All posts by DementiaAllianceInternational

The World Alzheimer Report 2022 survey closes June 20

Information via Alzheimer’s Disease International:

“We just wanted to send you a brief reminder that the extended deadline for our World Alzheimer Report 2022 survey ends this Monday 20 June.

As you are likely to already know, we are asking to hear from people living with dementia, informal carers and healthcare professionals around their experience of post-diagnosis. If this applies to you or anyone you may know, including family members, friends, community members or professional networks, we please ask that you share this email or the relevant survey links with them.

Every response we receive plays an important role in better understanding the global experience of post-diagnosis and will help us in aiming to improve care and support for millions.

Each survey takes about 10 minutes to complete and is available in English, French, Spanish, Portuguese, Japanese, Chinese (Simplified and Traditional) and Arabic. To change the survey to your preferred language, select from the options of languages in the right-hand corner of the survey.

Take the survey for people living with dementia Take the survey for carers Take the survey for clinician and healthcare practitioners

Congratulations Emily Ong

The DAI Board of Directors and DAI membership wishes to congratulate Ms. Emily Ong  from Singapore on her election to the board of Alzheimer’s Disease International. 

There were many nominations for this position than in past years, from multiple countries, so it is exciting to know the voices of people with the lived experience of dementia is growing. The election took place at the ADI Council meeting on Wednesday 8 June, the day before the ADI conference commenced, with Emily winning the vote, and Mrs. Helen Rochford-Brennan being a close second.

We therefore also congratulate Helen, and the other nominees, as we  know they will still continue with their advocacy.

Emily will not only represent DAI members well, but with her multicultural background, and focus on low and middle income countries, will serve the global dementia community.

We also congratulate our co-founder and Human Rights Advisor Kate Swaffer, who stepped down from the ADI board this week, having served ADI on their board as an elected member since 2016, having fulfilled the full two terms allowed, thereby vacating the position on the ADI board for a person living with dementia.

Check out the past, and upcoming ADI Conference sessions which include people living with dementia here, as you will see some of your friends. 

DONATE TO OR PARTNER WITH DAI TODAY

 

 

 

Dementia Through the Eyes of a Doctor With Dementia

Thanks to DAI member Rose Ong from Canada for this blog about what it was like as a medical doctor, for Dr Kazuo Hasegawa to be diagnosed himself, with dementia.

A Look at Dementia Through the Eyes of a Doctor With Dementia

Photo source: AAJ, Dr Kazuo Hasegawa presenting at the ADI 2017 conference in Kyoto

Dr. Kazuo Hasegawa was 90 years old when interviewed on Japan’s NHK Documentary television channel in February 2020. He has been a psychiatrist for most of his life, specializing in dementias.

In 1974-75, he was instrumental in developing Japan’s version of the now well known Mini Mental Symptoms Exam or MMSE, primarily developed for psychiatric patients, but later used to assess the level of Mild Cognitive Impairment by physicians around the world.

Dr Hasegawa was also on the ADI Conference Scientific Programme Committee in 2017, when they co-hosted their conference with Alzheimer’s Japan. This video was his message to AAJ members for their annual conference in 2021. He said, “Live your own life with positive intent and build a future.

But it was in his 50’s that his focus changed from psychiatry to dementia specifically when a patient and friend of his touched his heart; in his words,

“..I had one patient I’ll never forget. That person had some music paper for writing notations. (On it) he wrote the following message:

         ‘Where has the excitement of my life gone?’

It was a very sad cry from the heart. I’ve always kept that deep in my mind. That day, I pledged to devote my career to doing research, providing care, whatever (was needed), to deal with dementia.”

Dr. Hasegawa’s patient was 50 years old when diagnosed with Young Onset Dementia. His wife shared with NHK another script he wrote on notation paper:

I have no melodies in me, no harmonies, no resonance; I want my heart back. The source of all my feelings. Please come back again. That beautiful throb of excitement may never be mine again.”

Little did Dr. Hasegawa realize that after years of study, decades of speaking at conferences, he would become one of the patients he was determined to help.

He was later diagnosed with a rare and very slow developing dementia, Argyrophilic Grain Disease, defined as:  (AGD)is a sporadic, very late-onset tauopathy, accounting for approximately 4–13% of neurodegenerative dementias. AGD may manifest with a range of symptoms such as cognitive decline and behavioral abnormalities.

He did continue to do research on his good days. Because he was one of Japan’s leading Dementia Authorities, his family would assist his transportation to conferences where he continued to speak as a valued member of the medical community, well into his own diagnosis.

Dr. Hasegawa, like all of us, was gripped by anxiety when he was diagnosed with AGD, because of the scores of people he had treated over the years.

“I thought, ‘I’m finished. I’m hopeless. Will I become incapable of doing anything?’ I felt more and more alone.

Now that I have dementia, I realize, I have to stop trying to ease my patients’ fear with shallow platitudes. I never thought it would be so hard.”

The Wall Street Journal stated that Dr. Hasegawa had imagined the minds of dementia patients were in a permanent state of fogginess, but as a patient, he experienced swings in his mental fitness.

In the morning, his brain was “shining and normal”.

But by early afternoon his memory was fading, and by dinner time, “I became like a real dementia patient.” He advised his caregivers to attend to his needs in the morning while he was lucid and more alert.

He started to keep a journal of all the things he was forgetting. It was as if he needed to double check everything all the time. He realized with certainty that he was deteriorating.

