Tag Archives: WAM2021

Books by people with dementia

For our final day of Dementia Awareness Month, and to further celebrate the voices of people with dementia, two DAI members, Christine Thelker and Kate Swaffer have created a list of books written and published by people with dementia.

In contrast to the vast number of books written by family members or care partners, we could only find about 3 dozen written by people with dementia. However,  they are a unique and honest view into the real lives, of real people diagnosed with dementia.

If you know any that have been missed, please let us know!

Listed in chronological order, to highlight how long people with dementia have been speaking out:

My Journey into Alzheimer’s Disease, by Robert Davis, 1989

Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s, Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s, by Diana Friel McGowin, 1994

Losing my Mind: An Intimate Look at Life with Alzheimer’s, by Thomas DeBaggio, 2002

When it Gets Dark: An Enlightened Reflection on Life with Alzheimer’s, by Thomas DeBaggio, 2003

Just Love Me: My Life Turned Upside Down by Alzheimer’s, byJeanne Lee, 2003

Dancing with Dementia: My Story of Living Positively with Dementia, by Christine Bryden, 2005

Alzheimer’s from the Inside Out, by Dr Richard Taylor, 2006

Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s, by Diana Friel McGowen, 2011

Silent Voices: My Battle With Alzheimers Rages on, by Norman McNamara, 2011

Who will I be when I die? , by Christine Bryden, 2012

From the Corner Office to Alzheimer’s, by Michael Ellenbogen, 2013

On Pluto: Inside the Mind of Alzheimer’s: 2nd Edition, by Greg O’Brien, (1st Edn 2014, 2nd Edn 2018)

Nothing About Us, Without Us!: 20 Years of Dementia Advocacy, by Christine Bryden, 2015

Before I Forget: How I Survived a Diagnosis of Younger-Onset Dementia at 46, Christine Bryden, 2015

What the hell happened to my brain?: Living Beyond Dementia, by Kate Swaffer, 2016

Diagnosed With Alzheimers Or Another Dementia: A practical guide to what’s next for people living with dementia, their families and care partners, by Kate Swaffer & Lee-Fay Low, 2016

Love Life Loss – A Roller Coaster of Poetry Volume 2: Days with Dementia, by Kate Swaffer, 2016

Dementia Activist: Fighting for Our Rights, by Helga Rohra, 2016

Five minutes of amazing: mjourney through dementia, by Chris Graham, 2016

The Lewy Body Soldier: The Lewy Body Soldier, by Norman McNamara, 2016

Walk the walk, Talk the talk, by Keith Oliver, 2016

Before I Forget: Love, Hope, Help, and Acceptance in Our Fight Against Alzheimer’s, B. Smith, Dan Gasby, et al., 2016

The Dancing Dementia Dude: An Urgent Conversation Between Dementia Folks, Care Partners and God, Dallas Dixon, 2017

Memory’s Last Breath: Field Notes on My Dementia, by Gerda Saunders, 2017

“Was zum Teufel geschieht in meinem Hirn?”: Ein Leben jenseits der Demenz, by Kate Swaffer, 2017

Dancing with Elephants: Mindfulness Training For Those Living With Dementia, Chronic Illness or an Aging Brain (How to Die Smiling Book 1), by Jarem Sawatsky, 2017

Somebody I Used to Know: A Memoir, by Wendy Mitchell, 2018

Will I Still Be Me?: Finding a Continuing Sense of Self in the Lived Experience of Dementia, Christine Bryden, 2018

A Doctor’s Personal Journey of Hope, by Dr Jennifer Bute, 2018

Talking Sense: Living with Sensory Changes and Dementia, by Agnes Houston, 2018

Dear Alzheimer’s: A Diary of Living with Dementia, by Keith Oliver, 2019

Dementia Strategies, Tips, and Personal Stories, by Myrna Norman, 2020

For this I am Grateful: Living well with dementia, by Christine Thelker, 2020

Slow Puncture: Living Well With Dementia, by Peter Berry, 2020

Sean’s Story: My five tips for living with frontotemporal dementia, by Sean Kelly, 2020

Dignity & Dementia: Carpe Diem: My journals of living with dementia, by Mary Beth Wighton, 2021


There are now many books which include chapters authored by people with dementia, e.g.

