Category Archives: Dementia

Lyn Rogers shares why she is glad she joined DAI

Lyn Rogers is a member of DAI, and shares with us on Day 24 of Dementia Awareness Month, why she is glad she found DAI. Lyn has been a permanent resident in a nursing home (residential care facility) in the state of Victoria in Australia for over two years.

Lyn has a diagnosis of dementia and lives with other comorbidities, like most people over the age of 65. She moved to the facility from Queensland, therefore most of her family and friends are not living nearby, and although she uses a crutch, she loves to go for a daily walk, which is essential she maintain her mobility and emotional health. It has been much more lonely since the COVID-199 pandemic, as she has faced significant challenges being allowed to maintain her walking and other activities.

Thank you Lyn. We are really glad you found DAI.

https://youtu.be/pCYeS8NERbo

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Help more people with dementia like Lyn to have a voice, by  supporting DAI.

 

Gait Retraining and Dementia, by A/Prof James McLoughlin

In July this year, DAI hosted a webinar Gait retraining and Dementia, by A/Prof James McLoughlin. It was very well attended, and we are pleased to share it during Dementia Awareness Month 2020.

James is an Associate Professor at Flinders University in Adelaide. He has a Bachelor of Applied Science (Physio), a MSc(Clinical Neuroscience), and a PhD, and is an experienced neurological physiotherapist and Director of Advanced Neuro Rehab in South Australia, a neurological and vestibular rehabilitation clinic.

James is passionate in promoting best practice for people with neurological & vestibular conditions. He has previously presented to us on Rehabilitation and Dementia.

About the Webinar: People with all forms of dementia can experience changes to their walking and balance. There are many factors that can contribute to these issues that can be targeted within an individualised rehabilitation program. James will discuss some of the proactive ways neurological physiotherapy can help with treatment, training and support.

Watch the webinar recording  here:

#DAM2020 #DAIisLifeChanging #WAM2020

Make sure you get involved in the DAI Art Auction this week.

Jerry Wylie and the Dementia Warriors #DAM2020

Today was our monthly Cafe Le Brain, and unfortunately for everyone, one of the co hosts’ internet died, so it was a rather disjointed cafe! We had a few topics on the agenda, including with Jerry Wylie’s permission, watching a video made about setting his local support group, called the Dementia Warriors.

Jerry Wylie, USA

Therefore to support those who missed out on the video at our Cafe, for Day 16 of Dementia Awareness Month #DAM2020 #WAM2020, we are not only adding that video here, we are highlighting Jerry’s journey from diagnosis to now, by posting¬†two videos highlighting his incredible advocacy.

The first is a video recording of a presentation he gave at the ADI conference in Chicago in 2018. The second is a video that was made about setting up his local support group. It has been an incredible journey to partlt share with him; from diagnosis, to depression, to renewed purpose.

Thank you Jerry.

We are so glad DAI was the catalyst to help you see there is still a good life to live, in spite of dementia.

Jerry presents at the ADI Conference in Chicago

As a keynote speaker at the ADI Conference in Chicago in 2018, Jerry shared his deeply personal story, which included him sharing how he had been depressed and even suicidal after his diagnosis, and his passion became one of helping to stop other people’s lives being thrown in the bin after their diagnosis like his was!

People who become empowered to live positively and with renewed meaning and purpose is exactly one of the outcomes the original founders of DAI dreamed of. Life is short, so DAI works towards actively supporting people to get back to living their own lives, and also to have fun again.

Jerry Wylie, speaks on founding the Dementia Warriors.

Jerry often said that joining DAI saved his life, and attending a support group over zoom was the first time he had smiled or laughed since his diagnosis. He is now living the his life with true purpose ad passion, and we all applaud and congratulate him for having the tenacity to keep advocating, until this particular dream was achieved.

Well done Jerry, we hope other members may be inspired to follow you, and we are all very proud of what you have achieved, and how you continue to support families facing dementia.

Read the brochure about Jerry’s exciting Dementia Warriors support group.

Monday Science Podcast Dementia Series #DAM2020

Monday Science podcast’s Dementia Series starts today, Monday 7th September 2020. The series, and Monday Science has been curated by Dr. Bahijja Raimi-Abraham, whose biography is listed below.

