All posts by DementiaAlliance

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)

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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      

Research blog: Challenges of communicating as part of living with dementia

We are delighted to publish the following article written by Dr Jacki Liddle, on the challenges of communication expereinced by people living with many types or causes of dementia.

Thank  you Jacki.

Challenges of communicating as part of living with dementia

By Dr Jacki Liddle, March 2022

While people think of memory loss when they think about dementia, many do not realise that changes to communication are common for people living with dementia. Because many different areas of the brain are involved in communication, the changes people experience with their communication can vary widely.

Changes can range from having trouble finding the right word when communicating, having difficulty keeping up when lots of people are talking, to profound loss of ability to understand and/or express oneself through speech and language. Some people living with dementia experience primary progressive aphasia, in which communication changes may be their main and most challenging symptom. It is recommended to see a speech language pathologist/ speech therapist if communication is creating difficulties.

What helps?

Because communication is so vital in daily life, there has been increased attention in ways of supporting communication. At present, there are no “one size fits all” treatments that work for everyone. There is some evidence for,

  • Speech-language pathologist interventions in people with moderate-severe dementia including cognitive stimulation programs [1]
  • Learning alternative communication strategies – ranging from gestures, images and more high-tech devices
  • Training together with communication partners [2]
  • Including communication training of family and staff care partners as part of other education [3]. This is sometimes to reduce unhelpful patterns of communication from helpers called Elderspeak.

Current research is also exploring supporting communication as part of reablement approaches. More information is available here.

Getting back to basics is also important and people share that these approaches can also help:

  • Setting up so the environment is not too noisy or distracting
  • Choosing a time so things aren’t rushed or stressed
  • Working together to figure out the message

What about technology?

Technology is providing to be a useful way for many people to support their continued communication. This can range from:

  • Using mainstream technology to communicate at a time that suits you and in a way that lets you check and refer back to it later (eg email or social media)
  • Using picture-based reminders or ways to communicate something when communication is challenging
  • Finding a format that suits you in communicating (video conferencing, listening and reading audio books at the same time, sharing pictures rather than long messages)
  • -Specialised technology like AAC devices (which stands for Augmentative and Alternative Communication) [4,5]. While people might think of Stephen Hawking, AAC can also include picture cards and communication books. At the moment, setting up an AAC system and learning to use it can take a lot of effort. People hope that as technology gets “smarter” and is able to be personalised more, these systems will be easier to use.

Here are some other resources and information to help with communication changes

Brief introductory resources (videos and brochures) about communication and technology are now up and shared here: https://itee.uq.edu.au/project/florence-project/community

Information: Prof Alison Wray has great videos on YouTube: https://www.youtube.com/watch?v=6uu63PqWGaU

A free education module for care partners was developed by researchers at the University of Queensland and is shared on YouTube. (MESSAGE and RECAPS) https://www.youtube.com/channel/UCIUtBy2icw38Hxk0yPufFBw

You may also want to contact your local

References from the summary

[1] Swan, K., Hopper, M., Wenke, R., Jackson, C., Till, T., & Conway, E. (2018). Speech-Language Pathologist Interventions for Communication in Moderate–Severe Dementia: A Systematic Review. American Journal of Speech-Language Pathology, 27(2), 836–852. https://doi.org/10.1044/2017_AJSLP-17-0043

[2] Rogalski EJ, Saxon M, McKenna H, Wieneke C, Rademaker A, Corden ME, Borio K, Mesulam MM, Khayum B.Communication Bridge (2016). A pilot feasibility study of Internet-based speech-language therapy for individuals with progressive aphasia.

Alzheimers Dement (N Y). 2016 Nov; 2(4):213-221 https://doi.org/10.1016/j.trci.2016.08.005

[3] Conway, E. R., & Chenery, H. J. (2016). Evaluating the MESSAGE Communication Strategies in Dementia training for use with community‐based aged care staff working with people with dementia: a controlled pretest–post‐test study. Journal of Clinical Nursing25(7-8), 1145-1155.

