Category Archives: Dementia

“An evening with DAI”

Congratulations to DAI members in the USA, David Paulson, Maria Turner and John Sandblom for being invited to host and speak at this great event. Read the Press release below for information.

Press release

Please join us onMonday, October 1st at 7pm, for an open event hosted Oak Crest Retirement Community:

New Directions in Living Well with Dementia: An Evening with DAI“.

Venue: 2944 Greenwood Acres Dr, DeKalb, IL 60115 USA

Dementia Alliance International (DAI) is a registered 503 (c) (3) charity in the United States, which was launched by eight people with dementia from three countries on January 1, 2015, and now has members in 47 countries.

DAI is an advocacy and support group seeking to represent the 50 million people currently living with dementia, and provides a number of free services and supports for members and their families, and education for the wider community. One person is diagnosed every three seconds with dementia, and it is imperative as a society, we find ways to support people to live more positively with it, and reduce the shame, stigma and discrimination most experience after a diagnosis.

Members of DAI will be speaking at this event, sharing not only their stories of being diagnosed with dementia, but how they have found ways, through DAI, not only to live positively in spite of it, but to empower others to do the same. They will share the power of peer-to-peer support, and highlight some of the outcomes of their global activism for the human rights of all people with dementia.

This is your chance to learn first hand about dementia, from the inside out.

 

People with Dementia have other health issues too…

Christine Thelker, Canada

A member of DAI, Christine Thelker who spoke brilliantly in Chicago recently wrote this for us to share with our members today, as some mbemers, or their partner or amilies are currently experiencing significant non-dementia health issues, some very life threatening.

Christine speaks:

“There are the days and moments that people don’t see, the times one of our Dementia family struggles with the health challenges that crop up or when they have to watch their own loved ones cope with health challenges which leave their health vulnerable.

It is in those times that if the world could see, they would see a family of people from around the globe, stand together to offer support, prayers, love, to wrap those in need in a cloak of love and protection, full of compassion, under standing the special challenges, fears and decisions, never is there a question or point of if one is making the right or wrong choice, only the support and love to help them with whatever their choices are, because we “get it”, this speaks volumes to the very special organization that Dementia Alliance International and it’s people are.

Language / Country/ Time Differences are not barriers, we are all so intimately connected there are no barriers…and some days it takes us all standing together to carry the worry and pain in our hearts…. today please pray for all of our warriors who are so bravely fighting challenges over and above our normal ones.”

Christine Thelker © 2018
You can follow her on inspiring Facebook paged called Chrissy’s Journey to read more of her daily thoughts on facing up to life with dementia as positively as she possibly can.

Dignity & respect still lacking in dementia care

Today, we are sharing a post of a video made by our Chair, Kate Swaffer in 2013, which highlights too well, what almost all speakers with dementia in Chicago shared. It is rather disturbing that little has changed for people newly diagnosed with dementia in the last 10-20 years, especially at the time of diagosis, and that the lack of education of health care professionals in dementia is still so inadequate.

Some of the terms Kate uses, are not what she would say today, as like everyone, even people with dementia can learn, as well as change their minds. But, too often, dignity and respect is still lacking in dementia care, in hospitals and in residential care.

https://www.youtube.com/watch?v=8yIOquZM8WM&t=476s

“This video interview was made for the recent South Australian Dementia Forum held on 5 December 2013. At this event, a large number of experts, health care professionals and consumers, including carers and people with dementia attended to listen, learn, and workshop about how to improve the care of people with dementia and mild cognitive impairment in the acute hospital setting. I hope it highlights some of the challenges we currently face as patients, and assists in helping others know how we would like to be treated, in particular with the same education about our disease as any other illness, and with the same respect and dignity as any other patient. Sadly, the experiences I talked about really happened. Opinions are my own.”

Kate Swaffer © 2013

Kris McElroy, 33 years old, shares his story of dementia

This week DAI features a story of one of our younger members, 33 year old Kris McElroy. As an organisation, we love supporting him, and really enjoy his company in our support groups and online meetings and cafes.

