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Watch now: Updates In Precision Medicine and Protocols for Dementia

We are pleased to highlight this #DAI webinar presentation during Dementia Awareness Month, which was a recent discussion style presentation by Dr Nate Bergman was an opportunity to hear about the latest findings in Precision Medicine & Protocols for MCI & Dementia. #WAM2021 #DAM2021 #KnowDementia

Dr Nate Bergman DO, has been passionate about proactive, preventive, and participatory medicine since his days as a research fellow at the NIH. He completed a fellowship in geriatric medicine at the Cleveland Clinic with emphasis on the aging brain and body. Prior to his current position at Kemper Cognitive Wellness, he co-developed the Cleveland Clinic Center for Functional Medicine’s program for cognitive impairment.

When not in the office, he hosts and produces the Evolving Past Alzheimer’s podcast, dances, ponders the mysteries of the universe, but mostly enjoys time with his wife and their five children.

This discussion style presentation will primarily be about the latest findings in Precision Medicine & Protocols for MCI & Dementia. Dr Nate Bergman is absolutely convinced that Alzheimer’s and other brain diseases are generally treatable and reversible. Early translational evidence is supports this belief.

Dr Nate Bergman hosts the Evolving Past Alzheimer’s show, which was was born out of both personal experience and frustration with the current state of affairs in medicine. After a short stint in performance art, several years in spiritual retreat and study he embarked on a career in medicine. Nate opted to become a doctor of osteopathic medicine because of the profession’s acknowledgment of the multidimensional nature of humankind, i.e., physical and spiritual beings.

A great number of DAI members have also been convinced that a lifestyle approach, including with a focus on the arts to a diagnosis of dementia is closest they have to hope, and even if not a cure, it will improve our quality of life. This is also the reason DAI started our Brain Health Hub and twice monthly meetings, many years ago, for members and any others. Please send in questions in advance if you have them.

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A More Inclusive Public Transport System by Emily Ong

 

 

In 2021 we observe World Alzheimer’s Month #WAM also now referred to by many people and organisations as Dementia Awareness Month #DAM and World Dementia Month, by highlighting stories about, or written by our members, who all live with a diagnosis of dementia.

Today, we hear from board member Emily Ong from Singapore has written her second article of her personal experience of public transport in Singapore, which can easily be applied to public transport accessibility for people with dementia globally.  Her first article was about accessibility.

Thank you Emily, for your continued advocacy for all people living with dementia.

A More Inclusive Public Transport System in Singapore

By DAI board member and dementia advocate Mrs. Emily Ong

Image source: Emily Ong

Since the introduction of the Enabling Masterplan (2012-2016) in 2014 and ratification of the UN CRPD in 2013, the Singapore government has put in measures to improve the environmental accessibility and progressive removal of barriers to ensure full and effective participation of people living with disabilities in their social life and development, and one of which is the public transport system.

In 2019, Singapore was awarded The Asia-Pacific Special Recognition Award by the International Association of Public Transport (UITP), an international transit advocacy organization for its efforts in making the public transport system more inclusive.

The two efforts were;

  1. Heart Zones are designated areas for the elderly and visually disabled commuters at MRT stations and bus interchanges, and
  2. [email protected] which provides wheelchairs for the elderly commuters and those with physical difficulties.

Hence, I have been looking forward to the opening of new MRT stations along the Thomson-East Coast Line because it is a direct line from my place to my mum’s place in Woodlands. This would mean that I no longer need to change the MRT line which at times can be a cause of confusion for me because from Bishan to Woodlands is a different floor from Bishan to Marina Bay. We decided to take from Upper Thomas MRT station to Springleaf MRT station to have our breakfast on a Saturday morning.

Unfortunately, the second level of the escalator to the gantry area has this flashing light reflection on the escalator steps that are rushing towards you. It is like everything is moving but in opposite directions, making it hard to judge the steps and creating a very discomforting visual experience for me.

