All posts by DementiaAlliance

Webinar: What People Living with Dementia Teach Us About Our Shared Humanity

We invite you to join us for our August 2020 “Meeting Of The Minds” Webinar”,  What People Living with Dementia Teach Us About Our Shared Humanity presented by Professor Emeritus Steven Sabat.

  • Wednesday, August 26, 2020 (USA/CA/UK/EU)
  • Thursday, August 27, 2020 (AU/NZ/JP/SGP/TWN)

Please note: this is one event, set in a number of different time zones.

Register here…

About the Webinar: How we view and approach people with dementia in the process of providing care is critical to whether or not we see and facilitate many of their intact cognitive and social abilities.  Approaching people diagnosed mainly with their presenting symptoms in mind and viewing one’s job as performing particular physical care-oriented tasks will not facilitate the expression of such persons’ remaining abilities and will often prevent those abilities from surfacing.

“Engaging with” people diagnosed with genuine human interest in learning about the person’s past life and interests, proclivities, desires, creates an “I-Thou” connection that will have the opposite effect: their often substantial cognitive, social, and emotional abilities will be revealed.

Thus “dementia care” requires human interaction with someone who is much more than a “dementia patient”, but is viewed and honoured as a human being who deserves to be treated as a person, not just as a patient.  I shall discuss a host of valued attributes that are shared by people living with dementia and those deemed healthy so as to illustrate the commonalities we all share.

About Professor Sabat: Steven R. Sabat is Professor Emeritus of Psychology at Georgetown University. His research for the past 39 years has focused on the intact cognitive and social abilities and the subjective experience of people with moderate to severe dementia, as well as enhancing communication between people living with dementia and their care partnerrs. He is the author of numerous articles in scientific journals and in books.  As well, he is author of The Experience of Alzheimer’s Disease: Life through a Tangled Veil (2001), Alzheimer’s Disease and Dementia: What Everyone Needs to Know (2018) and co-editor of Dementia: Mind, Meaning, and the Person (2006)

Wednesday, August 26, 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, August 27, 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.

COST TO ATTEND:

  • DAI Members: FREE
  • Care partners of DAI Memers: FREE
  • Healthcare professionals: FREE (Donation to attend appreciated)
  • Researchers: FREE (Donation to attend appreciated)
  • General public: FREE (Donation to attend appreciated)

Register here…

 

YOUR DONATIONS SUPPORT US 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 THEM, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

Support people with dementia:

THANK YOU

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You can view videos of previous DAI “A Meeting of the Minds” Webinars on the You can view videos of previous DAI “A Meeting of the Minds” Webinars 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 Lomøy, Special Representative
Ministry of Foreign Affairs, Government of Norway

Vladimir Cuk, Executive Director
International Disability Alliance

HLPF Statement to WHO: WHO Civil Society Working Group on NCDs

The 36 members of the WHO Civil Society Working Group on NCDs (Non Communicable Diseases) commend the World Health Organization and Dr Tedros for his leadership as the world grapples with the coronavirus (COVID-19) pandemic. An empowered, well-resourced WHO is essential to lead governments, other stakeholders, and people through these trying times.

HLPF Statement to Member States
WHO Civil Society Working Group on NCDs

Published 12 July 2020
Author: WHO Civil Society Working Group on NCD’s
Download document or read the full statement here:

The COVID-19 pandemic has exposed health system gaps and vulnerabilities across the world and has demonstrated more than ever the need for resilient health systems, especially ones that are equipped to respond to the growing burden of non-communicable diseases (NCDs) and mental disorders.

As budgets are reallocated and ministry of health staff are reassigned to respond to the crisis, attention to NCDs and other chronic conditions (including prevention, treatment, rehabilitation and palliative care) has largely fallen off the radar – in particular for hypertension and cardiovascular emergencies, cancer, diabetes, respiratory diseases, obesity, mental disorders and neurological health conditions including dementia.

Due to the COVID-19 outbreak, people of all ages, who are living with NCDs, are more vulnerable to becoming severely ill and/or dying from COVID-19 or from a lack of health care service delivery for their untreated NCDs. It is therefore crucial that we “build back better” health systems and minimize disruptions to lifesaving prevention, diagnosis and care for those living with NCDs.

