Category Archives: Dementia

#EqualUN: Open Letter re CRPD Committee Elections

We are pleased to announce that Dementia Alliance International is one of more than 80 organisations and experts who have signed an open letter calling on UN member countries to protect gender parity and diversity of representation on the committee on the rights of persons with disabilities.

The letter was coordinated by Sightsavers and partners from Light for the World, GQUAL Campaign, Women Enabled International, CBM Global Disability Inclusion, the World Federation of the Deaf and the International Disability Alliance. It has been sent directly to each participating country’s permanent mission to the UN in New York.  

We signed onto this very important Open Letter to the United Nations to protect gender parity and diverse representation on UN disability committee.

We must ensure people with dementia are not left behind.

Dementia is a condition causing cognitive and mulitple other disabilities, currently affecting more than 57 million people globally, and their families. It also affects more women and girls, than men, making gender parity on the UN CRPD Committee even more critical.

Read the full open letter here:

Your Excellencies,

We the undersigned call on you, as a State Party to the Convention on the Rights of Persons with Disabilities (CRPD), to use your votes in the election of the new CRPD Committee at the Conference of States Parties in June 2022 to protect the gains made on gender parity on the Committee and to ensure it continues to become more representative and diverse in line with the intent of the CRPD.

In 2020, six women were elected and gender parity on the CRPD Committee was achieved for the very first time. This is in stark contrast to 2016 when no women were elected (resulting in just one woman sitting on the 18-member Committee), and all previous iterations of the Committee, when women were in a minority. States Parties must protect this progress.

The CRPD states in Article 34 (4) that in electing Committee members, consideration should be given to “equitable geographical distribution, representation of the different forms of civilization and of the principal legal systems, balanced gender representation and participation of experts with disabilities.”

As well as maintaining gender parity, we must ensure equitable geographical distribution and persons with diverse types of disability. To make progress towards an equal world for everyone, in both public and political life, it’s essential that the voices of underrepresented groups of persons with disabilities are heard, including women with disabilities, deaf persons, deaf-blind persons, persons with intellectual disabilities and persons with psychosocial disabilities.

At the Conference of States Parties in June 2022, you have an opportunity to protect the gains made in recent years on the CRPD Committee on gender parity, and drive progress towards representing the full diversity of voices of experts with disabilities. We urge all States Parties to the Convention on the Rights of Persons with Disabilities to cast their votes with this in mind.

Sincerely,

Coordinating group 

Sightsavers #EqualUN Campaign (UK/Global) 
Light for the World (Austria/Global) 
GQUAL Campaign (Global) 
Women Enabled International (USA/Global) 
CBM Global Disability Inclusion (Netherlands/Global) 
World Federation of the Deaf (Finland/Global) 
International Disability Alliance (USA/Global) 

The full list of signatures and the translated versions of the letter can be found here.

Note: These graphics were generously provided for anyone to dowlload to use for social media posts.

Media release 2: DAI rationale for service changes

DAI e-News April 2022
Detailed explanation of service changes

Dear colleagues and friends,

Further to our recent announcement of the changes in DAI, we wish to share the following more detailed explanation of why it became necessary to suspend so many of the DAI member services as well provide some history for context. Looking back has been essential to moving forward.

Most reading this will know that Dementia Alliance International (DAI) was founded on 1 January 2014 by eight people diagnosed with dementia, all with a dream to provide support for other people living with dementia, and to advocate for others with dementia to live more positively, for better services and support, and for our rights.

The eight founding members hailed from three countries with a collective dream for an international organization being a group ‘of, by and for’ people with dementia.

Exemplifying the nothing about us without us philosophy as the founders had all recognized that people with dementia did not truly have a voice having had it taken away by the stigma and discrimination of dementia. Their dream was to advocate for the autonomy and rights of all people living with dementia.

People with dementia have a human right to self-determination and full inclusion in society (not to be isolated, discriminated against, or segregated from society).

