Category Archives: Rehabilitation

International Day of Persons with Disabilities 2018

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

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

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

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

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

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

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

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

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

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

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

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

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.

Dementia as a Cognitive Disability

Howard Gordon and Professor Peter Mittler at the Global Disability Summit 2018

Todays article follows on from yesterday, also written by DAI member and a human rights consultant, Professor Peter Mittler.

It is a detailed and reflective insight into the importance of seeing Dementia as a Cognitive Disability.

Dementia as a Cognitive Disability

By Peter Mittler [1]

The United Nations recognises dementia as a cognitive disability.

Why are governments and professionals so slow to accept that dementia is a disability like any other and that people affected by dementia have the same rights as other disabled people under the United Nations Convention on the Rights of Persons with Disabilities?

The CRPD is now ten years old.  Why has it taken people with dementia so long to demand their rights?

Dementia was not mentioned by any of the speakers or the 800 delegates from all over the world at the recent Global Disability Summit organized by the Department for International Development (DfID), the government of Kenya and the International Disability Alliance.

Three of us with dementia (Peter Mittler, Howard Gordon and Nigel  Hullah) sent in questions but they were not chosen for discussion.

I was diagnosed with Alzheimer’s Disease 12 years ago but I am still me.  Much worse than my Alzheimer’s is severe deafness which makes it difficult for me to use the phone or hear what the person next to me in a noisy restaurant is saying.

I have worked in the disability field since the 1950,  first as an NHS clinical psychologist and then as a university teacher in psychology and education and researcher in the social sciences. I have also been active in the British Psychological Society, most recently in my new role as ‘a psychologist living with dementia’.

My priority for some years has been a commitment to human rights and social justice for all disabled people, particularly those living with Alzheimer’s and other dementias.

I started working with International Disabled Persons Organisations in in 1979 when the UN was taking advice on the 1981 International Year of Disabled Persons and UNESCO was launching a 5-year programme on what we would now call inclusive education.

My most vivid memories come from the founders of the disability movement who insisted on co-production of policy with ministers and officials. Most of the pioneers were men in wheelchairs demanding access to jobs, buildings and documents.  The strapline of ‘Nothing About Us Without Us’ was launched in the 60s and has now been extended to 50 million people living with dementia world-wide.

Life in Alzheimerland is very different.

Most professionals are respected as experts.  Conferences are polite and collegial, despite evidence of deteriorating services and now an NHS and care system on its knees for human and material resources.

The older we get, the higher the risk of one or more age-related illnesses. Some are more at risk than others: it helps to be married and have a family; your risk is lower if you lead an active life, meet friends, eat healthy foods, go easy on the alcohol and take a lot of exercise because the brain needs blood to activate neurons to make connections with other cells.  It also helps if you’ve had a good education and speak a second language.

Being given a diagnosis of dementia can be a traumatic experience.

Some people have cried for weeks or can’t sleep for worry about what is to become of them.  Others are asked to hand over their driving licenses or to stop work and take out a Power of Attorney for when they lose capacity. Many have reported that friends and neighbours cross the street to avoid them because they don’t know what to say. The fear and stigma around dementia leads to social isolation and from there to apathy and depression.

The only global self-advocacy movement is Dementia Alliance International.  

Most Board members are under 65, as are all those who have written books about their experiences – the latest is Wendy Mitchell’s highly readable Someone I used to Know (2017).

Most of the advocacy has come from people with younger onset dementia – around ten percent of the total.

Britain will soon have a million people living with dementia; many more are directly affected by dementia, including care partners and relatives. There will be 75 million by 2030 world-wide and we are already being left behind in the UN’s 17 Sustainable Development Goals.  Much of the increase will take place in Low and Middle-Income Countries where diagnosis is a rarity.

People living with Alzheimer’s don’t usually think of themselves as disabled or as grey panthers.  They want a quiet life and to follow their interests.

Action is needed because the OECD has stated that ‘people living with dementia receive the worst care in the developed world’ (2015).