[4] Bourgeois, M., Fried-Oken, M., & Rowland, C. (2018, 38-12 07:38:49). AAC Strategies and Tools for Persons With Dementia (world) [Review-article]. The ASHA Leader; American Speech-Language-Hearing Association. https://doi.org/10.1044/leader.FTR1.15032010.8

[5] May, A. A., Dada, S., & Murray, J. (2019). Review of AAC interventions in persons with dementia. International Journal of Language & Communication Disorders, 54(6), 857–874. https://doi.org/10.1111/1460-6984.12491

 

 

 

International Women’s Day 2022

Today is International Women’s Day, and for the 2022 Dementia Alliance International blog, our focus is on the reality that dementia affects more women and girls than men and boys. The International Women’s Day #IWD2022 campaign theme is #BreakTheBias

This year, DAI joins the Global Alliance For the Rights of Older People #AgeWithRights campagin rally, with an event being on March 15/16, 2022. Please join us, to help #BreakTheBias. Follow this link for details and to register.

Woman, girls and dementia #IWD2022

By Kate Swaffer, DAI co-founder, 8 March 2022

  • Imagine a gender equal world.
  • A world free of bias, stereotypes, and discrimination.
  • A world that is diverse, equitable, and inclusive.
  • A world where difference is valued and celebrated.
  • Together we can forge women’s equality.
  • Collectively we can all #BreakTheBias.

On the International Women’s Day Website, we are asked to imagine a gender equal world. A world free of bias, stereotypes and discrimination. A world that’s diverse, equitable, and inclusive. A world where difference is valued and celebrated. Together we can forge women’s equality. Collectively we can all #BreakTheBias.

  • Celebrate women’s achievement.
  • Raise awareness against bias.
  • Take action for equality.

According to the World Health Organisation, there are an estimated 55 million people living with dementia globally, there are 10 million new cases each year, and dementia is currently the seventh leading cause of death among all diseases and one of the major causes of disability and dependency among older people globally.

Dementia also affects woman and girls, disproportionately to men and boys. In Australia (2020), it was listed as the second leading cause of death nationally for men and women, and the leading cause of death of women. In Canada, about two-thirds of Canadian living with dementia are women. According to Dr Kiely in 2018, women with dementia outnumber men 2 to 1 globally, and brain scans tell us that the rate at which brain cells are dying in the brain is faster in women than in men. In the US, it was also found that two-thirds of clinically diagnosed cases of dementia and AD are women, according to U.S. most European reports, and although it appears complex, female versus male longevity it not the only reason for this disparity.

A 2015 report by Alzheimer’s Research UK, “Woman and dementia: A Marginalised Majority”, it was the 5th leading cause of death, women more likely to have Alzheimer’s disease or another form of dementia, and “Between 60 and 70% of all unpaid dementia carers are women.”

In an Alzheimer’s Society UK blog written by Sherena Corfield in 2018 about women in rural areas demanding more action, she wrote, “Women are disproportionately affected by dementia than men. It’s the biggest killer of women in the UK. Despite this, it remains a hugely misunderstood health condition. This is particularly apparent for women in rural parts of the world, who often face the most extreme stigma due to a lack of awareness.”

The Australian Royal Commission into Aged Care found, found that apart from all of the other forms of violence, abuse and neglect in residential aged care in Australia, they estimated that 50 people every single week are being sexually violated; most of them are women with dementia.

As DAI seeks to represents the more than 55 million people estimated to be living with dementia and those people receiving a new diagnosis of dementia every 3 seconds, and works hard to empower people to get back to living, rather than go home and get their end of life affairs in order, as most people are advised to do. We also want to keep raising the issue that there is gender bias, and that dementia affects more women and girls than men.

