Category Archives: Diagnosis

Wally Cox: Why I’m glad I found DAI…

This September, we celebrate Dementia Awareness Month 2020 #DAM2020  with a daily series of blogs, vlogs and podcasts, many of them from DAI members talking about why they are glad they found DAI. Many tell us that DAI is Life Changing.

On Day 1, we are thrilled to kick off our series with a video of DAI board member and support group co host, Wally Cox, and his wife and B.U.B. (Back Up Brain), Patricia, sharing why they are glad they found DAI. Thank you Wally and Pat. 

Please Donate to or Partner with DAI. 

John Sandblom: Improving Quality of Life

John Sandblom is a co-founder, Board member and the Treasurer of Dementia Alliance International (DAI). This is his keynote presentation at the opening Ceremony of the ADI Conference in Chicago. He shares the value of joining DAI, and of self advocacy.

“Improving quality of life for people with dementia” by John Sandblom

If you are watching this now, please consider donating to DAI. If you had been privileged enough to attend this conference and listen to John in persn, it would have cost you much more than the registration fee of more than $800 to attend the conference.

DAI is a 501 (c) 3 registered charity; a non-profit organization of people with dementia from 49 countries seeking to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life. Our activisnm for the human rights for all will continue.

Membership of Dementia Alliance International is free, and open to anyone with a diagnosis of any type of dementia. Join DAI here

Or you can subscribe to our newsletter or weekly blog, by registering your email.

International Day of Persons with Disabilities 2018

The World Health Organisation states Dementia is one of the major causes of disability and dependency among older people worldwide” (¬†2018).

It also now defines dementia is a condition causing acquired cognitive disabilities.

It is therefore important as an organisation, DAI acknowledges and celebrates this day, as our members, when first diagnosed (even if not visible in the earlier stages of dementia) are living with acquired cognitive disabilities.  However, as dementia progresses, our disabilities are likely to become more obvious, athough this seems to be the lens through which dementia is still only being viewed by health care professionals (in spite of initiatives to diagnose earlier) and many in the community (i.e. late stage).

Seeing dementia through the lens of disability helps us to claim our rights, under the Convention on the Rights of Persons with Disabilities (CRPD).

If you go to the United Nations website, you can read more about the theme of their activiteis today.  What is very relevant to people with dementia is they are focusing in the morning on Sustainable Development Goals, and in the afternoon on Accessible Cities for All: Smart and Inclusive Urban Planning.

This is relevant, in light of the global campaigns to make our communities ‘dementia friendly’, as what we want has little to do with being friendly, and everything to do with inclusion, and therefore access, including access to adequate health care, and disability support including rehabilitation (cognitive and physical).

On the second half of the page about today on the UN, it says:

“In the morning, the commemoration of the International Day of Persons with Disabilities will feature the¬†launch of the first UN Flagship Report on Disability and Development on the ‚ÄúRealization of the Sustainable Development Goals by, for and with persons with disabilities‚ÄĚ.¬†The publication will be launched by Mr. Elliott Harris, Assistant Secretary-General, for Economic Development and Chief Economist (UN DESA).

The opening ceremony will review the progress achieved, explore ways to further empower persons with disabilities and provide an overview of the international framework of the implementation of the 2030 Agenda for SDGs, in line with the Convention on the Rights of Persons with Disabilities (CRPD). The event will gather Member States, UN entities, civil society organizations, academic institutes and persons with disabilities.

In the afternoon, the commemoration will focus on ‚ÄúAccessible Cities for All: Smart and Inclusive Urban Planning‚ÄĚ as key elements to reduce inequalities and empower people to live in accessible, usable and friendly healthy environments. The event will explore SDG11 of the 2030 Agenda for sustainable development by providing space for Mayors, City Leaders to exchange innovative solutions on how to implement the SDGs and to exchange good practices about inclusive urban planning to promote the participation and well-being of their citizens of all ages and abilities.

Afterwards, the event will discuss smart inclusive environment and how to apply information and communication technologies to provide better infrastructure, quality services in a safe accessible environment.”

People with dementia have definitely become empowered, and are working together locally, nationally and globally to ensure dementia is ot only listed on websites as a condition casuing disabikites, it si a condition where we wil, at the time of diagnosis, be provided with adequate disability assessment and support to maintain independence for as long as possible, not just assessment of our Actvities of Daily Living (ADL’s), and which will also include rehabilitation.