Alzheimer’s Disease International and the World Health Organisation has estimated that one person with dementia is being diagnosed with dementia every three seconds. The cost of dementia is now $1 trillion.

The Alzheimer’s Society UK used data collected from NHS Trusts under the Freedom of Information Act to establish that the chances of falling while in a general hospital are twice as large as in other over 65s and that thousands are being discharged between 11pm and 7am because the beds are needed by other patients. In this country diagnostic rates vary considerably even within a conurbation the size of Manchester but are much lower in Low and Middle Income countries where the condition is often seen as normal ageing.

Although the United Nations Human Rights Bodies recognize dementia as a cognitive disability, there is little evidence that people with dementia are being consulted or involved by their governments in planning services when a country is implementing the CRPD, as required in CRPD Article 4.3. This amounts to systemic – if unintentional – discrimination by their government.

Over a year ago, the World Health Organisation launched its Global Action Plan for a Public Health Policy in Dementia, together with a parallel plan for Mental Health.  Unfortunately, very few governments have taken any action to use it – and that includes NHS England and Dementia United.

To end on a positive note: here are the recommendations for a Rehabilitation Pathway made by Dementia Alliance International to the CRPD Committee in 2016.

Rehabilitation should begin at the point of diagnosis when the  doctor giving the diagnosis introduces a home visitor who will visit the person or the care couple as the link to community supports and services.

The home visitor can be a health or social care professional who visits the care couple to discuss their priorities.  Their task is to try to arrange support from health and social care from  the voluntary sector. These might include an occupational therapist, physiotherapist, speech and language therapist, clinical psychologist and social worker: it depends on the needs of the care couple and other members of the household.

Utopia?

Not at all: something like this exists in some parts of the country.

These are islands of excellence in a sea of poor or non-existent post-diagnostic support.

Peter Mittler © 2018

[1] Professor Peter Mittler, CBE, FRSA, MA, M.Ed, Ph.D (Psychology);  Clinical Psychologist 1954-1963; Lecturer in Developmental and Abnormal Psychology, Birkbeck College, University of London (1963-1968); Founding Director Hester Adrian Research Centre for the Study of Learning Processes in the Mentally Handicapped University of Manchester (1968-1992); Professor of Education, Head of School of Education and Dean of the Faculty of Education, University of Manchester (1991-1995).  Currently Hon Research Fellow Division of Nursing, Midwifery and Social Work in the Faculty of Sustainability, Education, Environment and Development, University of Manchester.  

References

Mittler, P (2010) Think Global Act Local: A Personal Journey, Bloomington, Ohio and London, Author House.

Mittler, P. (2013) Overcoming Exclusion: Social Justice through Education, Routledge Library of Educationalists.

Wendy Mitchell (2018 ) Someone I Used to Know, London: Bloomsbury.

Organisation for Economic Cooperation and Development  (2015) Addressing Dementia: The OECD Report.

Help us to continue to 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 Maria Turner

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

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

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

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

Dementia Alliance International, Maria Turner & Rhys Dalton © 2018

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

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.

“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

DAI in Chicago #2


DAI member Christine Thelker from Canada presented on Day 2 of the ADI Conference in Chicago recently, opening the proceedings for that day. Her speech was incredibly powerful, and we are proud to be able to highlight it here, with the recording and her full speech notes. Thank you Christine for allowing us to share it; we are all very proud of you, and extremely thankful for your passionae advocacy for our rights, for better services and support, and for everyone to truly work together. The issue of living alone with dementia was also coveredwell,and it is such an important one.

Stigma – A Mark of Disgrace

I didn’t ask to have dementia. I didn’t get to choose if I want to live with it or not.

But, YOU have a choice about how to respond to me and my illness. I want to live in a world free from the stigma of you misunderstanding my truth.

Initial reactions to dementia

When you have Dementia, most friends and family don’t want to know, they don’t ask, they don’t want to see. Immediately the picture is formed in their head of someone sitting in a facility staring into space, drooling. You’ve seen the pictures many times. I still remember the conversation with family, about whether it was a good idea or not to let people know of my diagnosis.  What ???

