Category Archives: CRPD

Where in the world is DAI? No

DAI Membership Map

Where in the world is DAI?

Well, almost everywhere. We have members in 49 different, and a great many are very busy locally, nationally and internationally.

DAI members attend meetings and events at the United Nations in New York and Geneva,  the World Health Organisation in Geneva, and meetings or specific advocacy events in Lausanne, Washington, Sydney, Canberra, London, and quite literally, cities and towns all over the world. There are simply too many to list!

The voices of all people impacted by dementia matter, and our advocacy,  and for some, activism is important and is increasing, both in terms of the numbers of people with dementia and/or their families becoming involved, and the ‘volume’ of our voices.

We are being heard, but little has changed:

  1. People with dementia are still being advised to ‘get their end of life affairs in order’, and offered little if any support to live positively and independently, for as long as possible.
  2. The style of language being used in all forms of the media remains persistently negative, disabling and disrespectful; there has been little change in terms of language in the clinical and academic sectors either.
  3. Researchers and health care professionals still do not manage dementia as a condition causing cognitive and other disabilites, many even insisting on th medical model of post diagnostic care. This is in spite of the fact that the World Health Organisation Factsheets on Dementia have stated for some years now  that “Dementia is a major cause of disability and dependnce in older persons.” 
  4. People with dementia are still not provided with disability assessment or support soon after diagnosis.
  5. Our human rights are being ignored, and full and equal access to the UN CRPD as person with disabilities are still not being realised.
  6. People with dementia continue to be physically and chemical restrained in nursing homes.  The 2018 Human Rights Watch report on this in the USA is deeply distressing.
  7. Neglect and abuse within nursing homes, and also in the community is still high.
  8. Elder abuse is still especially present.
  9. When talking to people more recently diagnosed with dementia, it is clear the Dementia Friendly initiatives have done little to change what happens for them at the time of diagnosis, or after. In the broader context of civil society including health care professionals, they have rarely changed attitudes, and have barely, if at all, decreased the stigma or discrimination still being experienced.

Attitudes to dementia have not changed

In the recent  ADI World Alzheimer’s Report on Attitudes to dementia, some of the key findings of the report include:

  1. Almost 80% of the general public are concerned about developing dementia at some point and 1 in 4 people think that there is nothing we can do to prevent dementia.
  2. 35% of carers across the world said that they have hidden the diagnosis of dementia of a family member.
  3. Over 50% of carers globally say their health has suffered as a result of their caring responsibilities even whilst expressing positive sentiments about their role.
  4. Almost 62% of healthcare providers worldwide think that dementia is part of normal ageing.
  5. 40% of the general public think doctors and nurses ignore people with dementia.

These findings, in particular number 4, are deeply disturbing, and are likely a further indication of the lack of tangible impact of advocacy.

So,  if dementia advocates keep doing what has always done, and keep getting the same results, unless WE change, nothing will change. As a prominent care partner Jayne Roberts said last year, “Everything has changed, and nothing has changed.

As advocates, we need to re-asses our plan(s) of action.

Perhaps one of the key factors in why very litttle has changed, epecially for newly diagosed peopel with dementia, may be that we should ALL be working together more collaborativley, with each other, both individually and between organisations.

The challenge with that of course, is that many organisations and many individuals have differing agendas, or are more  concerned about funding. Of course, funding for all organisations is very necessary, but it is not yet adequately helping people diagnosed with dementia, or our families.

It is definitely time to do something different; just what that is yet, from the perspective of DAI, is still under review.  

Register now for DAI’s July Webinar: Dementia as a Disability

We invite you to register now for DAI’s “A Meeting Of The Minds” Webinar, July 24/25, 2019, with presenter and DAI Board member, Christine Thelker from Canada.

 

 

 

 

 

 

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

About the Webinar: DAI recently held a Side Event at the 12th Session of the Conference Of State Parties (COSP) on the Rights of Persons with Disabilities (CRPD). This webinar will highlight the event, focusing on why dementia must be managed as a disability and why people with dementia are rights bearers as all others, such as universal heath care including rehabilitation. The panel included a group of eminent speakers, and was a rich discussion on dementia as a disability, on people with dementia as rights bearers, and of the rights of all, including people with dementia to rehabilitation and other services, and to full and equal access to the CRPD

The overarching theme was social inclusion and health, two determinants of well-being, both of which are being systematically denied to people with dementia all around the world. Dementia had never been represented formally in a Side Event ever before at the COSP, hence why DAI felt it was so important.

