services for people with dementia due to my own diagnosis. To say I have a very vested interest in dementia is perhaps an understatement!

We applaud the World Health Organisation for holding this conference, and the work of the World Dementia Council as well as ADI and everyone in attendance. Like you, we implore governments to invest more money into research, as that will save in the future, but we would hope that there is a more balanced focus in research, and not only the one after the golden egg, which is a cure. That focus excludes and denies the 47 million people currently diagnosed with dementia of better services, treatment and care.

Slide 3: The discussions yesterday were illuminating and of great interest to people with dementia, although it was interesting to note that rehabilitation and living well with dementia were not mentioned.

ADI have a charter “I can live well with dementia’ – for this to have any traction, people with dementia believe we must all include this goal in our work.

Slide 4: As someone suggested yesterday, we all may have many issues important to bring to this meeting, but three of topics of significant importance to people with dementia are;

  1. That we have human right to a more ethical pathway of care
  1. Being treated with the same human rights as everyone else, under the Disability Discrimination Acts and UN Convention on the Rights of Persons with Disabilities
  1. That research does not only focus on a cure, but on our pre and post-diagnostic care, and on pre and post vention including rehabilitation.

When I was diagnosed with dementia at the age of 49, I was told to get my end of life affairs in order, to give up work, to get acquainted with aged care, and to go home for the time I had left. I term this Prescribed Disengagement, but chose to ignore it and with support from the disability sector, engaged in authentic brain injury rehabilitation and other non-pharmacological and positive psychosocial interventions for dementia, including advocacy.

If I had been treated after a stroke, there are ethical and rehabilitative national and international guidelines; this needs to happen for dementia and thanks to ICHOM being led by Alastair Burns, this is in progress and I hope that rehabilitation becomes part of the guidelines.

It may not be a cure, but it will ensure we have a better quality of life, and I believe, research will ultimately emerge to prove it can slow the progression of dementia. If it only keeps people with dementia out of residential care for 12 months longer than we experience now, it will save governments billions of dollars. Many established mechanisms for development and assessment of clinical interventions have not been adapted to population ageing or to dementia. The time for this is now.

New, sustainable models of care that balance the role of family and government, and that overcome gender inequities, are urgently needed. Advances in information and communications technology, assistive devices, medical diagnostics, and interventions also offer much promise and it is promising that the World Dementia Council has this as part of their focus.

I have worked hard on re-empowering other people with dementia to reclaim their pre diagnosis lives, and on policy and research for dementia, on dementia friendly community initiatives in Australia, and have a particular focus on a more ethical post diagnostic pathway or model of care.

Yes I want a cure, but more importantly, I want a better quality of life for the more than 47 million people currently diagnosed with dementia, where best practice is the not norm, but still the exception. In rich western countries, this is especially unacceptable.

People with dementia also need to be at the heart of the conversations about them. We may not be able to march in front of our respective Parliament houses, but we are marching online in large numbers for inclusion, research, better care, and against discrimination and stigma. This is our human right.

We do not yet know whether people are living longer and healthier lives or are simply experiencing extended periods of morbidity.

Alzheimer’s societies and associations around the world, and people with dementia need to use the UN Convention on the Rights of Persons with Disabilities to benefit people living with dementia. ADI in their 2012 report quite rightly highlighted this out.

It is our human right not only to person centred care, and ethical care plans, which currently we are not often offered until we need palliation – if then, in some countries – but to a system and world that stops discriminating against us. The current system of care is unpalatable and unethical, and we deserve much more.

Thank you. (Kate Swaffer)

The full notes are also available to print here WHO Ministerial Conference on Dementia_17 March 2015_Kate Swaffer

Dr Shibley Rahman has also published a blog about it here…

Copyright: Dementia Alliance International

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.

Presenting at conferences: a few guidelines

ADI Breakfast mtg group_ADI2012The theme of this blog has developed after a request on Facebook about how to become a speaker at conferences such as the joint Alzheimer’s Australia and  Alzheimer’s Disease International conference 2015. The image is of a group of us at ADI2012 in London.