It’s better not tell the kids, they won’t understand, it will scare them. Don’t tell the adults, they might be embarrassed – Right!!!

The effects of the stigma start the minute you get the diagnosis. What is amazing to me is when someone is struck with another serious illness like MS, Kidney Disease, everyone is notified, the troops are called in to help ensure everything that can be done is done. So why does Dementia not warrant the same response?

You have friends who say “Oh don’t worry about it, it happens to me all the time.” What is happening to me is NOT happening to them! 

Other people think they alreadyunderstand everything so when you try to explain what’s going on you get “I know all about it”.

One of my nursing friends said she knows and gets it because she’s worked in nursing for years so no one has to explain to her. I looked at her in disbelief and told her she didn’t have a clue.  Such people act un-teachable.

The stigma also means you are no longer included in the planning of events. Or, if like myself, you were always the designated planner, now trying to orchestrate an event becomes difficult, not because of your own limitations, but because others immediately perceive your abilities are now non-existent.

A case in point: during my working career and every year since I have organized an annual luncheon for a group of nurses and other professionals in the Health Care Field. This year we had an invitation list of 248 people. Up to now I have always done all the planning and organizing on my own, this time I asked a friend to help, because I get fatigued more quickly and my eroded self-confidence makes me feel like I shouldn’t be doing these things on my own anymore.

Even though both our phone numbers were on the notice, mine listed first, all of the people who in past years have contacted me directly to RSVP now bypassed me and reported to my friend. Without them having to say it, it was because they were not comfortable with my Dementia or having a conversation with me.  These were all people who should know better but only 5 or 6 actually did.

Recently a friend said that it really hit her in how others were reacting towards me. They ask how I am instead of visiting with me directly. They ask with pity, “Does she still know who you are?” When she suggested they go see me they made it clear they were not comfortable doing that. I told her they don’t realize I understand exactly what they are doing and why, but that doesn’t make it any easier to take. She said in her conversations she could tell the people who were asking about me, the person, versus me, the Dementia Patient. She said the difference was so obvious it sickened her. 

Some of my friends and family have fallen by the way-side because of their own lack of knowledge and willingness to sit down and ask me what a day is like for me. 

They not only hurt me because they have this view of what it means to have Dementia, it hurts them because they are missing out on some very special times with me. 

They are afraid, but they are afraid because of my Dementia, what they hear and are led to believe. They don’t see me anymore, they see my disease and I feel it each and every time it happens.

It’s heartbreaking to know that even those closest to me are forming opinions and walking away from years of relationships 

People with dementia: self-advocates

It is in part the responsibility of the person diagnosed with Dementia to advocate and educate, talk about and learn about their illness. It is equally the responsibility of their family and friends to learn all they can to ensure their loved one can live their best life. Without people living with Dementia being willing to step up and advocate and work with organizations, none of them could exist.

Health care professionals


The medical profession has a lot to learn as well.

On a recent visit to the emergency room I told the nurses I was having a TIA and had been instructed by my specialist to go to ER for monitoring at such a time. The nurses said they didn’t believe that was happening to me. They then went around the corner as though I wouldn’t be able to hear and decided I was likely confused by my dementia and really couldn’t know if I was having a TIA. I wanted to get out of bed and hit someone I was so upset. I was left unattended for hours, finally realized they were not taking me seriously and went home to live through it on my own.

I worked for our Provincial Health Authority for 13 years in Dementia Care. I sought out my own specialized training that was current and up to date.  Many of my colleagues respected my advocating for the patients. Yet the day my diagnosis was handed to me the ‘powers that be’ said, “forget about your job…you’re done”. No one was willing to assess my abilities and see how my position could be revamped to allow me to continue working.