We call on Member States to:

  • Ensure NCDs prevention, diagnosis, treatment and palliative care are included in national emergency response and preparedness plans, beginning with inclusion of NCDs in national COVID-19 response plans in the context of universal health coverage and sustainable development.
  • Acknowledge the interconnections between global health security, COVID-19 complications and chronic conditions like NCDs and address these by developing, and scaling-up the implementation of robust national NCD action plans to protect and strengthen population health. These should prioritize the WHO ‘Best Buys and other recommended interventions’ and other relevant conventions and plans such as the Framework Convention on Tobacco Control, WHO Global Action Plan on Physical Activity, the WHO Global Strategy to Reduce the Harmful Use of Alcohol, the WHO Global Action Plan on the public health response to dementia, the WHO Mental Health Action Plan and forthcoming recommendations to address mental health conditions and air pollution.
  • Strengthen national resilience to build back better by ensuring support for dedicated health promotion and prevention institutions, ensuring that COVID-19 policy responses do not inadvertently increase exposure to key NCD risk factors and the burden of NCDs in the long-term,  and strengthening workforce competency in health promotion and NCD prevention and control.
  • Allocate sufficient and sustainable financing to enable health promotion and NCD prevention and control programmes and policies to be fully implemented to scale.
  • Raise tobacco taxes and implement taxes on other unhealthy commodities like alcohol and ultra-processed foods and sugar-sweetened beverages to simultaneously improve the health of the populace, reduce health inequities, and lessen the burden on health systems. These taxes can also raise much-needed revenue to help finance health, socio-economic, development and/or pandemic response efforts.
  • Continue and sustain the delivery of routine chronic care, supplies of essential medicines, vaccines and technologies, screening and diagnosis, access to resources, and supportive and palliative services for ongoing management of NCDs, mental health, and other chronic conditions.
  • Develop guidelines at national and global levels specifically for People Living with NCDs to successfully manage their conditions during the COVID-19 pandemic. Adopt innovative approaches, including digital health solutions, to enhance efficiency within health systems.
  • Ensure healthcare workers are recruited, trained, protected, and well-resourced to meet the current and future demand for chronic care and the COVID-19 pandemic and that healthcare research is properly funded, to support the development of innovative, evidence-based approaches to NCDs prevention and treatment in the setting of COVID-19 pandemic. Special attention is also needed to ensure the mental health and well-being of healthcare workers is supported and action is taken to prevent and control violence against health workers.
  • Systematically and meaningfully engage civil society groups and vulnerable groups (including people living with NCDs and other comorbidities, older people, and young people) in the development, implementation, monitoring and evaluation of international, national, and local COVID-19 responses.
  • Adopt a whole-of-government approach to COVID-19 to ensure the adoption of robust, evidence-based policies and plans, which do not expose governments to real or perceived conflicts of interest (such as through corporate social responsibility activities by unhealthy commodity industries) and which ensure access to safe, affordable and equitable access to essential health products (such as PPE, essential medicines including controlled medicines for palliative care) as part of a global response.

The WHO Civil Society Working Group on NCDs and the NCD community remains committed to elevating the voices of civil society and people living with NCDs and supporting WHO and governments during this pandemic and in the post-pandemic recovery period.