We highlight again what we wrote on our blog for IWD2021:

Everyone impacted by dementia receives little if any health care, including a lack of access to a diagnosis, nor appropriate support to live with dementia once diagnosed. Older women, especially widows, can be exposed to what has been termed a ‘triple jeopardy’ discriminated against as a result of their age, sex and condition (carer or diagnosed with dementia).The stigma surrounding dementia exists universally, with women more likely to be stigmatised in this way.  Extreme forms of discrimination can lead to women with the condition facing abuse, violence and even death.

As a female with dementia, I now not only experience continuing discrimination and stigma due to being female but the added stigma and discrimination due to a valid diagnosis of dementia, as well as ageism, as dementia is still seen as an older person’s condition.

If I thought I was invisible as a woman before, having dementia as a woman is like wearing a Harry Potter Invisibility Cloak!

By Kate Swaffer © 8 March 2022 #IWD2022
Co-founder, Dementia Alliance International

World Day of Social Justice 2022

February 20 is World Day of Social Justice, a commemorative event that has been held since its first proclamation by the United Nations General Assembly in 2007. The underlying principle is to promote gender equality and social justice for all as stated in Our Common Agenda.

Social justice is closely aligned with human rights and is about fairness – ensuring equality for all people.

The major social injustices affecting the world today:

  • Racial Inequality: Systemic racism in societies around the world has resulted in significant inequalities: job opportunities, housing, healthcare, and legal representation are all affected.
  • Gender Inequality: Discrimination based on gender affects education, jobs, and healthcare. Women and girls are also vulnerable to human trafficking and intimate partner violence.
  • LGBT Inequality: The lesbian, gay, bisexual and transgender communities are uniquely vulnerable to violence and discrimination. Discrimination impacts legal protections, marriage equality, healthcare, and job opportunities.
  • Economic Inequality: According to the World Bank, over 700 million people live on less than $1.90 per day. That’s the line for “extreme poverty”. In the wake of the COVID-19 pandemic, the World Bank estimates that between 40-60 million could slip below the poverty line.
  • Unequal Access to Education: While education is the key to unlocking better job and income opportunities, accessing good education is very challenging for certain populations. In areas like south-eastern Asia and sub-Saharan Africa, wide disparities still exist.
  • Climate Injustice: Those who are disproportionately impacted by climate change are countries which have the lowest carbon-emission.

The theme of World Day of Social Justice 2022 is Achieving Social Justice through Formal Employment, and it focuses on employment resources and opportunities as a prerequisite in reducing poverty and inequality.

At Dementia Alliance International #DAI, we observe World Day of Social Justice because social injustice is rampant when it comes to people living with dementia and their families. As a global organization, DAI has been raising its voice against social injustice and advocating #HumanRightsForAll and United Nations Convention on the Rights of Person with Disabilities #CRPD.

There is a strong biased assumption that post diagnosis employment is not possible for people with cognitive impairments, even those of us with mild dementia. In the workplace, individuals are seen as incompetent workers and regarded as a liability rather than an asset to the organization.

One of the harmful myths of dementia, is an automatic assumption of incapacity which is made early and without any kind of evidence-based assessment of the person’s capacity, knowledge, and ability for continued employment in a specific role. As a result, it is not unusual for these individuals to be made redundant or dismissed for incompetence.

On contrary, there are many individuals and advocates living with dementia who have taken up voluntary or part-time work when provided with accessibility to resources and appropriate support. These examples clearly demonstrated that people living with dementia had the capacity to lead and perform, knowledge to share and ability to remain in the workforce for a duration of time after their diagnosis. DAI is a living proof of such example where people living with dementia lead and manage the organization on day-to-day basis and provide support services to their peers with support from few volunteers.