Peer to peer support for people with dementia

The founders learned there was no organization with this shared belief among thousands of organizations whose leadership and missions were all about research for a cure or supporting the carer and that those organizations rarely included persons living with dementia in their governing ranks or in their mission statements. It’s as if people with dementia didn’t exist, except when used as fund raising tools.

Even support groups for persons living with dementia required the participation of a family member or care partner and the conversation was dominated by the one without dementia. We knew persons living with dementia needed and deserved a safe and private place to participate in peer-to-peer support.

We knew this methodology was valid as Alcoholics Anonymous had already proven it works. Many had already been meeting online to support each other and it is that camaraderie and self-determination and the growth of a collective global advocacy that gave birth to Dementia Alliance International, an organization founded and led only by and for persons living with dementia across the globe.

For many years, people with dementia had been promised funding for a global group, as far back as the late 1990’s, when Christine Bryden and others founded the Dementia Advocacy Support Network International (DASNI). The late Dr. Richard Taylor had also been promised the same thing many times but as it was never forthcoming, hence the founders of DAI decided to set it up, as well as fund it and run it themselves.

DAI has always had to fight hard for anyone to support us, and then, it has never been more than piece-meal funding. Typically, just enough to set boundaries on our advocacy.

The Board and many of our members believe the best work that DAI has done is to provide peer to peer support, which in turn has empowered more newly diagnosed people to get back to living.

DAI was using Zoom long before the COVID pandemic; it started the first online peer to peer support group for people with dementia in the world, which continues today, and DAI still hosts the only living alone peer to peer support groups that we know of, in the world.

DAI’s global support for, and advocacy and representation of people living with dementia has been significant and ground-breaking, and we know we have much to be proud of.

Our members continue to report that our peer-to-peer support groups are an amazing, life-giving steppingstone for people more newly diagnosed with dementia to ‘get back to living’. This is truly powerful work, that even in times of covid, no other organisations yet do.

However, it appears to DAI that many people without dementia do not fully support our organisation. We base these assumptions on the actions and attitudes of others, and because so few people or organisations support DAI, promote DAI, partner with DAI, or donate to DAI.

In fact, pre covid, when zoom webinars being hosted by other organisations were rare, DAI tried a few times to add a small registration fee to their monthly webinars to help with financial sustainability.

Shockingly, a great many people in paid employment, including staff members of dementia charities, falsely registered as DAI members, to avoid the fee.

The other truth that DAI has had to face, especially members of DAI who are not active advocates with their national charities, is they are still fighting for Article 19 of the CRPD.

Inclusion is too often still missing, and it continues to be ‘about us, without us’.

For these and a numer of other reasons as outlined below, DAI had no choice but to reassess its future direction and services.

International dementia advocacy requires significant leadership, statesmanship and organizational skills as well as public speaking skills and knowledge of not only of the lived experience of dementia, but of policy, human rights and so on. Just being diagnosed with dementia, doesn’t provide these skills and thus there is a limited pool of talent to draw on. DAI has found it difficult to retain people in our membership with a passion for advocacy, who have the required skills and are willing to serve DAI, as they are often approached by the charities, researchers, and other organisations to get involved with their work.

This leaves DAI ‘dry’ and returning to square one repeatedly having to find and train new members to do the work. Even when DAI is actively working with others, it is mostly without renumeration to, or recognition of DAI or its membership.

DAI has faced some unique and difficult challenges 

Firstly, all DAI members live with dementia, and whilst they are often willing to volunteer, they also have significant time and financial constraints as they tackle the daily challenges of living with dementia, and the lack of post diagnostic support. Beyond that, DAI has faced many other significant difficulties.