Members of the WHO Civil Society Working Group on NCDs

  1. Dr Monika Arora, Healthy India Alliance, India
  2. Ms Kwanele Asante, Our Views, Our Voices global advisory committee, South Africa
  3. Prof Naby Baldé, International Diabetes Federation, Guinea
  4. Mr Stephane Besançon, Santé Diabète, France
  5. Mr Enzo Bondioni, World Dental Federation, Switzerland
  6. Ms Chantelle Booysen, Youth Leaders for the Lancet Commission on Global Mental Health and Sustainable Development, South Africa
  7. Dr Beatriz Champagne, Healthy Latin America Coalition, Argentina
  8. Dr Stephen Connor, World Palliative Care Alliance, USA
  9. Ms Katie Dain, CEO, NCD Alliance (Co-Chair)
  10. Dr Mitra Rouhi Dehkordi, The Association for International Sports for All, Iran
  11. Dr Ulysses Dorotheo, South East Asia Tobacco Control Alliance, Philippines
  12. Dr Ibtihal Fadhil, EMRO NCD Alliance, Iraq
  13. Dr Mychelle Farmer, NCD Child, USA
  14. Mr Juan Núñez Guadarrama, Salud Justa, Mexico
  15. Sir Trevor Hassell, Healthy Caribbean Coalition, Barbados
  16. Mr David Kalema, Hope and Beyond, Uganda
  17. Mr Chris Lynch, Alzheimer’s Disease International, United Kingdom
  18. Princess Dina Mired, Union for International Cancer Control, Jordan
  19. Dr Mwai Makoka, World Council of Churches, Malawi
  20. Ms Narcisa Mashienta, Ikiama Nukuri, Ecuador
  21. Dr George Msengi, NCD Child, Tanzania
  22. Mr Christophe Ngendahayo, International Federation of Medical Students Associations, Rwanda
  23. Ms Leslie Rae, Framework Convention Alliance, Canada
  24. Ms Johanna Ralston, World Obesity Federation, USA
  25. Ms Belen Ríos, O´Neill Institute for National and Global Health Law, Georgetown University, USA
  26. Prof Trevor Shilton, International Union for Health Promotion and Education, and International Society for Physical Activity and Health, Australia
  27. Dr Sudhvir Singh, EAT Foundation, Norway
  28. Dr Tara Singh Bam, International Union Against Tuberculosis and Lung Disease, Nepal
  29. Ms Anjali Singla, Movement for Global Mental Health, India
  30. Ms Kristina Sperkova, Movendi International, Slovakia
  31. Ms Charlene Sunkel, Global Mental Health Peer Network, South Africa
  32. Ms Kate Swaffer, Dementia Alliance International, Australia
  33. Ms Phaeba Thomas, HealthBridge South Asia, India
  34. Dr Nick Watts, Lancet Countdown on Health and Climate Change, United Kingdom
  35. Prof Gerald Yonga, East Africa NCD Alliance, Kenya
  36. Dr Yoshitake Yokokura, World Medical Association, Japan

Learnings from patients, by Dr Daniel Potts

In May 2019 DAI was delighted to host one of our “A Meeting Of The Minds”  Webinars, “Learnings from Patients and Families”, presented by Dr Daniel Potts.  We thank Dr Potts sincerely for giving up his time, and sharing his incredible insights, expertise and learnings, as well as his own deeply personal story. It’s an important webinar worth sharing again here.

DAI July Webinar: Gait training and Dementia

Register now for DAI’s next “Meeting Of The Minds” Webinar, on July 29/30, 2020

Gait Retraining & Dementia, by Associate Professor James McLoughlin PhD

 

 

 

 

 

  • Wednesday, July 29, 2020 (USA/CA/UK/EU)
  • Thursday, July 30, 2020 (AU/NZ/JP/SGP/TWN)
Please note: this is one event, set in a number of different time zones.

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.

About James McLoughlin: James is an experienced neurological physiotherapist and Director of Advanced Neuro Rehab in South Australia, a neurological and vestibular rehabilitation clinic. In addition, James is an Associate Professor at Flinders University working part-time as a clinical Teaching Specialist. James is passionate in promoting best practice for people with neurological & vestibular conditions.

Wednesday, July 29, 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, July 30, 2020 (AU/NZ/JP/SGP/TWN/CHN):

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

The Webinar runs for 1.5 hours.

Check your time here if not listed above.

COST TO ATTEND:

  • DAI Members: FREE
  • Care partners: FREE
  • Healthcare professionals: Donation to attend
  • Researchers: Donation to attend
  • General public: Donation to attend

PLEASE CONSIDER DONATING TO DAI OR BECOMING AN ASSOCIATE OR PARTNER. WITHOUT THEM, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

  • $US 5.00 covers the average cost of one of our monthly bank fees
  • $US 60.00 covers the average of 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

Support people with dementia:
Donate to DAI
Become a DAI Associate or Strategic Partner today
Volunteer for DAI

THANK YOU

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 ‘Safe and Just Futures of People Living with Dementia in Residential Aged Care’ 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

Jerry Wylie and the Dementia Warriors

Supported by the Oregon University, the Alzheimer’s Association and many others, DAI member Jerry Wylie features in this wonderful video talking about the value of peer to peer support.

In fact, like many others with dementia, he sees it as an ‘essential service’ that everyone should be referred to soon after diagnosis. We are proud of all that Jerry continues to do since stepping down as our Vice Chair last year.

https://youtu.be/qi32xuva2HY

Congratulations Jerry, and thank you for all that you continue to do.

A new Quality of Life measure

ARC Linkage Project – A good life: developing a new quality of life instrument with older Australians for economic evaluation in aged care.

This project sought to develop a suite of quality of life measures or quality of life scale for older personsthat can be used for quality assessment and economic evaluation in aged care across community and residential aged care settings.

In order to be used for economic evaluation, the measures must be preference-based. That means the identified quality of life domains will be weighted according to the importance of those domains to older people.

