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. 

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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

 

 

World Health Day 2022

On April 7, 2022, DAI joined the world in observing World Health Day, an annual initiative by the World Health Organization (WHO) to promote good health and well-being of people across the world. We are posting our blog about World Health Day, to coincide with the Seventy-fifth World Health Assembly, being held on 22-28 May 2022 in Geneva.

The theme for World Health Day 2022 focused on raising awareness of the impact of climate change on human health – Our planet, our health.

There is growing research evidence showing that climate change is among the leading global health threat and its impact on health is deeply complex.

One of the environmental health hazards is air pollution which can lead to serious health conditions such as asthma, chronic obstructive pulmonary disease COPD), lung cancer, and the risk of hemorrhagic stroke in older women.

Air pollution is a mix of hazardous gases and fine solid particles and it can come from human-made pollution like, traffic-related air pollution (TRAP) and mother nature pollutants, such as smoke from wildfires, ash and gases from volcanic eruptions. Long-term exposure to these pollutants is associated with oxidative stress and inflammation in human cells and may cause chronic diseases and cancer.

But what about air pollution on brain health?

In recent years, the possibility of air pollution as a significant threat to brain health has caught the attention of neuroscientists and toxicologists. A study done in Ontario, Canada, revealed that adults living within 300 meters to heavy traffic had a higher risk of dementia and the result is consistent with earlier study done on older men who have long-term exposure to air pollution.

The particulate matter (PM2.5) that arises from wildfires and vehicle emission can be inhaled deeply, affecting the central nervous system, and leading to decreased cognition and well-being. Hence, it is not surprising that air pollution was added to the list of 12 potentially modifiable risk factors for dementia by the Lancet Commission on Dementia Prevention, Intervention, and Care in 2020.

Multiple studies have shown that elevated long-term exposure to PM2.5 was associated with higher hazard of all-cause dementia and vascular/mixed dementia. It also aggravated the early decline of episodic memory problems and depressive symptoms in older women as shown in another study.

What this means to prevention, intervention and care of people living with dementia?

It means that air pollution should not be seen just as environmental threat but also a significant threat to human health. Thus, reducing air pollution is everyone’s business just like dementia is everyone’s business.

There is a need to educate public on the connection between poor air quality and cognition decline, and possibility of developing dementia from long-term exposure. More research is needed to determine which kinds of pollutants are most harmful to brain health.

It also means that residential aged care homes should be situated far away from TRAP and industrial pollution since older people are at-risk group.

However, air pollution is not restricted to outdoor but also indoor and in poorly ventilated homes, concentrations of these gases like nitrogen dioxide can be much higher indoors than outdoors.

This is where environmental design can play a significant role in finding innovative ways to improve air quality and reduce indoor air pollution sources. It is about creating a sustainable and livable place and that is one of the environmental focus areas of the DAI Environmental Design Special Interest Group (ED-SiG).

By Emily Ong, DAI Board member and ED-SiG project lead

#ClimateCrisisIsHealthCrisis
#WorldHealthDay2022
#OurPlanetOurHealth

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#EqualUN: Open Letter re CRPD Committee Elections

We are pleased to announce that Dementia Alliance International is one of more than 80 organisations and experts who have signed an open letter calling on UN member countries to protect gender parity and diversity of representation on the committee on the rights of persons with disabilities.

The letter was coordinated by Sightsavers and partners from Light for the World, GQUAL Campaign, Women Enabled International, CBM Global Disability Inclusion, the World Federation of the Deaf and the International Disability Alliance. It has been sent directly to each participating country’s permanent mission to the UN in New York.  

We signed onto this very important Open Letter to the United Nations to protect gender parity and diverse representation on UN disability committee.

We must ensure people with dementia are not left behind.

Dementia is a condition causing cognitive and mulitple other disabilities, currently affecting more than 57 million people globally, and their families. It also affects more women and girls, than men, making gender parity on the UN CRPD Committee even more critical.

Read the full open letter here:

Your Excellencies,

We the undersigned call on you, as a State Party to the Convention on the Rights of Persons with Disabilities (CRPD), to use your votes in the election of the new CRPD Committee at the Conference of States Parties in June 2022 to protect the gains made on gender parity on the Committee and to ensure it continues to become more representative and diverse in line with the intent of the CRPD.