  1. Other charities, organisations, researchers, start-ups, and individuals are constantly inviting DAI members to work with their organisations, which then means DAI has had difficulty retaining members to support their own organisation.
  2. Furthermore, other organisations usually have significantly more funding than DAI, and are therefore able to provide paid staff to support their volunteer self-advocates, making it even more difficult for DAI to retain active members.
  3. DAI has increasingly been asked over the last 8+ years to support researchers, individuals, and organisations with their grant applications, to promote their projects and surveys, but then not appropriately included in the work.
    • DAI is very rarely funded in the projects,
    • DAI is rarely included in the activities or focus groups projects, and instead of working with DAI, researchers go to the national dementia charities and their dementia working or advisory groups.
    • DAI is rarely referred to as an organisation for people with dementia, in the research outcomes, yet
    • DAI is expected to promote the surveys and other project activities.
  4. Since mid 2015, DAI has been thrilled to have the support and funding of strategic partners and other donations to fund its operations.
    • In mid 2015, ADI became DAI’s first strategic partner
    • In November 2018, Dementia Australia became a major donor; the following year, DA became our second strategic partner
    • Both partners currently provide $20,000 USD per year
    • DAI receives very few other donations.
  5. Clearly however, this means we have insufficient strategic partners and donors to remain sustainable in our current format, let alone have access to financial resources that can be used to hire paid staff to support our organisation.
  6. The lack of adequate funding has always been a major issue limiting available technologies, marketing materials and staffing.
    • Therefore DAI has had no choice but to modify its structure and services.
  7. We have been well supported by our non-member volunteers, but it is becoming increasingly difficult to find volunteer staff who have the time, or that don’t have an unconscious biases impacting their ability to work within the ‘nothing about us, without us’ philosophy, or hidden personal agendas which we do not fit with DAI’s vision or mission.
  8. Inclusion of DAI members by individuals and other organisations continues to be tokenistic at best.
  9. Recognition of the disabilities caused by dementia and adequate reasonable adjustments and disability support are not provided making it difficult or impossible for persons living with dementia to participate fully or equally.
  10. Finally, whilst others appear publicly to support DAI, most do not want a truly autonomous voice in this very crowded space, notably, when we differ to the goals of other organisations.

Working with DAI in the future

Moving forward, DAI will fulfil any current commitments made to research projects or other projects and organisations. It will also continue to work with the WHO and UN, as it has over the last many years.

However, it will need to limit its involvement with individuals and other organisations in the future.

It is obvious that people with dementia continue to be the only people in the dementia sector who are not paid for their labour and expertise, and where others who get to meet our members, then want them to work with and promote their organisations, but with little or no reciprocity to DAI.

Therefore, DAI will soon release a policy for how individuals, start-ups, researchers, and all others will be able work with our organisation and our members, so that it is fair and equitable for everyone.

Although this has partially been outlined in the documents, Value to a sponsor partner or donor and Opportunities for researchers, partners sponsors and associates, both updated in 2018, it is apparent they are unclear.

Thank you

The board sincerely hopes this rationalization and suspension of four services is temporary, and that some will be reactivated in the future, and we thank you for supporting us as we streamline our operations to ensure our core activity, which is peer to peer member support is sustainable.

DAI’s incredible work and willingness to support and work with others, without reciprocity has been a major contributor to the need to make these very difficult decisions. Hence, we really hope that moving forward, the many organisations and individuals DAI has so actively promoted and supported for the last eight+ years, will consider reciprocating and partnering with us in the future.

“Nothing about us, without us.”

Cheryl Day
Acting Chair
On behalf of the Board of Directors
Dementia Alliance International (DAI)

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Reminder: Effective immediately

DAI will continue to provide the following services:

  1. Free membership for people living with any type of dementia.
  2. Weekly Peer-to-peer support groups for DAI members (no cost to members).
  3. Provide member and data base communications via regular blogs on the website, not through e-news using MailChimp.
  4. Retain its charitable 501c3 status in the USA to allow for donations to continue.
  5. Retain its CPA to perform the annual financial reporting and required IRS related paperwork.
  6. Retain the award-winning DAI YouTube channel.
  7. Retain the DAI website, which is currently being updated.
  8. Retain the DAI branded Facebook, LinkedIn and Twitter social media pages.
  9. Finally, the Environmental Design Special Interest Group (ED-SiG) will continue to be led by Emily Ong, from Singapore

DAI Human Rights Advocacy

The global human rights work we currently do will continue, although DAI will need to fund an external partner or expert for this work to continue. Kate Swaffer will continue in her role as interim human rights advisor until the AGM in June, while the board decides on its long-term future direction. DAI will continue to work with the WHO and UN, will retain its ECOSOC status at the United Nations, and its Observer status with the International Disability Alliance.

