Category Archives: Dementia

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

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

The Joy of DAI and Dementia, by Tamara Claunch

The first month of January is almost at an end! Wow, where did it go?! This month has definitely passed quickly, and for DAI, it has included a lot of celebrations for our 5th birthday.

We even have one more DAI event in January to attend, which you still have time to register for!

But, back to our birthday!

Who would have thought someone would be jealous of having dementia?

Our 5th birthday party was held in lieu of our regular Cafe Le Brain and members meeting, with a high attendance. It was an open session, with everyone being welcome, and access details made publicly available.  Most of our events last for up to 90 minutes; this one went for 2.5 hours, and only ended as those of us who were there the whole time we exhausted! People dropped in and out as they were able to, and everyone had a lot of fun.

Today, we are delighted to share a guest blog, written by one of our newest friends and supporters Tamara Claunch, who attended the celebration, and who has also agreed to volunteer for DAI. We will be sharing some exciting news about that in another blog very soon!

The Joy of DAI and dementia

By Tamara Claunch, written on Janauary 17, 2019

Yesterday I experienced being jealous of having dementia for the first time. If I had dementia, I would be allowed in the club. Yes, the club is that good.

Dementia Alliance International celebrated their fifth birthday recently.

I, along with other professionals, friends and family was invited to join the online, global celebration. It lasted longer than expected and was very well attended. Over 80 people called in on video from all over the world and the facilitators did a fantastic job of recognizing all attendees and making sure all had a chance to introduce themselves and say a little about DAI.

As I listened to the attendees speak, what struck me was how each member of DAI evidenced a lightness of the spirit, an openness that comes with wisdom and gratitude. Wisdom because they’ve experienced intense trauma and loss.

Gratitude because they’re together.

At least this is my interpretation of the energy in that communal space; I would not presume to know how it feels to be them.

At first, I was reminded of Alcoholics Anonymous: the old timer success stories inspire the freshly baptized-with-fire newcomers. They befriend and teach and support one another. As the group gets bigger, it adjusts – more local support groups, more online support groups, more specific support and study groups.

Absolute inclusion. Like AA, there’s only one criterion for joining: you must have the same “condition” as everyone else in the group.

How must it feel to being newly diagnosed with Alzheimer’s, frontal lobe or Lewy body dementia and given less than five or ten years to live? To believe the majority of those years will be spent dependent upon others?

Imagine then how it might feel to meet dozens of people all over the world who are living beyond dementia. People who are fighting their illness and defying expectations. People who are still independent, social and active a decade or more after diagnosis.

At the birthday party, I saw new DAI members experiencing hope for the future, perhaps for the first time since their diagnosis. As one member put it, “I can fight this and make it [the time] count”.

I saw “old” DAI members reconnecting and seeing each other for the first time in a while.

People laughed and joked, empathized and encouraged. They held a moment of silence for members who are no longer around.  All appeared to have a sense of purpose and community and to feel that they are part of something bigger than themselves.

While the members of DAI were uniquely individual, as were their stories, I perceived some common threads running through the tapestry of lively conversation and heartfelt congratulations:

  • They are all immensely grateful for DAI and the impact that it has had on their lives.
  • It’s okay to make fun of dementia, only if you have it.
  • Every journey has a purpose.

For a brief time, I was able to experience the humor and humanity and open lightness that exists within these people and between them.

Contrary to how the media, some caregivers and the medical establishment portray dementia, these people are not dumb. They are not dull. They are not incapacitated. They are funny and bright and witty and inclusive.

They are, simply, humans being human. As one member said, “Individually, we have deficits but as a whole we are magnificent.”

As an Integrative Wellness & Life Coach, speaker and writer, I specialize in working with people who have dementia. I am an advocate, a partner and a champion of persons with dementia. But all my passion and all my expertise did not prepare me for what I experienced during DAI’s 5th birthday party.

It ended up being one of the most present, precious experiences of my life.

If only the world could see these people and hear their stories then maybe, just maybe, the world would start to treat them as human beings deserving of dignity, respect, and inclusion.