Unlike other quality of life measures, these measures were developed from their inception with older people.

The project has sought to be inclusive in recruitment, including people with cognitive impairment and dementia if they are able to provide informed consent to participate. Initial eligibility was determined by providers and final eligibility by the research team. Participants were not required to undertake any cognitive testing as part of eligibility determination or for data collection.

In late 2019 the project launched its website which will be updated throughout the project: https://www.qol-acc.org/

Chief Investigator organizations: Flinders University, University of Sydney, Australia National University and Dementia Alliance International, and our Chair Kate Swaffer who is based in Adelaide, has been actively invovled in the project.

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
“I 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.”

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 “Meeting Of The Minds” Webinar, Dementia, Human Rights, Selfcare and COVID-19

#Hello, my name is Graeme Atkins

Image soure: Graeme Atkins

Hello, my name is Graeme Atkins. I was diagnosed with Younger Onset Dementia, and would like to tell you my dementia story. It’s actually our dementia story, as it is my partner Susan’s story as well. I will outline my background, the diagnosis itself, what it is like living with dementia and also how it affects our lives.

I’ll include why my partner Susan and I volunteer to advocate for people with dementia, and I will also explain the reason I joined the supportive Dementia Alliance International group.

Recently, I read DAI’s excellent interview with Theresa Montgomery entitled “Hello, My name Is Terry”. I was fascinated by some similarities between our stories and was thus inspired to tell mine. I have thus decided to interview myself and tell our story.

To this end I give thanks to Susan, my back-up-brain, for her fact-checking and editing. There will also be some internet addresses at the conclusion of this interview for you to click on if you wish. These will take you to various stories, music, and film of our volunteer work in advocating for better understanding and education of dementia.

This is how my interview with myself unfolded.

Graeme, tell us a few things about your background

I was born in Sydney Australia and was lucky to have survived as a baby. After being born with facial tumours I underwent many major operations and radiation treatment when I was only six months old in the 1950’s.

However, I did manage to overcome my childhood medical problems. I eventually became a teacher and taught for 32 years, working as a primary school teacher and also as a high school Mathematics teacher.

For fifty years now I have been enjoying playing the guitar and composing my own songs, which were advantageous in teaching children to read. For example, putting children’s names and spelling words into simple songs made a lesson more enjoyable and retained their interest longer.

I met my partner Susan, who is also a teacher, 36 years ago. We currently live on the North Coast of New South Wales, Australia, having moved here because of proximity to a range of excellent hospitals and medical specialists. Along with Susan, they work very hard to keep me alive and interested in life.

Would you care to describe your main medical problems?

It took some time to overcome my childhood illnesses as my facial tumours and tongue continued to grow. I had numerous operations and radiation treatment as a baby. As time went on, I also required speech therapy and corrective dental work.

Later, I underwent a further operation, which reconstructed my bottom jaw with bone grafted from my hip. The radiation treatment to my head as an infant had stunted the bone growth in my jaw.

In 2009 I was diagnosed with Younger Onset Dementia and had to stop working and driving. More details about that later. I am also on medication for Parkinsonism, as I have some of the symptoms of Parkinson’s Disease.

Then in 2013, I was diagnosed with kidney cancer and had surgery to remove half of my right kidney. Luckily, the doctors were aware of the effects of anaesthetic on my brain in relation to my dementia diagnosis and so an epidural was administered.

In early 2019, I had a major heart attack and my life was saved by ambulance paramedics and hospital Emergency Department staff. I was very surprised to find out that I had eight heart blockages. It was too dangerous to undergo open-heart surgery. Heart surgery and dementia are not good friends, and that’s without even mentioning anaesthetic. Our Cardiology team suggested to just stent two arteries and to leave the other six risky ones alone.

After the heart attack I then experienced a small TIA and numerous seizures. More trips to hospital ensued, which resulted in us getting to know the local ambulance officers, doctors and nurses quite well.

In late 2019, after I become unwell again, I was diagnosed with complete heart block. I was flown to a hospital in Sydney, with a cardiac nurse accompanying me, where a heart pacemaker was implanted. Although 2019 was not a good year medically, I am feeling much better and am greatly indebted to our superb Australian health care system.

Naturally, I have even composed a tongue-in-cheek song about my major illnesses, called My Name Is CHAD. It’s an acronym, which stands for Cancer, Heart Attack, Dementia. I’m starting to think that cats are so inferior to me, as they only have nine lives.