In 2020, six women were elected and gender parity on the CRPD Committee was achieved for the very first time. This is in stark contrast to 2016 when no women were elected (resulting in just one woman sitting on the 18-member Committee), and all previous iterations of the Committee, when women were in a minority. States Parties must protect this progress.

The CRPD states in Article 34 (4) that in electing Committee members, consideration should be given to “equitable geographical distribution, representation of the different forms of civilization and of the principal legal systems, balanced gender representation and participation of experts with disabilities.”

As well as maintaining gender parity, we must ensure equitable geographical distribution and persons with diverse types of disability. To make progress towards an equal world for everyone, in both public and political life, it’s essential that the voices of underrepresented groups of persons with disabilities are heard, including women with disabilities, deaf persons, deaf-blind persons, persons with intellectual disabilities and persons with psychosocial disabilities.

At the Conference of States Parties in June 2022, you have an opportunity to protect the gains made in recent years on the CRPD Committee on gender parity, and drive progress towards representing the full diversity of voices of experts with disabilities. We urge all States Parties to the Convention on the Rights of Persons with Disabilities to cast their votes with this in mind.

Sincerely,

Coordinating group 

Sightsavers #EqualUN Campaign (UK/Global) 
Light for the World (Austria/Global) 
GQUAL Campaign (Global) 
Women Enabled International (USA/Global) 
CBM Global Disability Inclusion (Netherlands/Global) 
World Federation of the Deaf (Finland/Global) 
International Disability Alliance (USA/Global) 

The full list of signatures and the translated versions of the letter can be found here.

Note: These graphics were generously provided for anyone to dowlload to use for social media posts.

Research Wrap: Brain Health and Sleep

Let’s talk about brain health: Sleep

As #DAI progresses with its series of monthly research blogs, we thank Laura Garcia Diaz for our April research blog, focused on the impact of sleep on dementia.

Thank you Laura.

“I live in Canada and on March 13th our clocks went forward one hour. Even though an hour difference may not sound like a lot, the week after the time changes (especially when we lose an hour in the process), I always feel off. Since the topic of sleep has been on my mind lately, I decided to dedicate this blog to it. What does the science tell us about sleep and brain health?

Sleep is essential for life, so it may not be surprising to learn that sleep plays a very important role in keeping our brain healthy. Sleep has been shown to play an important role in helping us remember things, known and memory consolidation, and learning (Krause et al., 2017).

It appears that while we sleep our brain is working hard to help us remember everything we did and/or learned that day. Studies have also shown that abnormal sleep-wake patterns and breathing difficulties while sleeping (for example, sleep apnea) are associated with an increased risk of dementia (e.g., Yaffe et al., 2014).

Although the relationship between sleep and dementia is still being studied, sleep is now recognized as a risk factor for cognitive decline and Alzheimer’s disease. Based on this information, it appears that sleep plays an important role in maintaining brain health as we age.

Although the role of sleep on supporting our brain health has been of interest to scientists for many years, the amount of sleep required for optimal brain health is still unclear (Tai et al., 2022). When reviewing the literature, something that I found interesting, is that going to bed late at night and wake up late in the day has been found to be associated with cardiovascular disease and mortality (Knutson et al., 2018; Partonen, 2015). I have always been told to aim for 7-8 hours of sleep each night.

When reviewing the literature, I found that both short (less than 7 hours) and long (more than 10 hours) sleep duration appears to impact cognitive performance (for example, attention and working memory) (Hirshkowitz et al, 2015; Gildner et al., 2014).

However, some studies have also shown no relationship between sleep duration and cognition (e.g., Saint Martin et al., 2012). Interestingly, in a recent study, six or less hours of sleep at night were found to be associated with a higher dementia risk, when compared to sleeping seven hours (Sabia et al., 2021). Similarly, in another recent study, it was found that peak cognitive performance was associated with seven hours of sleep at night (Tai et al., 2022).

Although the science does not appear to have a definitive answer regarding the sleep required for optimal brain health (particularly for supporting cognition), it does appear that there are benefits to getting 7 hours of sleep at night. I did not conduct a thorough research on this topic, so if anyone is interested in learning more about this, please let me know in the comments and I can dedicate another blog to this.