So while I may not long for a diagnosis of dementia, I would love to belong to an organization like Dementia Alliance International. They have a lot of fun and they do a lot of good for others. They make a real difference in the lives of people all over the world and I am grateful to be a supporter and friend of the group and its members.

Copyright: Tamara Claunch 2019

About Tamara: Tamara Claunch, MEd, is an Integrative Wellness & Life Coach and the Founder of VitaV Wellness in Aging. She has worked extensively in partnership with the Center for Applied Research in Dementia. Her main areas of expertise are dementia risk-reduction and alternative, nonpharmacological interventions for those living with symptoms of dementia and Mild Cognitive Impairment (MCI). She has extensive experience working with individuals, families and the broader medical community to enable independence, dignity and equality in the lives of people living with dementia. Her passion in life is helping others find purpose in their journey, wherever it may take them and whatever it looks like.

Thank you Tamara for this beautful reflection, and thank you Fei Sun for the image below of some of the people who joined us. 

Image source: Fei Sun

“Working and supporting people with dementia as a student” by Jeremy Raynolds

Jeremy Raynolds. Image source: Jeremy RaynoldsIn the last 5-10 years, there has been a lot of interest and work in supporting intergenerational relationships and care for people living in aged care facilities (nursing homes), with and without dementia.

This week, we are pleased to feature a guest blog written by Jeremy Raynolds, who is a third-year psychology student at Washington State.

Jeremy has a strong interest in gerontology studies and often volunteers in nursing homes and care centers. He occasionally blogs about his work and experiences, and gets the help with writing from edubirdie. His aim is to develop a strategy accessible to anyone who has people with dementia in their care. We thank Jeremy for writing this guest blog, and for his interest in gerontology, and particularly in positively supporting people diagnosed with dementia.

Working and supporting people with dementia as a student

By Jeremy  Raynolds © 2018

“Gerontology is derived from the Greek words geron, “old man” and -logia, “study of”and, as you can guess is the study of the variety of aspects of getting older.

Aging is a natural process that affects everyone, but, of course, every case is unique. In this article, we will touch upon a very specific topic – caring for people with dementia, the type of brain disease that affects thinking abilities, memory capabilities and emotional stability. It is especially challenging, and requires a special approach and set of skills. Today we are focusing on advice for students who are willing to volunteer or do an internship in an Alzheimer’s care center or nursing home that deals with dementia. This is a very noble, yet difficult task that deserves praise as well as support from specialists and society.

Caring for the elderly is not an easy task. You sometimes have to deal with grumpiness, sicknesses, and various emotional and psychological issues. However, it goes without saying that caring for older patients with dementia may be harder. Pressure can build from constant repetition due to memory issues experienced by people with dementia, as well as unstable emotional backgrounds and the fears that come along with the work atmosphere at care centers. So it is extremely important to support and provide reasonable assistance to those students who decide to take up this task.

The disease also raises many social issues, as people with dementia can be isolated and treated unfairly, and the question of human rights arises from the cognitive deprivation aspects of dementia. Due to these reasons, proper care, destigmatization of the problem and acceptance are essential to the issue.

The vital characteristics of caring for people with dementia are compassion, understanding, and patience—a lot of patience.

Try to think of them as people with different processes that they need to go through and do not expect them to act like other older people. They may need more time to make a decision, more time to process some things and they may ask you the same thing repeatedly. But when you recognize where this comes from and make room for a patient and kind response, everything works out perfectly.

Supporting people with this disease can be broken down into small parts. For instance, communication is extremely important – everyone needs human touch and connection, including people who live with dementia. You can find out the topics that interest this particular person and embrace them, even though the conversation might not be as smooth and consistent as usual. But it is a true charity to set aside your frustrations and personal issues and selflessly connect with a person in need of communication.

Of course, it is important to know your limits. Do not make work your entire existence; it puts you at risk of burning out and damaging your own mental and emotional state. Take it slow and remember to take breaks and “switch off” for a while. Refresh yourself with some totally random activity or other to reprogram your mind and body. It could be a close set of exercises or a few pages from a book, a walk outside or a coffee break.