Some of us with younger adult children also find it a little confronting, as we cannot imagine how we would feel if it was one of our own adult children. This must also be how older parents feel of their adult children, diagnosed in their 40’s and 50’s.

Thanks to DAI board member and co-founder of ODAG, Phyllis for supporing Kris to share his story with us all. He is being profuled for the Glboal Disability Summit in London soon as well. We lovingly call him ‘Smiley’, as he has a truly radiant smile, and is a joy to be around.

Thanks Kris, from everyone at DAI for sharing your deeply personal story.

Kris McElroy: My Dementia Story

These days it’s easier for me to remember my birthday than my actual age. October 31, 1984. My cognitive abilities have changed. Numbers get to me the most. I can state a date or the time, but I struggle with it’s meaning especially in relationship to other things such as a how much time I have to get somewhere or return a form. Even when I am trying my best and I think I got it, but yet somehow I frequently seem to miss something and I just can’t figure out what it is.

People these days see me walking with my walker, then here me speak and it is assumed I am more likely to have a caregiver next to me than a friend; that I was born this way and am fortunate if I graduated high school; and that I can’t answer my own questions. I know the look and awkwardinteraction all to well of people not knowing how to interact with me. It’s not like I haven’t spent my entire life trying to get people to see my abilities not my disabilities. I was born with a progressive neuromuscular disorder – still the exact type and cause unknown. It effected me in a way that was visible every time I spoke and moved. It is still amazing to me how stigma; stereotypes; and discrimination mixed with lack of awareness, knowledge, understanding, inclusion, and accessibility impact one’s self image and quality of life.

For the longest time I thought for me to be visible, to have a chance, to be seen as human; I had to do my best to be as “normal” as possible. Since, I couldn’t hide my disabilities on the outside, my mind was my gift. My mainframesuper computer that could keep track of everything, my coping mechanism, and also became my hope for the future. Once I had a PhD, someone like me could make it in this world. A PhD would make my disabilities disappear and allow people to actually see my abilities first. It was always on my radar that I won’t have a voice until I earn my PhD. Either a PhD or find a cure for my disabilities. Never once was dementia on my radar. Never once did I think I my mind would change how it is able to function within the world around me. Why would it be, everywhere I looked it was described as the stereotypical old persons disease. I had defeated so many odds and I earned B.S in Psychology, a M.S in Multidisciplinary Human Services. I was in my second year of my Ph.D with a 3.8 average. I had challenges all my life, but I always bounced back or found a way. Until the challenges started becoming more noticeable and it took longer navigate things that were once quick and easy.

I showed signs of what was called “mild to moderate neurocognitivedisorder” in 2015. I don’t remember how old I was, but I still have the report from the testing. Yet, as with most things, the doctor explainsthe results, gives a copy, and then you are sent on the way to continue life.  So, I did. I was used to this. What I wasn’t used to was the changes I experienced in spelling, ability to edit, ability to comprehend things, keep track of things, navigating, and the level of confusion. They said I was just young, it was just stress, and with rest it would go away. My whole world was changing, and the challenges were increasing. I didn’t know what was happening to me, it was frightening, and it was effecting my functioning. So, my neurologist referred me to testing again. I remember my sister talking about her concerns and mentioning sundowners to the neuropsychologistdoing testing again last summer, the doctor laughing, and then the doctor’s apology and deep concern when she shared and explained the resultsin June 2017, the results that the test results show I have dementia.

Since then, it has been a struggle to get people to believe the diagnosis or to know how to help, and how to find my way – a new way of life.When trying to get services it felt like I had to give up my quality of life in order to have help. That was a very stressful and frustrating process. The only other option given was to go into an assisted living. My sister has been the one person there constantly through it all and it has taken a toll on her too. We both just wish there were more resources, options, services, support. Her unconditional love and support a bright light in my everyday new world.