All episodes in the month of September will be dedicated to conversations about dementia. The aim of the series is to raise awareness of dementia and experiences of it across the world.

Topics that will be covered in the series include the impact of COVID19 on persons living with dementia; the experiences of persons living with dementia; and the experiences of relatives of persons living with dementia.

Series Guests:

7th September: Kate Swaffer (Humanitarian & Chair/CEO/Co-founder of Dementia Alliance International)

The first podcast is now available here…

14th September: Ms Feyi Raimi-Abraham (Founder/CEO of The Black Dementia Company Ltd & care partner of a parent living with dementia)

21st September: Professor Adesola Ogunniyi (Clinician/Neurologist/Neuroepidemiologist and holding professional faculty position at the College of Medicine, University of Ibadan, Nigeria)

28th September: Mrs Cynthia Raimi (Retired Physiotherapist)

Monday Science is also funding-raising for Dementia Alliance International during the series. The aim is to raise £500.

  • ENDS¬†

Note to Editors:

Monday Science is a podcast that discusses the latest research in Science, Technology and is hosted by award winning scientist Dr Bahijja Raimi-Abraham. The podcast is available on Spotify, Anchor, Apple Podcasts, Google Podcasts, Stitcher, Castbox and on Monday Science website.

Dementia is a syndrome of a chronic or progressive nature where there is deterioration in cognitive function (i.e. the ability to process thought) beyond what might be expected from normal ageing. According to the World Health Organization (WHO), ~50 million people worldwide have dementia. Alzheimer‚Äôs disease is the most common form of dementia and may contribute to 60‚Äď70% of cases. Later-onset dementia affects people over 65 whilst younger-onset dementia affects people younger than 65.

About Bahijja Raimi-Abraham

Dr Bahijja Raimi-Abraham is a pharmacist, Lecturer in Pharmaceutics at King‚Äôs College London, Founder and Academic Lead of King‚Äôs College London Fight the Fakes. She leads her research group ‚ÄúThe Raimi-Abraham Group‚ÄĚ. Her research to date has been in pharmaceutical materials and innovative manufacture. More recently she has focused her research efforts within the therapeutic and drug development aspects of malaria.

Prior to her current position as Lecturer in Pharmaceutics at King’s College London, Dr. Raimi-Abraham held positions at University College London (UCL) as an Engineering and Physical Sciences Research Council (EPSRC) postdoctoral researcher position and at the European Medicines Agency (EMA) as a seconded Quality National Expert.

Dr. Raimi-Abraham is the first graduate of the University of East Anglia School of Pharmacy to be awarded a Ph.D. and more recently won the Outstanding Woman in STEM Precious Award.

In May 2020, Dr Raimi-Abraham started a new podcast called Monday Science. Monday Science is a weekly podcast which discusses the latest in Science, Health and Technology. Dr Raimi-Abraham started this podcast because of her passion for science communication and a desire to discuss topics both within her core research areas and expertise as well as outside of them. Monday Science also allows for the listeners to submit their questions which Dr Raimi-Abraham answers or finds experts in the field to answer them.

Dr Raimi-Abraham has curated a dementia series for Monday Science to be included as part of dementia awareness month motivated by dementia affecting a close family member. Through this series Dr Raimi-Abraham aims to amplify the voices of those affected by dementia whilst also raising awareness.

Further details including social media are available here.

 

Dawn and Maz: Why they’re glad they found DAI

On day 2 of Dementia Awarness month 2020 #DAM2020, we hear from DAI member Dawn and her partner Maz who live in Mebourne Australia, on why they are glad they found DAI. Dawn joins two of our peer-to-peer support groups each week, and occasionally, is inspired to get up early for avirtual Cafe or online Webinar!

Image source: Dawn and Maz

Dawn: I’m so glad I found DAI because I really enjoy the weekly support group sessions on Zoom.

I like that all the people in the Zoom sessions are pretty much like me and we talk about lots of things that we can still do. I like it when we share what we’re doing, such as what we’re cooking. It’s really good to hear other people’s experiences.

I appreciate that the others are very patient with me because I have Primary Progressive Aphasia and I find it difficult to express myself. Each week I write down what I want to say beforehand. Sometimes I read it and sometimes I just need it as a prompt.