Our disabilities may be more invisible than many others, but we are still, even in 2019, being stigmatised and discriminated against on a daily basis, and we hope this event will be the start of change for the more than 50 million people currently living with dementia, and every person being newly diagnosed every 3.2 seconds.

As an organisation DAI continues to work towards others joining our campaign that dementia is a condition causing acquired cognitive and other disabilities, and for full and equal access to the CRPD and other Conventions, so that no one is left behind, including people with dementia. Rehabilitation, and all other health and disability services and support are essential for maintaining independence and dignity, for longer, and whilst dementia is a terminal condition, we should not all be ‘dying at diagnosis’.

About our speaker: Christine Thelker, a current board member of DAI, is from Vernon, British Columbia, Canada and at 59 says, her sense of humour has grown, since her diagnosis of dementia. She is a Board member of Dementia Alliance International, and previously worked for the Interior Health Authority for 13 years in various sites, including in dementia care and of life care. She advocates for families and patients and for better training for workers in dementia care. She also advocated for better working environments for the employees. Christine designed and taught a program to nursing students at the local colleges on end of life care and dementia care, and designed a program on unattended sorrow, which was in relation to all the deaths workers saw and the cumulative effects. She believes it has many similar effects on people diagnosed with dementia and doing more work around that. Widowed at 47 and then diagnosed with Vascular dementia at 56, Christine is still advocating, using her voice to help others. She loves working with Dementia Alliance International (DAI) and believes whole-heartedly that it helps keep her living well with her dementia. Her motto since being diagnosed is “I’m not done yet”.

Register here…

Wednesday, July 24, 2019 (USA/CA/UK/EU):

  • 11:30 am Honolulu
  • 2:30 pm Pacific
  • 3:30 pm Mountain
  • 4:30 pm Central
  • 5:30 pm Eastern
  • 10:30 pm London/Glasgow/Dublin UK
  • 11:30 pm Paris, Munich, Amsterdam, EU

Thursday, July 25, 2019 (AU/NZ/JP/SGP/TWN/CHN):

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

The Webinar runs for 1.5 hours. Check your time if not listed above by using this link:

COST TO ATTEND:

  • DAI Members/Care partners: FREE
  • Employed people: DONATIONS APPRECIATED
  • Full time Students: DONATIONS APPRECIATED

Register here…

Donations are appreciated.

Summary of the DAI Side Event at #COSP12

Left to right: Antony Duttine, PAHO/WHO; Christine Thelker, DAI Board member, Kate Swaffer, DAI Chair/CEO, Bethany Browne, Human Rights Watch, Arlene Pietratanton, ASHA, CEO and Jans Monbakken, GRA
Left to right: Antony Duttine, PAHO/WHO; Christine Thelker, DAI Board member, Kate Swaffer, DAI Chair/CEO, Bethany Browne, Human Rights Watch, Arlene Pietratanton, ASHA, CEO and Jans Monbakken, GRA

We hope the time spent by DAI members and our volunteer last week in New York attending the 12th Session of the Conference Of State Parties (COSP12) on the Convention on the Rights of Persons with Disabilities (CRPD) will  have far reaching benefits for all people with dementia, now and into the future.

It is imperative we all work towards ensuring that dementia is recognised by all as a condition causing acquired cognitive and other disabilities, and therefore one that people diagnosed with dementia must be provided with full and equal access to the CRPD and other Conventions, and to Universal Health Care.

Here, we highlight  the link to the live recording of the DAI Side Event, and provide the DAI Side Event Concept note and the DAI Handout provided on the day. Please share and download as you wish.

We also wish to thank the United Nations and the World Health Organisation for supporting our event, and acknowledge our co sponsors, the Australian Government, the International Disability Alliance, Alzheimer’s Disease International, Human Rights Watch, the Global Rehabilitation Alliance and the World Hospice and Palliative Care Alliance.We also thank our two sponsors, Alzheimer’s Disease International and Boehringer Ingelheim.

We especially thank Ms Catalina Devandas Aguilar, the UN Special Rapporteur on the rights of persons with disabilities for her opening remarks, and all other speakers.