DAI is suspending the following services until further notice:

  1. Monthly “Meeting Of the Minds” Webinars
  2. Monthly virtual Cafe Le Brain
  3. Twice monthly Brain Health Hub Zoom Meetings
  4. The annual WRAD event

Furthermore, to reduce costs, DAI will cease the monthly newsletter and other mailings, and blogs on the DAI website will be used to communicate to members instead. We hope the increased activity on our social media pages will fill any potential communication gaps.

Please note therefore, that all future official and other communications will be through the website as a blog; this mean you need you to subscribe to them to receive our news and any other communications. 

Note: we sometimes use voice recognition software for correspondence​ and newsletters; ​​hence there may be some grammatical errors or spelling mistakes, for which we thank you for your understanding.

World Day of Social Justice 2022

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

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

The major social injustices affecting the world today:

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

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

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

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

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

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

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

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

REMINDERS OF UPCOMING EVENTS:

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

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

Thursday, 3 Mar 2022

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

Friday, 4 Mar 2022

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

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

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

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

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

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The importance of Rehabilitation for all people with dementia

Watch our  webinar, The importance of Rehabilitation for all people with dementia,  now!

In September 2021, DAI hosted a series of four “Meeting Of The Minds” Webinars, specifically focused on rehabilitation for dementia. This was done as people with dementia have been campaigning for the full suite of rehabilitative interventions after diangosis for decades. At last, we appear to be seeing small actions towards actually achieving this basic human right, and what is deemed equal access to Universal Health Coverage.

The webinar was the final panel session of that series, with panellists Professor Lee-Fay Low, PhD, Sydney University, Dr Alexandra Rauche, from the World Health Organisation, Ms Emily Ong DAI member from Singapore, Ms Lynette Rogers, DAI member from Victoria, who lives in residential aged care, and DAI co founder Kate Swaffer who has been campagining for rehabilitation for dementia, and also for dementia to be managed as a condition causing disabilities for over a decade.

Rehabilitation helps individuals maintain and optimize independence. Historically, people with dementia have received little or no rehabilitation and the focus has been on care to replace lost function. It is now critical that health and social care professionals, service planners, policy makers, and academics embrace dementia rehabilitation.

There is a compelling case for rehabilitation for people with dementia, including the views of people with dementia and the research evidence. For each area of function, the research evidence and relevant theory is clear, and needs to be followed by practical information on clinical assessment, and delivery of therapies.

You can view the other Rehabilitation and Dementia webinars on our award winning YouTube channel here.

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

There are now more than 55 million people living with dementia, AND DAI is the global voice of people with dementia.

As the Coronavirus pandemic has caused everyone to operate in a virtual world, our work has never been more important.

Donate to or Partner with DAI today

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

If you are diagnosed with dementia you can join DAI here. 
Read our newsletters or regular blogs, by subscribing here

About DAI: Dementia Alliance International (DAI is a non-profit 501c3 charity of, by and for people with any type of medically confirmed dementia from around the world. We seek to represent, support, and educate others that living more positively with the condition is possible.

Stigma, by Rose Ong

Stigma, a poem by Rose Ong, an advocate living with Vascular Dementia in Canada, and founder of the weekly DAI Canadian P2P Social Support Group. Thank you Rose, for keeping this topic on the agenda.

