All posts by DementiaAlliance

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.

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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.

The importance of connections by Chrissy Thelker

For Day 8 of Dementia Awareness Month, we are thrilled to publish a blog about the importance of connections, written by DAI member, Chrissy Thelker.  #WAM2021 #DAM2021 Thank you Christine.

The Importance Of Connections 

By Christine Thelker
This morning much too my delight, I received a video call from a friend who also lives with dementia, she is in Scotland to visit her mother.
Now for a little history; she and I have never met in person, yet we have a connection, a friendship that is the type of friendship that warrants a video call even though she’s on the other side of the world on holidays at the moment.
During our conversation today she told me one of the reasons she had to call was because she wanted to thank me, for reaching out and answering her when she was first diagnosed and looking for support.
It was through that that she became a member of DAI, it was through that that the friendship blossomed. DAI is often the gateway to connecting people. It affords us the opportunity to meet others who share our journey.
DAI gives us that safe place to share to laugh to cry. To rediscover who we are after being devastated by receiving a diagnosis.
The people we meet, the webinars the cafes, the support groups, they all help us learn to live, to really live, despite our illness. You can attend many groups, work with many organizations, and they all offer certain things, we can gain something from many of them. I have watched as many who came to DAI struggling through the devastation of being diagnosed, feeling lost, alone, their confidence and self worth bottomed out.
I have watched those same people flourish and bloom, to go on to do many great things, not only for and as part of DAI, but also to start, or take active roles in other organizations, they have found themselves, reinvented themselves, regained the confidence they had lost and they are doing an incredible things that end up helping others.
And that was what the video call this morning was about, a call to say thank you for reaching out, because while in Scotland it offered her the opportunity to be that for someone else, and so felt compelled to say thank you. I was so moved by that call, we discussed how important those connections we make are, how important and intricate they are to our journey to find our wellness, to our continued well being.
We form connections, we find friendships, even with people we haven’t met.
We so often talk about all the things we can do to help us in our bid to live our best lives with dementia, we talk about, rehabilitation, nutrition, exercise, sleep, being mindful. But I believe the often overlooked piece is connections, connections with others.
I am grateful for the friendships and connections DAI has brought to my life, I continue to reach out to others, and have been so grateful to hear on several occasions in the last few weeks from some thanking me and I always hope that they to can offer that someday to someone. My friend thanked me for the gift I had bestowed on her which allowed her to be that person for someone else, the connections are truly a gift.
Together the impact we have on each other, for each other, is priceless.
So for Dementia Awareness Month, I challenge you all to think about the friendships you’ve made, and reach out and offer it up to others, encourage them to join DAI, so they to can go on and be instrumental in all the good that’s being done out there, through DAI and the many grassroots and local groups, and many organizations that are striving to improve the lives of those of us who are living with dementia.
Christine Thelker 

Since you’re here, please donate to DAI today

By donating to DAI, you will ensure we can continue our work supporting people diagnosed with dementia, our families and friends who support us, and the broader dementia community of researchers and professionals.

Hai Oh by Thomas Ong

Image source: Thomas Ong

On Day 7 of World Alzheimer’s Month #WAM, also now referred to by many people and organisations as Dementia Awareness Month #DAM and World Dementia Month, we continue to highlight stories about, or by our members, who all live with a diagnosis of dementia. Today we are delighted to publish a beautiful poem written by DAI member, Thomas Ong, from Singapore.

It is such a beautiful poem. Thank you Thomas.


Hai Oh

By THomas Ong

Hai Oh so beautiful in its smooth flight
Lifting itself high into the silky sky
Against the azure blue background in delight
Spreading its wings and soaring high

Swaying from right to left before flying onward
Searching for its ideal favourite place
With his companions flying in harmony forward
Sharing the wide horizon in euphonic grace

Hai Oh you inspire me to keep on going
Like you to be strong and brave
Flying while strong waves and winds are blowing
Believing like you I can achieve what I crave

The distance may appear to be great
The objective may not be too clear
But like you Hai Oh I feel it is a treat
To be able to soar towards it without fear

To reach it is a great delight
Having soared and glided with wings outspread
Before superbly swerving down to end its flight
So as to achieve at the end my reward

My reward is simply the immense satisfaction
Like you Hai Oh of having glided and flown
With wings outspread without distraction
Gliding towards my target swiftly and smoothly alone

Hai Oh! Hai Oh! You are so full of energy
Never seeming to stop your creativity
I wish to have your fantastic vitality
To carry on and on in spite of my disability

You inspire me with the effective method you employ
Swooping swiftly down and picking up your objective
I would like to imitate you Hai Oh with great joy
My reward is solving my problems and being creative.

