Tag Archives: Dementia Awareness Month 2015

“Dementia is not just about old people” #DAM2015 Day 28

Image source: Amazon.com.uk
Image source: Amazon.com.uk

There are some very important messages in the most recent book, Living Better with Dementia written by Dr Shibley Rahman, number two of his trilogy on improving the care of people with dementia and their families.

In fact, his first book, Living Well with Dementia: The Importance of the Person and the Environment for Wellbeing in this trilogy has just been awarded the first prize British Medical Association  Book of the Year Award. I have read both books, and can highly recommend them as very readable for anyone who is not an academic or who has a health background.

As part of his commitment to people with dementia, Shibley has put together a series of very succinct slides, with quotes from his books, which I am sharing here. Whilst he may have had a chequered history, although I’d venture to say most of us have, his willingness to share freely with the members of DAI and the dementia sector in general is extraordinary. We felt it worth sharing these short quotes for Day 28 of Dementia Awareness Month 2015. 

Source for all images in this gallery: Shibley Rahman © 2015

Note from the editor: DAI does usually promote peoples ‘products’, but these books are truly ground breaking, and will go a long way to improving the care pf those of us diagnosed, and those people who are supporting us. They are already greatly influencing the dementia care sector, and the field of dementia in general, as evidenced by the BMW best book of the year award.

Screen Shot 2015-09-28 at 1.01.15 pm

Passing the baton #DAM2015 Day 27

For Day 27 of World Alzheimer’s Month 2015, #WAM2015 and for a day off from dementia, we are sharing the beautiful YouTube recording of the late Luciana Pavarotti’s daughter. The relevance for this, is that although when he died, many thought the shoes of Pavarotti could never be filled, just like some have said of the late Dr Richard Taylor. There will always be people to take the baton, whatever the cause, or whatever the passion, e.g. music, art, racing car drivers, olympians, etc… Sit back and enjoy this wonderful young girls talent, following in the footsteps of her truly great father.

Petite fille de Pavarotti, Canta sislena ganadora tu vales

The rights of people with disabilities, including people with dementia #DAM2015 Day 24

Professor Peter Mittler, member of  and advisor to Dementia Alliance International on the rights of people with dementia to be included in the UN Convention on the Rights of Persons with Disabilities presented to our members at our Open members Meeting earlier this week.

It is Day 24 of World Alzheimer’s Month 2015 #WAM2015, and human rights for people with dementia is a current global topic of interest to us all. This of course, includes society supporting our disabilities, caused through having this or that type of dementia, in the same way wheel chair ramps are provided. It is simply our legal right, but until recently the sector has not even been advocating for this.

We thank Peter sincerely for his advocacy in this area for people with dementia, and for his time and expertise in sharing with our members.  With permission, we recorded the presentation and will share it today for those who could not attend the meeting, either due to being unavailable, or because of not being a member of DAI.

https://youtu.be/ZZfhtN1-SLU

Editor: Kate Swaffer

Supporting us to live in the community #DAM2015 Day 20

For Dementia Awareness month 2015, #DAM2015, Day 20, we are posting the following slides used for a presentation by Kate Swaffer the Chair of Dementia Alliance International gave at the Better Practice Conference in Launceston last Friday.

See the slide show here:

Supporting people with deMEntia to live well in the community slide show (Converted)

You can download the slides used above here Supporting people with deMEntia to live well in the community

Dementia-friendly street party #DAM2015

For Day 19 of World Alzheimer’s Month 2015, or as we have been calling it Dementia Awareness Month 2015, #DAM2015, we wanted to share the fabulous idea of a dementia friendly street party, from one of our members Edie and her partner Anne based in Victoria, Australia.

Image source: Screen shot from http://www.dementiadaily.org.au/novel-idea-dementia-friendly-street-party-to-de-stigmatise-condition/#.VfpXvZfFGjY.facebook
Image source: Screen shot from http://www.dementiadaily.org.au/novel-idea-dementia-friendly-street-party-to-de-stigmatise-condition/#.VfpXvZfFGjY.facebook

The article, Novel idea – dementia-friendly street party to de-stigmatise condition was posted on Dementia Daily, an Alzheimer’s Australia online newsletter.

“Edie and Anne are a couple from Victoria. Edie is living with younger onset dementia. Edie and Anne are calling for the “more informed” among us to take action and assist in spreading helpful and positive messages to de-stigmatise dementia and create more dementia-friendly communities.

And what better way to celebrate than with a big dementia-friendly street party? #ItStartsWithYou

Read the full article here…

Let’s all think about organising a dementia friendly street party soon, or at least as part of our Christmas celebrations?

 

No evidence you can ‘catch’ Alzheimer’s disease #DAM2015 Day 13

Many in the media continue to write and therefore spread harmful and hurtful misrepresentations about dementia, stories about the causes, the very inaccurate ‘soon to be here’ cures, and most of the time, usually using offensive language.

For Day 13 of Dementia Awareness Month 2015, we thought we should talk about one such article, from last week. There has been a lot of confusion about a number of articles from last week, claiming you can catch Alzheimer’s Disease, so with their permission, I have added the easily understandable response from Alzheimer’s Scotland to this sensationalist and irresponsible journalism.