Telling us to go home and die…

The doctors tell me to ‘live your life while you can and get your affairs in order’. I am grateful for that piece of advice, however, statements like that take away a patient’s hope; it is a stigma that is perpetuated by the medical community who should be there to offer support. Lack of hope, at some time, effects every single person living with the illness. We need to educate the medical community to provide support from diagnosis onwards. Yes, they must be truthful about our illness but they can be honest without taking away hope. This will go a long way to help end the stigma around the illness.

YOUNGER ONSET DEMENTIA AND DISCRIMINATION

The importance of education and incidence of DISCRIMINATION is highlighted by a phone call I received about a year later, from the very people I worked for in the medical community.

“Because of your vast knowledge and skills working with Dementia Clients, would you volunteer your time to help our clients and staff?”

WHAT????

Yup there it is … an absolute insult. I’m not fit to work because of my dementia but I should give my knowledge  away to the very people who turned their backs on me. 

I am not working because of the deep-rooted stigma and entrenched discrimination that surrounds dementia even in the medical pofession, and also most other employers.

I still feel sick about a recent statement made by a bright young woman who is taking a care aid course.  She was preparing to go out on her first Practicum when I enquired if she would be working with Dementia Clients.

She made this statement:

 “Yes, but it won’t be a big deal because I’ve learned that people with dementia have brains that are shrivelling up and what I do doesn’t matter because they won’t know or won’t remember.”

This statement is not the fault of this young person but does show the lack of understanding and knowledge even our current medical teachers have. We desperately need more education on all levels to help the health care community realize dementia is not the person.

But this continued and all too common ignorance deepens the stigma and discrimination towards all people with dementia.

RE-INVENTING THE WHEEL 4 CHANGE

I don’t believe in re-inventing the wheel, I do believe sometimes the whole wheel needs to bereplaced.

The medical profession has to start listening to those who have Dementia for they are their best teachers. They can and should have a voice in all curriculum used and how it is taught throughout the medical profession. 

Then there are the organizations who profess to help us.At one of my first coffee get togethers hosted by a lady from the Alzheimer’s Society I sat in a room with 6 other people battling dementia. She gave us rules for how the coffee time shouldgo and regulated our conversation. I asked one of the men what type of Dementia he had. I was immediately told that that was not an appropriate question and the doctors no longer tell patients what type of Dementia they have, just that they have Dementia or Alzheimer’s. I know this is false, because my doctor has been very good at keeping me informed about my particular diagnosis.

During one of our latercoffee meetings an old gentleman who hadn’t been responding turned to me and said, “I’m fascinated by you”. I laughed insurprise. Then he said, “I’ll talk to you!”

So, the dialogue began. He opened up about trying to come to terms with his dementia diagnosis. By me accepting and listening to his verbal and non-verbal cues, he found the ability to voice what he was feeling.

Because of the facilitators lack of training she was trying to run the coffee time as though it was a professional meeting and left this man out.

I also did an interview for CBC Canada at a local radio station and a bit later they created a web story about me. Someone atCBC contacted the Alzheimer’s Society to get their reaction to my interview. I had clearly stated I would not go into a care facility because they don’t promote quality of life. Her response to my opinion was to completely try to negate my perception by stating “It’s Not That Bad!”  (It is! I worked in those facilities and know them too well.) When I emailed her to let her know how I felt, knowing that she had never worked or stayed in one so had no authority to make the statements she did, she did not respond.

Instead I received an email from one of her peers explaining to me how much the Alzheimer’s Society does for Dementia.

She gave me the script they give to everyone. I responded to her about the lack of willingness to even converse about the incident and I have never heard anything more.

Again, trying to bridge between the work we do and the Alzheimer’s Society does, I reached out to see how we could help each other. I told them of my speaking here today, and our fundraising efforts to help make it possible. I was told that they would not help because they want the money they raise for themselves. WHAT!!!

WE NEED A COMMON GOAL

And here I believed we had the common goal of helping people with Dementia live better.

I continue to reach out to try to work with them for the common good but I can tell you it is really difficult.