I thought I’d be good to end this blog with some information about sleep hygiene.

Here are some tips for better sleep:

  • Try to go to sleep and wake up at the same time every day.
  • To prevent you from having to go to the bathroom in the middle of the night, try not to drink a lot of liquids before going to bed.
  • If possible, avoid heavy meals too close to bedtime.
  • Try to relax before bed. Something that I like to do is light yoga followed by a 10 min meditation. It always helps me have a better sleep.
  • If you are a coffee or tea drinker, try limiting your caffeine intake in the afternoon and evening.
  • Technology seems to be everywhere these days, and if you are like me, I often have my phone with me everywhere I go. For a better sleep, try turning off all your devices at least 3—45 minutes before you go to bed.
  • Try to move your body every day!
  • If you are a napper like me, try to restrict your naps to a maximum of 45 minutes.

I have not always prioritized my sleep, but since starting my PhD program I have made an effort to develop good sleeping habits. I am now very strict about my nighttime routine and incorporating the strategies mentioned in this blog has really made a difference!

Do you have a nighttime routine? I’d love to learn what helps you get a good night’s sleep!

Laura

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References

Gildner TE, Liebert MA, Kowal P, et al. (2014). Associations between sleep duration, sleep quality, and cognitive test performance among older adults from six middle income countries: results from the Study on Global Ageing and Adult Health (SAGE). J Clin Sleep Med, 10, 613–621.

Hirshkowitz M, Whiton K, Albert SM, et al. (2015). National Sleep Foundation’s sleep time duration recommendations: methodology and results summary. Sleep Health, 21, 40–43.

Knutson, KL, et al. (2018). Associations between chronotype, morbidity and mortality in the UK Biobank cohort. Chronobiol Int, 35(8), 1045–1053.

Sabia, S. et al. (2021) Association of sleep duration in middle and old age with incidence of dementia. Nat. Commun., 12, 1–10.

Saint Martin, M. et al. (2012). Does subjective sleep affect cognitive function in healthy elderly subjects? The Proof cohort. Sleep. Med, 13, 1146–1152.

Partonen, T. (2015). Chronotype and health outcomes. Curr Sleep Med Rep, 1(4), 205–211.

Yaffe, K., Nettiksimmons, J., & Byers, A. (2014). Sleep disturbances and risk of dementia among older veterans. Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, 10, DOI:10.1016/j.jalz.2014.05.969

Tai, X., Chen, C., Manoar, S., & Husain, M. (2022). Impact of sleep duration on executive function and brain structure. Communications Biology, 5. https://doi.org/10.1038/s42003-022-03123-3

Media release 2: DAI rationale for service changes

DAI e-News April 2022
Detailed explanation of service changes

Dear colleagues and friends,

Further to our recent announcement of the changes in DAI, we wish to share the following more detailed explanation of why it became necessary to suspend so many of the DAI member services as well provide some history for context. Looking back has been essential to moving forward.

Most reading this will know that Dementia Alliance International (DAI) was founded on 1 January 2014 by eight people diagnosed with dementia, all with a dream to provide support for other people living with dementia, and to advocate for others with dementia to live more positively, for better services and support, and for our rights.

The eight founding members hailed from three countries with a collective dream for an international organization being a group ‘of, by and for’ people with dementia.

Exemplifying the nothing about us without us philosophy as the founders had all recognized that people with dementia did not truly have a voice having had it taken away by the stigma and discrimination of dementia. Their dream was to advocate for the autonomy and rights of all people living with dementia.

People with dementia have a human right to self-determination and full inclusion in society (not to be isolated, discriminated against, or segregated from society).

Peer to peer support for people with dementia

The founders learned there was no organization with this shared belief among thousands of organizations whose leadership and missions were all about research for a cure or supporting the carer and that those organizations rarely included persons living with dementia in their governing ranks or in their mission statements. It’s as if people with dementia didn’t exist, except when used as fund raising tools.

Even support groups for persons living with dementia required the participation of a family member or care partner and the conversation was dominated by the one without dementia. We knew persons living with dementia needed and deserved a safe and private place to participate in peer-to-peer support.