It’s coming up on a year since the diagnosis of dementia. It is still not clear which type of dementia it is or if it is separated or connected to my other medical conditions. Life looks very different from what it used to. People have come and gone, new faces have brought a sense of joy and hope never imagined at the time of being diagnosed. It was hard to know what to do, what to feel, how to move forward. I spent a lot of time trying to “keep up with the joneses”, but each time that made my symptomsworse. So, I traded in pursuit of my PhD for discovering new ways to help others, engage in my community, explore my talents and share my gifts.Alongthe way it became about just finding a way each day to take it step by step and live well each day whatever that may look like at any moment within any day. Quality of life, according to what that means to me. So, I have adjusted and adapted many things, and as challenges arise or shift, adjusting and adapting occurs time and time again.

Still as with other medical conditions and other things across my life, dementia is a part of my story, but it is not all of my story. It is a part of who I am, but it is not all of who I am. My age does not determine whether I have dementia. My age just means at this point on my life journey, I am a 33 year old chef, artist, writer, volunteer, educator, Special Olympian and athlete, with dementia and other health conditions who has good days and bad days determined to live life well and each moment to the fullest.

 

 

 

One couple shares their story of caring

One of DAI’s members, Valerie Schache, from Ballina in New South Wales, Australia and her husband share their story of supporting each other.

Val was her husbands care partner. Then she developed dementia, and he has also had to become hers.

Caring and supporting someone you love with dementia is uniquely challenging even if you are well, but what’s it like when you yourself also need care, and that person now has dementia? We thank Val and Lawrie for sharing their unique and moving story so openly with  us all.

Who cares for whom?

“Val 66 and Lawrie Schache 70 who live near Ballina NSW Australia  have been married 47 years. He is a Vietnam Vet with PTSD and a below right elbow amputee 30 years ago and Val has been his care partner since 2004.   Who cares for whom?’

Already five years ago ‘You are losing the plot’ and ‘Valerisms’ became  ‘You are DEFINITELY losing the plot’ to ‘Valzheimers’ until a diagnosis of dementia Aug 2015 – a shocking relief –  Aricept helped but Val being Val kept searching for answers.

The latest outcomes with a nutritional functional medico supervising precise personalised reCODE protocol has made significant improvements. Not sleep apnea, but  a CPAP machine nightly is overcoming very poor O2 sats – the dementia has damaged the O2 driver at rest. Comprehensive allergy testing has found extremely high  IgE values not related to diet but Val has  stopped wheat and soya. VitB12 injections and quality sleep for the first time in years plus vigorous exercise has significantly reduced hypomania  LBCRS was 8.5/10 now 1.5/10. What was thought to be a ‘mixed’ is now classic Toxic Alzheimers 3 – hardest to treat because every toxic element has to be removed for a person to stay well.   Just this week the frugal husband has said the large sum of money  spent on answers for Val has been worth every cent.  Most disciplined we have both EVER been to stay well. The spin off is Lawrie has beaten prostate cancer and he is cognitively sharper with a similar protocol.    

They have 3 married children and 8 grandchildren and are active grey nomads after retiring – Val as a physiotherapist – acupuncturist farmer and Lawrie a ‘Jack of all trades’ engineer/farmer.”

With Lawrie finding writing very difficult Val interviewed him.  

What’s it like to be Val’s care partner?

“‘Its a pain in the arse! – I want my old Val back – the one who is calm, versatile -not volatile;  sensible and doesn’t argue back- I know it wont happen this side of God’s eternity but it is a daily grief which I manage some days better than other. I’d sooner not be her guardian/  carer but I’m her lover and her ‘ bestment’- I’ve invested 48 years with her and the best at it  – My marriage vows stand, so I’ll stick by her regardless of where she is or how the disease affects her. PS – this month has a calmer Val with increasing intelligence. 