It was a rich discussion on dementia as a disability, on people with dementia as rights bearers, and of the rights of all, including people with dementia to rehabilitation and other services, and to full and equal access to the CRPD

The overarching theme was social inclusion and health, two determinants of well-being, both of which are being systematically denied to people with dementia all around the world. Dementia had never been represented formally in a Side Event ever before at the COSP, hence why DAI felt it was so important.

Our disabilities may be more invisible than many others, but we are still, even in 2019, being stigmatised and discriminated against on a daily basis, and we hope this event will be the start of change for the more than 50 million people currently living with dementia, and every person being newly diagnosed every 3.2 seconds.

As an organisation DAI intends to continue to work towards others joining our campaign that dementia is a condition causing acquired cognitive and other disabilities, and for full and equal access to the CRPD and other Conventions, so that no one is left behind, including people with dementia.  Rehabilitation, and all other health and disability services and support are essential for maintaining independence and dignity, for longer, and whilst dementia is a terminal condition, we should not all be ‘dying at diagnosis’.

A number of blogs were published last week, including the statements made by Kate Swaffer and Christine Thelker.

 

Join us online today for the DAI Side Event: Dementia as a disability

Please join us online today for the DAI Side Event being hosted at the 12th Session of the Conference Of State Parties (COSP) on the Rights of Persons with Disabilities (CRPD). Dementia: The leading cause of disability.

The overarching theme is of social inclusion and health, which are two of the determinants of well-being, both of which are being systematically denied to people with dementia all around the world, including in the developed countries. UN Web TV

Watch live UN Web tv at the following times:

  • Thu, 13 Jun 2019 at 6:45 am Pacific Time
  • Thu, 13 Jun 2019 at 7:45 am Mountain Time
  • Thu, 13 Jun 2019 at 8:45 am Central Time
  • Thu, 13 Jun 2019 at 9:45 am Eastern Time – LIVE IN NYC
  • Thu, 13 Jun 2019 at 2:45 pm London, UK BST
  • Thu, 13 Jun 2019 at 3:45 pm Brussels, Belgium CEST
  • Thu, 13 Jun 2019 at 11:15 pm Adelaide, Australia ACST
  • Thu, 13 Jun 2019 at 9:45 pm Perth, Australia AWST
  • Thu, 13 Jun 2019 at 11:45 pm Sydney/Melbourne/Brisbane, Australia AEST
  • Fri, 14 Jun 2019 at 1:45 am Auckland, New Zealand NZST

Speakers

We will hear from an eminent list of speakers, on the rights of persons with any type of disability, including dementia, to full and equal access to the CRPD, and specifically on the right to rehabilitation and to Universal Health Care:

Mrs. Catalina Devandas Aguilar, UN Special Rapporteur on the rights of persons with disabilities: opening remarks

Christine Thelker, DAI Board Member:“Dementia as a disability”

Bethany Brown, Researcher, Older People’s Rights, Disability Rights Division, Human Rights Watch: “Violations of the rights of older people with dementia”

Arlene Pietranton, American Speech-Language-Hearing Association: “Rehabilitation for dementia and aphasia”

Mr. Antony Duttine, Regional Advisor in disabilities and rehabilitation, Pan American Health Organization/World Health Organisation (PAHO/WHO): “QualityRights” 

Jan Monsbakken, Global Rehabilitation Alliance: “The Rights to Rehabilitation for All”

Kate Swaffer, Dementia Alliance International, Chair/CEO: Closing remarks

Please check your time here if not listed above: https://www.timeanddate.com/worldclock/fixedtime.html?msg=DAI+CoSP+Side+Event+June+2019&iso=20190613T0945&p1=2416&ah=1&am=15

Update on the upcoming 12th session of the Conference of State Parties to the CRPD

Next week, the 12th session of the Conference of States Parties (COSP) to the Convention on the Rights of Persons with Disabilities takes place from Tuesday 11 to Thursday 13 June 2019 at UN Headquarters in New York. On Monday 10 June, a Civil Society CRPD Forum will be held to complement the Conference.

DAI will be attending both events, aiming to represent the 50 million people currently living with dementia, and each person who is  newly diagnosed every 3.2 seconds. It is a hostorical moment in the advocacy of, by and for people with dementia. That this DAI Side Event was accepted is a first, and highlighting. Dementia as a disability has never been represented  at the CoSP conference ever before.

The Themes and Sub-Themes

The overarching theme of the Conference is “Ensuring the inclusion of persons with disabilities in a changing world through the implementation of the CRPD”.  This is highly relevant to people with dementia and our families.