These kinds of incidents are perpetuating the stigma and causing isolation.

Other organizations are seeking funds and deciding how and what the funds are being used for under the auspiceof it being for the Dementia Clients without any input from the clients themselves.  This perpetuates the agendaof the peoplemaking the decisions and has little or nothing to do with us the actual peopleliving with the disease.

LIVING ALONE WITH DEMENTIA

Is a widely untouched but very real reality for many of us. we often hear how we : shouldn’t be living alone, can’t live alone” another perception that creates more stigma.  Living alone means we have to work harder to ensure we are one step ahead of our illness. Living alone provides me with the ability to make choices for myself, without having to have a caregiver who wants to help but inevitably takes away my abilities.

I also am forced to use my brain, because I cannot become dependant on any one else to catch or ensure mistakes aren’t made. It is essential we find tools and ways to stay independent from using Technology ( Alexa), to help us with reminders and appointments, to meal planning and preparing and safety issues. ( I have a life line that is good anywhere in Canada with a build in GPS).  Isolation is a bigger risk factor.  Staying connected with others,  (for me it is with Dementia Alliance International),  who together we collectively check in on each other, the education and support groups are a life saving tool for someone who is alone. It was life saving for me.  

I would like to bring to your attention to DAI and its members who work to help people living with Dementia, fight the stigma by writing blogs, doing webinars and holding on-line support groups. We do this with no staff and little to no funds from any of the organizations proclaiming to support Dementia.

DAI is an under utilized Organization by all other Organizations. This has to change.

 

From all over the world I receive these kinds of comments on a regular basis:

Thank you Christine, you are the voice I need to hear. MB

Christine you are an eloquent writer, you invite us every day into your intimate space. We laugh, cry, grieve, and wow with you. For me your daily journaling has only made me a better caregiver. I use what you teach me to reach my clients, meet them where they are; I listen, participate, and dance. Thank you. C.F

Your blogging is helping so many people now & in the future. You are a blessing to humankind! A.P. 

So in closing I would like to thank ADI for the opportunity to open today’s proceedings, it is an privilege and honour. Also thank you to my DAI family for being my beacon of light through my darkest hours, you truly saved my life.  So today I ask you to help change the stigma by changing the way diagnosis is delivered, change it from there’s nothing we can do to “ here’s a nutrition & lifestyle plan, here is DAI, an organization that can offer support, education to you, and here is the information for organizations to help your loved ones. 

Leave the stigma behind.

Help us Provide the Hope

Help us thrive.

THANK YOU

SEE THE PERSON NOT THE DEMENTIA

Copyright: Christine Thelker 2018

 

Civil Society Forum – Day 2 update

In June I was representing DAI in New York attending day 2 of the pre conference Civil Society Forum , followed by the 11th Session of the Conference Of State Parties (COSP) on the Convention of the Rights of Persons with Disabilities (CRPD).

I apologise for a late report on it; and there are more to come! Clearly, there are not enough hours in each day, or days in each week!

The Overarching Theme this year of the 11th COSP was “Leaving no one behind through the full implementation of the CRPD”, with the following Subthemes and Crosscutting themes.

Sub-themes:

1. National fiscal space, public-private partnerships and international cooperation for strengthening the implementation of the CRPD
2. Women and girls with disabilities
3. Political participation and equal recognition before the law

Cross-cutting theme:

Promoting high-quality disability statistics and disaggregation of data by disability status for the full realization of the rights of persons with disabilities.

It was very pleasing to be given the opportunity to make various statements, the first one on Day 2 of the Civil Society Forum, the pre COSP event which I was only able to attend on the second day. It was an opportunity to ensure dementia was not forgotten as a condition causing acquired, and progressive cognitive disabilities.

My first statement, not pre-planned, but made in the discussion time after the main speakers in the aftrenoon of Day 2 of the Civil Society  Forum on June 11, 2018 is listed below.

Statement 1 – Day 2 of the Civil Society Forum in New York, preceding the COSP.