We knew this methodology was valid as Alcoholics Anonymous had already proven it works. Many had already been meeting online to support each other and it is that camaraderie and self-determination and the growth of a collective global advocacy that gave birth to Dementia Alliance International, an organization founded and led only by and for persons living with dementia across the globe.

For many years, people with dementia had been promised funding for a global group, as far back as the late 1990’s, when Christine Bryden and others founded the Dementia Advocacy Support Network International (DASNI). The late Dr. Richard Taylor had also been promised the same thing many times but as it was never forthcoming, hence the founders of DAI decided to set it up, as well as fund it and run it themselves.

DAI has always had to fight hard for anyone to support us, and then, it has never been more than piece-meal funding. Typically, just enough to set boundaries on our advocacy.

The Board and many of our members believe the best work that DAI has done is to provide peer to peer support, which in turn has empowered more newly diagnosed people to get back to living.

DAI was using Zoom long before the COVID pandemic; it started the first online peer to peer support group for people with dementia in the world, which continues today, and DAI still hosts the only living alone peer to peer support groups that we know of, in the world.

DAI’s global support for, and advocacy and representation of people living with dementia has been significant and ground-breaking, and we know we have much to be proud of.

Our members continue to report that our peer-to-peer support groups are an amazing, life-giving steppingstone for people more newly diagnosed with dementia to ‘get back to living’. This is truly powerful work, that even in times of covid, no other organisations yet do.

However, it appears to DAI that many people without dementia do not fully support our organisation. We base these assumptions on the actions and attitudes of others, and because so few people or organisations support DAI, promote DAI, partner with DAI, or donate to DAI.

In fact, pre covid, when zoom webinars being hosted by other organisations were rare, DAI tried a few times to add a small registration fee to their monthly webinars to help with financial sustainability.

Shockingly, a great many people in paid employment, including staff members of dementia charities, falsely registered as DAI members, to avoid the fee.

The other truth that DAI has had to face, especially members of DAI who are not active advocates with their national charities, is they are still fighting for Article 19 of the CRPD.

Inclusion is too often still missing, and it continues to be ‘about us, without us’.

For these and a numer of other reasons as outlined below, DAI had no choice but to reassess its future direction and services.

International dementia advocacy requires significant leadership, statesmanship and organizational skills as well as public speaking skills and knowledge of not only of the lived experience of dementia, but of policy, human rights and so on. Just being diagnosed with dementia, doesn’t provide these skills and thus there is a limited pool of talent to draw on. DAI has found it difficult to retain people in our membership with a passion for advocacy, who have the required skills and are willing to serve DAI, as they are often approached by the charities, researchers, and other organisations to get involved with their work.

This leaves DAI ‘dry’ and returning to square one repeatedly having to find and train new members to do the work. Even when DAI is actively working with others, it is mostly without renumeration to, or recognition of DAI or its membership.

DAI has faced some unique and difficult challenges 

Firstly, all DAI members live with dementia, and whilst they are often willing to volunteer, they also have significant time and financial constraints as they tackle the daily challenges of living with dementia, and the lack of post diagnostic support. Beyond that, DAI has faced many other significant difficulties.