This can be potentially dangerous for people with photosensitive epilepsy as it might trigger a seizure if the escalator is moving fast during normal busy hours. It was the first thing that I informed the officer when I saw SMRT people inside the train. I am happy that my concern is heard and taken seriously.

 

This can be potentially dangerous for people with photosensitive epilepsy as it might trigger a seizure if the escalator is moving fast during normal busy hours. It was the first thing that I informed the officer when I saw SMRT people inside the train. I am happy that my concern is heard and taken seriously.

I am very pleased with the overall experience. The wayfinding signages are prominent positioned and big enough to read from a distance. Color contrast is heavily emphasized throughout from signages to platform seats.

 

And with the recent initiative – “May I have a seat please” lanyard & card, in April this year, which aim is to make rides more comfortable for those with invisible medical conditions such as have issues in maintaining their balance where there is jerking along the ride or with chronic pain arthritis are much applauded.

Singapore has come a long way in becoming more inclusive in the public transport system. As a consumer of public transport services and a dementia advocate, I would say, the application of the Universal Design concepts and principles has produced solutions that are functional, usable, and intuitive.

Another big contributing factor is the effort put in to collect feedback from commuters and the public engagement exercise where the public can share their views on the Land Transport Master Plan for 2040 and beyond. I hope that other mainstreaming accessibility issues will too have more and more participatory spaces to enable people with disabilities either born or acquired, visible or invisible, to have their voice heard and influence decision-making.

Please donate to DAI today Donate

By donating, you will ensure we can continue our work supporting people diagnosed with dementia, our families and the broader dementa community of researchers and professionals.

Seven years of DAI advocacy by Amy Shives

On January 1, 2021, DAI turned 7! We were delighted to host a virtual cafe to celebrate our 7th birthday, and had a number of planned and impromptu speakers. Amy Shives, one of our co-founding members, spoke about our seven years, from her perspective as a co founder and long time dementia-advocate.

We are thrilled to share it today, as part of our Dementia Awareness Month series of (almost daily) blogs, to continue to highlight the voices of poeople with dementia, as well as DAI’s critical role in local, national and global advocacy.

In this video, she talks about the value of the DAI Peer to Peer suport groups, and how important these groups have been in normalising the experience of dementia. Any also says, that she believes being with others living with dementia has  saved her life.

Thank you Amy!

Since you’re here, please donate to DAI today

By donating, you will ensure we can continue our work supporting people diagnosed with dementia, our families and the broader dementa community of researchers and professionals.

Musings for Dementia Awareness Month by Dennis Frost

DAI member, Dennis Frost has shared some wonderful musings with us for Dementia Awareness Month, inspired by the recent poem by another DAI member Thomas Ong and the works of many of our kindred living with dementia.  He wanted to share a couple of works that give him motivation and inspiration to speak up.

The first is a work by William Blake from 1783. It is a poem intended for a dramatic piece of King Edward the Fourth. I will often read to myself before I stand to speak publicly and carry it with me for inspiration.

O for a voice like thunder, and a tongue
To drown the throat of war! – When the senses
Are shaken, and the soul is driven to madness
Who can stand? When the souls of the oppressed

Fight in the troubled air that rages, who can stand?
When the whirlwind of fury comes from the
Throne of God, when the frowns of his countenance
Drive the nations together, who can stand?

When Sin claps his broad wings over the battle,
And sails rejoicing in the flood of Death;
When souls are torn to everlasting fire,
And fiends of Hell rejoice upon the stain.

O who can stand? O who hath caused this?
O who can answer at the throne of God?
The Kings and Nobles of the Land have done it!
Hear it not, Heaven, thy Ministers have done it!

The second work is another piece of classical literature. Its from Hamlet –by William Shakespeare circa 1600.  I personally think it’s the most powerful piece that old Bill Spearshaker ever wrote.