Screen Shot 2015-09-12 at 6.39.25 amToday’s story on ‘catching’ Alzheimer’s disease

 Published by Alzheimer’s Scotland on Thursday 10 September 2015

“A study was published today (in Nature) which stated that the protein beta-amyloid was found in the brains of eight people who had been who had previously injected with human growth hormone. It was suggested that these people would have therefore gone on to develop Alzheimer’s disease. The protein was observed in seven of the eight brains examined.

Some of today’s headlines have suggested that people can ‘catch’ Alzheimer’s disease, that it is in some way contagious, or that it can be caught through medical or surgical procedures. 

There is no evidence of this. 

Alzheimer Scotland are deeply disappointed by the sensationalist and irresponsible nature of much of today’s coverage.

While this study is interesting, it is far too small to draw any conclusions.

Go to their website to read the full response to this irresponsible journalism.

Editor: Kate Swaffer

Featuring DAI member, Chris Roberts for #DAM2015 Day 9

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

For Dementia Awareness Month Day 9, we are featuring one of our members, Chris Roberts and his work and blog, which says he is a ‘Dementia survivor so far’. Chris comes from Wales, and is married to the lovely Jayne Goodrich, and has a lovely family as well, one daughter who some of us have met. They are all intensely proud of his advocacy work, and his attitude to living with a dementia, which is a chronic, progressive terminal disease.

Chris has a healthy CV, since being diagnosed with dementia, and is a member of DEEP (UK), a MSNAP Peer Reviewer, a Dementia Friends Champion (UK), an Alzheimer’s Society UK Ambassador, is a Dementia Research Champion, an Alzheimer’s Society UK Advisory Group member, a Member of Dementia Action Alliance, a founder of the FB group; Dementia Information, does extensive media work as a Media Volunteer for Alzheimer’s Research UK, is aBoard Member of Dementia Alliance International, and most recently was appointed to the NICE Committee Member, representing people with dementia. I cannot tell you all of the meanings of the abbreviations used for most of those groups, but can add them at another time if requested!

Please, head over to his blog and read some of his insightful posts about living with dementia, and of the work he is doing. Congratulations Chris, for showing the way to so many others as well. We are all proud of you as well.

Editor: Kate Swaffer
Copyright: Dementia Alliance International

Master Class 2: My Conversation with My Doctor

For Dementia Awareness Month 2015, #DAM2015 Day 8, we are re-posting a Master Class from 2014. It is an important conversation about talking to your doctor when you are diagnosed, hosted and facilitated by DAI members, two of who were medical doctors, Dr Jennifer Bute from the UK and Dr Dave Kramer from the USA, when they themselves were diagnosed with dementia.

https://www.youtube.com/watch?v=jRUE3900OXs

First published on Sep 11, 2014 on our YouTube Channel.

In this webinar, our panel shared their experiences of sitting on both sides of the table – physician and patient — and talked about how to make the most of your visit to your doctor, how to get the information you need, how to understand what the physician is telling you, and how to advocate for yourself.

MEDICAL DISCLAIMER: Information and other content included on this Site or in this video (Master Class 2: My Conversation with My Doctor) is for general informational and educational purposes only and is not meant to be a substitute for the advice provided by a professional health care provider. This site and video does not provide medical advice. You may not use or rely on any information contained on the Site or in the Video for diagnosing a health or medical problem or disease. You should always consult a professional health care provider regarding any health or medical condition, prevention, or treatment. Do not delay or disregard seeking professional medical advice on account of something you have read on www.dementiaallianceinternational.org or viewed or heard in a video on this Dementia Alliance International YouTube channel.

LIFE, in 4 min

A short video for Day 7 of Dementia Awareness Month 2015 #DAM2015.

“IF WE COULD SEE INSIDE OTHERS’ HEARTS”:

https://www.youtube.com/watch?v=Wl2_knlv_xw

Published on Mar 20, 2013

 

WOW! A profound look at life, in 4 minutes. You have to watch this — and share it. We literally welled up with tears — very rarely does that happen.

The camera wanders and shows the inner lives of people around us as they do their daily tasks. Most of it is set in a hospital, where there is so much worry, sadness, some joy, bad news, good news, no news, anxiety, fear — as in real life, but perhaps magnified.

We’ve all BEEN there – experienced at least one of these people’s lives. Hence, the tears! It’s so TRUE.

This short video is at once quiet, profound, powerful, true, simple — and so supremely human. It was produced by the Cleveland Clinic, as an example of their regard for empathy.

It’s a profound reminder: we ALL have our story. Others have theirs. We NEVER know. And to treat others with the benefit of the doubt, with courtesy, with compassion, with respect.

Everyone Matters! Join us at www.facebook.com/everyonematters

The video was first presented by Dr. Toby Cosgrove, CEO of the Cleveland Clinic, with the staff during his 2012 State of the Clinic address a few weeks back, on Feb. 27, 2013, and since posted on the clinic’s website.

Not Acting the Way thats Expected, by Richard Taylor, PhD

Day 5, Dementia Awareness Month 2015

Founding member of Dementia Alliance International, the late Dr  Richard Taylor PhD presented a number of time at the ADI2014 conference in Puerto Rico, and this recording offers us all an especially powerful message.

https://youtu.be/CvnFTR22pgw

First published on Sep 8, 2014