My name is Kate Swaffer, a co founder and the current Chair and CEO of Dementia Alliance International. I’d first like to thank Klaus Lachwitz from the International Disability Alliance for mentioning dementia in his earlier comment, which was the first time this condition has made it into the discussions today.

I represent the 50 million people currently living with dementia, and am also one of them. The WHO states there is a new diagnosis of dementia every 3 seconds, and whilst dementia is a chronic, progressive terminal condition, it is also the leading cause of death and disability in older persons.

Yet most people in civil society do not yet see this condition as one that brings with it acquired cognitive disabilities, and I ask that we consider this today, to ensure that no one is left behind.

Dementia disproportionality impacts women and girls; more women are diagnosed with dementia, and women and girls make up more than two thirds of unpaid carers, and more than 70% are women and girls in Low and Middle Income Countries.

People with dementia are systematically excluded from rights based and equitable inclusion; the barriers are far more than dementia.

The real barriers are due to stigma, discrimination and the misperceptions about the capacity of people with dementia, and the many breaches of our most basic of human rights.

Inclusion continues to be a ‘tick box’ experience for many of us, and very often, self-advocacy requires significant self-funding, simply to ensure our rights under Articles 4.3 and 33.3, of which discussions have been exclusively focused on today.

We therefore ask for not only inclusion, but for appropriate funding from governments and NGO’s or DPO’s to ensure full and equal inclusion and participation of this cohort, to enable it. As many have speakers have stated today, this is undoubtedly our right.

Thank you.

Kate Swaffer
Chair, CEO & Co-founder
Dementia Alliance International

Canadian members hard at work…

It has been a few weeks since the Canadian National Dementia Conference held in Ottawa May 14 & 15th 2018, and although belated, we are posting the excellent speeches given by two of the co-founders of the Ontario Dementia Advisory Group (ODAG).

We are very proud they are also DAI members; Phyllis Fehr is a DAI Board member, and Mary-Beth Wighton who is the current Chair of ODAG,  and along with Jimm Mann, is a full member of the Canadian Ministerial Dementia Advisory Group.

Today, we are publishing Phyllis’s speech, and tomorrow, Mary-Beths. To say the people living with dementia in Canada are ahrd at work is an understatement, and we congratulate and applaud them all as they work together to ensure the Canadian Dementia Strategy is fully embedded with human rights. Yes, their human rights.

Phyllis Fehr’s Inspirational keynote speech:

Good morning everyone.  How are you this morning?  Are you all excited to be here?  Are you ready to join me in getting down to work? 

First a few THANK YOU’s are in order.

Thank you, Public Health Agency of Canada for taking on the Daunting task of planning the first-ever Canadian dementia strategy conference.  You have remained dedicated and worked hard to make this conference a reality.  I thank you for inviting us to participate.

It is a great honour for me to be here, today.When I say this, I think of the Number of people invited to be in this room -around 150 invited guests. You could have chosen any one of the  

36,290,000-people living in Canada. Yet, here WE are. 

For people living with Alzheimer’s and dementia this is very important because there are 564 thousand people living in Canada with a form of dementia  and there are about 25 of us in this room. 

I see some familiar faces in this group, those of you I have not met yet, I am hoping to get a chance to meet you over the next couple of days.

To begin, I’ll tell you a bit about myself.

My name is Phyllis Fehr. I worked as an ICU RN until I developed younger-onset dementia. At the age of 48, I started to see some typical early signs, such as misplacing things and forgetting appointments. It wasn’t till I was 53 that I received a firm diagnosis, after going through a two-day battery of testing. 

I will never forget that day or maybe I will, but I feel like it has been branded in my head. You see on that day we were escorted into the gerontologist’s office.

Once she entered the office, I felt like I no longer existed.

She looked at my husband and spoke to my husband. As far as she was concerned, I was not there. She told him that I had “early”-onset Alzheimer’s and that I was still doing well. She instructed him to bring me back when I couldn’t dress myself. 