The process is moderately complicated, although we are actively working each year with them to make it more dementia friendly, and for this years conference, people with dementia were able to send a word document of their abstract, rather than having to navigate the very complicated online abstract process. Curiously, this year, I was one of the reviewers of the abstracts, and found that process far easier than sending my abstracts via their system, which of course I will feed back to them!

So, you might ask… what is an Abstract for a conference?

What is an abstract?

An abstract is a brief overview, not an evaluative summary of a longer piece of writing or presentation. Different kinds of abstracts contain different information. Social science and scientific abstracts contain a statement of the research problem or purpose, a statement about current approaches and a gap in the literature (for theses, but not always journal articles), a statement of the method and methodology and a summary of the findings and the conclusions. Humanities abstracts contain a description of the problem, a statement of current approaches and the gap in the literature (for theses and exegeses, but not always journal articles), the main position or ‘argument’ and an overview of the contents.

The abstract style for conferences that attract people with dementia  is a summary of about 300 words, of what the oral presentation will offer to the audience. It is not a scientific abstract, requiring methodology or research of any kind, but a precise of the topic we want to present on, in line with the conference themes, which you can see here for this years ADI conference.

How to write an abstract

  • Abstracts are usually written after the longer paper is completed, but it is often useful to start putting the elements together earlier on. This is because the abstract can help you to ‘map’ the overall presentation and check that the key steps in the story line hold together.
  • The first step in abstract writing is to re-read the longer presentation, perhaps highlighting the relevant information.
  • Next write a sentence or two, or a short paragraph  for each of the key ideas you want to discuss in your presentation.
  • Check that each sentence or short paragraph summarises the key points and does not leave anything important out.
  • Then put the sentences together and work towards a unified abstract in which the elements flow naturally from one to the other. Pay particular attention to key words and transitions to ensure the ideas flow from sentence to sentence.
  • The last step is to edit the abstract and to check that it fits within the word limit.

Cut off date for abstract submissions

There is always a cut off date for the acceptance of abstracts, so be sure to find out what that is, and mark it on your calendar. It takes me much longer than it used to to write anything, so ensure you allow enough time too be able to submit on time.

The waiting game

So, once you have submitted an abstract, either via their online submission process or by email you then have to indulge in the waiting game to see if it is accepted. That means you cannot make any plans to travel or register, unless you want to go to the conference regardless of if you present.

Personally, I find attending conferences is helpful to increase my knowledge, too network with others, l and to make friends. They also, often, frustrate me as I come away thinking that researchers and service providers still have so far to go!!!!!

Next steps

If you abstract is accepted, you will be advised by the conference organisers by email, and can then make your plans too attend. This involves registering for the event, which is best done at the Early Bird Registration Rate, so keep an eye on that date which can be found on the conference registration page.

Many event organisers also have a special reduced rate for a person with dementia, and their support person.

Writing your presentation

Personally, I find writing my presentations is helped enormously by choosing the topic I want to present on conforms with the themes on one of the headings of the event. A lived experience talk is easier as it is just that, a discussion of your lived experience. A presentation I had accepted for ADI2015 is on stigma and language, based on some work I did at university last year, which means it must have the key elements of that research paper in it.

I usually make some initial decisions about how many points to cover, based on the amount of time a presentation will be. Advice I have often been given, is 100 words maximum for each minute of a presentation, and one power point slide per minute. I usually follow this, and so far, it has worked well.

At the University of SA, I learnt from an Indigenous lecturer about the mud map way of writing, and once I have written out my full presentation, I select the key sentence from each paragraph, which is often the first or last line, or key theme, put them together, than work with editing it and ensuring it flows well from there.

Sometimes, I start with power point slides, add the key points I want to cover, and then start writing to each slide. Everyone has their own way of working.

Glenn Rees, the previous CEO of Alzheimer’s Australia, who is now Chair-elect of ADI’s advice to me was if I have more than THREE KEY MESSAGES my audience will be less likely to remember any of them, and so I try and stick to discussing three main topics or issues with each presentation.

Funding your attendance at conferences

Most people with dementia and their families are financially challenged, due to the financial impact of the disease, the numerous invasive tests needed for diagnosis, and regular follow up, and for younger people, due to not being able to remain employed. This means funding a trip to a conference can be prohibitive, especially when you also have to find registration to attend, meals, air fares, travel insurance, passports and other costs of travel.