Would you like to tell us more details about your dementia diagnosis?

I was diagnosed with Younger Onset Dementia in 2009 at the age of 54. To me, it doesn’t seem that long ago. This is possibly because I try not to dwell on it. Also, it helps that for much of the time I have probably forgotten about my diagnosis.

Leading up to my dementia diagnosis, my partner Susan had been suggesting that I visit my GP about my forgetfulness and confusion. Things like forgetting names, dates and appointments, using a wrong word in a sentence without realising, declining ability to multi-task, forgetting how to use appliances properly and losing possessions. These were all becoming more noticeable. Eventually I did go to the GP. However, upon returning home, Susan wanted to know what the GP had said. I had actually forgotten to discuss the intended issues.

Susan made another appointment for me and this time she attended it with me. Thus began the long haul for us, involving a timespan of three years, a total of seventy doctors’ appointments and nearly twelve thousand kilometres of travel. We heard many differing opinions, such as things like depression, stress, or even having a midlife crisis.

We had to keep pushing for further opinions, as I continued to decline. Eventually, there were rounds of cognitive testing, several MRI scans and a lumbar puncture. Each of these indicated a concern. I was finally diagnosed with Younger Onset Dementia. In a way, it was a relief. I was still able to do many things quite well, but other tasks were becoming difficult to do.

Life for me and my partner Susan changed forever from then on. We decided not to hide my diagnosis from friends, family and the general public, even though we already knew about the stigma and isolation that often accompany dementia. We have become quite used to being isolated over the years since my dementia diagnosis, as people’s contact seems to have dropped away. Dementia is not contagious. We are absolute experts at experiencing isolation. Under the current lockdown in relation to Corona Virus, we wonder how people would cope being isolated for years as is the case of people being diagnosed with dementia.

How has your diagnosis of dementia affected both of your lives?

It has life-changing effects. It affects work, driving, insurances, finances and daily living, to name just a few. I really miss teaching, especially the smiles on the children’s faces. I knew I could not afford for a child under my care to get hurt, if I forgot to give appropriate instructions or forgot to concentrate.

I also stopped driving. I definitely couldn’t afford an accident, let alone the awful guilt of possibly injuring or killing someone. It was probably a good thing that I was no longer driving, as this had featured prominently in our initial discussions about the need to see my GP. At one stage I had driven down a one-way street the wrong way and it was scary. So was the time when I drove onto the footpath and almost hit a boy who was riding his bike on the footpath.

My partner Susan needed to become my fulltime carer, and so was not able to work anymore as well. Our combined income and future potential finances were impacted enormously. We calculated that had we both been able to work until our retirement age, that my dementia diagnosis had conservatively cost us two million dollars in lost income and superannuation benefits.

Aged in my mid-fifties, I fell between the cracks. It was a year-long battle to get some sort of income. I had little choice but to take out my superannuation early, but even this was like wringing blood out of a stone. I never did get all of my entitlements!

After Susan wrote many letters to government departments, we found ourselves on a wild goose chase. In my application to the Australian Government’s social security department, called Centrelink, we discovered that they did not even have a box to tick on the form for Younger Onset Dementia. Hopefully this has changed. Trying to get a Disability Support Pension seemed to be too difficult. You can’t have dementia – you’re too young! We had of course included reports from medical specialists confirming my diagnosis.

Finally, I was put onto Unemployment Benefits, but of course I had to follow the required rules of turning up to a Job Network in order to be retrained and apply for jobs. I thought, this is going to be interesting. At one stage, in sheer frustration, I asked if I could be retrained as an air-traffic controller – but please, only send one plane at a time. Eventually, my situation was understood, and the appropriate things were put into place to assist us. This is one of the reasons that we advocate for changes, so that people understand younger people get dementia. It is not just an old person’s disease.

Due to your dementia diagnosis, what challenges do you face on a daily basis?

I am unsafe at home alone, after several worrying incidents involving falls, fire, and electricity. Susan has to be with me at all times in case further accidents occur. In the kitchen I have caused three microwave oven fires and we were just lucky they were noticed before they spread further. I have stumbles and falls throughout the house, sometimes requiring GP visits and physiotherapy. These are due to my visuo-spatial issues which are caused by my dementia.

I interchange things that are similar in some ways, yet clearly different. One day I tried to multi-task and feed the cat while also making Susan a cup of coffee. When I took Susan’s coffee into the loungeroom she looked in the cup and told me she couldn’t drink it.  When I asked, Why not? she told me that it had the cat’s meal in it. We both paused and rushed to the kitchen to see whether Magic the cat was enjoying his bowl of instant coffee. He definitely wasn’t.