Know the enemy! I’ve learnt as much about the disease as I can and we try to go  all the important appointments together — we are a good team.  I’ve been proactive e.g. got a house cleaner – meant strangers in my castle and ‘WAY out’ of my comfort zone. 

I’m now her personal manager -‘ Have you taken your tablets – critical as she becomes lost and a zombie if she misses.. Got your wallet, phone, keys, your shoes, your choir bag? – Have your remembered all you appointments?  Our phones are synchronised so I know where she is and can initiate a ‘Find my phone alarm’ if she’s not where she said she would be because in  May2015  she didn’t know who she was for eight hours ?TGA.   I want her to be independent – free to visit her friends choir/line dancing church etc. to do her Dementia Advocate work locally nationally and internationally but still safe. – I’m very proud of her actually. 

Money has been a BIG ISSUE – she suddenly becomes an impulse buyer. I organised her own key card with a budget and when that is spent – that’s it! – Thank God that’s improved.

Instead of arguing I retreat to my man-cave. I’ve learnt to say less, hug more and put her  in front of the air-conditioner to cool down.. I’ve learnt to use my kind words, to let her vent without having to ‘FIX IT’ and we always speak respectfully and lovingly to each other. 

Fears for the future with dementia being a terminal disease?

Becoming teary Lawrie continued  ‘She may be institutionalised and wont be fully in my life and I cant bear the thought if she cant remember me, BUT I will always keep visiting as I know who she is — 

In the meantime I help us to suck the marrow out of life – revisiting old passions/places, taking her for drives on the beach,  actively keeping her grounded and away from toxic situations.  Spiritually,  I make sure she watches the Church TV with me and I pray for her constantly including for healing of all aspects in Jesus Name. 

I want my old Val back – but I love her regardless.. that’s what I vowed 47 years ago and she is my best mate… [ we cried and hugged for a long time ] “ 

Val shares her story

“I’ve known for years bad stuff was happening but I kept changing diets and IGNORED them – I sold my ‘complex pain’ acupuncturist physiotherapy sole practice in 2005 after 32 years and then became a ‘silo manager ‘and ‘adventure Grandma’  until the wheels fell of big time in 2015.  I felt vindicated when dementia diagnosed. I’m a REAL dementia expert now over 50 years observation including specialist consultant for a decade in a closed dementia wing and continue to walk the dementia journey from the inside out.

I’ve always stood my ground in the medical world,  having the peer respect of over 25 GP’s and a dozen specialists all genre as pain like dementia is no respecter of persons.  I love science and have a burning need to know. I’ve always given back and I take my dementia work very seriously;  willing to pioneer a future and a hope for an early dementia diagnosis and stalling the epidemic. Cognoscopy’s at 45 to be routine.

I say: Its no scarier than a Type 1 diabetic diagnosis – both terminal BUT – find early treat aggressively – reCODE and follow YOUR daily protocol assiduously and stay well and included.  Confound the ‘experts’ like dozens of us are doing in many countries through DAI Dementia Alliance International enablement with Webinars, Zoom, connect groups and a Health Hub. I’m a research development resource person with DAI –  ‘Knowledge is power’ 

With dementia I have to SLOW down – focus on the one matter at hand -‘concentrate Grandma’ -get enough SLEEP – I learn strategies from a Vietnam Vet counsellor which I share with family and friends to help me stay in control-always  educating people. I have learnt to humble myself and accept the considerable amount of help I need graciously and thankfully.  I need to keep the daily severe PAIN of the Lewy Body type  dementia under control. With the Anterior Temporal Lobe bilateral deficits I have a ‘savant’ type of brain- Ask me a question? -I will tell you the answer- loudly, coarsely and you may hear more than you want to know — That’s cleared out my address book. I still have family saying you don’t have dementia; but if they support Lawrie its OK — Being under the integrated functional nutritional specialist liaising closely with my GP has meant even improvements in my latest MRI and fine ischaemia like widespread chalk is being addressed from multiple prongs. 