The idea of living life with certainty; that certainty is part of life, has declined.”

Always promoting and advocating for daycare programs, he was very lonely when he participated in them himself. He was quiet and never smiled, overcome with the grief of missing his wife and daughter. Eventually, he stopped attending.

When asked “What is dementia?” he said,

The superfluous things are scrapped away when you have dementia. It works very efficiently. There’s cause for concern, but you don’t notice it. This is one salvation God has prepared for us all.”

When asked how his ‘landscape of life’ has changed, he replied,

“It hasn’t changed. It’s normal. It’s the same landscape as before. When the sun goes down, when you can see Mt. Fuji – it’s normal. The people I meet look the same. There is no change.”

Even with dementia, the physical landscape doesn’t change. It’s only the person with dementia that changes.

However, most of the negative changes that impact the person with dementia, are related to the way others view and treat that person, and to the disabling environments most societies expect them to live in.

Dr Hasegawa passed away peacefully in his sleep aged 92.

https://www.wsj.com/articles/authority-on-dementia-found-new-insight-as-patient-11637938800

https://www3.nhk.or.jp/nhkworld/en/ondemand/video/4001348/

 

DAI Members active at the ADI2022 Conference in London


It is an exciting time for many people with dementia from around the world, many of who are also members of DAI, as they are attending and involved at the ADI Conference in London next week, either in person, or virtually.

We congratulate them all, and look forward to reporting back on their sessions.

On Wednesday June 9, ADI and DAI look forward to welcoming all people with dementia and their travel companions or care partners to the conference, which will be held in the Prince of Wales room, during the morning tea break.

Along with key ADI’s Chris Lynch, Jane Cziborra and Paola Barbarino, DAI board members Julie Haydn and Bill Yeates will be there to welcome everyone.

Schedule of speakers with the lived experience of dementia:

Thursday, 9 June

Name Organization Session Time
Kate Swaffer (Session Chair) Co-founder, peer to peer support group co-host & HR Advisor, Dementia Alliance International Dementia Alliance International focuses on inclusive dementia design, Virtual 7:30-8:30am
Helga Rohra

(speaker)

DZNE Dementia Alliance International focuses on inclusive dementia design, Virtual 7:30-8:30am
Helen Rochford Brennan (speaker) Dementia Advocate, Ireland

 

Opening ceremony, 175 suite 8:30-9:30am
Kate Swaffer (moderator)   Risk reduction, prevalence and registries, Duchy suite 11:30am-12:30pm
Keith Oliver

(speaker)

IDEAL programme, University of Exeter Well-being and quality of life, Long room 11:30-12:30pm
Tomofumi Tanno

(Key note speaker)

Dementia Advocate, Dementia Network of Miyagi Plenary 2: The imperatives of diagnosis and treatment, 175 Suite 2:00-3:30pm
Julie Hayden and Nigel Hullah Dementia advocates, 3NDWG Fireside chat in the Exhibition Hall: co design with people with dementia 3:30-4:00pm
Alzheimer’s Society Croydon Singing for the Brain group (performance) Alzheimer’s Society Welcome reception, Lock Bar (roof terrace) 5:45-6:00pm
Donald Baker

(speaker)

Act 2 Studio Works Attitudes, awareness and stigma On demand
Howard Gordon

(speaker)

Deepness Dementia Radio Attitudes, awareness and stigma On demand
Kate Swaffer

(speaker)

DAI & UOW Behavioural and psychological symptoms of dementia On demand
Christine Thelker

(speaker)

Canadian Consortium on Neurodegeneration in Aging Social isolation, loneliness, depression and the consequences for people with dementia and carers On demand

  Friday, 10 June

Name Organization Session Time
Kevin Quaid

(speaker)

Alzheimer’s Society of Ireland Diagnosis, diagnostic tools and cognitive assessments, Duchy suite 10:30am-12:00pm
Emily Ong

(panelist)

Dementia Alliance International Symposium: ADI accreditation: recognition in dementia care standards, Long room 12:15-1:15pm
Natalie Ive

(speaker)

Dementia Australia Advisory Committee Dementia friendliness, 175 suite 3:30-4:30pm
Kevin Quaid

(speaker)

Dementia Research Advisory Team, Ireland Meet the experts by experience, Long room 4:30-5:00pm
Helen Rochford Brennan

(speaker)

Dementia Research Advisory Team, Ireland Meet the experts by experience, Long room 4:30-5:00pm
Emily Ong

(speaker)

Dementia Alliance International Symposium: Women and Brain Health: Risk reduction and opportunities for achieving a brain healthy lifestyle. Sponsored by AARP, Virtual 5:00-6:00pm

 Saturday, 11 June

Name Organization Session Time
Juanita Hughes

(speaker)

Western Brisbane Dementia Alliance Supporting knowledge exchange and learning through bursaries, Virtual 7:30-8:30am
Kate Swaffer

(Key note speaker)

UOW Plenary 5: Risk reduction and prevention: the latest in research and the challenges of bringing new messages to the broader public, 175 suite 9:00-10:00am
Emily Ong

(speaker)

Dementia Alliance International Support for people with dementia, 175 suite 10:30am-12:00pm
William Yeates

(speaker)

Dementia Alliance International and Dementia Australia Risk factors, Duchy suite 10:30-11:45am
Alister Robertson

(speaker)

Dementia Alliance International Well-being and quality of life II On demand