In the bathroom I invented a new danger. This also involved interchanging things but this time it hurt. While cleaning my teeth I had managed to put the toothpaste onto my razor blade, instead of my toothbrush. I was very lucky to have inflicted only minimal damage to myself. After that, Susan sensibly located the shaving gear in the laundry and left the teeth cleaning gear in the bathroom. Brushing your teeth with a razor is not a good idea.

On another occasion, after buying a new wallet in K-Mart, I sat outside the shop and transferred everything from the old wallet into the new one while Susan continued to shop. After she had driven us home, I proudly pulled out my new wallet. I was horrified. In my hand was the old one, which I thought I had thrown into the rubbish bin outside K-Mart. Back we drove and anxiously searched through that bin while the K-Mart security officer eyed us suspiciously. Luckily for me the bin hadn’t been emptied yet, so I happily retrieved my new wallet containing all my cards and cash.

Webster Packs are generally of great assistance when taking tablets, although I have already made at least four different types of errors. You can take the evening pills in the morning or perhaps take tomorrow morning’s today. Also, you can do a double-up by taking, say, Monday morning’s and then, ten minutes later, take Tuesday morning’s as well. Or, finally, why not just forget to take the tablets altogether?

Many of my daily challenges are referred to in the lyrics of my songs. For example, the difficulties of keeping up-to-speed while watching a television show are mentioned in my song entitled ‘But It’s Happening Now’. The lyrics refer to “In Midsomer Murders I’m always two bodies behind”. This is in keeping with my desire to try not to lose my sense of humour. I am happy for people to laugh at the lyrics of my songs as I know they are not laughing at me.

How do you feel you are perceived by other people?

The situations revealed in the previous section are the type of things that happen to me that people don’t know about. They can see me out and about in public, have a ‘normal’ conversation with me, then wander away and say to someone else “I can’t really see a problem with Graeme,” or that one people diagnosed with dementia especially hate, “They don’t look like they have dementia.”

But people can’t see inside my head, so they can’t see reduced blood flow, a glitch in the hippocampus, high protein levels in cerebrospinal fluid or the results of official cognitive testing. For protection against any diagnosis-doubters, Susan always carries copies of my diagnosis and also my pharmacy medication list, which includes Aricept, in her handbag.

People have no idea that the reason I may have seemed normal to them at that time is because I would have had a nap at home before going out so that I am refreshed. They don’t know that Susan, as my carer, reminds me to have a sleep before we leave home for an outing. She also makes sure our calendar does not have commitments on consecutive days.

One of the things I do find difficult is when people jump in too quickly to try to help me finish my sentence when I have hesitated. They genuinely think they are helping but I would prefer them to wait because their suggested answer can put me off. For example, if I said, ‘During our holidays I went … (pause), and then a kind soul added “to the beach?”  this would then put me off any chance of recalling what I was actually going to say.. “on a helicopter ride.” I am thus visualising sand and surf thoughts, and, for me, these have actually replaced my initial thoughts about flying, rotors and a helicopter.

Tell us about your partner Susan’s role as a Care partner.

Image soure: Graeme Atkins

As a full-time care partner Susan, just like so many other carers, has made many sacrifices, having lost her career, work colleagues, future teaching income and associated superannuation. Most people would not know the extra tasks that fall to a full-time care partner who is looking after someone who has dementia. She is my partner, carer, nurse, secretary, manager, personal assistant, chef, chauffeur and extra memory bank, to name just a few.

I feel such a burden because she has few social contacts and, as I stated earlier, many friends and family seem to go missing when dementia is mentioned.

Susan continues to run the household and drive me everywhere I would like to go, always with a smile on her face. Her only time to herself is when my respite worker arrives. Dementia is hard. She has had to get rid of all the coffee tables and furniture items that have a sharp corner – at times it’s like having a two-year-old in the house. I don’t know how she does it. She takes into account my other shortcomings, like declining short-term memory and difficulties with background noises, multiple conversations or rapidly changing television images. To me, as my care partner, she is like Wonder Woman.

At local meetings and also forums further afield, she has been advocating for carers in general for many years now. This can be any carer looking after someone who has any issue at all. Susan highlights the very important role of carers who are often undervalued in our communities.