I have of late—but wherefore I know not—lost all my mirth, forgone all custom of exercises, and indeed it goes so heavily with my disposition that this goodly frame, the earth, seems to me a sterile promontory; this most excellent canopy, the air—look you, this brave o’erhanging firmament, this majestical roof fretted with golden fire—why, it appears no other thing to me than a foul and pestilent congregation of vapors. What a piece of work is a man! How noble in reason, how infinite in faculty! In form and moving how express and admirable!

In action how like an angel, in apprehension how like a god! The beauty of the world. The paragon of animals. And yet, to me, what is this quintessence of dust? Man delights not me. No, nor woman neither, though by your smiling you seem to say so.Like most people I studied Shakespeare at school, but his words had no meaning then, it was only when I heard them rendered in the musical Hair, did they stand out. Now many years later e his words summarise so much of what it is like living with dementia.

Finally a more recent poem by Max Ehrmann from 1927. It became an anthem of my generation and again inspires me.

Desiderata

Go placidly amid the noise and haste, and remember what peace there may be in silence. As far as possible without surrender
be on good terms with all persons.
Speak your truth quietly and clearly;
and listen to others,
even the dull and the ignorant;
they too have their story.

Avoid loud and aggressive persons,
they are vexations to the spirit.
If you compare yourself with others,
you may become vain and bitter;
for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.

Keep interested in your own career, however humble;
it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs;
for the world is full of trickery.
But let this not blind you to what virtue there is;
many persons strive for high ideals;
and everywhere life is full of heroism.

Be yourself.
Especially, do not feign affection.
Neither be cynical about love;
for in the face of all aridity and disenchantment
it is as perennial as the grass.

Take kindly the counsel of the years,
gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune.
But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline,
be gentle with yourself.

You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.

Therefore be at peace with God,
whatever you conceive Him to be,
and whatever your labors and aspirations,
in the noisy confusion of life keep peace with your soul.

With all its sham, drudgery, and broken dreams,
it is still a beautiful world.
Be cheerful.
Strive to be happy.

And finally, words from Mr Spock…

Live Well and Prosper

 

Since you’re here DONATE TODAY

By donating, you will ensure we can continue our work supporting people diagnosed with dementia, our families and the broader dementa community of researchers and professionals.

How people with disabilities due to dementia are marginalised

We continue to share written or video stories, poems, and other stories of interst from our members, as part of o ur World Alzheimer’s Month – Dementia wareness Month activities. Today we are sharing a presentation made by DAI Board member Phyllis Fehr.

On June 8, Phyllis provided a statement for the United Nations Online Regional Consultations with people with disabilities and their representative organizations in the Caribbean and North America;

“From isolation, invisibility and segregation into inclusion of people with disabilities in the community. Identifying and overcoming barriers to the successful process of deinstitutionalization”

How people with disabilities isolated, marginalized, excluded, segregated or institutionalized in the Caribbean and in North America regions? How can these practices end?

Phyllis Fehr

As a woman living with Young Onset Dementia, I sat back with dread, fear and utter disbelief as I watched what was happening in the long-term care sector for people living with dementia.

These people were being further isolated and segregated. They were subject to disgraceful living conditions, in some instances. They were placed in their rooms with no interaction from others. Some received no assistance with activities of daily living or feeding. They were unable to have visitors or even accept video calls in the early stages of the COVID pandemic.

I watched as the early numbers grew and grew and, I watched as these people were not given a choice as to what was happening to them with regards to their care. I also watched in amazement at how decisions were being made about, and for, people living with dementia without any input from them or a family carer. This in itself scares me and makes me wonder what it’s going to be like when I need to go into care, after I  can no longer care for myself.

Some people with Alzheimer’s  disease [or other dementias] are unable to understand what’s happening or even communicate their needs or understandings. That is why I would like to see the care settings turned into small 4 to 6 bed residences, with a home-like environment, within a residential community – where the paid care staff are able to learn, have human rights training and have a better understanding of the person they’re caring for. That way they are seen as an individual not as a patient.