Continuing employment after post-diagnosis is essential and beneficial because the occupational role not only provide financial satisfaction but more importantly it helps to reduce the risk of depression, prevent loss of identity and self-worth, and loss of social networks. Hence, individuals living with mild dementia must be supported in the workplace through reasonable adjustments and accommodation while they adjust to their diagnosis and make plans to retire when they feel it is time to do so. Continued post-diagnostic employment can be realized when i) healthcare professionals stop ‘Prescribed Disengagement’; ii) employers see it is their responsibility to support workers diagnosed with cognitive impairments to remain in the workforce; and iii) the workplace has an inclusive culture that respects diverse range of ability.

You can read more about “Dementia and Employment: Give us a chance to remain employed” published on the DAI blog on February 13 2021.

REMINDERS OF UPCOMING EVENTS:

1. The 2022 DAI Global Rally Summit, Age With Rights! DAI is hosting a Live Facebook event as part of this rally, which you can join  us here. Read more information about it on our blog here.

Registration is not required; simply join us on the DAI Facebook page for this live event at the times listed below.

Thursday, 3 Mar 2022

  • 2:00 pm PST
  • 3:00 pm MST
  • 4:00 pm CST
  • 5:00 pm EST
  • 10:00 pm GMT

Friday, 4 Mar 2022

  • 6:00 am SGT/AWST
  • 8:00 am AEST
  • 8:30 am ACDT
  • 9:00 am AEDT
  • 12:00 noon NZDT

2. The Global Alliance for the Rights of Older Persons is also hosting a webinar on the 3rd March from 10:00-11:00 ET / 16:00-17:00 CET. There will be interpretation into Spanish, and is hosted by the IFA, and supported by the Soroptimist International. The Summit will showcase the campaigning that is taking place around the world for older people’s rights as part of the Age With Rights Global Rally ahead of the 12th UN Open-Ended Working Group on Ageing session. Click here to register. Click here to download the flyer.

3. Save the date for the next DAI “Meeting Of The Minds” Webinar:  My Life, My Goals: a self-help guide for people living with dementia, by Professor Linda Clare. Registration link and other details coming soon.

4. The 2022 Regional Forum on Sustainable Development for the UNECE region. The deadline for registrations is 18 March 2022, 23:59 (CET). Sessions opened for registration are:

  • 6-7 April 2022: Hybrid plenary sessions of the Regional Forum.
  • 6-7 April 2022: Hybrid peer learning sessions clustered around five SDGs: SDG 4 – Quality education, SDG 5 – Gender Equality, SDG 14 – Life below water, SDG 15 – Life on land, SDG 17 – Partnerships for the goals.

SUPPORT PEOPLE WITH DEMENTIA

DONATE TO OR PARTNER WITH DAI TODAY

 

DAI Facebook event: Age With Rights 2022 Campaign

The DAI ‘Age With Rights’ Global Rally 2022

There are an estimated 55 million people diagnosed with dementia globally, and estimated 42 million who do not have a formal diagnosis. Dementia is also a major cause of disability and dependence globally, and effects women and girls more than men. In Australia, it is the leading cause of death for women.

Women also make up 2/3 of dementia care supporters and more than 70% in lower and middle-income countries. Women carers compared to male carers, are more often unemployed due to their unpaid role; girls who are carers also often miss out on education.

Older women, especially widows, can be exposed to what has been termed a ‘triple jeopardy’ discriminated against as a result of their age, sex and condition (carer or diagnosed with dementia).

This is partly why DAI is joining the Global Alliance for the Rights of Older People Age with Rights rally being held in advance of International Women’s Day this year.

This is partly why DAI joined the Global Alliance for the Rights of Older People (GAROP) ‘Age With Rights’ campaign in February 2021 to present a unified, visible presence and amplify the voices of older people and civil society organisations in the virtual 11th session of the UN Open Ended Working Group on Ageing (OEWG11) session held in April 2021.

We hope you will join our panelists Kate Swaffer, Emily Ong and Lyn Rogers for a live Facebook session on ageing with rights.

Registration is not required; simply join us on the DAI Facebook page for this live event at the times listed below.