Three round tables will address the following themes:

  • Technology, digitalization and ICTs for the empowerment and inclusion of persons with disabilities
  • Social inclusion and the right of the highest attainable standard of health
  • Inclusion of persons with disabilities in society through participation in cultural life, recreation, leisure and sports

Highlights for the week:

  • The Civil Society Forum on Mon 10 June will address what is the current state of play; capacity building; and protection of the rights of children with disabilities.
  • Civil Society representatives speaking in all official sessions of the CoSP and co-moderating all three round-tables from Tues 11 to Thurs 13th June.
  • On Wednesday 12,  Matters related to the implementation of the Convention (item 5 (b) (ii): Round Table 2. Social inclusion and the right to the highest attainable standard of health – will be co-chaired by H.E. Ambassador Katalin Annamária Bogyay of Hungary, Vice President of the Conference and Ms. Kate Swaffer Civil Society representative from Dementia Alliance International, also Chair and CEO of DAI.
  • The Chair of the International Disability Alliance will speak at the opening of the CoSP, as a representative of the Civil Society Coordination Mechanism, and alongside UN Secretary-General
  • 100 side-events are being organised, covering a broad range of topics
  • IDA and its members will also be co-sponsoring and/or speaking at over 20 side-events, including DAI’s.
  • DAI is hosting its own and first Side Event on Dementia as the leading cause of disability on June 13, with live web  cast, International Sign and Closed Captioning services provided, to ensure accessibility to and for as many people as possible

Don’t miss watching the DAI side-event “Dementia: the leading cause of disability”.

DAI will be not only be celebrating our 5th Birthday at this exciting event,  but also ensuring dementia as a disability definitively joins the global disability stage. This event is being held on Thursday June 13, 9.45-11.00 am in Conference Room 11.

Note: We will be posting a blog with the times and link to the live webcast as soon as the link is available to share.

 

Rehabilitation for dementia: evidence and opportunities

For those of you who missed our latest Webinar presented by Associate Professor Lee-Fay Low, Rehabilitation for dementia: evidence and opportunities, it is now available to view here and on our YouTube channel. Thanks again to Lee-Fay for her continued support for DAI.

About the Webinar: The World Health Organisation has defined rehabilitation as “a set of measures that assist individuals, who experience or are likely to experience disability, to achieve and maintain optimum functioning in interaction with their environments”. Research and practice relating to dementia is predominantly focused on prevention, disease-modifying treatment, and care. This presentation will review the current evidence for rehabilitation strategies (e.g. exercise, cognitive training, occupational therapy) in dementia, and outline several ongoing studies. Barriers to rehabilitation for dementia will also be presented.

About A/Professor Low: Lee-Fay Low (BSc Psych (Hons), PhD) is Associate Professor in Ageing and Health, NHMRC Boosting Dementia Research Leadership Development Fellow, and Head of Behavioural and Social Sciences in Health in the Faculty of Health Sciences, University of Sydney. She is a registered psychologist with a PhD in psychiatric epidemiology.

A/Prof Low conducts research that she hopes will make a difference in the world.

Her main areas of expertise are in home and residential care for older people, wellbeing in people with dementia, dementia risk factors for dementia, dementia literacy, and people from culturally and linguistically diverse backgrounds. She is particularly interested in developing and evaluating interventions to improve the quality of life of older people. She has methodological skills in population studies, systematic reviews, clustered randomised trials, instrument development and evaluation, and translation of research into practice.

She has authored over 100 peer-reviewed articles, as well as two books on dementia. She is an active advocate in improving how older people are treated and cared for. Lee-Fay thinks that research is great fun, and even admits to liking statistics.

Watch the presentation below, and download the slides here…

Rehabilitation and dementia: evidence & opportunities

Our November “A Meeting Of The Minds” Webinar is by Associate Professor LeeFay Low fom Sydney University. The topic, Rehabilitation and dementia: evidence & opportunities, will be of great interest to members and professionals, and we hope you will join us.

 

 

 

 

 

About the Webinar:  The World Health Organisation has defined rehabilitation as “a set of measures that assist individuals, who experience or are likely to experience disability, to achieve and maintain optimum functioning in interaction with their environments”. Research and practice relating to dementia is predominantly focused on prevention, disease-modifying treatment, and care. This presentation will review the current evidence for rehabilitation strategies (e.g. exercise, cognitive training, occupational therapy) in dementia, and outline several ongoing studies. Barriers to rehabilitation for dementia will also be presented.