I am so thankful that I was given Kate‚Äôs book ‚ÄėWhat the Hell Happened to my Brain?: Lvign Beyond Dementia‚Äô because it introduced me to DAI (and it is an excellent, positive book!)

Maz: I’m so glad my partner, Dawn, found DAI because the weekly support group sessions on Zoom have been very affirming and encouraging for her.

They are a space just for her, not for both of us, and it’s great for her to have her own voice without me doing most of the talking, which is what often happens when we are in group settings, online or face to face.

Although I sit off-screen, I am present each week as a communication support for Dawn when needed.

It’s great to hear the positivity and encouragement bouncing off the participants. Just hearing from others who are going through similar experiences and emotions is so important. As with any other group of people, the participants’ sharing is not always positive, and the hosts always treat any expressions of sadness with sensitivity.

We’ve also learnt about many useful resources through the support sessions and the DAI website.

Dawn comes away from the sessions with a smile on her face and a sense of connection with others. Although we’ve never met any of the others in the group, we both feel that they are our friends and we are so grateful to the hosts who so generously give their time and expertise.

Thank you Dawn and Maz.

YOU can help DAI to support more members like Dawn here…

Webinar: Human Rights as a Practice Model in Residential Aged Care

We invite you to join us for our September 2020 “Meeting Of The Minds” Webinar,¬† Human Rights as a Practice Model in Residential Aged Care, presented by Daniella Greenwood.

  • Wednesday, September 23, 2020 (USA/CA/UK/EU)
  • Thursday, September 24, 2020 (AU/NZ/Asia)
  • Please note: this is one event, set in a number of different time zones.

Human Rights in residential aged care have never been so important!  At this time of the Coronavirus pandemic, when lockdowns and other restrictions have been enforced on families and residents, the many breaches of human rights these people already face have increased.  On top of that, the number of deaths in aged care due to this pandemic is truly tragic. Please do join us for this inspiring speaker, and an innovative and new way of supporting people living in residential aged care (nursing homes).

Register here…

Wednesday, September 23, 2020 (USA/CA/UK/EU):    

  • 2:00 pm¬† Pacific
  • 3:00 pm¬† ¬†Mountain
  • 4:00 pm¬† ¬†Central
  • 5:00 pm¬† ¬†Eastern
  • 10:00 pm¬† London/Glasgow/Dublin UK
  • 11:00 pm¬† Paris, Munich, Amsterdam, EU

Thursday, September 24, 2020 ( AU/NZ/ASIA):

  • 5:00 am¬† Perth, AU/Taipei/Singapore
  • 6:30 am¬† ¬†Adelaide, AU
  • 7:00 am¬† ¬†Sydney/Melbourne/Canberra/Tasmania/Brisbane, AU
  • 9:00 am¬† ¬†Auckland, NZ

The Webinar runs for up to 1.5 hours.

Check your time if not listed above with this link.
Donate to DAI or become an Associate or Strategic Partner.
Volunteer for DAI: [email protected]

Register here…

YOUR DONATIONS SUPPORT DAI IN MANY WAYS:

  • $US 5.00 covers the average cost of one of our monthly bank fees
  • $US 200.00 covers the cost of our monthly Zoom subscription fee
  • $US 120.00 covers the average monthly cost of the MailChimp subscription
  • $US 300.00 covers the current cost of 3 months of website management fees

PLEASE DONATE TO DAI OR BECOME AN ASSOCIATE OR PARTNER; WITHOUT YOUR SUPPORT, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

Support people with dementia:

THANK YOU

**************************************************************************

You can view videos of previous DAI “A Meeting Of The Minds” Webinars on the¬†on the DAI YouTube Channel

Please note: Whilst we usually publish the recording of the event on YouTube afterwards, it does not include the Q & A sessions, and occasionally, we do not publicly publish recordings of your online Webinars at all, so if you don’t register to attend, you may miss seeing our events.

GLAD Call TO Action: A Call To Rebuild a Future Inclusive of All

Dementia Alliance International signed on this week to the GLAD Network (the Global Action on Disability) Call To Action: A Call To Rebuild a Future Inclusive of All.