  1. Other charities, organisations, researchers, start-ups, and individuals are constantly inviting DAI members to work with their organisations, which then means DAI has had difficulty retaining members to support their own organisation.
  2. Furthermore, other organisations usually have significantly more funding than DAI, and are therefore able to provide paid staff to support their volunteer self-advocates, making it even more difficult for DAI to retain active members.
  3. DAI has increasingly been asked over the last 8+ years to support researchers, individuals, and organisations with their grant applications, to promote their projects and surveys, but then not appropriately included in the work.
    • DAI is very rarely funded in the projects,
    • DAI is rarely included in the activities or focus groups projects, and instead of working with DAI, researchers go to the national dementia charities and their dementia working or advisory groups.
    • DAI is rarely referred to as an organisation for people with dementia, in the research outcomes, yet
    • DAI is expected to promote the surveys and other project activities.
  4. Since mid 2015, DAI has been thrilled to have the support and funding of strategic partners and other donations to fund its operations.
    • In mid 2015, ADI became DAI’s first strategic partner
    • In November 2018, Dementia Australia became a major donor; the following year, DA became our second strategic partner
    • Both partners currently provide $20,000 USD per year
    • DAI receives very few other donations.
  5. Clearly however, this means we have insufficient strategic partners and donors to remain sustainable in our current format, let alone have access to financial resources that can be used to hire paid staff to support our organisation.
  6. The lack of adequate funding has always been a major issue limiting available technologies, marketing materials and staffing.
    • Therefore DAI has had no choice but to modify its structure and services.
  7. We have been well supported by our non-member volunteers, but it is becoming increasingly difficult to find volunteer staff who have the time, or that don’t have an unconscious biases impacting their ability to work within the ‘nothing about us, without us’ philosophy, or hidden personal agendas which we do not fit with DAI’s vision or mission.
  8. Inclusion of DAI members by individuals and other organisations continues to be tokenistic at best.
  9. Recognition of the disabilities caused by dementia and adequate reasonable adjustments and disability support are not provided making it difficult or impossible for persons living with dementia to participate fully or equally.
  10. Finally, whilst others appear publicly to support DAI, most do not want a truly autonomous voice in this very crowded space, notably, when we differ to the goals of other organisations.

Working with DAI in the future

Moving forward, DAI will fulfil any current commitments made to research projects or other projects and organisations. It will also continue to work with the WHO and UN, as it has over the last many years.

However, it will need to limit its involvement with individuals and other organisations in the future.

It is obvious that people with dementia continue to be the only people in the dementia sector who are not paid for their labour and expertise, and where others who get to meet our members, then want them to work with and promote their organisations, but with little or no reciprocity to DAI.

Therefore, DAI will soon release a policy for how individuals, start-ups, researchers, and all others will be able work with our organisation and our members, so that it is fair and equitable for everyone.

Although this has partially been outlined in the documents, Value to a sponsor partner or donor and Opportunities for researchers, partners sponsors and associates, both updated in 2018, it is apparent they are unclear.

Thank you

The board sincerely hopes this rationalization and suspension of four services is temporary, and that some will be reactivated in the future, and we thank you for supporting us as we streamline our operations to ensure our core activity, which is peer to peer member support is sustainable.

DAI’s incredible work and willingness to support and work with others, without reciprocity has been a major contributor to the need to make these very difficult decisions. Hence, we really hope that moving forward, the many organisations and individuals DAI has so actively promoted and supported for the last eight+ years, will consider reciprocating and partnering with us in the future.

“Nothing about us, without us.”

Cheryl Day
Acting Chair
On behalf of the Board of Directors
Dementia Alliance International (DAI)

DONATE TO OR PARTNER WITH DAI TODAY

Reminder: Effective immediately

DAI will continue to provide the following services:

  1. Free membership for people living with any type of dementia.
  2. Weekly Peer-to-peer support groups for DAI members (no cost to members).
  3. Provide member and data base communications via regular blogs on the website, not through e-news using MailChimp.
  4. Retain its charitable 501c3 status in the USA to allow for donations to continue.
  5. Retain its CPA to perform the annual financial reporting and required IRS related paperwork.
  6. Retain the award-winning DAI YouTube channel.
  7. Retain the DAI website, which is currently being updated.
  8. Retain the DAI branded Facebook, LinkedIn and Twitter social media pages.
  9. Finally, the Environmental Design Special Interest Group (ED-SiG) will continue to be led by Emily Ong, from Singapore

DAI Human Rights Advocacy

The global human rights work we currently do will continue, although DAI will need to fund an external partner or expert for this work to continue. Kate Swaffer will continue in her role as interim human rights advisor until the AGM in June, while the board decides on its long-term future direction. DAI will continue to work with the WHO and UN, will retain its ECOSOC status at the United Nations, and its Observer status with the International Disability Alliance.

DAI is suspending the following services until further notice:

  1. Monthly “Meeting Of the Minds” Webinars
  2. Monthly virtual Cafe Le Brain
  3. Twice monthly Brain Health Hub Zoom Meetings
  4. The annual WRAD event

Furthermore, to reduce costs, DAI will cease the monthly newsletter and other mailings, and blogs on the DAI website will be used to communicate to members instead. We hope the increased activity on our social media pages will fill any potential communication gaps.