Moving from a medical model to a more social model of care, clients will get more personalized care in a more understanding setting. This type of setting will help to alleviate the spread of infections and diseases throughout, not like in large institutions.  It will help to minimize the devastation that happens to people in institutional settings. In these smaller group settings, people living with dementia will have more contact with care givers and will not feel the isolation they experienced in the larger setting, during the COVID epidemic.

The staff-to-patient ratio will be much better rather than eight-patients to one nurse. it could be three patients to a Personal Support Worker. This will greatly improve the actual hands-on-care, the understanding, and the standard of care that these patients will receive. We could have multiple homes in one neighbourhood, allowing for visits and get-togethers with other homes.

We know that people living with dementia do much better when they are kept engaged and are able to interact with others. In small group home settings, this is more achievable than in the larger settings. I firmly believe that this is the way to go in the future, so that we are able to remain in our community and have a sense of belonging.

We may have a cognitive impairment, but we are still able to understand and engage until late in the disease process. We all have human rights let’s abide by them.

Thank you for your time.

Phyllis Fehr, 2021

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Patience by Rose Ong

DAI continues to observe World Alzheimer’s Month #WAM also now referred to by many people and organisations as Dementia Awareness Month #DAM and World Dementia Month, by highlighting stories about, or written by our members, who all live with a diagnosis of dementia.

Today, we are delighted to hear from Rose Ong who lives in Canada. Rose is a member of Dementia Alliance International (DAI), and a co-founder and member of The YODA Group, associated with Memory Lane Home Living, a Canadian charity advocating for the rights of dementia affected adults in our community. Thank you Rose.

Patience

A poem written by Rose Ong
on August 15, 2021

I know you think I’m crazy sometimes
And question my judgement
On every decision I make
But if you want to show me your support
Learn to accept me as I am,
With all my faults and errors
Don’t scold me like a child
Just cover for me and let me believe
In the patience found in Love

I remember when you were small
When you began to use the words
I would say, or words you heard others use
Most times they fit the context
Of what you wanted to say, but,
Occasionally, they were way off the mark
I would just smile and ask
“Do you know what ‘convoluted’ means?”
Your sheepish grin; another teachable moment

You say, now, that I should know better
When I burn toast at breakfast or forget
My lunch in the microwave or wake at noon
So many repetitive items are jumbled in my mind
And like you were once, I would ask for patience
Because I deserve your forbearance
Not only because I am your Mom or Nana
I am a human being; faulted and flawed
Sheepishly giving you a teachable moment

So when you think I’m crazy sometimes
And question my judgement
On every decision I make
If you want to show me your support
Learn to accept me as I am,
With all my faults and errors
Don’t scold me like a child
Just cover for me and let me believe
In the patience found in Love

Rose Ong

Since you’re here, please donate to DAI today

By donating, you will ensure we can continue our work supporting people diagnosed with dementia, our families and the broader dementa community of researchers and professionals.

 

Webinar – How to make Alzheimers a rare Disease!

You are invited to join us at the DAI Brain Health Meeting in August 2021: How to make Alzheimer’s a rare Disease! presented by Professor Dale Bredesen, M.D.

DAY/DATE(S):

  • Monday, August 23, 2021 (USA/CA/UK/EU) – 4:30 pm CDT
  • Tuesday, August 24, 2021 (AU/NZ/ASIA) – 7:00 am ACST

Please note this is one event, set in a number of different time zones – it is not being held twice.

About the meeting and our presenter:

Dale Bredesen, M.D., is internationally recognized as an expert in the mechanisms of neurodegenerative diseases such as Alzheimer’s disease and other dementias, and the author of the New York Times bestsellers The End of Alzheimer’s, The End of Alzheimer’s Program, and the newly released The First Survivors of Alzheimer’s.

He has held faculty positions at UC San Francisco, UCLA, and the University of California San Diego, and directed the Program on Aging at the Burnham Institute before coming to the Buck Institute for Research on Aging in 1998 as its founding president and CEO. He is currently a professor at UCLA.