We are one of many organisations supporting this important Call to Action to all stakeholders to include persons with all types of disabilities in the response and recovery phases of the Covid-19.

The letter below confirms our endorsement of this important Call To Action, and includes links to the Call To Action and other information. Please also note, the Call to Action is still open for endorsement by all stakeholders and GLAD would welcome endorsement by additional partners using this form.

Dear Kate,

The co-chairs of the Global Action on Disability (GLAD) Network – the United Kingdom Department for International Development, the Norwegian Ministry of Foreign Affairs, and the International Disability Alliance – would like to extend our sincere gratitude for endorsing the Call to Rebuild a Future Inclusive of All. The Call to Action demands the inclusion of persons with disabilities in the response and recovery phases of the COVID-19.

Please be informed that your organization’s logo has been included  in the official Call to Action document, which can be accessed here.

The Call to Action is still open for endorsement by all stakeholders and we would welcome endorsement by additional partners. To invite your partners, please feel free to share with them this page where more information on the Call to Action and its endorsement can be found.

If you have any questions, please do not hesitate to contact us.

Thank you very much.

Sincerely,

Penny Innes, Head, Disability Inclusion Team
United Kingdom Department for International Development

Jon Lom√ły, Special Representative
Ministry of Foreign Affairs, Government of Norway

Vladimir Cuk, Executive Director
International Disability Alliance

Human Rights and the Confinement of People Living with Dementia in Care Homes

Todays blog is an important Human Rights Law Journal article, Human Rights and the Confinement of People Living with Dementia in Care Homes published on 18 June 2020.

By Linda Steele, Ray Carr, Kate Swaffer, Lyn Phillipson, and Richard Fleming.

Abstract: This paper responds to growing concerns in human rights practice and scholarship about the confinement of people living with dementia in care homes. Moving beyond the existing focus in human rights scholarship on the role of restrictive practices in confinement, the paper broadens and nuances our understanding of confinement by exploring the daily facilitators of confinement in the lives of people with dementia. The paper draws on data from focus groups and interviews with people living with dementia, care partners, aged care workers, and lawyers and advocates about Australian care homes. It argues that microlevel interrelated and compounding factors contribute to human rights abuses of people living with dementia related to limits on freedom of movement and community access of people living with dementia, at times irrespective of the use of restrictive practices. These factors include immobilization and neglect of residents, limited and segregated recreational activities, concerns about duty of care and liability, apprehension of community exclusion, and pathologization and subversion of resistance. It is necessary to challenge the organizational, cultural, economic, and social dynamics that shape day-to-day, microlevel, routine, and compounding factors that remove the agency of people living with dementia and in turn facilitate entrenched and systematic human rights breaches in care homes.

You can download the full article here…

This article is one of three, as part of a research project many members of DAI were involved in as participants of the research, and at the Summit. The project ‚ÄėSafe and Just Futures of People Living with Dementia in Residential Aged Care‚Äô aimed to explore:

  • current barriers to liberty and¬†community access for people living¬†with dementia in RACFs; and
  • the possibilities and challenges of¬†utilising a human rights framework¬†to transform the living and support¬†arrangements of people living with¬†dementia in RACFs.

The first published article, Questioning Segregation of People Living with Dementia in Australia: An International Human Rights Approach to Care Homes, was published last year, and the anthology and project report was published earlier this year, also available to download here.

#HumanRights4All…

DAI Cookbook Project

Image source: Dementia Alliance International

DAI Members: we invite you and your families to contribute to the DAI Cookbook project.

Food made with love

Hello everyone and thank you for reading this blog!

September 2020 will be an important month for Dementia Alliance International; during the month of September we will commit all of our efforts to raise funds to ensure the continuity of DAI and our free membership, and member services.

With that, we would like to ask you for a contribution of a few minutes of your time to join us with this exciting venture.

Two of your members, Christine Thelker and Jan Douglas, along with Kate Swaffer are organizing the production of a DAI e-Cookbook…

It was inspired by another wonderful DAI member, Terry Montgomery! Thank you Terry.

We would all love for your favorite recipes to be included in this wonderful book.

We are asking that you submit two (2) of your FAVORITE recipes.