In 2011 Susan was named New South Wales Caring Partner of the Year. She was also made an Ambassador to advocate for carers. We were both thrilled to be invited to Sydney as guests of the NSW Government for a lovely Presentation Day awards ceremony at Parliament House. I am aware there are thousands of carers out there in Australia but, even so, from my biased point of view, it was a just reward. I am very lucky to have Susan.

Tell us about the dementia advocacy work that you have both done

In being up-front about my diagnosis we decided to become advocates to improve the general public’s knowledge and understanding of dementia. Susan is a great public speaker, with a wealth of knowledge about dementia. Her mother had been diagnosed with dementia a few years before me, so Susan had the personal experience as well as a lot of imparted medical information. She had two people in her life to assist. Susan quickly learnt that there is some theoretical advice that does not always work in practice, and that every individual is different. Susan’s mother was only 67 years of age when she was diagnosed.

We started doing presentations to try to reduce the stigma and misunderstandings that exist. We have attempted to debunk the myths around dementia, having been invited numerous times by various organisations to explain dementia from our personal experience. In telling our story at forums and conferences, and participating in interviews for radio, newspaper, telephone and television, we have hoped that people have gained a better understanding of dementia.

Sometimes we feel it is very hard to change some people’s long-held incorrect view of some aspects of dementia. Then there are times when we feel we have actually made a difference and helped to affect changes. It seems that the best chance of achieving important changes to local, state or national government policies is when an important person in office has actually had someone in their own family diagnosed with dementia. Or perhaps they have previously worked in the health industry. Either way, they then know from personal experience the complex and long-lasting effects of the disease.

Image soure: Graeme Atkins

Our tag-team method seems to be popular. Susan speaks for several minutes on an aspect of dementia, then I follow her to sing a song that I have written about that topic. We have presented from just ten minutes up to ninety minutes. This method gives me a break between songs, which is necessary.

At one presentation, when we were on for three different times throughout the day, the Aged Care Facility hosting the conference had arranged a bed for me for some naps. Now that shows a real understanding of dementia.

We try hard to explain that younger people get dementia. We also try to make it clear that Younger Onset Dementia is when you are diagnosed under the age of 65. YOD is a key part of our story, because that is the age at which people are likely to be working, have mortgages, or are supporting children, parents or both.

Stigma and isolation, which are often experienced after a diagnosis, also feature prominently in our talks. Another important point we make is that a dementia diagnosis does not mean that a person is instantly incapable of doing things or unable to contribute to society. One time I was asked “When will you go mad?” while on other occasions people are quite surprised when I am still able to do some things well.

We also advocate for improvements to community facilities to make life a little easier for people living with dementia. We were also happy to participate in the YouTube educational movie ‘The Unspoken Impact of Dementia’. (Please refer to Internet addresses that follow this interview)

On the local front, I have been attending the local ‘Timeslips’ program, which is a creative storytelling technique which uses photographs to assist people with dementia to think, reason and speak.

As the other half of our dual dementia presentation, I enjoy having a special purpose for my song writing and singing. I have written many songs about aspects of dementia. It has been proven that music is especially effective in activating multiple brain parts simultaneously. The lyrics to my song “Spreading the Word” try to sum up the type of presentation that we do:

We travel and present so you’re aware,
Here’s our dementia story that we share,
She pleads and speaks it from the heart,
I sing and strum to play my part –
We won’t stop ’til people listen and are fair.

How do you try to keep your brain active?

These days I am still interested in life and still enjoy doing things, but I have had to slow down, learn to pace myself and rest, especially my brain. At home, I like word puzzles, watching soccer, reading books and computing. I especially love to play my guitars, banjos, keyboard and ukulele. As long as Susan can hear some sort of noise emanating from our garage/music room, even it is snoring, then she knows I’m still okay.

Image soure: Graeme Atkins

I still like to play lawn bowls with my supportive and understanding friends at my local bowling club. Recently I purchased a mechanical bowling arm to assist me, which has allowed me to continue playing.

This same enjoyment exists when we are with local ukulele group friends, or at the cinemas, local library or zoo. Socialisation is especially important after a diagnosis of dementia.

But it is important not to just do the same type of things repeatedly. Trying to learn new things, making new brain connections, is especially good for the brain. For example, on the advice of one of my Specialists, I have been learning to play the keyboard. As this instrument is played with my hands down at chair level, I am less affected by my tremors than when I play my stringed instruments.

How did you find out about Dementia Alliance International?