Professor Bredesen’s talk will describe the first reversals of cognitive decline in patients with Alzheimer’s disease and a recent successful clinical trial.

A great number of DAI members have also believed that a lifestyle approach, to a diagnosis of dementia is closest they have to hope, and even if not a cure, it will improve our quality of life. This is also the reason DAI started its Brain Health Hub and twice monthly meetings many years ago, for members and any others.

Please send in questions in advance to [email protected]

Register here…

Monday, August 23, 2021 (USA/CA/UK/EU)

  • 2:30 pm PDT
  • 3:30 pm MDT
  • 4:30 pm CDT
  • 5:30 pm EDT
  • 10:30 pm UK, BST
  • 11:30 pm Europe

Tuesday, August 24, 2021 (AU/NZ/ASIA)

  • 5:30 am SGT/AWST
  • 7:00 am ACST
  • 7:30 am AEST
  • 9:30 am NZST

The session runs for up to 1 hour.

Please check here if your time is not listed above:

COST TO ATTEND:

  • DAI Members: FREE
  • Care partners of people with dementia: FREE
  • Researchers: FREE
  • Health Care Professionals: FREE
  • Others: FREE
  • DONATION: $30.00

WHILST WE HAVE MADE IT FREE FOR YOU TO ATTEND, PLEASE CONSIDER MAKING A DONATIONTO SUPPORT THESE EVENTS AND SERVICES FOR OUR MEMBERS.

Register here…

Support people with dementia:

THANK YOU

Observing International Friendship Day 2021

On July 30, 2021 DAI observes the International Day of Friendship. The theme this year is Sharing the Human Spirit Through Friendship

The International Day of Friendship was proclaimed in 2011 by the UN General Assembly with the idea that friendship between peoples, countries, cultures and individuals can inspire peace efforts and build bridges between communities.

DAI is committed to building bridges, and to equal inclusion, collaboration, diversity and to ensuring the rights of all persons with dmentia and their families or care partners are realised.

The resolution places emphasis on involving young people, as future leaders, in community activities that include different cultures and promote international understanding and respect for diversity.

To mark the International Day of Friendship the UN encourages governments, international organizations and civil society groups to hold events, activities and initiatives that contribute to the efforts of the international community towards promoting a dialogue among civilizations, solidarity, mutual understanding and reconciliation.

The International Day of Friendship is an initiative that follows on the proposal made by UNESCO defining the Culture of Peace as a set of values, attitudes and behaviours that reject violence and endeavour to prevent conflicts by addressing their root causes with a view to solving problems. It was then adopted by the UN General Assembly in 1997. Learn more from the UN here.

Suggestions from the United Nations: Actions to Promote a Culture of Peace

  • foster a culture of peace through education

At Dementia Alliance International the leadership team and support group co-hosts fully understand and embrace the benefits of education both ongoing education for people living with dementia and education for those in the wider community through our Webinars and Special Events. DAI Webinars attract a wide audience, and a host of expert speakers from across the globe.

  • promote respect for all human rights;

Dementia Alliance International (DAI) continues to advocate locally, nationally and globally for the rights of people with dementia, as persons living with acquired cognitive and other disabilities. As our global work increases, we now attend the Conference Of State Parties (COSP) on the Convention on the Rights of Persons with Disabilities (CRPD). It is integral to our mission that people living with dementia have the same human rights as people living with other disabilities and we continue to advocate for this at all levels.

  • ensure equality between women and men;

Here at DAI we recognise that dementia strikes both men and women equally. Our support groups, webinars and other supports are open to men and women, as well as those who identify as non-binary or gender-fluid. Dementia does not discriminate, and nor do we. The support and information we provide is so important to all people living with dementia.

  • foster democratic participation;

DAI’s Board of Directors and other working groups foster democratic participation, and people living with dementia are encouraged to have their say through voting at Annual General Meetings, and by being involved in the various working parties and sub committees of the Board.