Please note therefore, that all future official and other communications will be through the website as a blog; this mean you need you to subscribe to them to receive our news and any other communications. 

Note: we sometimes use voice recognition software for correspondence​ and newsletters; ​​hence there may be some grammatical errors or spelling mistakes, for which we thank you for your understanding.

Media Release: DAI to suspend some free services

Dear friends and colleagues,

The DAI Board met at a special board meeting on March 25/26, 2022 as we saw the need for a thorough internal review of our services.  This was brought about by the identified strained resources we have, to support the current operations.

We certainly appreciate the unusual world we are living in at the moment and DAI, like many other Not For Profit and Charitable organisations are competing for volunteers and funding to remain viable and sustainable.

We assure you that the DAI Mission and Values were at the forefront of our thinking; and we value the volunteers and supporters around the world who continue to support us; thank you.

This media release is to advise you that following the review, the Board has made the very difficult, but necessary decision to reduce the current services provided by DAI until further review. Our hope, is that we can build up our volunteer base once again and continue to provide amazing resources to ensure “Nothing about us, without us.”

The priority of the special board meeting was to discuss the following two options about the services, sustainability, and future of DAI.

OPTION 1:

  • Wind up the affairs of DAI, and
  • Cancel charity status and disperse funds.

OPTION 2:

  • Revert to peer-to-peer support groups only,
  • Drop all other work, including e-newsletters, webinars, cafe le brain, and brain health hub meetings,
  • Replace newsletters with more activity on social media, and
  • Stop or scale back blog posts.

Following this meeting, the board has unanimously made the following decisions.

Effective immediately, DAI will continue to provide the following services:

  1. Free membership for people living with any type of dementia.
  2. Weekly Peer-to-peer support groups for DAI members (no cost to members).
  3. Provide member and data base communications via regular blogs on the website, rather than through e-news using MailChimp.
  4. Retain its charitable 501c3 status in the USA to allow for donations to continue.
  5. Retain its registered accountant to perform the annual financial reporting and required IRS related paperwork.
  6. Retain the award-winning DAI YouTube channel.
  7. Retain the DAI website, which is currently being updated.
  8. Retain the DAI branded Facebook, LinkedIn, and Twitter social media pages.
  9. Finally, the Environmental Design Special Interest Group (ED-SiG) will continue to be led by Emily Ong, from Singapore

Effective immediately, DAI is suspending the following services until further notice:

  1. Monthly “Meeting Of the Minds” Webinars.
  2. Monthly Cafe Le Brain.
  3. Twice monthly Brain Health Hub Zoom Meetings.
  4. Annual World Rocks Against Dementia (WRAD) event.

We looked at a number of ways to work ‘smarter’ so we can continue to provide the same level of communications, but in a different way and came up with these options.

To reduce costs, DAI will cease the monthly newsletter and other mailings, which will be replaced entirely by blogs on the DAI website to communicate to everyone, including members. We hope increased activity on DAI social media will help fill any potential communication gaps.

Please note therefore, that all future official e-news and other communications will be through the website as a blog, which will mean you need to subscribe to them to receive our news and other communications.

The global human rights work we currently do will continue, although DAI will need to fund an external partner or expert for this work to continue. Kate Swaffer will continue in her role as interim human rights advisor until the AGM in June 2022, while the board decides on its long-term future direction. DAI will also retain its ECOSOC status at the United Nations, and Observer status with the International Disability Alliance.

Detailed below is a brief explanation of why DAI has been forced to face these changes, due primarily to the following set of unique and difficult challenges.

  1. DAI members who all live with dementia are often willing to volunteer, but also have significant time constraints as they are also tackle tackling the daily challenges of living with dementia.
  2. Significant demand on volunteers around the world.
  3. DAI has been asked and had the opportunity many times over the last 8 years to support researchers, individuals, and organisations with their grant applications; we are working on being appropriately included in the work and funded in the projects.

Since mid 2015, DAI has depended on strategic partners and donations to fund its operations; before that, board members self funded it.