I couldn’t say a word! I was in shock. First, I’d been given a diagnosis of a terminal disease. Yes, I was a health professional and aware. Yes, I was ready to hear the diagnosis.

But she treated me with disrespect. She ignored me. One day, I’m functioning and the next moment, I am diagnosed with Alzheimer’s and have immediately lost all capacity? That experience really bothered me. So, I requested my neurologist to refer me to someone else.

For nine months, while I waited, I became with drawn. I did not want to be involved. That first gerontologist left a disabling impression upon my being. I lost all confidence in knowing anything. She actually broke my will to continue on.

The referral took a while, but it was worth my wait. This new doctor, spoke to ME. 

She seemed to understand what I was going through. She supported me and encouraged me. This made a world of difference to how I thought about dementia. She gave me back my person hood, she gave me back my will to go on, she turned me into the person you see today, the person who goes out and advocates for dementia, advocates for change. 

I have regained my voice, I have regained my confidence.

I am involved again, not just in advocacy and public speaking, I’m involved in research, I am a test subject and I am a researcher. It may be hard for me but I can still do it. I sit on a group called the voices group, we help research from our lived experiences and we are respected.

Today, I realize I still have my intelligence. I just need to access it, differently. I still have all my educational experience. I am still ME.

In truth, my dementia journey began much earlier than age 48. It began when I was 13.

My grandmother came to live with us because she had Alzheimer’s. Years later, my mother was diagnosed with dementia. What a different world we live in today, compared to in the 60s and 90s.

I will end my journey with a story. In our family we are very open and honest about dementia we don’t hide. We educate ourselves about it including the little ones. Not like when my mom and grandmother had it and it was hidden. My four year old grandson has developed stuttering and he attends speech and language classes.  

A couple of weeks ago while there they were doing the education around stuttering and the pathologist took down the mannequin and open it up, so he could see the brain, lungs etc and she explains how it is the signal from the brain that makes you talk and how his signal is getting mixed up.  My grandson looks at the mannequin; deep in thought, when he looks up he looks across the room at his mom and yells “mom I know what’s wrong with nanny, her signals get mixed up just like mine. Out of the mouth of a 4 year child. 

Over the next two days we are going to hear and have a chance to give our input on a number of different topics relating to Alzheimer’s and dementia. 

Things are changing. More people are growing aware, of what it means to live with dementia. Today, we’re working together to make Canada a better place for people living with dementia – to live and not hide.

For those of us who are here representing people with lived experience, we feel an urgency to do this work. This is because we are all aware that this disease is terminal, we know the different stages that we will go through. What we don’t know is when, or how long we have before the decline starts. That is why we feel that this is such an urgent matter.

We are also well aware that there are many others in Canada who will continue this work where we leave off. I am living with what I call the roller coaster of dementia. I have high times when I function well, i have low time when it is hard to function or think, i even have moments when I  are totally derailed.

But I dust myself off and get back on that track maybe a little worse than when we derailed but i keep going. We just don’t know when the day will come that we won’t be able to get back on the track. This is why we all work so hard to make these changes so that in the future other may have a smoother ride. The other side to this is that we have to take into consideration is age and other co-morbidities. We are learning that this is not just a disease of the old.

I don’t know about you, but when I looked at the program for the conference and knew I could choose only one topic in each of the three dialogue sessions, it was hard deciding.

There’s so much work that needs to be done so much work that people with dementia need to have input into. I think this is just the start.

I would also like to Thank you, Laura, Mary Beth, Tammy and Lisa for presenting the preconference workshops.The information you shared will make this conference easier to navigate and help educate us on each dialogue session so that we can better choose which sessions best fit our individual needs.     

The people in this room today represent the 10 provinces and 3 territories in Canada. We have worked to help bring about change for those living with dementia, whether it is in our community, province, or country. The next two days of work will empower us with stronger voices and will give us more solid ground to stand upon. 

What we learn here, will help us implement the changes necessary for people living with dementia in Canada. 