Thursday, 3 Mar 2022

  • 2:00 pm PST
  • 3:00 pm MST
  • 4:00 pm CST
  • 5:00 pm EST
  • 10:00 pm GMT

Friday, 4 Mar 2022

  • 6:00 am SGT/AWST
  • 8:00 am AEST
  • 8:30 am ACDT
  • 9:00 am AEDT
  • 12:00 noon NZDT

Check for your time here if not listed above.

The slogan was developed in close consultation with GAROP members, including Kate Swaffer, DAI’s co-founder and Human Rights Advisor who is a member of GAROP. The first month of the campaign saw the United Nations Department of Economic and Social Affairs (UNDESA) adopt the campaign’s slogan #AgeWithRights in their social media. The campaign successfully captured the lived experiences of dozens of older people globally and utilised this to boost advocacy both in OEWG11 and at the national level. The campaign continued to grow throughout 2021:

  • More than 70 advocacy videos from older and younger people worldwide posted online and shared by social media
  • “AgeWithRights” rallying cry incorporated into position statements and tweets by civil society organisations and national human rights institutions
  • Dozens of people using the #AgeWithRights” hashtag on their social media profiles
  • Invitations to discuss and showcase the campaign at various human rights forums with growing interest from many in getting involved

Goals of the Global Rally

  • Activate more advocates globally to join the movement by raising awareness of older people’s rights and a new UN convention
  • Mobilise new and existing advocates to advance local, regional, and thematic advocacy activities in support of older people’s rights and a new UN convention
  • Push forward in rallying governments to support the implementation of the Human Rights Council Resolution recommendations (A/HRC/RES/48/3) and the drafting a new UN convention (as proposed at OEWG11)

Themes

The overarching message is the important role that a new UN convention would play in strengthening the protection of older people’s rights and urging governments to support this. Linked to this, you can focus on themes that your organisation or network specialises in or has an interest in. You could choose to focus on the themes for the 12th OEWG session, which include the

  • ‘Right to work and access to the labour market’,
  • ‘Access to justice’, and the new themes of
  • ‘Economic security’ and
  • ‘Contribution of older persons to sustainable development’.

Exploring intersecting discrimination with campaigners from other areas of human rights is strongly encouraged as a way of building allies, diversifying, and reaching new audiences (example, older women, older people with disabilities, older LGBTI+ people, Age-Friendly Cities networks, etc).

Older people around the world face particular challenges in enjoying their human rights. Governments have recognised that this includes, among others, protection against violence, abuse and neglect, the right to food, housing, work, education, and health and care[1]. Older persons clearly face discrimination and negative treatment on the basis of their age[2] and this can be made worse by other forms of discrimination based on gender or disability for example.

There are very few explicit references to older people’s rights in existing international human rights treaties. These treaties do not cover all aspects of older people’s rights and are unclear about how human rights apply in older age[3]. International agreements and policy frameworks dedicated to older people and ageing, such as the Madrid International Plan of Action on Ageing, have also proven to be inadequate and incapable of protecting older people’s rights[4].

The solution we are calling for is to create an international legally-binding ‘UN convention’ on older people’s rights. A new UN convention would provide governments, service providers, businesses, civil society and older people everywhere, with the clarity and guidance we need to build a more equal society for people of all ages and ensure respect for our human rights as we age. It would result in greater accountability for and monitoring of older persons’ rights.

 

 

 

 

 

[1] A/HRC/RES/48/3 – E – A/HRC/RES/48/3 -Desktop (undocs.org)

[2] https://rightsofolderpeople.org/wp-content/uploads/2015/03/In-Our-Own-Words-2015-English.pdf

[3] https://social.un.org/ageing-working-group/documents/eleventh/OHCHR%20HROP%20working%20paper%2022%20Mar%202021.pdf

[4]https://www.ohchr.org/FR/NewsEvents/Pages/DisplayNews.aspx?NewsID=20848&LangID=F