Register here…

About A/Professor Low: Lee-Fay Low (BSc Psych (Hons), PhD) is Associate Professor in Ageing and Health, NHMRC Boosting Dementia Research Leadership Development Fellow, and Head of Behavioural and Social Sciences in Health in the Faculty of Health Sciences, University of Sydney. She is a registered psychologist with a PhD in psychiatric epidemiology.

A/Prof Low conducts research that she hopes will make a difference in the world.

Her main areas of expertise are in home and residential care for older people, wellbeing in people with dementia, dementia risk factors for dementia, dementia literacy, and people from culturally and linguistically diverse backgrounds. She is particularly interested in developing and evaluating interventions to improve the quality of life of older people. She has methodological skills in population studies, systematic reviews, clustered randomised trials, instrument development and evaluation, and translation of research into practice.

She has authored over 100 peer-reviewed articles, as well as two books on dementia. She is an active advocate in improving how older people are treated and cared for. Lee-Fay thinks that research is great fun, and even admits to liking statistics.

Register here…

Wednesday, November 28, 2018 – times (USA/UK/EU/CA):

10:00 am  Honolulu
12:00 pm  Oregon Portland/San Francisco USA
12:00 pm  Vancouver CA
2:00 pm    Des Moines/Chicago USA
3:00 pm    New York USA
3:00 pm    Toronto CA
8:00 pm    London/Glasgow UK
9:00 pm    Paris, Munich, Amsterdam, EU

Thursday, November 29, 2018 – times (AU/NZ/JP/IND/TWN):

6:00 am    Adelaide AU
6:30 am    Brisbane AU
7:00 am    Sydney/Melbourne/Canberra/Tasmania AU
4:00 am    Perth AU/Taipei TWN
5:00 am    Tokyo, JP
9:00 am    Auckland, NZ

The webinar runs for 1 hour. 

Check your time if not listed above by using clicking this link… 

Register here…

 

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)
  • DONATION (this is not in lieu of a paid ticket unless it is higher than the fee, if you do not fit into the FREE ticket category)

THE SMALL FEE PAID FOR SOME ATTENDEES OF THIS EVENT IS GREATLY APPRECIATED.

WEBINAR FEES AND DONATIONS ARE OUR ONLY SOURCE OF REGULAR REVENUE. WITHOUT THEM, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE 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: https://www.dementiaallianceinternational.org/donate/

If you need a certificate of attendance, please 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.

Hello, my name is Peter Mittler

Image source: Peter Mittler

The #DAI #Hello #WAM2018 blog series have been very popular, hence we intend to continue them at least weekly for some time to come. We have many new members joining DAI each week now, and want to continue to give everyone with dementia a platform to have a voice, if they want one.

As is it important to talk about progress (or not), today, therefore we begin October with an article by DAI member Professor Peter Mittler. Peter says #Hello with a reflections on our human rights.

Peter has worked tirelessly for most of his professional life for the rights for people with disabilities, and for the last few years has devoted his attention to the rights of people with dementia, sharing his extensive expertise and knowledge, and is friendship and commitment to the 50 million people currently living with dementia. Thank you Peter. We are humbled and honoured to have Peter as a member, and thank him for his continued focus on the rights of us all; DAI is deeply indebted to you.

Hello, my name is Peter Mittler

MY REFLECTIONS ON OUR HUMAN RIGHTS

My human rights journey began shortly before my 7thbirthday when Hitler’s army marched into Austria and street thugs wearing brown shirts and swastikas arrested thousands of Jews, closed their shops and businesses and stopped me and other Jewish children going to school.

My story is told at length in a memoior, Think Global Act Local: A Personal Journey (2010). It now needs a new title:  Act Local Think Global because the responsibility for taking action on human rights rests with each and every one of us.

The United Nations Organisation was founded in the wake of the Holocaust and the loss of hundreds of million lives in World War 2.  Under the inspirational leadership of Eleonor Roosevelt, the UN produced the Universal Declaration of Human Rights in 1948 for everyone on the planet.  That Declaration provides firm foundations for the legally binding Conventions on the rights of specific groups who were experiencing inequalities and discrimination: women, children, ethnic minorities and last but not least disabled people.