Dementia Rehabilitation, 1st Edition: Evidence-Based Interventions and Clinical Recommendations, Edited by Lee-Fay Low & Kate Laver, chapter 1, Rehabilitation: a human right for everyone, by Kate Swaffer.

The Routley Handbook of Disbility Activism, Edited by Maria Berghs, Tsitsi Chataika, Yahya El-Lahib, Kudakwashe Dube, chapter 10, Dementia as a Disability, by DAI members, Kate Swaffer, Brian LeBlanc, Peter Mittler. This book was the 2019 Outstanding Handbook – Social Sciences – Award Winner.






Acceptance by Terrie Montgomery

We are more than half way through Dementia Awarness Month, and continue to share stories from people with dementia, including many DAI members. Our blog today is written by one of our newer board members, Terrie (Theresa) Montgomery, who lives in the USA.

Thank you Terrie!


“Where there is a will, there is a way. If there is a chance in a million that you can do something, anything, to keep what you want from ending, do it. Pry the door open or, if need be, wedge your foot in that door and keep it open.” (Pauline Kael)

It was in 2015, that I was diagnosed with Early Onset Alzheimer’s.  The first thing I had to do was being able to accept it and live with it.  So far, I have.  But when it becomes more difficult is when we are juggling multiple diagnosis.  Not only myself, but there are quite a few others living with some form of Dementia and whalla out of no where, they too are trying to stay afloat.  Some of us fall victim of being diagnosed with not only one, but two, three and more. I am part of that MORE.  That is why it is so important to have or develop a sense of humor and more importantly hold on to our Faith.

Some may say, a sense of humor?  Faith?  What will that do? Having Dementia with other diseases and ailments added to it is far from funny, humorous or welcoming. Yes, I totally agree but what can we do about it?  Simply put, we CAN be open to ACCEPTANCE.  Yes, ACCEPTANCE, which prompts us to have a game plan, a adjustable attitude and a willingness to always believe there’s is a solution.”  That is where the Faith part comes into play.

None of us is exempt from things happening to us. None of us is exempt from being diagnosed with Dementia or any other disease.  Life Happens.  Of course we ALL know that there are preventive measures we can do to reduce us from certain medical conditions and diseases but we also know that Dementia like the Coronavirus does not have a respect of person. At this current second another person has been diagnosed with Dementia and possibly another disease or ailment.

Worldwide, around 55 million people have dementia, with over 60% living in low- and middle-income countries. As the proportion of older people in the population is increasing in nearly every country, this number is expected to rise to 78 million in 2030 and 139 million in 2050. (Google latest global statistics of Dementia).

The numbers listed are quite staggering. Hence, more of us need to be able to try our best to fight, to be well informed of clinical trails.  To advocate for ourself as a patient as well as advocate for our human rights to be treated respectfully and seriously.  Speaking of being treated respectfully and seriously is applicable to others that are living with Dementia as well   It is very therapeutic to uplift others that are living with a form of Dementia.

Yes, encourage those that are in our circle to keep fighting, remain engage, continue to build up one another  and NEVER tear down one another. All of us need peer support and kindness across the board.  “Nothing About Us Without Us!” is a slogan used to communicate the idea that no policy should be decided by any representative without the full and direct participation of members of the group affected by that policy. From Wikipedia,

The reason why I am sharing this is to encourage others, that are like me as well as caretakers.  It is no joke to live with Dementia, but it is achievable.  It is no picnic for others to judge, prejudge, or make assumptions in trying to predict or give a personal assessment where a person is in their disease or mental state. That can only be evaluated by a professional neurologist or physician.  It is imperative that everyone within the circle of some one living with Dementia has ALL of their affairs in order.  That can be difficult but yet necessary.