Hello, my name is Jerry Wylie

On the final Day of the¬†#DAI¬†#Hello my name is¬†blog series for World Alzheimer‚Äôs Month¬†#WAM2018,¬†we feature Jerry Wylie, DAI’s Vice Chair and an advocate from Philomath, Oregon, in the USA. Jerry is a committed and very active board member, and supports two of our peer to peer support groups, as well as co-hosting our Action Group and wekly Brain Health Meetings.

Thank you Jerry, from everyone, for saying hello again here to support this series, and for all that you do for DAI and others. Jerry has also set up a local face to face support group where he lives, which now has more than 20 members. We are very proud of him, and grateful for his hard work. This is his story.

It is a matter of our Civil Rights

DAI & Jerry Wylie © 2018

DAI‚Äôs vision: ‚ÄúA World where people with dementia are fully valued and included.‚ÄĚ

Help us support people such as Jerry. Become a DAI Sponsor or Associate today.

Hello, my name is Nina Bal√°ńćkov√°

Nina (right) and Eva at the Memory Walk adter the 2013 ADI conference in Taiwan. Image source: Kate Swaffer

On Day 20 of the #DAI #WAM2017¬†#Hello my name is¬†blog series, we share long time DAI member and friend from the Czech Republic, Nina Bal√°ńćkov√°’s story. Through their personal stories, our members want to raise awareness of dementia, and to highlight that each persons lived exerience of dementia is highly individual.

By speaking out, people with dementia are individually and collectively increasing the worlds understanding of living with dementia, and also hope to break down the stigma, myths and discrimination still being experienced. Thank you Nina for allowing us to share your story here.

Raising awareness and finding humour

Hello, my name is Nina Bal√°ńćkov√°. I am from the Czech Republic.¬†I am proud to be a member of DAI for several years.

I was diagnosed with Alzheimer’s (Young onset) in 2007 at the age of 49. It took me several months to accept this disease. When I realized that my life can continue, though in another  more difficult form, I decided to enjoy every day I will be here, on the earth, with my family.

We did not know about Alzheimer’s during my mom’s lifetime. Only after her death did the doctor tell me that she had the last stage of Alzheimer’s. It was one of the reasons why I decided to speak up about dementia.

I wish to raise awareness of dementia for many people. So, in 2009 I started to organize discussions named My life with Mr. Alzheimer.

Then I became a member of European Working Group of People with Dementia (EWGPWD), and It has been my pleasure to work with this group of dedicated advocates. I very recently stepped down as a member of the EWGPWD. I am also grateful I was able to speak on the ADI conference in Taipei. 

Thanks to my family, to my strong will and strong faith, support of my church and many friends I have been fighting Mr. Alzheimer persistently for 11 years.

Even though after my husband had been diagnosed with Alzheimer’s last year, it has been very difficult, we still try to enjoy our lives.

The Potato Soup 
Given my lack of taste, smell, poor estimate of the time, distance and quantity, cooking is becoming quite an adventurous matter for me. And I did not even mention the forgetfulness. One autumn day a few years ago I decided to cook potato soup. After the vegetables was ready, peeled, scraped and cut up, I prepared a nice dark roux. Mushrooms, thanks to my daughter, I also had enough. I guessed that I had something missing. But hat was it? Garlic? Marjoram?

That day my friend Eva came to visit us. The soup seemed to look pretty good and was nice and thick. As my friend appeared, I immediately gave her a taste to find out whether it is necessary to add more garlic, salt or marjoram.
My husband, my friend Eva and I, we had a dinner together.

When my husband almost finished, he innocently remarked that it just did not have any potatoes. I thought for a long time and then burst out laughing: “Well, you could not find it, because I forgot to put potatoes in it” . For a long time we were laughing with my friend: potato soup without potatoes ….

Nina Bal√°ńćkov√° ¬© 2018¬†

DAI’s vision is “A World where people with dementia are fully valued and included.”

Help us support people such as Nina. Become a DAI Sponsor or Associate today.