Although the UN has officially recognised people living with dementia as persons with cognitive disabilities, governments have not included us in the implementation of the CRPD or other Conventions. This is nothing short of systemic discrimination which will only end if we insist and persist in the demand for our human rights on the same basis as people with other disabilities.

  • What can be more important than our human rights?
  • What is worse than decisions about us without us?
  • Why do governments and decision makers ignore us?

Since March 2015 when Kate Swaffer first demanded access to the CRPD at the World Health Organisation, I have worked with her and many others to secure our rights but we have very little to show for our efforts.

The UN supports us but our governments continue to ignore us. Dementia Alliance International and Alzheimer’s Disease International helped inform the World Health Organisation’s Global Action Plan for a Public Health Policy in Dementia (2017).  It is a good plan but it is not clearly based on the General Principles and substantive Articles of the CRPD. Furthermore, very few governments have acted on it.

There now needs to be a campaign to use the CRPD in planning supports and services in the wider context of the UN’s Action 2030 Sustainable Development Goals.

Will it happen?

Over to you!! 

Peter Mittler © 2018

 

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

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


 

Hello, my name is Jerry Wylie

On the final Day of the #DAI #Hello my name is blog series for World Alzheimer’s 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’s vision: “A World where people with dementia are fully valued and included.”

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

DAI in Chicago #3

Today, we bring you DAI’s Vice Chair Jerry Wylie’s recent Plenary speech from ADI Chicago. Sit down, grab a coffee and put on your seat belts. It is a fabulous, if not challenging ride, especially so for health care professionals and providers, so get yourself ready, relax, and tune in to watch it now here, or later on our YouTube Channel.

Living the U.S. National Dementia Plan

Presented by Jerry Wylie

This is not Jerry’s full speech notes, but a blog he wrote very recently, that goes well with it, and covers many of the key messages in his speech. He also presented his speech again at our monthly Webinar yesterday, so those who could not attend ij erson, could hear him live online.

“Living well with Dementia may well be, the best lived experience of my life now that I have recovered from being inhumanly treated”.

What? Inhumanely treated? How, when and why? Read on……

First, our diagnosis is delivered “Without Any Referrals” to support or disease education. No discussion of rehabilitation and No words of encouragement, No mention of hope, how diet & exercise could help. We are given absolutely nothing, zero, nada. To this day, we are still being told to get our affairs in order and, here are some drugs that might help with your symptoms, temporarily.

The end result; we are “delivered directly into suffering” from depression by the very doctors who are paid to keep us well.

Not long after this wonderful experience, most of us, are “abandoned by one or two members of our own family”.

Below, is a chart that shows exactly how  we process this situation. We no longer have the ability to properly process what happened and, because we need family more than ever, we are driven even deeper into “long term & unnecessary suffering”.

It took me 1.5 years of preventable, unnecessary suffering, to fight, scratch and claw my way out of the most miserable, vegetable like existence of my life.

“THIS IS NOT JUST MY STORY”!

It’s the story of 50 million other people living with Dementia as well. This treatment is our standard treatment world wide, perhaps, due solely to ignorance.

I can confidently say “The only time” a person with Dementia “really suffers” before end stage, is when we are either unintentionally or, intentionally mistreated. Period.

Clearly, this is cruel, unusual and unacceptable abuse. Clearly this is a violation of our human rights.

When someone is caught abusing a pet, it immediately becomes a huge media/news event and people get arrested. When 50 million people are abused by our doctors and sometimes by family members, nothing is reported and no one is as much as reprimanded.

When harsh words are spoken to us, we can’t process what you said but, we “cannot forget” how you made us feel. Once again, we are unintentionally or, intentionally pushed into“constant, ongoing grief” that we cannot shake off or even come close to processing. Unexplained, it is a life sentence of pain at a time when we desperately needed the opposite.

This is the truth. This is the debilitating, mentally abusive, harmful & “INHUMANE TREATMENT” that is currently happening about every 3 seconds somewhere to virtually defenseless people.

NO,  STOP & THINK about this! 50 million people today plus, “10 million more people” every year. This may well be the “Most Inhumane Tragedy of Our Century”!

Now, feel free ask me why I am such a boisterous advocate for people living with Dementia and our Human Rights.

I dare you to ask me why people with Dementia suffer.

“Living well with Dementia may well be, the best lived experience of my life now that I have recovered from being inhumanly treated”.

Jerry Wylie © 2018