Depending on how many recipes we receive, and what category they are in, will determine which recipes are used in the book.

Please submit your recipes, photos and stories by July 16, 2020. 

We have categories for the following recipes:

  • Starters (appetizers)
  • Salads and homemade dressings
  • Soups
  • Breads
  • Main meals
  • Desserts
  • Recipes specifically for brain health

Along with your submission, send us a photo either of yourself, or of the prepared recipe, and a short paragraph about the recipe, what the recipe means to you and your family. [we have already received a number of recipes – thank you!]

Please also note if your recipe is gluten free, sugar free, etc.

Please send them to [email protected]

See this example of a short paragraph about a recipe:

Hearty Beef Vegetable soup
‚ÄúI always made this on cold winter days, for when the kids came in from playing in the snow and just in time for my husband to arrive home from work, this soup brought our family together, I made it with love.‚ÄĚ

We all look forward to reading your stories and sharing your recipes to other DAI Members, and hopefully, to the world.

It will be produced it as an e-Cookbook available on Amazon, and ALL proceeds will go directly to Dementia Alliance International. Dementia Alliance International.

Stay safe and well,

Christine, Jan, Terry and Kate

Finally, a reminder to register¬†for our June 2020 ‚ÄúMeeting Of The Minds‚ÄĚ Webinar, Dementia, Human Rights, Selfcare and COVID-19

Communicating with a person with aphasia

Image source: Kate Swaffer

In the last few weeks, a lot of people and organizations who have never before used zoom (or a similar online platform) have had to meet online for work, family and social gatherings.

Even organizations who have been using zoom for a long time, have started producing help sheets and other resources on how to use it. At last… the world is catching up, and people with dementia really appreciate it!

Online communicating is difficult, but for many who are diagnosed with dementia, is preferable to a phone call, as we can see the others persons face and expressions, and therefore alsohave a visual cue beyond a name of who we are talking to.

For those with dementia who also have aphasia such as Primary Progressive Aphasia, it is not easy to communicate in person, let alone online, hence we wanted to post this blog with some tips and other resources.

DAI has posted blogs on aphasia previously, including a short video in 2016 on a post titleed Understanding Aphasia. This DAI blog also has a caregivers guide, produced by the National Aphasia Association, and the following video is worth watching (again).

The National Aphasia Association in America also has a lot of useful information on their website.

Tips for Communicating with a Person with Aphasia

These tips may make it easier for you to understand and talk with people with any type of aphasia. To help a person with aphasia communicate with you, try the following:

  1. Get their attention before you start speaking.
  2. Keep eye contact.
  3. Watch for body language and the gestures used.
  4. Talk in a quiet place. Turn off the TV or radio, and reduce other noise. Ask others in the area to do the same.
  5. Keep your voice at a normal level. You do not need to talk louder unless you are asked to (we are not all hearing impaired).
  6. Keep the words you use simple but adult. Do not “talk down” to the person with aphasia, as if having aphasia (or dementia) means having intellectual deficits.
  7. Use shorter sentences, and if possible, repeat key words that are important to understand.
  8. Slow down your speech, but not so much that is sounds insulting or patronising.
  9. Give the person time to speak; it may take longer.
  10. Try not to finish sentences or find words for them; this poem may help explain why.
  11. Try using drawings, gestures, writing, and facial expressions. People may understand those better than words sometimes.
  12. Ask the person with aphasia to draw, write, or point when  having trouble talking.
  13. Ask more “yes” and “no” questions. Those are easier than questions thatare need to be answered using lots of words or sentences.
  14. It is ok if the peson makes mistakes sometimes. They  may not be able to say everything perfectly all the time, but neither may you.
  15. Let them try to do things for themselves, even if they need to try a few times. Help me when help is asked for. Unless it is dangerous there is no need to intervene uness asked to.
  16. Aphasia does not equate to an intellectual disability, but rather is a language impairment or disability

Whilst DAI currently does not have peer to peer support groups specifically for people with aphasia, if we have enough requests to do so again, we will do o ur best to set one up. Contact us at [email protected] if you or someone you support is interested.

Register now for our June “Meeting Of The Minds” Webinar,¬†Dementia, Human Rights, Selfcare and COVID-19