Stigma

We had carried on a bright and cordial conversation
The kind of informal banter between new friends
Just learning about those little details of our lives that
Make us each quirky and interesting at the same time.

As we rose to return to our own sanctuary of solitude
I happen to mention that I had ‘dementia’ in order to explain
Why I no longer could drive and why I had used a walker
To get to her house, just two blocks from mine, here in Newmarket.

The shock that registered on her face was remarkably as if
I had slapped her; her jaw dropped, her eyes filled with extreme pity,
As she stammered, “…but you can talk so well,
I never would have known… I always thought that dementia…”

I stood there and smiled as she stumbled over words of caution
And surprize, mixed together in the dreaded cocktail I call STIGMA.
Having learned to accept graciously, with patience and humility
I prepared what I would say in response to HER ‘overwhelming’ confusion.

STIGMA – I faced it often when I first became unconcerned about
The world’s perception of my condition – and began to speak openly
And honestly about how it affected my memory and anxiety levels;
The simplest tasks; counting money; following a recipe; meeting new people.

Why did I bring it up? Wouldn’t it be easier to not say anything at all?
Yes, but imagine, for a moment, having a dog who DAILY bit you in the leg and
Deeply wounded you physically and emotionally, but you merely covered
It up, never spoke of it, and denied its existence to anyone noticing your limp.

Why would a sane person do that day after day?  

Instead, I chose to uncover the depths of this crippling disease and all its
Emotional handicaps and physical disruptions and discuss it openly
With anyone who would listen. Surprized? You shouldn’t be, you should
Listen, really listen, from your heart because I’m going to change the world.

Just imagine, if every person with any type of dementia began speaking up
About their limitations without fear, from the earliest onset of the disease, Doctors would have to take notice; governments would have to find solutions
And we could eradicate STIGMA in one generation.

Are YOU ready to change the world?

Written by Rose Ong, November 11, 2021

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Young onset dementia: identifying the signs and diagnosis must dos

Earlier this year, one of our members, Natalie Ives from Melbourne presented at the Australian Young Onset Dementia Special Interest Group’s first webinar. Unfortunately, due to an IT issue on the day, it was not recorded well enough to upload tp YouTube, but Natalie has kindly agreed to share her full speech notes with us today.

Thank you Natalie.

Hi and welcome to todays webinar!

My name is Natalie ,I am a devoted mother of two daughters and a teacher by profession .

I am also an advocate and member for Dementia Alliance International, Dementia Australia, and the Australian Aphasia Association. Aside from these important roles, I love to travel; when we aren’t in lockdowns, as well as taking on different art projects in my spare time. 

I will now discuss how my loooooooooooooong journey began from raising my teenage  daughters , to now living with young onset dementia.

I first knew something was different with me when I would have trouble finding the right words to say, or think of them, especially when I had to fill out a form but couldn’t think of the right words.

Now this was different for me , as I had higher education and used to talk academically and writing essays relative ease.

The difficulty with my speech continued and I would start to use google or ask my girls for help when  I had word blanks.

Gradually ,I started noticing changes in my spacial awareness.

Crossing the road would sometimes be difficult as I would not be able to judge the right point of when to cross . Which my daughters would help me do. Now its funny how my girls had to tell me when to cross the road, as their mother , it was my job to teach them how, not the other way around!

This is when things started to look serious when we moved into our new home and I would start forgetting basic tasks liken how to use my phone or how to cook meals that I cooked effortlessly.

One day, my girls were out with friends during the summertimes I was home alone keeping out of the heat. I had put some eggs pan to boil to make sandwiches later , and that’s when I went blank. All I remember after that was my family friends hovering over me with the paramedics behind them.

I was told later on by family that I had called my daughters in a panic, unable to speak coherently and was not myself .I didn’t know my name or much else about myself at the time when the paramedics were looking at me.

Then I was taken to sunshine hospital and taken to a ward; the paramedics had suspected that I may have had a stroke, so the doctors looked into that .I was poked and prodded, taken up and down for scans to see what could have happened. All of this I don’t remember much, only what I have been told.

