Category Archives: Younger Onset Dementia

Christine Thelker wins the 2021 recipient of the Richard Taylor Advocates Award

It is World Alzheimer’s Day, and DAI is thrilled to announce one of our Alumni Board Members, Christine Thelker from Canada is the recipient of the prestigious 2021 Richard Taylor Advocates Award.

We congratulate Christine, and also want to share some of her story, including this interview with Kate Swaffer about winning this award.

Christine Thelker receives the 2021 Richard Taylor Award

 

Finally, read why Christine was nominated by DAI member, Debbie Kaey.

Please explain why you believe Christine Thelker is a worthy candidate for the Richard Taylor Advocates Award:

First, Christine Thelker has opened a door for living with dementia that is “real”, not trying to paint an unrealistic picture of what living with dementia is like. Her relationship with the dementia community is vast and respected. She is\was an active board member, active in membership committees, action committees, host and co host, for support groups, webinars, cafe’s and special events with many dementia based and other community groups. She brings speakers to DAI for webinars, and puts together things like World Rocks Against Dementia.

Recruiting new members, she has developed one on one relationships with people living with dementia. She is not only a major promoter of DAI, she is an active Board member of DAI. Within the dementia community she is a liaison with other groups such as Dementia Advocacy Canada. Currently she works with people waiting for diagnosis until such time they are able to become members of DAI. Part of the Ed-Sig group (an environmental Dementia Special Interest Group out of Singapore) which is under the DAI umbrella. She also works with the Canadian Consortium of Neurodegenerative, Age well Canada, TREC ( Translating Research into Elder Care.

She writes for the Dementia Connections Magazine, along with several others like the Vernon Seniors Action Network ( VSAN). There are many more groups she is involved with but her love of and belief in DAI is well documented (eg: many interviews, articles as well as having written a book (eg: second one in the works).

Her support of so many has gained her much respect. She is a caring, sensitive and encouraging person, never dismissive, an empathic listener and is honest, “real” and has a gentle personality that invites you into her world, whether you have dementia or not.

Wise and discerning, she really does listen to a person’s narrative, reflecting back what they are feeling and thinking and not trying to offer personal opinion, but sage suggestions, allowing a person to walk the journey in their time.

I am honoured to know her. Her work speaks for itself and opens many doors for others, giving and not holding back anything she knows. She is very humble and I was so pleased she accepted this nomination. I hope you find in favour of this nomination.

Sincerely, Debra Anne Keay

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Quotes, from one of Christine’s presentation, at the ADI conference in Chicago in 2018:

Living with Dennis and Dementia, by Tina

Today, as part of our blog series for Dementia Awareness Month, Tina Baker who is the care partner and wife of one of our members Dennis Frost shares with us what is is like, for her, living with Dennis, as well as living and supporting with Dennis, who is diagnosed with dementia.

Tina highlights the importance of not defining the person by the dementia or the disabilities casused by many symptoms of dementia, as well as some of her own challenges and highlights. Dennis also shared some of his musings with us recently.

Thank you Tina.

Living with Dennis and Dementia

By Tina Baker

Image source: Tina Baker

Dennis is for the most part pretty easy to deal with as he keeps himself busy, with projects, zoom meetings, which are on most days. He does side projects for each of these and when he is not doing these things he is out in his shed making fine detail for his model railway, or making items from wood, which he is very good at and has made several items of furniture around the house over the years

Time watching, Dennis will eat at the same time every day, and wants to go  to bed very early, and he wants me to go with him, he says he can’t sleep unless I do, unless I am away from home, but as I work shift work and some shifts I don’t finish until 8.00 pm and get home, shower it would be about 8.20 so when he says are you ready to go to bed at 8.30, of course I am not, no I say, 8.40 are you ready now? Ah still no, I have now taken on a bad habit of downing 2 glasses of red wine as fast as I can so when by the third time at 8.45 I am at least relaxed enough to go to bed, and hope that sleep will happen, especially if I am on a 6.00 am start. I wish I didn’t indulge him years ago with this then maybe it would not be an ingrained habit now.

One thing about Dennis is that his taste for food has changed and he really doesn’t like many foods he once liked, this has created a somewhat issue with what to cook, so now most dinners are now plain, although sometimes I just want to have something I want so I cook 2 different meals, but because I work shift work, I am able to cook the foods I want to eat, which works out well in this regard.  I do cook up meals that I know he likes and freeze them of in hope when I am on a late shift, that at least Dennis might eat well enough.

Dennis is very independent and so is able to look after himself in a capable way, he gets his own meals ready when I am working, he still bakes slices and muffins ect, he still drives … although since Covid this year that is limited, he can still converse on the phone.

Dementia and the after effects, this can be embarrassing at times …. It also can be a good thing. On the bad times occasions the few times that Dennis has lost his temper in a supermarket, throwing things, arguing with staff about, well anything, being threaten with the band forever… been better for a while on this”, on the good side, he has managed to get our phone bills reduced, he has argued with billers to give us a better deal, rate, he has saved us hundreds of dollars over the year/s ….

But I am his voice in the bad times; I explain why he is like this why change may make him angry … why he is not wearing a mask…. Covid has bought its on challenges …. But he Dennis has adapted to these, as long as the people don’t come on the attack…. Eg…. Do you have a mask sir … Dennis no …. Here is one you can wear…. No I have an exemption …. No problem sir ….  Instead of NO MASK NO ENTRY this will only bring on a Dennis Tantrum in my words .

What do I do for me?