I must admit, that I am NOT perfect or 100% ready for the unknown but I am 100% ready to enjoy each second of a brand new day! Some of us has a full plate of circumstances beyond our control and some of us have (Fill in the blank).

However, I will not allow anything or any one steal my joy and neither will it steal any one else joy if we remain focused on the good in our life. Focus on the legacy we will leave behind but most importantly focus on the now, this second, this minute, this day!  Make sure it is NOT wasted.

Instead, park our illnesses, park our Dementia, park worldly events and definitely park everything that make us sad. Grab ALL the joy, positiveness, happy thoughts, happy steps, and precious memories we are going to make today.

If I can do it….WE CAN DO IT!

Why not?  Every day is a gift ..enjoy it! We are only going to travel this route once.  Everything is in Acceptance status for today and every day!  Right now at this moment, I am feeling my finest!  It can’t get any better than that if we keep our positive attitude on track!

Acceptance keeps Everything on track…..

Theresa (Terrie) Montgomery 9/13/21
Living with Younger Onset Alzheimer’s Disease
DAI Board Member
DAA Advisory Board Member


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.


A song by James McKillop

James McKillop, Scotland

We are thrilled to highlight this wonderful collaboration during Dementia Awareness Month 2021, a song written by of one of our past board members, and a long time pioneer dementia advocate, James McKillop, with a musician, Gus Harrower.

James has written many songs, poems and stories since being diagnosed, and was delighted that Gus worked to produce it as a song.  #WAM2021

Thank you James and Gus!

This song was featured on the 31st August 2021, as part of the Life Changes Trust online conference ‘Community & Dementia: Creating Better Lives in Greater Glasgow and Clyde’. They started the conference with this song, written bys James McKillop, who lives with a diagnosis of dementia in Glasgow.


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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Hello my name is Ting Fei – part 2

As we continue our series of daily activities and blogs for World Alzheimer’s Month it is important to remember that dementia effects many more people than those diagnosed, and that the financial and emotonal cost to family members and care partners is high. The World Health Organisation says:

  • Currently more than 55 million people live with dementia worldwide, and there are nearly 10 million new cases every year.
  • 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 has physical, psychological, social and economic impacts, not only for people living with dementia, but also for their carers, families and society at large.

In 2018, ADI reported an estimate that the annual global number of informal care hours provided to people with dementia living at home was about 82 billion hours in 2015, equating to 2,089 hours per year or 6 hours per day. This is the equivalent of more than 40 million full time workers in 2015, a figure that will increase to 65 million full time workers by 2030.

Hence at DAI, we believe it is important to share some of the personal stories of family members and care partners. They too need a voice, and today, we share part 2 of the lived experience of Dr Ting Fei Ho, from Singapore.

Hello my name is Ting Fei – part 2

Image source: Ting Fei Ho

Hello, I am Ting Fei. In 2019, I first shared about my mother who was placed in a residential aged care facility in Western Australia (WA) by her three younger children (two sons and a daughter). They were her legal guardians yet did not want the responsibility of caring for her as soon as they realized that she had dementia, despite their denial of the fact.

At the same time, my mother was on the road to recovery from her hip replacement surgery but, unfortunately, suffered a “mild” stroke while staying with her youngest son in WA.

Not long after my sharing in the September 2019 “#Hello, my name is” series, my mother passed away on 20 September 2019.

There will be no fair and just closure to my mother’s experience if I do not complete the account of my mother’s brave but futile fight to live her life with dignity and deserved quality.

Here in part two, I revisit and share the heart-breaking events of my mother’s last days in the aged care facility. Hopefully this will raise public awareness of the many ways by which a helpless elderly with impaired cognition can suffer abuse.

To recapitulate, my mother was placed in the aged care facility in mid 2016.

On admission, she was able to walk with a frame and able to independently perform basic tasks of daily living.

In less than two years, she suffered a few falls, developed deep pressure sores that did not heal for months; ended up with total immobility and fully dependent on support for her daily living. All these happened due to gross neglect and inappropriate care.