It is a great delight
Having soared with wings spread and gliding forward
Before superbly swerving down to end the flight
So as to achieve the much desired reward

My reward is the great satisfaction
Like the Hai Oh of having flown
With wings outspread without distraction
Gliding smoothly and swiftly though wind blown

Hai Oh! Hai Oh! You are full of energy
Never seems to end your exciting creativity
I wish I have your remarkable and skilful ability
To carry on and on in spite of my inadequacy

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.

A Call to Action by Julie Hayden

As part of our daily blog series for World Alzheimer’s Month #WAM,  Dementia Awareness Month #DAM, or World Dementia Month, we continue to highlight stories about, or by our members, who all live with a diagnosis of dementia. Today, is a personal article, and a call to action,  written by DAI board member, Julie Hayden from the UK. Thank you Julie.

Ignoring the stigma: A Call to Action

By Julie Hayden
Hi, I’m Julie Hayden from Halifax in UK. As part of World Alzheimer’s Month I thought I’d just share some musings with you on my dementia and how I prefer to be seen.
Firstly, despite my dementia, I am a person, not a disease or a condition.
I am, and always will always be, a mother, grandmother, friend and someone who cares passionately about the rights of others.
I have been outspoken all my life, and refuse to stop until my dementia forces me to do so. I realise that this sometimes makes me unpopular and means that some people view me as being difficult, but quite frankly, at this stage in my life, I don’t care.
Why should I allow my dementia, or others’ stigmatised view of it dampen my spirit or my drive for more justice in the world? I now assess others far more on their actions than their rhetoric.
I recognise many faults in myself, but refuse to see my fight for a fairer world for people with dementia as one of them. 
I often think about how my uncooperative nature will impact on me later when I am living in residential care.
Will my unwillingness to do as I am told regardless of my wishes be interpreted as BPSD? Am I destined at some point to be “managed” by chemical cosh? I hope not, but at that point in my life I may have little or no personal influence.
The only thing that my friends, colleagues and I can do to prevent that happening, at least for those who follow on from us is to talk and write about our lived experience as a way of educating and enlightening others.
So please, join with us within DAI and the many other dementia organisations across the globe to make 2021 a year when we are able to take a step forward in banning BPSD and look at more humanistic and holistic ways of caring for people living with dementia.
Thank you.

Since you’re here, please donate to DAI today

By donating to DAI, you will ensure we can continue our work supporting people diagnosed with dementia, our families and friends who support us, and the broader dementia community of researchers and professionals.

Clearly, life is not over with a diagnosis of dementia…

Julie Hayden is a Board Member Dementia Alliance International (DAI), a Founder of Young Onset Dementia & Alzheimer’s (YODA), a Steering Group member of the 3Nations Dementia Working Group (3NDWG), Prime Minister’s Champion’s Group on Dementia and a
Board Member Deepness Radio & Recovery College.

How to make dementia a rare disease by Dr Dale Bredesen

As part of our daily blog series for World Alzheimer’s Month #WAM,  Dementia Awareness Month #DAM, or World Dementia Month, although we continue to highlight stories about, or by our members, who all live with a diagnosis of dementia, we are also pleased to publish other content related to living with dementia.

Hence for today, we are publishing the video recording of a recent #DAI Brain Health meeting with guest speaker Dr Dale Bredesen, and also attach his power point slides. Professor Bredesen’s talk describes the first reversals of cognitive decline in patients with early stage Alzheimer’s disease and a recent successful clinical trial.

Dale 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.

How to make dementia a rare disease

By Dr Dale Bredesen

 

Since you’re here, please donate to DAI today

By donating to DAI, you will ensure we can continue our work supporting people diagnosed with dementia, our families and friends who support us, and the broader dementia community of researchers and professionals.

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.

 

WE CAN by Terrie Montgomery

 

 

In 2021 DAI once again observes 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, Day 3 of WAM, we are delighted and proud to publish an article written by DAI board member, Terrie Montgomery from the USA, an excellent piece focused on what people with dementia CAN still do.

Thank you Terrie.

“My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style”. Maya Angelou

WE CAN

By Terrie Montgomery 08//25/21
We have added this collage of images and quotes, as it beautifully represents the amazing woman and friend that Terrie is to so many of us.