Dementia Alliance International (DAI) raised funds through members efforts for a number of members to attend ADI Puerto Rico in 2014. This year,  DAI has received a small amount of funding from ADI to support a small number of people to attend.

We do have a formal process for applying for a Bursary, which we will promote for the ADI2016 conference, IF we have funds available for that again next year.

In the mean time, I personally can highly recommend that speaking at conferences is a positive intervention for dementia, and suggest if you are interested, then start to make your self know to local service providers in your local area that you are available to speak to their staff, and start practicing.  This is a cost efficient way to become good at it as well! In my home town, because I do not drive anymore, most organisations provide me with taxi vouchers, as I am educating their staff for free, so it works for us both.

We, the people living with dementia, are the experts through the lived experience, and if we don’t tell people without dementia what it is really like, how will they ever be informed enough to improve our care.

Editor: Kate Swaffer Copyright 2015

Research wrap-up #1

Slide1Late last year I asked a favour of a younger colleague and now friend, Dr Ian McDonald if he would consider writing a monthly blog with a precis of the latest in research for our Dementia Alliance International blog.

Luckily for DAI, he has not only agreed to do this for us, but is donating his time and expertise to our organisation.

Dr McDonald works for Alzheimer’s Australia based in the national office in Canberra, write his own science blog, and also hase a radio program. Thank you Ian, and our very sincere appreciation for your assistance and considerable generosity and research expertise.

January 1st 2015: dementia research wrap-up

By: Dr Ian McDonald, Science Communicator, Alzheimer’s Australia

Hi all, Kate Swaffer asked me to write a regular column for the Dementia Alliance International blog which gives a short monthly wrap-up of what is happening in the dementia research sector. So here is my first edition for January 2015 – Enjoy!

A recent report released by the Institute for Scientific Information on Coffee suggests that drinking 2-3 cups of coffee each day can reduce your risk of dementia by up to 20%. While this research attracted a considerable amount of media attention, evidence supporting this claim isn’t conclusive. In fact, the last sentence of the report reads:

“Epidemiological studies have suggested that there may be an association between moderate coffee consumption and a reduced risk of developed Alzheimer’s, however further research is required to fully understand the nature of this relationship.”

So I’ll leave that one with you to ponder. While consumption of coffee itself is unlikely to do harm, per se, it is important to note that there is also a growing body of evidence which highlights the risks of dementia associated with coffee drinking, including high sugar intake and lack of sleep.

Another intriguing study has suggested that ‘short people’ have a higher risk of dementia over ‘tall people’. This interesting claim was predominately based on the fact that shorter people have a lower production of growth hormones, which are believed to play an important role in brain function. Another study has suggested that adult asthma is linked to dementia onset. This claim was related to a condition known as ‘chronic hypoxia’ (where key organs are deprived of oxygen). The researchers suggest that those people with chronic hypoxia, can have abnormal synthesis of neurotransmitters, brain inflammation and blood-brain barrier dysfunction, resulting in brain cells not functioning properly

Finally to keep on the theme of dementia risk reduction, an Australian review article recently looked at whether computerised brain-training can decrease your risk of dementia and improve brain function. After reviewing 51 trials that involved over 5000 participants, they concluded that ‘computerised brain-training’ is only modestly effective at improving cognitive performance in healthy older adults. Australian researchers are now currently conducting more research in this area.

I look forward to digesting the latest dementia research with you, and encourage anyone who might be interested in finding out more to sign up to receive updates of my regular blog at http://www.dementiaresearchfoundation.org.au/dementia-news and/or read the articles in full.

Dr lan McDonald is the Research Communications and Engagement Coordinator for Alzheimer’s Australia. One of his major roles includes writing and sourcing content for a fortnightly newsletter called ‘Dementia News’ which sets out to explain and discuss the latest dementia research. He also produces a fortnightly podcast talking with researchers and community supporters in the field of dementia. His blog and podcast can be found at www.dementiaresearchfoundation.org.au. Another aspect of his role is to promote the work of the Alzheimer’s Australia Dementia Research Foundation, which is the research arm of Alzheimer’s Australia and provides support and grants to early career researchers in the field of dementia.