I first met Kate Swaffer at a respite forum in Sydney, about four years ago. I had heard that she is also a staunch advocate, so I started researching the dementia things she was associated with. When I read about Kate’s co-founding of DAI, I googled it and became quite interested in what it did.

The realisation that DAI offered a fun and friendly network of like-minded souls, just like me, was a great surprise.

My respite worker helped me find out what Zoom was and assisted me to buy a webcam for my computer. Not long afterwards, I had registered for DAI and was soon zooming all over Australia, and then the world.

Meeting up with understanding friends without even leaving the house – now that seemed a good idea!

Gone were the usual costs for transport, food and drink. The bonus was there was no need for Susan to stop what she was doing. Being at home, if I get tired, I just say ‘Well, I’m off for a nap. See you all later.’

My DAI Zoom buddies have taught me some new skills, so now I can even do chat and screen share. My weekly support meetings, involving the Australia/New Zealand/Singapore regions, are most enjoyable to attend. So are the monthly international meetings and the educational Webinars. It is interesting to be able to speak to and hear from people from all over the world who also have dementia, just like me.

I get to chat and have fun with my internet support network in a friendly atmosphere. Nobody minds if someone loses track of what they were trying to say, as we are all in the same boat. Nobody rings a conference bell and says that your time is up. At Dementia Alliance International I am accepted by the members, being among friends who show patience and compassion because they can relate to my situation.

DAI’s hosts and members treat each other with respect, equality and without discrimination or stigma. When I see all of our little heads, appearing in an array on the laptop screen, I think it makes us look and feel like a happy little family. Perhaps we look just like the start of the TV show The Brady Bunch, even though we are all in distant locations.

In my opinion, DAI have been trend-setters for a number of years now by supporting people online and by helping them to connect.

People with dementia, who have often been isolated, are still zooming in to their friends. This helps you to feel good. Under the current Coronavirus isolation rules, many people without dementia are not coping with isolation.

However, for many of us with dementia, we have been living in isolation for many years due to the fact that family and friends have often turned their backs on us. (Refer to my ‘Isolation’ song reference at the end, which was written a number of years ago.)

I think that one of the best things about Dementia Alliance International is that it is free to attend. Sure, you need to have a laptop or phone and also to pay for your own data, but’s fair enough. Most other organisations seem to charge you in some way to help you.

It would great if DAI could receive some extra financial assistance to pay for their zoom fees and other set expenses, as they exist on half a shoestring budget and are run only by volunteers.

I’ve been lucky enough to be able to give something back to DAI in the form of music. Sometimes at a meeting I am able to sing a song, for some extra enjoyment. Even my brain synapses must enjoy the extra connections. It has been especially pleasing to be able to contribute some live songs to the last few years of DAI’s annual WRAD – World Rocks Against Dementia – fundraiser meetings. My theme song for DAI describes the alliance as follows:

“We are Dementia Alliance International,
Just for people with dementia, we run our own venture,
We are birds of a feather, who have banded together,
I implore you, to make sure you, do not doubt us,
Nothing about us without us.”

Thank you Dementia Alliance International. It is great to belong to an organisation whose founders and volunteers know how to connect with and support people living with dementia.

For anyone interested, the internet references below will show you various stories, music or film of some of Susan’s and my advocacy work. We do not charge or get paid to present and we give out copies of my CDs and DVDs for free, just in the hope that people will gain a greater understanding of dementia.

DAI thanks Graeme Atkins, and his wife Susan for their story, and especially for their passion to make the world a better place for all people with dementia and our families. We love that he is our self proclaimed ‘Wreck’ officer (Recreational Officer!!!)

The following links from Graeme may be of interest:

https://www.youtube.com/watch?v=z15-0xZTng4 (‘The Unspoken Impact of Dementia”, 4 mins, made by Alucindor Productions)

https://www.dementia.org.au/sites/default/files/DementiaFriendlyGuide_Sept14.pdf  (page 7, foreword, of “A Guide To Becoming A Dementia Friendly Community)

https://www.youtube.com/watch?v=wCOw3hJS_Nw (Song, ‘Happy 5th Birthday Dementia Alliance International, Video)

https://baptistcare.org.au/about-baptistcare/news/an-inspiring-2015-dementia-forum/ (Article on our dementia presentation, written by Michelle Van Doninck, Baptist Care)

https://www.portnews.com.au/story/5495839/stories-take-shape-in-creative-and-relaxed-environment/(Newspaper article, by Lisa Tisdell, Port News, about Timeslips Program with Lisa Hort)