Some times I find myself asking the question, “Where do I go from here”.  Have you ever ask yourself that question?  Yes/No?  In my case, I ask it quite frequently because living with dementia, can cause us to wonder.

“Where do We go from here”; When we notice changes occurring in our life.  For example our memory is becoming shorter, or we can’t concentrate or multi-task or we tend to a back track often or find ourself saying, “What was I doing or looking for?”  Hence, we begin to feel frustrated that we are slowly losing that perfect 10 ego we once were so proud about, slowly slip away!  Sound familiar?

Now let’s change gears!

We do NOT or should NOT dwell on what we use to be able to do, when we still CAN do so much more.

Yes, so much MORE!  For example, perhaps we may have a hobby, that we always wanted to do and still have not started, why not start doing it now?  Or we always wanted to (Fill in the blank).  Again, why not do whatever we CAN right now? What are we waiting for?

Some may think, it sounds easy to me but it is NOT that simple! That is a absolute truth but we have to instill in our mind as we travel through our journey to be satisfied with what we still have, and CAN remember.  THINK ABOUT IT!

We CAN distinguish what’s right, We CAN breathe, We CAN recognize our name, We CAN distinguish morning from night, and more importantly we CAN learn what to eat to improve brain functioning….and “How can we do that”?   Just do it! Take time to DO things we normally may not do or feel we CAN do and that is: add research to our daily to do list. It is as easy as 1,2,3  to get started.

Finally, here is a link that may have some valid pointers that we CAN incorporate in our daily routine to improve our brain health and keep us fired up!  Even if we can’t remember something earlier, YES WE CAN certainly learn something new today!

Let’s “Do this”!

Have a day that is just like “You”… totally awesome!

Terrie Montgomery, Dementia Advocate
Living with Younger Onset Alzheimer’s
Board Member, DAI  Dementia Alliance International
Advisory Board, DAA Dementia Action Alliance

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.

Conversations on the impact of Stigma on QoL of people with dementia

 

 

 

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

On Day 2 of WAM, and as a part of our Dementia Awareness Month blog series, we invite you to listen to DAI board member, Mrs. Emily Ong from Singapore, in conversations with other people living with dementia, on the impact of stigma  on the quality of life (QoL) of people with dementia.

Conversations on the impact of Stigma on QoL of people with dementia

Since you’re here… we’re asking viewers like you to support our members, by donating to our organization.

With more than 50 million people living with dementia, and the Coronavirus pandemic causing everyone to operate in a virtual world, our work has never been more important.

Donating or partnering with DAI will make a difference to the lives of people with dementia globally. Please donate today. https://www.dementiaallianceinternational.org/donate-or-partner/

Membership of, and services provided by Dementia Alliance International is FREE, and open to anyone with a diagnosis of any type of dementia. Join DAI here: www.joindai.org

Read our newsletters or regular blogs, by subscribing here: www.dementiaallianceinternational.org

About DAI: Dementia Alliance International (DAI is a non-profit group of people with dementia from around the world seeking to represent, support, and educate others living with the disease that it is possible to live more positively than advised with dementia. It is an organization that promotes a unified voice of strength, advocacy and support in the fight for individual autonomy, improved quality of life, and for the human and legal rights of all with dementia and their families.

Welcome to Dementia Awareness Month 2021

 

 

Welcome to World Alzheimer’s Month 2021, now also referred to by many people and an increasing number of dementia advocacy organisations as Dementia Awareness Month or World Dementia Month.

On day 1 we are thrilled to present a song written and performed by one of our members, Graeme Atkins from NSW Australia.

World Alzheimer’s Day by Graeme Atkins

Since you’re here… … we’re asking viewers like you to support our members, who all live with a diagnosis of dementia, by donating to our organization.

With more than 50 million people living with dementia, and the Coronavirus pandemic causing everyone to operate in a virtual world, our work has never been more important.

Donating or partnering with us will make a difference to the lives of people with dementia: https://www.dementiaallianceinternational.org/donate-or-partner/

Membership of, and services provided by Dementia Alliance International is FREE, and open to anyone with a diagnosis of any type of dementia.

Join DAI here: www.joindai.org

Read our newsletters or regular blogs, by subscribing here: www.dementiaallianceinternational.org

About DAI: Dementia Alliance International (DAI is a non-profit group of people with dementia from around the world seeking to represent, support, and educate others living with the disease that it is possible to live more positively than advised with dementia. It is an organization that promotes a unified voice of strength, advocacy and support in the fight for individual autonomy, improved quality of life, and for the human and legal rights of all with dementia and their families.