  • advance understanding, tolerance and solidarity;

Peer to Peer support groups run by people living with dementia, for people living with dementia embody the belief that tolerance and solidarity benefit all, whereas discrimination and division benefit no one.  One of the reason the DAI peer to peer support groups are so successful in achieving their mission is that the co-hosts do have a deep understanding of what group members may be experiencing, as well as tolerance and a sense of solidarity with members.

  • support participatory communication and the free flow of information and knowledge;

The leadership team makes a concerted effort to include all members of DAI in their information and communication. Board Meetings are transparent and decisions communicated to the general membership monthly. Surveys and blogs, newsletters and Facebook posts, twitter and Linked in – the free flow of information is encouraged and supported throughout the organisation.

  • promote international peace and security.

The world would be a better place with World Peace and all the peoples of the world living in security, but until then, DAI is doing its best as an organisation to promote inclusion and security for all – so that all people diagnosed with dementia, can live well with dementia

Please donate to DAI today

By donating, you will ensure we can contonue our work supportign peopel diagnosed with demetnia, our families and the broader dementa community of researchers and professionals.

Thank you.

 

Volunteer Vacancies

Photo by Julia M Cameron from Pexels

Dementia Alliance International (DAI) is a registered 501c3 charity in the state of Texas in the United States of America. Is is a charity that is run by, and for people with dementia, with no paid staff.

Volunteers currently support our important and demanding work.

DAI has three volunteer vacancies:

Dementia Alliance International (DAI) is a registered charity in the state of Texas in the United States of America; a charity that is run by, and for people with dementia with no paid staff. We do however, have volunteers who support our important and demanding work, and also thank our past, current and future Volunteers! We are currently looking for three new volunteers to support this innovative and highly successful advocacy organization.

Three Volunteer Vacancies:

  1. Board Secretariat: needs a demonstrated ability to keep accurate records, attend board meetings and the AGM, provide minutes, and other duties including advice on Governance.
  2. Finance Officer: needs a demonstrated ability to manage financial resources and develop budgets, prepare reports using Quickbooks, and so on.
  3. Webinars, Marketing and Social Media: this includes setting up webinars using Eventbrite, managing a calendar of keynote speakers, using MailChimp to communicate with members and supporters, and adding content to Twitter, LinkedIn and Facebook.

Key attributes:

  • Willing to work under the direction of the organisation, i.e. working under the instruction of people diagnosed with dementia, in accordance with nothing about us, without us
  • Agree to use DAI marketing and branding formats in all matters, including communications such as powerpoint presentations
  • Be willing to treat the role with the same professionalism as a paid position
  • Provide adequate notice if you need to step down
  • A background in or a full understanding of co-design
  • Knowledge and awareness of dementia as a disability, and equal access to the CRPD
  • Proven ability to work as a member of a team
  • Some education in dementia, or a background in dementia care

Essential criteria includes;

  • Confidentially
  • Willing to work under the direction of people with dementia
  • Willing to sign a Conflict of Interest form


 

 

Register for the July Webinar NOW

YOU are invited to the DAI July 2021 “Meeting Of The Minds” Webinar! We are very excited you are joining us for this very important discussion.

Title: From Rhetoric to Reality: Raising the profile of designing well for people living with dementia

Presenters:  Professor Richard Fleming, Kirsty Bennett, Dr John Zeisel & Chris Lynch

Note: the Zoom link to join will be sent 2 hours before the webinar.

Wednesday, 28 July 2021  (USA/CA/UK/EU)
– 2:00 pm PDT     
– 3:00 pm MDT     
– 4:00 pm CDT     
– 5:00 pm EDT     
– 10:00 pm UK, BST 
– 11:00 pm Europe   

Thu, 29 Jul 2021  (AU/NZ/ASIA)
– 5:00 am SGT/AWST    
– 6:30 am ACST    
– 7:00 am AEST    
– 9:00 am NZST  
 
The Webinar runs for up to 1.5 hours.

Register here…

Please check this link if your time is not listed above:  See you soon!

THANK YOU