Re the future – I have ALL the legalities of a Living Will Guardianship Power of Attorney  in place for us both.. My name is down at the home of my choice and I have respite and permanent accommodation in place if/when needed. But I’m now the best I’ve been in ten years according to bestment, but life has no guarantees for anybody. I have my full drivers licence back with an annual medical review.  We manage life very well.” 

We choose to live exuberantly beyond dementia Val has dementia -but it does NOT have us!

 

 

What’s a Dark Fog or Black Cat got to do with Dementia?

 

 

 

 

 

Please join us for our next “A Meeting of the Minds” monthly online Webinar “What’s a Dark Fog or Black Cat got to do with Dementia?” presented by DAI Secretary and her husband, Eileen and Dubhglas Taylor. DAI wishes to thank them for their willignness to share with us on this interestign and important topic.

  • USA/EU/CA – Wednesday July, 18  2018
  • AU/NZ/JP/ASIA – Thursday July 19, 2018

REMINDER: It is ONE EVENT,  in numerous time zones.

About the Webinar: Eileen Taylor, DAI Secretary shares her experience of what it is like to live with dementia in a unique way by showing how she has learned to externalizeher dementia by seeing it as separate uninvited entity such as a Dark Fog. She and husband, Dubhg Taylor are interested in feedback by exploring this concept with people living with dementia to discover their opinions in a focus group.

Externalizing is an effective communication tool for helping people living with dementia and their families to understanding the daily frustrations, challenges and victories in this journey. This presentation explores the benefits of seeing dementia as a separate entity by externalizing it and lessening the potential for interfering with relationship.

Register here…

 

‘Tackling Dementia – It’s Everybody’s Business’

DAI is proud to support Alzheimer’s New Zealand today by promoting their upcoming biannual conference.

Alzheimer’s New Zealand is a member of our strategic partner, Alzheimer’s Disease International.

Although DAI is regularly asked to promote conferences, if we did this for every dementia related conference in the world, our site would be transformed from one for people with dementia (our members), into a global confernce program, so instead, we limit this to ADI members only, as requested.

DAI also heavily promotes the attendance  of members and their care partners to attend ADI and ADI member conferences, and does quite lot of fundraising to support attendance. It is wondeful that Alzhemer’s New Zealand have found a sponsor the the second time so that registration for peoplewith dementia and thei care parter is free again.

Alzheimer’s Scotland managed to do this for their conference this year as well, an important step to ensuring equal and full inclusion of peoiple with dementia, most who are no longer working due to the disease, or the stigma and discrimiantion dementia brings with it.

We ask that you please consider attending this very important conference, which is only held every two years.

‘Tackling Dementia – It’s Everybody’s Business’ is the premier conference focused on dementia in New Zealand.

The Conference is an opportunity to engage in a multi-sector conversation on how services for people with dementia can be transformed to reflect a world of more choice, flexibility and quick access to support; and to harness the best insights and knowledge from a range of sectors that can all help New Zealand meet the dementia challenge.

Abstracts are up to 250 words in length and if accepted, will be followed up with an oral presentation at this exciting conference.

Submissions close on Friday 22nd June 2018, and acceptance/non-acceptance will be advised by Monday 9th July 2018.

Abstract themes

We invite abstracts reflecting the programme themes:

  • Peer services – people living with dementia supporting themselves and each other
    Includes services delivered by and for people living with dementia

  • Citizenship and rights for people with dementia
    Includes dementia friendly programmes, services and standards, the review of the Convention on the Rights of Persons with Disabilities, and supported decision making

  • Effectiveness – the evidence for the right things to do
    Includes therapeutic interventions, the role of service navigation, the lived experience of dementia, biomedical developments and delivery models

  • Innovations – from the margins to the centre: New ideas and thinking
    Includes anything and everything that has the potential to transform the way we experience dementia

One of our blogs from 2015 provides guidelines on attending conferences, especially on how to write and submit an abstract, which you can read here...