Consider this work as a partnership.

You meet the need for socializing and connection for people with dementia, and they provide you with an infinite learning opportunity.

It doesn’t matter whether you are a future social worker, a psychology student, or a medical student – practice is the best teacher. No matter how many books and theories you have gone through, practical approach grants you with precious skills and knowledge. It is a good reason to be grateful for such an opportunity.”

We have invited Jeremy, and hope he will find time next year to present on this topic at one of our Webinars.

Register now for our next “A Meeting Of The Minds” Webinar with Associate Proffessor Lee-Fay Low, “Rehabilitation for dementia: Evidence & Opportunities”

DAI has no paid staff and provides all services for memers for free. Without YOUR support, this would not be possible. Thank you.

Cultural Competence and Dementia by Dr David Paulson

Embracing Cultural Competence whilst Changing the Conversation on Dementia

By David Paulson © 2018

“Cultural competence is about our will and actions to build understanding between people, to be respectful and open to different cultural perspectives, strengthen cultural security and work towards equality in opportunity. Relationship building is fundamental to cultural competence and is based on the foundations of understanding each other’s expectations and attitudes, and subsequently building on the strength of each other’s knowledge, using a wide range of community members and resources to build on their understandings.” Educators’ Guide to the Early Years Learning Frameworkp21; Educators’ Guide to the Framework for School Age Care, p57.

Image source: David Paulson

I had just finished presenting on a panel discussion at a Dementia conference. A tall, jovial middle-eastern man in his 20s approached me. We chatted and found we could talk on many topics, so we went for a walk-and-talk. The topic being dementia, and me knowing utterly nothing about his home country, I opened the door by telling how my family handled my paternal grandmother’s senility, and later my Dad’s Lewy Body Dementia.

My grandmother was in her 90s in 1979 when she was abruptly taken from her farm where she’d lived alone since my grandfather’s premature death in 1960. No one explained anything to her or asked what her wishes were. She was tucked away in another city in a nursing home where no one would see her and “embarrass” the family, and that was my parents’ generation’s goal.

To continue  the conversation with my acquaintance from a part of the world about which I know absolutely nothing, I simply asked how many first cousins he had, first stating I had 9, they mostly lived within an hour’s drive and I knew all their families.

He threw his head back and had a good laugh. “My family would fill this convention center, and where I’m from – we’re ALL related in some way. I know of over 120 first cousins!” Since my partner passed away during the AIDS epidemic and our foster sons are in their early 40s now and I’ve not had contact with them in years, I have no family other than my birth family and relatives. He found that tragic and shocking. “How do you not kill yourself from loneliness?” I was aghast at his question and fell silent.

In Armistead Maupin’s Tales of the City (1976), Michael Tolliver famously confesses to his hippie friend Mona, “All I really need are five good friends” while he fails over and over (and over) again to find true love. That is part of our culture – many find love in their close friends, forming close, enduring families of friends.

My new acquaintance couldn’t begin to wrap his mind around that, he being from a clan-based culture. So this was the opportunity to ask him if he had any relatives with dementia. I mean, with all those relatives, there mustbe at least a few! He said, “well of course there are some. But you’ll never know who they are. We surround them like the leaves of a head of lettuce, care for them and make sure they live with dignity.”

“Yes, but are their individual rights respected? Are they allowed freedom?” He tut-tutted me the way someone with a British-English accent does.

“You’re trying to understand this through American sensibilities. Turn that off and see through them through my eyes. We never discuss it – we just know they’re losing it, and we deal with it.”

And then he didn’t want to talk about that or anything else any more, politely bade me farewell before we even introduced ourselves strode off and hopped in a taxi.

As of this writing, Dementia Alliance Internationalis active in at least 47 countries and several languages. Our first barrier is the concept of the “Support Group.” Most countries only understand a support group as being AA, and some non-alcoholics in many countries would find it pretty disturbing to sit around at spill one’s guts to other human beings – and have that accomplish anything. But today it is a widely accepted model for recovery in the U.S..