 Prior to working for Alzheimer’s Australia, Dr McDonald has worked at the CSIRO and the Australian National University in administration, communication and education roles. In 2012, he was awarded a PhD through the University of Queensland in the field of reproductive immunology. Dr McDonald is also a prominent member of the Australian Science Communicators, being on both national and local committees and also presents on a science show most Sunday mornings called Fuzzy Logic

Editor: Kate Swaffer
Copyright: Dementia Alliance International and Dr Ian McDonald 2015

Letter from Robert Bowles

Below is a post from new DAI member Robert Bowles to Dr. Sanja Gupta CNN page. Thank you Robert for your permission to publish your communication to Dr Gupta as our blog this week.

Robert posted on the Forget Me Not Dementia Support Facebook page:

“I have challenged him to utilize some suggested resources to produce a more inclusive and factual explanation of LBD and the path of LBD. I encourage you to visit https://www.facebook.com/pag…/DrSanjay-Gupta/117263381701271 and respond with “Like” and/or make a comments. This is an opportunity to demonstrate to CNN that LBD and other dementia need to be better understood.

I have reviewed much of the media coverage of the autopsy findings in the death of Robin Williams.

I was diagnosed with Lewy body dementia (LBD) in June 2012. My diagnosis was preceded by 18 months of a downward spiral that included being evaluated by 8 different doctors. At the time of my diagnosis, I was sleeping 12 to 20 hours a day. My wife would have to tell me that it was time to eat. I was experiencing almost every symptom listed on the Lewy Body Dementia Association (LBDA) website.

I express my sympathy to the loved ones of Robin Williams in their tragic loss from such a horrific disease. Sometime out of tragedy comes light. Robin’s death has created light in the awareness of LBD. Televisions have bee filled with information about the tragic loss of Robin and information about LBD. I have been appalled at some of the things that have been spoken by some reporters.

I witnessed some physicians that were interviewed by national news give a reasonable explanation of LBD. There were others that provided poor explanations of this disease. Many of the core diagnostic features of LBD were missed in most every interview I reviewed.

A physician who provided on the of most accurate pathology descriptions of LBD made a tragic statement at the conclusion of his report. The physician stated diagnosis was possible with some diseases, but there were no treatments. He was asked if he would want to be told he had one of these diseases. His response was NO because hearing this would tend to increase anxiety in the one being diagnosed and strip “hope” away from the individual.

I literally got nauseated when I heard the statement about “hope” being stripped away. I have many conversation every week with people living with dementia. They are part of my life-blood. AS I talk with them, all too often I hear them say the doctor gave me a prescription for Aricept and told me to come back in six months. Rarely are non-medication options and opportunities presented to the patient.

There has been a lot of media coverage about the death of a celebrity. I grieve for this family and thankful for their desire for others to have a better understanding of LBD. Early diagnosis of LBD is important because of medication sensitivities that may occur.

I am thankful that I was able to find there was life after a diagnosis of LBD. With a positive attitude and other resources, I was able to find my new purpose in life. Finding this purpose has given me a reasonable quality of life for someone with LBD.

The Lewy Body Dementia Association provides a wealth of knowledge about this disease. Physicians serving on the LBDA scientific advisory council provide outstanding understanding of this disease. I am available to share my journey and the choices that I have made which have enabled me to have a reasonable quality of life for someone with LBD. This would likely not have been possible without my early diagnosis. I encourage you to utilize these resources to provide a comprehensive understanding of this disease.

Will you be a beacon of light to others by helping them understand there is life after a diagnosis of LBD?”

Copyright: Robert Bowles

Editor: Kate Swaffer

Getting involved with DAI

Meeting-Clip-ArtEach week Dementia Alliance International has the thrill of new members joining this advocacy and support group, of by and for people with dementia.

As such, we felt it important to focus our blog this week on what services we offer, what we have achieved, and more importantly, how you can become more involved.

We are soon adding a new page on the website called Get involved, with the numerous activities that you can join in, as well as opportunuties to become more actively involved in DAI.

For example, two very new DAI members, Mick Carmody and Gayle Harris, both from Queensland are now regularly co-hosting the new Café Le Brain AUSTRALIA, along with Kate Swaffer.