From 2016 to 2019, I travelled regularly from Singapore to visit and care for her. At the same time, I diligently strived to obtain legal approval to bring her back to Singapore where I can provide better care for her in my own home. Singapore was a second home to my mother who lived with me for several months a year before she was placed in the aged care facility.

Fast forward to September 2019, about 10 days before my mother’s death, I was informed through a brief email from her guardian that she was admitted to hospital for inability to eat or swallow. I made urgent arrangements to visit my mother to find out more about her condition.

Below is a list of horrific events during the 10 days before my mother’s death:

  • When I arrived I was shocked to find my mother hardly able to respond or communicate. She was staring up at the ceiling with glazed eyes, had very dry mouth and tongue, and she was struggling to breathe. The same general practitioner (GP) who looked after her at the aged care facility had ordered NIL by mouth a few days ago after her discharge from the hospital. Hence she was not given any fluid or nutrition for several days before my arrival. Basically, my mother was being left in bed to wait for death.
  • I used a wet sponge to wet my mother’s mouth in order for her to feel more comfortable. She clung onto the sponge, thirstily sucking the fluid. I then asked the GP whether I was allowed to give my mother some fluid this way. He said that she must first be assessed by a speech therapist. So that evening my mother was sent to the hospital again. After waiting all night on a trolley at ER, I was told that nothing more could be done and it was best to send her to a hospice care.
  • The same advice for hospice care was earlier prescribed by the doctor at the hospital during my mother’s first admission. But this advice was ignored and I was not aware of the hospital doctor’s earlier advice. I tried my best to contact various hospice facilities but they were all full except for the Bethesda Hospital Hospice Care. They promised to send someone down in the next morning to assess my mother. This hospice team and their efficient professionalism was the only ray of sunshine for my mother during the bleak last days of her misery.
  • When I saw my mother in so much distress, I asked whether she could be given some nasal oxygen to ease her laborious breathing. The aged care manager came and, without even stepping into the room to see my mother, stood outside the door and told me that my mother was not in distress hence nasal oxygen was not necessary. My heart sank at such an uncaring and heartless attitude.
  • Thankfully the hospice team did not take too long to arrive. They skillfully assessed my mother and promptly ordered nasal oxygen for her as well as a low dose medication to ease her breathing. They also advised me that my mother was too ill to be able to endure any transfer to the hospice care hospital. So under the supervision of the hospice team, my mother was given the prescribed oxygen and medication. Soon she was noticeably more comfortable and her breathing was quieter and relaxed.
  • By then I had also arranged for 24-hour private nursing care for my mother. The aged care staff tried to deter me and told me to get permission from the guardians. But I told them that it was a crisis and, in the absence of the guardians, I would decide and pay for all nursing and medical fees for my mother’s hospice care.
  • During these last days, none of the guardians were attending to my mother. They also did not follow up on the initial advice by hospital doctors to provide hospice care for my mother.
  • When all necessary care was finally arranged, I instructed the private nurse to monitor and record the vital signs of my mother and to regularly hold her hand, gently stroke it and talk to her. I observed that such physical contact and gentle speech were very reassuring and comforting for my mother.

When I bade farewell to my mother I knew I would never see her again. Indeed, within 24 hours after I left my mother, she gave up her spirit to the Lord and returned to her eternal home to be united with my father.

The sons, for whom she kept her eyes opened, waiting to see them for the last time, never appeared.

During my mother’s final days the abuse continued. She was deliberately denied hospice care and intentionally left to die a tormented death with starvation and dehydration. Thankfully, my intervention in bringing hospice care and personal attention to her brought some relief, calm and peace to her soul.

My mother’s misery lays bare two important lessons for us:

  • We must reinforce the calls to protect the vulnerable, guard their dignity and provide legal recourse to better defend their rights.
  • We should never assume that legal guardians and trained aged care personnel will always act in the best interest of the elderly person whom they are legally entrusted to care and protect.

I believe my mother’s suffering will not be in vain. Justice will and must prevail.

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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.


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


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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 

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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.