If you need any assistance, please do not hesitate to contact us by email.

Mary-Beth Wighton speaks…

As promised yesterday, todays blog is of Mary-Beth ((MB) Wightons brilliant speech at the Canadian National Dementia Conference in May. Thanks to MB for advocating for us all. We are all very proud of you, and your amazing partner Dawn, and everything you are all doing in Canada.  Congratulations again for your selection onto the Ministerial DementiaAdvisory Group. You can read Mary-Beths full speech below.

Journey through the continuum of care and the healthcare system from the perspective of a person living with dementia.

I never would have imagined that at the young age of 45 I would be diagnosed with dementia.

Unbeknownst to me, my dementia journey started 4 years earlier with an initial appointment with my family doctor for memory problems and other symptoms.

My GP did an excellent job of referring me to specialists who could possibly provide insight. After a plethora of tests, doctors, and diagnosis’s including Conversion Disorder and PTSD, it would be a gerontologist who would provide the life-altering diagnosis of probable frontotemporal dementia.

The Assessment Process within my care pathway was riddled with anxiety, confusion, long-wait times, and an overwhelming lack of understanding of the next steps of care.

The diagnostic disclosure was abrupt, insensitive and simply lacked compassion.  Like hundreds of thousands of other Canadians with dementia, I was told to go home and get my affairs in order.

After weeks of waiting, we would then move into my postdiagnosis support.  The local Alzheimer Society and Community Care would sit down with my partner, Dawn, and me. We were introduced to a definition called Early-Onset.  Other than that, little support was provided in terms of appropriate education and resources.

Unlike most people living with dementia, young-onset has its own additional challenges that our healthcare system is struggling to address.  At the age of 45, my financial support to my family drastically was reduced.  Dawn, who was 39, was told she would be my primary care giver with the expectation that our daughter, who was just 17, would also be expected to contribute in care.  Dawn is expected to do this without pay and at the cost of her own career and life choices.

And through most consultations and meetings, the focus has been on my inabilities, and the stress and heartache that I will bring to my family and friends.

Stigma is drippingfrom the Canadian healthcare system and it is combined with a lack of appropriate education for all parties.

I’m worried what the next stages of my continuum of care will bring.  The fragmented care pathways and healthcare systems I experience, cannot exist.

Thank you.

 

DAI June Webinar: The STRiDE Project

Our third blog to support our members, and Dementia Awareness Week Scotland is a follow up to yesterdays blog, about the STRiDE Project. This webinar is an update of the progress the STRiDE research team have made since the kick off Workshops and meetings that Eileen reported on yesterday, highlighting just how far they have come, and perhaps even some of the  challenges to be faced ahead.

“A Meeting Of The Minds” Webinar, June 27/28, 2018

  • Wednesday, June 27, 2018 (USA/CA/UK/EU)
  • Thursday, June 28, 2018 (AU/NZ/JP/SGP/TWN)

Please note: this is one event, set in a number of different time zones.

Register here…

 

About Adelina: Adelina is an Assistant Professorial Research Fellow at the Personal Social Services Research Unit at the London School of Economics and Political Science. Her main research interests are economic aspects of care, treatment and support of people with dementia, and long-term care financing.

Adelina is the co-lead of the Strengthening Responses to Dementia in Developing Countries (STRiDE) project, a multi-national research project funded by the Research Councils UK’s Global Challenges Research Fund involving Brazil, India, Indonesia, Jamaica, Kenya, Mexico, and South Africa.

She also works on the “Modelling Dementia” (MODEM) project which aims to estimate the impact, in terms of costs and quality of life, of making interventions that are known to work for people with dementia and their care partners more widely available.

Adelina is a member of the World Health Organisation (WHO) Guideline Development Group for Risk reduction guidelines for cognitive decline and dementia and a consultant for WHO’s Department of Ageing and Life Course.

She was also a co-author of the World Alzheimer Report 2016.