I was kept over night for supervision ,but released the following day.the doctors didn’t know what was wrong with me , and let me go with a referral to see a neurologist shortly after.

They said to come back to the hospital if anything should happen again.

unfortunately it did happen again, and I want back to hospital as instructed ,but they said nothing was wrong with me and that I wasted their time calling the ambulance. I was left in the emergency room for 6 hours and was given a script for epilepsy meds (as I found out from my GP)

My GP was supportive of me throughout the whole journey . I went to her to discuss what had happened at the hospital, and to find out if she could get some results from all the tests.

She called and found out that day I went to the hospital that first timer had brain swelling and was not told about it .

After all this all this, I felt alone. I felt. I wasn’t being Hurd or trusted by all these people who were supposed to help.even they didn’t believe at the time . Some of the doctors needed a course in sympathy  and effective communication with human beings .

Terms such as migraines and anxiety were thrown around by the doctors as an easy way of explaining what was wrong with me , since they didn’t know .the neurologist from before said I had mild cognitive impairment and that I should see a nuropsych .from that nothing was concrete .

I was referred to see a psychologist .

If that wasn’t enough the psychologist told me I shouldn’t be there as I wasn’t dealing with mental health issues.

I was left with no where to go 

I had to search by my self for a solution 

I went back to my GP to discuss all of the things that had happened, which was a wise move as she is a proactive doctor . 

I was now being looked after a medical profession who believed me and wanted to help.

The diagnosis of mild cognitive impairment was a umbrella term for dementia, or young onset in my case. A friend of mine with the same condition suggested I contact Dementia Australia ,which I am here with today. I have now been with them since 2019 and now I’m involved with Dementia Alliance International .

I’ve been able to find support I needed through the friendships I have built with people like me who have had a lived experience with dementia.

Recently on my journey I have been diagnosed with my speech pathologist with primary progressive aphasia ,which she said was quite clear from the initial phone call.

All these diagnoses have helped me understand what is going on with me.i finally feel herd and some of my concerns have been validated .which has  reduced my stress heaps .

This journey has been hard , but with the support of my family and friends; a few special doctors; dementia Australia and dementia alliance international ,I am able to embrace my new life living with dementia and aphasia .

From my lived experience, I have a want for change. I want other people who will go through what I have in the future to be supported by the medical community. Dementia and other related issues aren’t taught to doctors of medicine.i believe there needs to be education on these issues within the medical community, so others like me who had no idea what was wrong with them can feel heard and supported.

Please support more people like Natalie who live with dementia by donating to DAI today.

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Watch our webinar “Cognition-oriented treatments for people with dementia” on YouTube

Available to watch now is the recording of the September Webinar, Cognition oriented treatments for people with dementia, by by Dr. Alex Bahar-Fuchs and Dr. Loren Mowszowski. It was one of four from our 2021 Dementia Awareness Month series of webinars focused on Rehabilitation for Dementia webinars.

“Cognition-oriented treatments for people with dementia”

This webinar was presented by Dr. Alex Bahar-Fuchs who is a clinical neuropsychologist and an NHMRC senior research fellow in the Department of Psychiatry at the University of Melbourne, and Dr. Loren Mowszowski who is a registered Clinical Neuropsychologist and NHMRC-ARC Dementia Research Development Fellow at the University of Sydney.

About this DAI “Meeting Of The Minds” Webinar

There are no known effective interventions to stop or reverse the progression of symptoms in people with dementia; however, many treatments are available to slow the process of decline, reduce the impact of cognitive and functional impairment, and improve the day-to-day experience, quality of life and confidence in people living with dementia.

In line with this, several high-quality Clinical Practice Guidelines for dementia rehabilitation around the world predominantly focus on recommendations targeting cognitive and mental functions, and a large body of evidence indicates that cognitively oriented treatments have shown promise in relation to cognitive outcomes. In this presentation, we will discuss the key features and evidence behind three main approaches to cognitively oriented treatments: cognitive training, cognitive rehabilitation and cognitive stimulation therapy.