Are you ready to join me… to roll up your sleeves, and get to work? 

Together, we can make the changes for people with dementia to live well with this disease.

Together we will build a world-class national dementia strategy for Canada!

I could go into some of the topics that we will be discussing but I leave that to the other experts that have joined us here, today and tomorrow

In closing I leave you with a quote from Anne Lamott. She once said “Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don’t give up.”  So, I feel that we have waited, watched and worked, and today the dawn begins for dementia in Canada.

Let’s work together. 

Day 2 World Health Assembly #WHA71

It seems I may have implied I would write a blog for every day of the World Health Assembly this week, to report to members and others what has been happening in Geneva. Of course, this is quite an undertaking, considering the length of the days and the energy it takes to get through them, and to write a blog. But, I am attempting to live up to my promise!

The Alzheimer’s Society UK has renamed it’s annual awareness raising week to Dementia Action Week, and it is unusual this year that this coincides with the 71st World Health Assembly and the 70th birthday of the World Health Organisation, almost blurring the topics on which to write about.

But of course, we all want Action.

We, meaning those of us diagnosed with dementia, have been waiting for ACTION for many years. Perhaps what I am sharing now, will lead to real action, for all people with any type of disability, including those caused by dementia.

Hence, this blog is not about reporting on the sessions I have been attending or involved in today specific to Day 2 of the 71st World Health Assembly, which I had promised, but rather, to report on a new venture, that DAI has been involved in, and is now a key part of.

For me personally, as I have been advocating for rehabilitation for dementia for many long years, it felt like the best day of the last 10 years of my life, since my diagnosis at the age of 49!

This new Association, The Global Rehabilitation Alliance  was born from the meeting in Geneva which I attended representing DAI in February 2017, REHABILITATION 2030: A CALL TO ACTION,  and the work and global collaboration since this forum.

Many do not yet believe rehabilitation and dementia go in the same sentence, including many rehabilitation specialists, in spite of there being very good evidence for it as far back as 2008 (possibly further, but my energy to research this any more is low!).  

The participants of the Rehabilitation 2030 meeting in 2017 committed to strengthening health and social systems to deliver rehabilitation services.  Strong global advocacy will be vital to the successful implementation of this goal, and this new group hopes to do just that.

Historically, however, rehabilitation stakeholders have been fragmented and lacked a unifying platform for strong and consistent messaging and collaboration. The Alliance aims to fill this critical gap, bringing together motivated and committed stakeholders across disciplines and spheres of influence towards a common vision. 

 The Global Rehabilitation Alliance Vision Statement:

The Alliance envisions a world where every person has access to timely, quality and user-centred rehabilitation services.

Dementia Alliance International is now a founding member of this new Association, and together, we now have an opportunity to influnce key staeholders in the value of rehabilitatin for all people with dementia. I don’t currently have the full list of the 14 founding member organisations, but it includes the World Federation for NeuroRehabilitation (WFNR), World Federation of Chiropractic (WFC), the International Society for Prosthetics and Orthotics (ISPO), the ICRC MoveAbility Foundation,  Humanity & Inclusion (HII), the World Confederation of Physical Therapy, the  Global Alliance for Muscoloskeletal Health (GMusc), and DAI!

DAI is in a unique position to ensure people with dementia are afforded the same rights to rehabilitation as all others, and can now very loudly demand rehabilitation in National Dementia Strategies or Plans, and Clinical Dementia Guidelines.

I’m sure those without dementia will not really understand the significance of this, but for me and I am sure many others living with dementia who have been denied easily accessible and affordable rehabilitation, it heralds the start of a new era, where people with invisible cognitive and other disabilites due to their dementia will also be incuded in the global push for accessible and affordable rehabilitation for all.

Onwards and upwards, together, fighting for our #Rights4All

Kate Swaffer
Demantia Alliance Inernational
Chair, CEO & Co-founder

 

The group photo below is of the 14 founding organisations, names and all orgnisations to be provided as soon as possible!