Well, as it has been stated above I am still full timed employed, so my time is mostly taken up with work, but I love to walk and I am luckier  than most carers as I am able to do this … my down time from work and the daily grind, is to walk for km … around work shifts which take me to different locations … bush, the beautiful south coast, local and even the hills of Kiama.  I am also still able to go away overnight occasionally with friends to attend shows and events. I would never take this for granted, especially after reading about so many other carers, I just appreciate the time now, and hope to be prepared when the time comes for other situations

Support

Dennis has a great support team whether it is from his group of people with the disease around the world, his friends that he has locally or the extended people throughout the studies and groups he is involved in , as for me? If there is anytime I just need to vent then the Dementia cares group is a great way to do this, through this site I have learnt so much, especially on how to answer the questions that others will ask about Dementia.   As I am a health worker at a hospital, and where that hospital does have a ward just for people with Dementia, I am able to answer questions on behaviour, on how to deal and treat these people but using the experiences that I have had, I am able to tell people that Dementia is real but is nothing to fear, I am Dennis voice in many situations, but I am also the one that explains what I do know to the next generation. I have been given cards and advice over the years on where to find support if I ever do need it and as I do work in the hospital environment I think I can find a way to get support if needed, there are resources out there, and it’s just a way to find out how to access them.

Dennis has come so far with his knowledge and training in the Dementia world, he has been in many studies, involved in many ways different groups, I think his input will go on to teach many others, and I am just glad that I can be a small part in this, maybe someday there will be a cure, and everyone that is involved especially the input of the ones with Dementia  that have spoken out about their experiences will be the thing that has helped with this cure, they are should be proud of the part they have had with their voices and stories have helped so many and will help so many more because they were brave enough to speak out.  I may not like everything about this nasty disease but I do love knowing that the person I love so much may the voice that can change the world and its opinions about it …… and I have experienced so much,  because of it, I would never have thought about traveling to some of the locations I have been lucky enough to experience, I would not be as brave as I am now to speak up, to use my voice to help others understand, I would not be the person today if I did not meet Dennis, Dementia or not he has taught me so much .

Dementia is a disease but is it does not define us, those that have it and those that are close to it, but all stories connected can change the conception of it and eventually lead to a the Cure.

Tina Baker

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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.

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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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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.

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.

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.

DAI celebrates 7 years, by John Sandblom

John Sandblom, USA

In this video, co founding member John Sandblom who lives in Iowa shares his impressions as a co founding member, as DAI celebrates the first 7 years of its life as a registered charity, providing support and advocacy for the 50 million people estimated to be living with a diagnosis of any type of dementia.

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.

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

I’M Still ME, by Emily Tan Tan Ong

I’M Still ME

By Emily Tan Tan Ong

For people living with a progressive condition for which there is no cure like dementia, a diagnosis of this nature is a devastating and life-changing experience. The impact is even more when it comes to younger people diagnosed with young-onset dementia.

These individuals often found themselves in “forced retirement” upon disclosure because of the societal perception of incapacity, the BPSD stigma, and discrimination against dementia. Given the overwhelming impact of the diagnosis, it is no surprise that everyone with a diagnosis of dementia struggles to find a way to live a meaningful and purposeful life even after the initial impact.

Rebuilding a life with a diagnosis of dementia is indescribably challenging, and it is made even more difficult by the misconceptions, connotations that come with the label of “old people sickness” and a blame discourse that the onset of Vascular Dementia, as a function of individual behavior (Peel, 2014). The process of “recovery a life” (Deegan, 1988) and reinventing is deeply a personal and individualized journey of growing within and moving beyond what has happened. While there is no set formula for this process, and everyone has to find their ways to live a meaningful and purposeful with dementia, society can do its part in lightening the load shouldered by those living and affected by the diagnosis. Myths and misconceptions surrounding dementia influenced the way people think, talk and treat individuals diagnosed and living with the condition.

Many people with dementia still have a strong sense of who they are and what matters in their life. “I’m still me” even though the brain no longer functions like it used to be. Society needs to see and accept deviation from norms as something nothing to be fearful of and discriminated against. Dementia does not change the core of what makes an individual. The values, beliefs, meanings in life, accumulated experience remain with the person.

There is a saying, “Dementia does not rob the dignity of a person” holds.

Often, the changes happened because the brain is changing and thus, it affects how a person experience, perceive and interpret the environment. It is like how age affects the speed of processing, learning and sharpness of thought. With that understanding society becomes more forgiving, accepting and accomodating to elderly. Likewise, the same approach can be applied to those living with dementia. Dementia is not a mental illness but a neurocognitive disorders like ADHD, Autism. It is progressive and terminal degenerative condition that has no cure at present and no such thing as remission like in cancer disease.

As a person living with young-onset dementia, my request to you, readers:

1) Get to know dementia through courses or spend time with people with dementia

2) Understand that living with dementia is like driving through a thick fog. It takes courage and much effort to find the fog lights to make their voice and presence ‘visible’ to other people.

3) Instead of seeing people living with dementia nothing more than Behavioral and Psychological Symptoms of Dementia (BPSD) turn it around and ask yourself, “What is the person trying so hard to say?” When you understand the underlying cause and provide the appropriate accommodation, you will notice that the person with fog lights. We need others to provide the lights and light up the path . We need your support to live positively in the community. We can’t do it alone, just like you can’t use the fog lights to light up your way other than to make yourself visible to others on the road.

References

Deegan, P. (1988) Recovery: The lived experience of rehabilitation. Psychosocial Rehabilitation Journal. 11: 11-19

Peel, E. (2014) The living death of Alzheimer’s versus ‘Take a walk to keep dementia at bay’: representations of dementia in print media and carer discourse. Sociology of Health & Illness. 36(6), 885-901