Hello, my name is Dennis Frost

On Day 13 of the #DAI #WAM2018 #Hello my name is blog series, we feature DAI member Dennis Frost from near Kiama in NSW. Dennis speaks to us candidly, sharing his story of being diagnosed with a younger onset dementia, and the advice given to give up work, and that he may have a only few or maybe up to 20 years to live! It is a common story, as this series is highlighting.

Dennis also talks about the stigma, and the reactions of others, and that the stigma and often hidden social barriers are often worse then the dementia. He also shares how meeting others with dementia has helped him to live more productively and positively with dementia. Thank yo Dennis. for sharing your story with us.

Dementi Alliance International &  Dennis Frost © 2018

DAI’s vision is “A World where people with dementia are fully valued and included.”

Help us support people such as Dennis. Become a DAI Sponsor or Associate today.

Hello, my name is Jeff Borghoff

On Day 12 of the #DAI #WAM2018 #Hello my name is blog series, we feature new DAI member Jeff Borghoff from the US. This series is not only about raising awareness of the many lived experiences of dementia, it is highlighting the challenges, as well as the reality that so many people continue to live positive lives, alongside dementia.¬†Thank you Jeff for allowing us to share your story; everyone at DAI, and the global dementia communtiy is helped and educated through you inviting us into you and your family’s world.

Dementia does not define me

Image source: Jeff Berghoff

Hello, my name if Jeff Borghoff, and with my wife Kim, we reside in Forked River, New Jersey with our three children. I was diagnosed with younger-onset Alzheimer’s disease in 2016 at age 51. During my career, I was a software architect and developer responsible for the design, implementation and project management of technical solutions to help companies solve document-intensive business challenges.

Several years prior to the diagnosis, I experienced changes in my ability to recall information. Although my spouse, Kim was noticing these difficulties at home, the issues were predominant in my professional life where I experienced increasing difficulty with problem solving, managing tasks and providing appropriate supervision to his team.  Therefore, I approached my management team and asked for an alternate position with less responsibility. However, even in this new role, I still found it difficult to manage my duties.

Shortly thereafter, I experienced a serious stomach virus which led to a brief hospitalization. A series of physical neurological symptoms, including facial twitches soon followed which resulted in multiple visits to specialists, and I was still experiencing changes in my memory, but also began to notice differences in my balance and speech. After six months of testing, which included CT, scans, MRIs, spinal taps and neuropsychological evaluations, I was diagnosed with younger-onset Alzheimer’s disease. My father is also living with the disease.

Kim was the first person to receive the news of my diagnosis. She immediately called me and we met to discuss the diagnosis at a nearby park. Although I had been anticipating a serious diagnosis and researching Alzheimer’s disease extensively, I was still stunned and saddened by the news. Together, we went back to meet with the neurologist to discuss next steps, including planning for the future.

Together, we decided to share the diagnosis immediately with our three children. Their reactions ranged from devastation to anger and sorrow. After sharing the diagnosis with others, we have found most to be sympathetic, but often surprised that someone of my age could be diagnosed with younger-onset Alzheimer’s disease.

We began planning for the future by meeting with an attorney and making legal and financial plans, including powers of attorney and applying for Social Security Disability Insurance (SSDI). We also scaled back on our spending and invited my parents to live in a converted two-car garage in-law suite. My parents are also helping to pay off the home mortgage as they prepare for their future cost of living.

After finding the Alzheimer‚Äôs Association online, together with my family we created our ‚ÄúWalk To Remember‚ÄĚ Walk To End Alzheimer‚Äôs team to raise funds for the Alzheimer‚Äôs Association. ¬†I also enrolled in the Medic Alert + Alzheimer‚Äôs Association Safe Return¬ģ program and am enrolled in a clinical trial through the Alzheimer‚Äôs Association TrialMatch¬ģ.

As a participant in the Alzheimer’s Association 2016 National Early-Stage Advisory Group and Early-Stage Ambassador for the Delaware Valley and Greater NJ chapters, I help raise awareness of younger-onset Alzheimer’s disease and the value of early detection and diagnosis.

‚ÄúI am not letting this disease define who I am and what I do on a daily basis. I am doing everything I can to raise awareness.‚ÄĚ

Copyright 2018: Jeff Borghoff, Living with Alzheimer’s Disease

Help support people such as Jeff. Become a DAI Sponsor or Associate today.