The presentation included some practical examples of how the techniques underpinning some of these approaches can be used to support day-to-day activities. For health professionals, we propose key factors to consider when planning or implementing cognitively oriented treatments. Finally, the presenters proposed areas requiring future attention in research and clinical practice.

Nothing about us without us

We are pleased to share this reflection on the important messages we have heard during the 2021 World Alzheimer’s Month / Dementia Awareness Month, written by DAI board member, Julie Hayden from the UK.
Thank you Julie.
As we reflect on Dementia Awareness Month 2021, lets not forget the important messages we have received from each nation and the numerous organisations which have taken part.
Those messages include:
  • Dementia can affect anyone from any age bracket, cultural background or social standing. Few people living with dementia today ever thought it would come to them. Please consider how you would wish to be treated.
  • To be Dementia Friendly is fine, but being Dementia Inclusive is better. Involving us in all aspects of life, so affording us the same Rights that are enjoyed by others.
  • Showing love, respect and consideration whatever our level of dementia and however challenging our symptoms may be to you. We remain whole persons. We do not fade away or disappear, we just often become harder to reach, but it’s always worth the effort of doing so.
  • At the centre of all plans for us and discussions about us, please remember it is vital that we are part of that dialogue.
Let’s continue to work together.
So much more can be achieved if we develop a team approach.
No one organisation can do it alone and no piece of work has value unless it stems from the lived experience of people who themselves are diagnosed wth dementia.

A More Inclusive Public Transport System by Emily Ong

 

 

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

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

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

A More Inclusive Public Transport System in Singapore

By DAI board member and dementia advocate Mrs. Emily Ong

Image source: Emily Ong

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

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

The two efforts were;

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

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

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

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

 

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

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

 

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

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

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

Please donate to DAI today Donate

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

World Alzheimers Month DAI Webinar Series

World Alzheimer’s Month 2021 #WAM2021,  also known in some countries as Dementia Awareness Month #DAM or Dementia Action Week #DAW is almost here!

Lets’s all work together to make a difference.
#Collaborate #Cooperate #WorkingTogether

This year DAI has planned a series of webinars specifically focused on rehabilitation for dementia. We have done this, as people with dementia have been campaigning for the full suite of rehabilitative interventions for decades, and at last, we appear to be seeing small actions towards actually achieving this.

Last year, Professor Lee-Fay Low and A/Professor Kate Laver edited a book on Rehabilitaiton for Dementia. This year, the World Health Organisation has been working on their own Rehabilitation for Dementia Guidelines, so there is hope it will eventually make it into mainstream clinical and care practice.

Rehabilitation and Dementia #DAI Webinar Series 2021

  1. Webinar 1: Rehabilitation to maintain physical function, presented by A/Prof Michele Callisaya and Dr Morag Taylor
  2. Webinar 2: Living life to the full: rehabilitation of daily activities and leisure for people with dementia, presented by Associate Professor Kate Laver and Doctor Claire O’Connor
  3. Webinar 3: Cognition-oriented treatments for people with dementia, presented by Dr Alex Bahar-Fuchs and Dr Loren Mowszowski
  4. Webinar 4 Panel Session: The Importance of Rehabilitation for all People with Dementia, with panellists includng Professor Lee-Fay Low, PhD, Emily Ong, Lynette Rogers and Kate Swaffer

Rehabilitation for all people with dementia is a basic human right, and in this series, DAI aims to highlight why.

REMINDER

Reminder to register for the two webinars this coming week too, both very important sessions exploring new ways of managing dementia.

  1. How to make Alzheimer’s a rare Disease!, by Professor Dale Bredesen, M.D.
  2. Updates In Precision Medicine and Protocols for MCI & Dementia, by Dr Nate Bergman DO, MBA