In mental health, vastly fewer support groups exist for persons with mental disease, especially those with severe mental disease. For example, those with schizophrenia, are often not expected or trusted to be able to think or speak for themselves – many are homeless or imprisoned. Support groups that do exist are for the poor families and caregivers who “suffer” silently at their sides (sarcasm). The concept of support groups for persons with any form of Dementia when DAI was first established first was shrugged off, then roundly criticized and now is become an emerging model of living well with Dementia.

For this model of living well with Dementia to continue to proliferate, it can only do so in a context of continuous building of cultural competency. As s DAI embraces persons and groups from other cultures/languages, keeping in mind that a different language is inextricably related to another culture, and not all people who speak a language share a particular culture.

My sister and I visited her friends in Liverpool years ago. I am a polyglot, but I could scarcely understand a word they said, nor they I. They understood my French better than my English. How is this anecdote relevant? For our online support groups to continue to grow in other languages and cultures, we must ask the right questions relevant to others’ cultures and technologies before we begin to extoll the many benefits of DAI.

For example:

  • Do you have access to a device that can broadcast and stream video/audio? Netbooks & tablets start at around $140, have cams and mics. Smartphones are more.
  • Do you have wifi accessible that supports streaming video?
  • Is there a quiet place you can use your device privately to stream a chat with others?
  • Will your family permit you to speak freely online to a group of people who also have dementias?

Culture is: technology, expectations of conduct (profanity, clothing, topics like politics or religion, cross-talk[1], expression of anger/disgust, taboo topics, observations of religious and civic holidays, etcetera), and certainly how much one discloses in a support group.

For example, in my case I was brought up not to disclose how I feltabout something; that was vulgar. One of my grandmothers was born in the end of the Victorian age in 1894, so she held those values firm. We all have some core values that have more to do with our respect for those who raised than our own beliefs. Those are simply part of our families’ cultures.

DAI does not seek to change other’s cultures. Rather, we endeavor to continuously better acculturate ourselves to persons with dementia from throughout the world. Many of our support groups are cross-cultural. Some are even cross-linguistic as we share the common goal of living well with differing dementias.

It is my personal goal to continue to integrate persons with dementias from cultures speaking the Romance family of languages as I am a Romance Linguist. Many of us who are monolingual are “fluent” in understanding other cultures, ready and able to create a conversation about Dementia which will be of continuous benefit to persons from many diverse cultures. In our support groups, we:

  1. open new channels of Communication, respectful of
  2. diverse Cultures, making
  3. new Connections among persons with dementia and support agencies, often making
  4. Comparisons among ourselves despite the distance, boundaries and languages that divide us, and forming
  5. newCommunities of support, fellowship, laughter, friendship and love.

We do all we can to live well with dementia.[2]

Consider donating to DAI to help support our online Support Groups as we continue to grow throughout the world, fighting the one thing about Dementia that most cultures share: Shame of having a family member with dementia, their forced Isolation and lack of Support and Protection for those living with the disease and their caregivers.

[1]Persons from an Alcoholics Anonymous or a similar background tend to reallyhate cross talk. In AA, everyone gets a turn, and when everyone has finished, then you may have a 2nd turn if there’s time, but you don’t talk back and forth or you are immediately scolded.

[2]Adapted from the World Readiness Standards developed by the American Council on the Teaching of Foreign Languages.

Help us support people like David. Become a DAI Sponsor or Associate today.

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.

Hello, my name is Wally Cox

On Day 27 of our #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature DAI member and advocate, Wally Cox. Wally is an active advocate and DAI member, and co hosts one of our USA support group. Wally also featured in our online Art Exhibition just a few hours ago! Thanks Wally for sharing your story by saying hello here, and for all that you do for DAI and others.

DAI and Wally Cox © 2018

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

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

Hello, my name is Bob Murray

Image source: Bob Murray

On Day 25 of our #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature DAI member and advocate Bob Murray from Canada.