Jeff joined DAI this year,  and is involved in many other organisations and personal things, including managing his own website.

– Alzheimer’s Association National Early-Stage Advisory Group
РEarly-Stage Ambassador РDelaware Valley & Greater NJ Early Stage Advisory Council
– Alzheimer’s Congressional Team (ACT) Member

Hello, my name is Maria Turner

On day eight of DAI’s World Alzheimer‚Äôs Month #WAM2018¬†series of #Hello my name is blogs, we share one of our USA members stories of living with dementia, and the presentation she made on Day two of the ADI confernce recently with her amazing son Rhys Dalton.

Thank you Maria and Rhys for allowing DAI to publish this during September to help us raise awareness. Together with Rhy’s fiance Kayla, you are an awesome team, and we love and are inspired daily by you all.

This is an example of Maria using her voice. Their full speech notes are available here…

Mother and Son: The Impact of Younger Onset Dementia (YOD)

Dementia Alliance International, Maria Turner & Rhys Dalton © 2018

Please donate to DAI, so we can continue to support members like Maria and her son Rhys.

DAI supports Canada to develop a National Dementia Plan

 

On May 14-15, 2018, a great number of DAI members, and others with dementia attended the National Dementia Conference, hosted by the Canadian Government. I was privileged to be invited and to give a short speech, and was honoured to be on the same program as Mary-Beth Wighton and Phyllis Fehr.  Their speeches will follow in another blog very soon.

One of the highlights for me was meeting so many of my ‘online’ friends in person, and many of us said goodbye with joy, and tears.

The photo above is of the conference  delegates living with dementia, and the government officials and staff who organised it, including the Canadian Minister of Health, Ginette Petitpas Taylor, MP, who attended on both days.

She is also attending the World health Assembly in Geneva this week (we met in the corridors of the UN), so who knows, I may have an update or even a ‘selfie’ to post here!!!

We are extremely proud to announce here that Mary Beth Wighton, one of the founders of the Ontario Dementia Advocacy Group (ODAG), and current Chair was selected, along with Jim Mann, to be full members of the Ministerial Dementia Advisory Group.

Both are members of DAI as well. We have no doubt they will influence the national plan and if necessary, forcefully ensure it is embedded with rights for all. We congratulate them both, and all people living with dementia in Canada for their passion and drive.

Clearly, the most important elements of any National or Local Dementia Strategy or Plan are our basic human rights.

  • Human rights
  • Disability rights
  • Access to a timely diagnosis
  • Access to care and support that promotes independence
  • A new post diagnositic care pathway or ‘model of care’ ¬†that is a blend of health care and disAbility support
  • Rehabilitation assessment and support, at the time of diagnosis, for all people with dementia, including speech pathology
  • Disability assessment and support at the time of diagnosis
  • Access to education and care for our families and care partners
  • Education for everyone working in or impacted by dementia
  • Moving away from any form of chemical or physical restraint
  • National Risk reduction strategies

For me, this includes full support for all people with dementia to attend (any event or conference) financially, to ensure full and equal inclusion and participation, as well as full support for our cognitive and disabilities. This is a legal right, not just a human right.

The following are my speech notes and as my ‘brief’ was rather limiting, I decided to broaden the elements of my speech:

Slide 1: People with deMEntia in Research Ethical Considerations 

Thank you for the invitation to join this conference, and the panel today.

Slide 2: Global Overview of deMEntia

  • 50 million people living with dementia
  • 1 new diagnosis every 3 seconds
  • The cost of dementia is estimated to be 818 billion dollars
  • The majority of care is provided by unpaid family care partners
  • Dementia is the 7thleading cause of death globally
  • In Australia, it is now the leading cause of death in women, and the 2ndleading cause of death of all diseases
  • Dementia disproportionately effects women, in terms of the numbers diagnosed, and the number of unpaid family care partners
  • Stigma, discrimination, the deeply entrenched myths about people with dementia, and the

Overview of DAI, which was launched on January 1, 2014 by 8 people with dementia, including one from Canada:

  • Membership now spans 47 countries
  • The services and support available to members and the broader dementia community is provided free for members, and on an annual budget of less than $50,000 USD ‚Äď for the first 18 months, DAI was completely self funded
  • We still self fund much of our human rights and global work, including supporting countries with their national dementia plans, such as my trip to Canada
  • Global impact on the WHO Global Dementia Action Plan, human rights and dementia being seen and treated as a disability ‚Äď before we started advocating, there was little more than rhetoric about rights
  • DAI provides significant information and support to members within their own country Dementia Advisory Groups, such as the Ontario Dementia Advisory Group
  • Our members now need Alzheimer‚Äôs Associations and other organisations to partner with us, as Alzheimer‚Äôs Disease International has, to complement the services and support they provide

Slide 3: Living with deMEntia

When I was diagnosed in 2008 at the age of 49, the advice I was given was to go home, give up work, give up study, get my end of life affairs in order, and to get acquainted with aged care

The challenges of a diagnosis of deMEntia in 2018 are much the same! Most new members of DAI and others I meet with dementia around the world tell me nothing has changed. Both Mary-Beth and Phyllis have told us this was true for them as well.

Human rights and deMEntia

  • It is a breach of our most basic human rights not to be supported to live as positively as possible with dementia
  • It is no different our care partners and families receive little or no support
  • It is a breach of our human rights not to be provided with post diagnostic support that includes rehabilitation, including speech pathology when we are first diagnosed for speech and language impairments, not at the end of life when we can‚Äôt swallow and are almost ready to die
  • The WHO states dementia is the leading cause of death and disability in older people ‚Äď yet so far, service providers and health care professionals do not actively support our disabilities with strategies to maintain independence for as long as possible
  • As a mature age student at a university when diagnosed, I was proactively supported to keep living my life, with proactive disability support, as my children would have been if they were living with any type of disability
  • It is imperative there is nothing about us, without us; including in research

I trademarked what happened to me 10 years ago as Prescribed Disengagement¬ģ.¬†Unfortunately, I have hundreds of examples of anecdotal evidence this is still happening to the majority of people after diagnosis today.

It is a human rights issue that must be addressed in all national dementia plans and strategies, in the provision of health care, and in policies and services. I was the first person with dementia to speak as an invited keynote speaker at the WHO, which is a specialised agency of the United Nations in March 2015. Since then, much has happened, including the unanimous adoption of the WHO Global Dementia Action Plan: A Public Health response to dementia 2017-2015. The only truly accountable section of this Global Dementia Action Plan, adopted at the WHA in May 2017 are the cross cutting principles. I personally believe Taiwan has led the way; Canada could be next, if you get it right now.

Redefining responses to deMEntia

  • Janssen Pharmaceutical developed the term BPSD, and funded the first guidelines; they invested a lot of time and money promoting this through clinicians and researchers
  • This paradigm has likely caused worse care, ensure we do not provide person centred care, and resulted in chemical and restraints being used to manage the responses to dementia or responses to poor care that people with dementia express

Slide 4: Human Rights, Research & deMEntia

Ethical considerations of involving people with deMEntia in research clearly include causing no harm to research participants. Historically, research was done about us, through our care partners, unless it was pure scientific research for a cure or a disease-modifying drug. It is still very difficult to get ethics approvals when including people with dementia I research, which I know from personal experience as a ‚Äėyoung‚Äô researcher.

For example, in an Annual Report on stigma published in 2012, only 7% of people with dementia were included in the research participant cohort ‚Äď the rest were families, hence this report does not report on the stigma we feel, but what other believe we experience, which is significantly biased by their own suffering.

Managing the gate-keepers continues t be a challenge, as the paternalistic views about us, and the subconscious beliefs and attitudes about us not having capacity or sufficient cognitive ability to be involved in society, let alone in research, is endemic. Even today, most decisions made for or about us, are deeply influenced by people without dementia. In my role as the Chair and CEO of Dementia Alliance International, I can tell yo we receive on average, 5 requests per week from researchers to engage with our members, as they cannot get either the family members to agree to involve us, or the advocacy organisations to share the opportunities for participatory research.

The wellbeing of research participants with deMEntia should be important to everyone, and especially if a trial ends or fails, no care is provided post trial for the research participants. DAI members report that when a trial is either stopped, or comes to an end, they are ‚Äėdropped like hot pancakes‚Äô. This is unethical, and could be seen as a human rights issue as well.