Adelaine says: I first learnt about dementia through my grandfather, he moved in with my parents when he needed more support, but loved going back to his own seaside home whenever I could take a holiday.

About the Webinar:  Approximately 50 million people globally are estimated to live with dementia, and about two-thirds live in low-and-middle income countries (LMIC).

Everywhere, dementia is a major cause of disability among older people and can have a huge impact on their quality of life, particularly if adequate treatment, care and support is not available.

Provision of care and support for people living with dementia can be socially and economically very costly. These costs are mostly borne by family members, particularly women and girls. However, in the face of demographic, societal and economic changes, there are indications that nations can no longer rely only on this informal family care for people with dementia. LMICs need to develop evidence-informed responses to dementia prevention, treatment and care.

The STRiDE (Strengthening Responses to Dementia in Developing Countries) project aims to build capacity in dementia research, in order to support the development of national policies for dementia.

The project brings together researchers and Alzheimer’s Associations from seven LMIC countries: Brazil, India, Indonesia, Jamaica, Kenya, Mexico, and South Africa, and from the UK. The project is a partnership with Alzheimer’s Disease International and Dementia Alliance International, who are supporting the involvement of people with dementia in the project.

Please note: this webinar may not be made publicly available after the event; the Q & A sessions are never made publicly available to view.

Wednesday, June 27,  2018 – times (USA/UK/EU/CA):

  • 2:30 pm San Francisco USA
  • 4:30 pm Des Moines/Chicago USA
  • 5:30 pm New York USA
  • 11:30 am Honolulu
  • 5:30 pm Toronto CA
  • 2:30 pm Vancouver CA
  • 10:30 pm London/Glasgow UK
  • 11:30 pm Paris, Munich, Amsterdam, EU

We apologise again for the late time in the EU, UK and Scotland, due to the season and dalylight savings.

Thursday, June 28,  2018 – times (AU/NZ/JP/IND/TWN):

  • 7:00 am Adelaide
  • 7:30 am Brisbane/Sydney/Melbourne/Canberra/Tasmania
  • 5:30 am Perth/Taipei
  • 9:30 am Auckland, NZ

The webinar runs for up to 1.5 hours. 

Check your time using this link… 

COST TO ATTEND:

  • FREE for DAI members and their care partner (if you have dementia, please join here: www.joindai.org
  • $40 USD for all others
  • $20:00 USD Students (FT, unemployed)
  • $50 The cost of this ticket will be used exclusively to support people with dementia to attend ADI CHICAGO 2018
  • DONATION (this is not in lieu of a paid ticket, if you do not fit into the FREE ticket category)

THE SMALL FEE PAID FOR SOME ATTENDEES OF THIS EVENT, OR THE CONTRIUTION TO SUPPORT DAI MEMBERS AND THEIR CARE PARTNERS TO ATTEND CHICAGO, IS GREATLY APPRECIATED.

Register here…

 

DONATIONS ARE OUR OTHER ONLY SOURCE OF REVENUE.

WITHOUT THEM, DAI COULD NOT PROVIDE THE FREE SERVICES IT PROVIDES CURRENTLY FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

  • $US 5.00 covers the average cost of one of our monthly bank fees
  • $US 60.00 covers the average of the cost of our monthly Zoom subscription fee
  • $US 120.00 covers the average monthly cost of the MailChimp subscription
  • $US 300.00 covers the current cost of 3 months of website management fees

PLEASE DONATE HERE… 

If you need a certificate of attendance, email us at [email protected]

Note: the Q&A  session at the end of our webinars are never available publicly, and therefore will not be available after the event. Some webinars are available on our YouTube channel, but not all depending on each presenter, or the quality of the recording.

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 – 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 – 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’s Associations and other organisations to partner with us, as Alzheimer’s 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’t swallow and are almost ready to die
  • The WHO states dementia is the leading cause of death and disability in older people – 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®. 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 ‘young’ 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 – 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 ‘dropped like hot pancakes’. 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