We are very grateful that in mid 2015, ADI became DAI’s first strategic partner. In November 2018, Dementia Australia became a major donor; the following year, DA became our second strategic partner.

It takes time to build up strategic partners and donors to remain sustainable in our current format, and to have paid staff and financial resources that can be used to hire additional staff to support our organisation.

Unfortunately, the lack of adequate funding has always been a major issue limiting available technologies, marketing materials and staffing.

The board sincerely hopes that these changes are temporary, and that some of our services will be reactivated in the future.

DAI continues to be an amazing, life-giving organisation that provides a steppingstone for people more newly diagnosed with dementia to ‘get back to living’, which is truly powerful work, and we will continue to do this.

We thank you in anticipation of your support us as we streamline our operations to ensure our core activity continues, which is to ensure peer to peer member support is always sustainable.

Finally, we will send another email later this week, with a more detailed explanation of why these changes have had to be made at this time.

“Nothing about us, without us.”

Yours sincerely,

Cheryl and Alister

Cheryl Day/Alister Robertson
Acting Chair/Chair (on leave)
On behalf of the Board of Directors
Dementia Alliance International

Young Onset Dementia, by Rose Ong

Young Onset Dementia

By Rose Ong 2022. Rose is an active  member and advocate who hosts a DAI Canadian Social Peer to Peer support gor up, and lives in Canada. Thank you Rose,

If you’re looking for a Ph.D.  here, you wouldn’t find one. After surviving a major brain haemorrhage myself at 35 years of age, (while raising a 4-year-old and a new-born infant,) I certainly had some challenges ahead of me. I could not put more than 3 words together for a sentence (I could, however, swear like a sailor whenever it got to be too much for me to handle. Funny how that worked out!). I had lost a portion of my memory, had problems with eye focus and a speech impediment.

I did, however, improve enough to return to college a few years later and achieved my accounting certification. No CCA after my name, but employable. I worked with accounts receivable for 6 years.

Fifteen years after the brain haemorrhage, at 50, I found out I had breast cancer which required 2 surgeries and 6 sessions of chemo over a 3-month period. My oncologist told me I “could” experience some “brain fog” after my chemo, but that it should go away after a bit of time. (Really?) Knowing what I know now about “chemo brain” and dementia, I think I would have opted to skip the chemo altogether and take my chances with the cancer. Why? Because now I am dealing with Young Onset Dementia, and nobody knows how to treat YOD.

No one seems to know what causes Young Onset Dementia or YOD, but I‘d like to throw some ideas out on the table, just for the heck of it.

Through my experiences with health challenges, I have come to see connections between personal health and the compromised world we live in.  Never, in the course of human history has mankind contributed more pollutants and toxins, negatively impacting things like climate change, air pollution, the deterioration of coral reefs and our forests, the quality of our fresh water and oceans to the point that wildlife are dying off into extinction, not to mention what we eat, inhale or use on our skin. Is it any wonder that instances of diseases such a YOD and Alzheimer’s are rising exponentially? Perhaps when we choose to explore the deterioration of our environment, we may begin to see the connections with health issues impacting us at a younger age, such as YOD.

My own experience makes me wonder if we value conquering cancer over its affect on our brain cells. With more emphasis on a holistic approach to health care, is it possible to turn this around?

Did you know that there are over 50 million confirmed cases of dementia worldwide, compared to the 46 million confirmed cases of COVID19 worldwide? If you were to add the undiagnosed cases of both COVID19 and Young Onset Dementia to those numbers, respectfully, the outcome would be tragic. The percentage of COVID19 deaths is relatively very low when compared to the death rate for Dementia at 100%. No one recovers from dementia. Yet.

So why are we not looking more for the causes of dementia than resorting to experimental drugs and eventually filling up our LTC facilities with more and more dementia patients?

This is my debut article of a 10-part series of articles I will be writing about Young Onset Dementia or YOD and how it affects myself and others. I hope you will join me in this journey where we will build some understanding and hope for the future of YOD and ultimately for Alzheimer’s and other mind-altering diseases. Let’s start this conversation with a whole lot of honesty and a lot less bull, because I know a lot of people who are running out of time… and brain cells.

Walk with me.

“In a dark place, we find ourselves, and a little more knowledge lights our way” – Yoda