The next Café Le Brain NORTH AMERICA & UK – Online Memory Cafe in the USA time zone is to be held on and you can register here.

The next online Café Le Brain AUSTRALIA to be held in the Australian time zone now a monthly event is on Wednesday 19 November at 1.30pm AEST. You can register here.

During Dementia Awareness Month 2014, these new Australian members hosted the first Café Le Brain in Australia, which was exciting for DAIs, and I hope exciting for them. Whilst our numbers were low at this first cafe, and there was some confusion about who should register, it was a terrific start.

Celebrating some very good news, we have recently been approached by Alzheimer’s Disease International to collaborate with them as the peak consumer body for people with dementia. We are excited about this opportunity, and thrilled to have their support in this way.

It is especially important for new members, and also for our supporters receiving our weekly blogs and newsletter updates, to see what we have achieved, and I have listed as many as I can remember below.

Since 1 January 2014, we have achieved or are currently working on the following:

  1. Updated website, making it more user friendly and definitely ezasier for peole with dementia to sign up as members.
  2. Our Vision, Values, Missions and Core Beliefs for DAI; of course this may change over time, but we worked hard on these things, and feel they represent what other people with dementia would also want.
  3. Cafe Le Brain, our virtual support groups, now in two time zones.
  4. Active Facebook page, twitter account and YouTube channel.
  5. We are building on the Webinars at A Meeting of The Minds.
  6. We have published a weekly blog since 7 May 2014.
  7. We have a quarterly newsletter, The Advocate.
  8. Membership is in many countries now, and is increasing steadily, and will remain FREE. We need to build on membership in other countries, so they can set up and support new local Alliances for people with dementia in their own countries or regions.
  9. We have an elected Board, although do need more Board members to become more actively involved as a few cannot do all the work on their own.
  10. A memberhsip group of Circle of Friends – members (just a reminder, all people with dementia) who have started meeting to work on projects, e.g. educational resources and material. We love to welcome new members to this group, as well as nominations for teh Circle of Friends and as Board members from those of you who want a more active role in the organisation.
  11. We raised over $6000 in less than five months to sponsor five people to attend ADI2014 in Puerto Rico.
  12. These funds also allowed us to purchase a banner and purchase t-shirts for members and supports, to assist with marketing and fund raising.
  13. Six DAI members presented at ADI2014
  14. We set up and ran a professional stand promoting Dementia Alliance International at ADI2014; this took a huge commitment in time and energy to set up, and to run each day of the conference, but allowed us to highlight not only the abilities of people with dementia, but to network into other countries and organisations.
  15. We hope to raise funds to support people to attend ADI2015 in Perth next year.
  16. Our By Laws are complete.
  17. Our Strategic Plan is almost complete.
  18. Our 501c status as a not for profit organisation based in the USA is now complete: EIN is 27-3538654.
  19. We are in the process of setting up a bank account.
  20. Laura Bowley remains our Executive Director, a person without dementia who provides us with support as a volunteer. Thank you Laura.
  21. We are in the process of setting up a media watch, allowing members to respond to articles in the news, on issues such as the use of inappropriate language.
  22. We ran a very full Dementia Awareness Month program of activities, whoich were very successful. We included four Master Classes, and a Webinar being run in two time zones, as well as our regular Memory Cafés and weekly blog series.
  23. Our newsletter and many other articles have been translated into Spanish, French, Mexican, Japanese, and Bangladesh, and we are currently working with other countries including Taipei, Germany and Croatia.

Looking ahead, we are currently collaborating with others to set up some very exciting projects, as we develop our skill sets and commitment to the fact we can still function, albeit differently to the way we did before being diagnosed with dementia.

We will be adding resources and finding funding, and will achieve our current goals and beyond. We are also collaborating with a number of academics and universities to provide two subjects for universities to incorporate into their dementia courses.

We also are soon to commence work on providing two global resources, available to be downloaded on our website, the first being Communicating with people with dementia, the second being a Language Guidelines document, and intend to get them translated into at least the countries who have Alzheimer’s Associations or Societies.

Until then, you can download the Alzheimer’s Australia guidelines here> Alzheimers Australia Language Guidelines 2014