Bob is also an avid golfer, and a very active member of DAI, attending the weekly DAI peer to peer support groups, our Action Group, our monthly Cafe Le Brain, and the weekly Brain Health meetings. We thank Bob for sharing his story with us here.

Let me help you understand…

Hello, my name is Bob Murray. I have ‘lived well’ with arthritis, cancer, a lousy memory, a hearing impairment, depression and more, and I still live with these health issues, the least of which is ‘ageing’. I now have a dementia and  intend to live well with it wherever the journey takes me. I also want to help you understand.

In 2013, when I was 74, now five years ago, I told my family doctor that I felt that my short-term memory was worsening – ‘senior moments’ were coming more frequently. She did a quick ‘clock’ test and suggested that I get a SPECT brain scan. The result was called ‘mild cognitive impairment’ (MIC – a dementia) which can progress to frontotemporal dementia – a disease of the brain with no known cure. Since then I have read everything that I can find out about MIC and Dementia. Some say the worst of all the dementias is Alzheimer’s Disease (AD). Scary stuff. My wife of one year was probably more scared than me.

I have had a good life and intend to continue the same into my 90’s. Genetics means a lot to me. I take after my father who lived for 52 years with type one diabetes and died at 89 of a stroke. His 3 siblings lived well into their 90’s. My daughter got type one diabetes when she was 7 and is now 46 years old and is doing well. Diabetes skipped my generation. I am the fourth generation of Murrays in the printing industry and my son continues this tradition.

My dementia is progressing slowly

I’ve been Lucky. My dementia is progressing slowly. My ‘senior moments’ are increasing in frequency but, with the help of my caregiver, my wife, I am still ‘living well’ with dementia quite enjoying my life.

There are 2 Doctor’s work with Dementia that I follow closely – Dr. Dale E. Bredesen and Dr. Norman Doidge. If you were to Google these names you will discover a great deal of information re the reversal or delay of cognitive decline and the brain’s way of healing. These are my guidelines for my life in my future. The keys are exercising and nutrition and everything in moderation

I’m now 79 years old, I’ve had a good life, I am LIVING WELL WITH DEMENTIA and intend to continue into my 90’s.

When I was 78 years old my family doctor and the head of our memory clinic and my local Alzheimer’s Society told me that there was nothing they could do for me – I was doing well. We moved away from the big city (Toronto) to a rural small town (Seaforth) in 2015 for it’s peace and quiet. Here I was introduced to the local Alzheimer’s society for counselling for me in Dementia and Care Giving for my wife. Time well spent!

I was introduced to their educational specialist who suggested that I look up the blog of Kate Swaffer who is founder and CEO of Dementia Alliance International (DAI). This organization is restricted to those with dementia. Currently I talk weekly with others over the internet for 2 – 1 hour sessions throughout the world. I was no longer alone. Highly recommended – no cost.

From my time with depression (my early 40’s), I learned that writing about myself was very therapeutic. I met with our local Alzheimer’s Society and we developed a strategy that I would tell my story with dementia and they would publish it in their monthly Alzheimer’s e-newsletter.

Thus was born “My Voyage with Dementia”.

This September’s column was my 11th column and I am also being published in a ‘opinion’ section of a local weekly newspaper. All the columns are on this blog, My Voyage.. This column is now being published on the South Western Ontario website.

Seeing my opinion column in print is very exciting.

Coming up with monthly columns with my personal experiences on dementia has not been as tough a job as I had anticipated. Going weekly may be in my future – it excites me as a great challenge. I meet with the newspaper in 2 weeks to decide on a win-win course of action. Stay tuned. In the meantime please read my past columns – I appreciate comments. This challenge seems to be slowing the progress of my dementia. Time will tell.

Keeping my brain fully engaged is important to me. Incidentally, since starting to learn to play the saxophone my golf game has improved from the mid 90’s to the mid 80’s. If you are a golfer you know that golf is a brain game.

And, life goes on… I do wonder what is next.

Bob Murray © 2018

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