People become involved in trials, not only in the hope of finding a cure for themselves, but for future generations. Research for a cure, but even more so for better care, and for risk reduction or slowing the progression of dementia are of great interest to most people currently diagnosed. We need to be supported emotional, physically and financially to be involved in research, and we need research opportunities made publicly available to us. We also need pharmaceutical companies and the media to stop selling false hope!

Involving people with deMEntia in National Dementia Plans and Strategies

Finally, in everything you do, I implore you to SEE THE PERSON, NOT ONLY THE DEMENTIA. We are human beings, with a condition causing changing capacity and functional disabilities.

Given the right support, and equal opportunities to all other persons with an acquired disability, we have a lot to contribute, not only to research, but also to society as a whole.

Thank you.

Kate Swaffer, DAI Chair, CEO & Co-founder

My slides can be downloaded here: Kate Swaffer_National Dementia Conference_Canada_May_2018

 

 

The economic and human cost of dementia

There is no doubt there is an enormous economic cost to dementia, not only to the person diagnosed, but also to their care partners, families and support persons (if they are lucky enough to have any), and to the health care sector and our governments. Our latest graphic clearly highlights this, and is based on data from the World Health Organisation (WHO) website published last year.

Apart from the economic cost of dementia, there is a significant human cost to this disease, and you can find many blogs, published journal articles, media stories (print and digital) and books on this, written by professionals, academics, care partners and yes, even many people with dementia.

Too often, the person is not seen, and only the symptoms are. Our deficits are focused on, and we don’t receive appropriate disability support nor recognition for the assets we have retained. These are often completely ignored. It is why we also campaign globally for our human rights for better support and services. We must also be supported to live more positively with dementia, from the time of diagnosis.

One of DAI’s goal is to empower other people with dementia to live more positively with it, and as such, try and reduce some of the human cost of dementia. In doing this, we promote engagement, peer-to-peer support and participation at events and educational webinars, albeit mostly online, for our members and also for the wider dementia community.

Most of our members, when they first join DAI have been advised to get their end of life affairs in order, and often, even to choose a respite day care centre and nursing home. When that happens, most people (and our families) spiral into a dark and depressing place, and become fearful and afraid of what lies ahead.

Jerry Wylie, our Vice Chair made a plea on Facebook on March 31, 1:30 PM, as follows:

“Will you take the time to read this to the end? It‚Äôs is not about me and never will be….¬†I wake up every day praying, that what I managed to do yesterday might make a difference in the ‚Äúlived experience‚ÄĚ for the ‚Äúpeople‚ÄĚ being diagnosed with dementia today and tomorrow.

Globally there is:

  • 1 diagnosis Every 3 seconds
  • 1,200 ‚Äúpeople‚ÄĚ diagnosed Every hour
  • 28,800 ‚Äúpeople‚ÄĚ diagnosed Every Day
  • 876,000 ‚Äúpeople‚ÄĚ diagnosed Every Month
  • 10,512,000 million ‚Äúpeople‚ÄĚ diagnosed Every Year

Unfortunately, ‚Äúpeople‚ÄĚ, society and governments seem callous and unwilling to support simple, cost effective improvements to our ‚Äúlived experience‚ÄĚ.

They prefer spending Billions upon Billions every year on finding a magic cure, whilst the largest pharmaceutical companies in the world have abandoned research due to their failure to get positive results.

In the meantime, nearly nothing beyond lip service is being done or invested in what actually helps us that are diagnosed.

The result is Needless & Unnecessary suffering for countless millions of ‚Äúpeople‚ÄĚ.

Dementia Alliance International ‚Äúgoes beyond lip service‚ÄĚ and is changing ‚Äúpeoples‚ÄĚ lived experience every single day but, nobody seems to want to help us financially. I guess it‚Äôs because we all have Dementia?

I imagine nearly every person who took the time to read this post can afford to donate ‚Äú$10.00 A MONTH‚ÄĚ so we can reach and offer weekly peer to peer support to the 10,500,000 million ‚Äúpeople‚ÄĚ diagnosed every year.

Here is your opportunity to help us help these people! Please click on this link and give as generously as you may.¬†If you don‚Äôt, who will?¬†$10.00 per month.”

THANK YOU JERRY FOR OPENING YOUR HEART TO US ALL