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People with dementia speak to Senate Standing Committee

People with dementia speak to Senate Standing Committee

2016_05-18_ODAGSenate-(35-of-44)In February 2016, the Canadian Senate asked that the Standing Senate Committee on Social Affairs, Science and Technology study the issue of dementia in our society and to provide a final report in January 2017. On May 18, Mary Beth Wighton and the other members of the Ontario Dementia Advisory Group (ODAG) presented to the committee.

View the presentation on SenVu or read her remarks:

 

 

 

Good afternoon,

Thank you for inviting us to appear before you this afternoon.  It’s an honour to represent the 747,000 Canadians living with dementia. It is important that people with dementia are able to participate as equals in all dialogue about us. According to the UN Convention on the Rights of Persons with Disabilities (CRPD) this is our human right.

The Ontario Dementia Advisory Group (ODAG) is a group of people with dementia living in Ontario. We are involved in policy-making strategies, research projects and education initiatives at the local, provincial and national level.  We have close ties to Dementia Alliance International, the international self-advocacy group of people with dementia.

We are here today as a united voice of four people. When one falters, the others will step in. This is what makes us strong.

We are parents, grand-parents, spouses, and friends. We have all had long and successful careers. When we were diagnosed with dementia, these experiences did not disappear; they are and will always be a part of us. We rely on these roles and experiences to help us with our advocacy work.

We all have many important issues to bring to this committee, but three topics of significant importance to people with dementia are:

  • The human right to a more ethical pathway of care
  • The right to be treated with the same human rights as everyone else, under the UN Convention on the Rights of Persons with Disabilities
  • The need for more research emphasis on a social rather than a medical model. Research does not only focus on a cure. It is important to take a more holistic approach to well-being.

Lack of involvement of people with lived experience, stigma and insufficient education regarding dementia is deep rooted in Canadian society. This impacts us greatly.

When I was diagnosed with probable frontotemporal dementia at the age of 45, I was told to get my affairs in order, that I had about 5 to 8 years to live and would eventually live in long-term care. My partner was told she would be responsible for my welfare and that it would eventually become totally time-consuming. The doctor then revoked my license on the spot. She told me I did not have the capacity to drive any longer. Interesting, as I drove to the hospital without any issues. My loss of license was done without any kind of due process.

My story is like most other people living with dementia. It is our desire to live life fully and utilize our remaining skills that help us remain strong. We reject the notion of going home to die. The time between diagnosis and end-stage dementia can be many years. In the meantime, we have the ability to live life well.

If I had been diagnosed with a different illness, like a stroke, I would have received an interprofessional team approach to my care. However, dementia is different. There is not a single government body dedicated to dementia. The current health-related silos don’t work well either. This results in difficulties in achieving our optimal physical, cognitive, emotional, communicative, and social well-being.

If I had been diagnosed with a different illness, like cancer, the oncologist would spend time with me, educating me about this disease and options I have available. However, dementia is different. I received a pamphlet from the doctor; she said she would notify my local Alzheimer Society as they are the experts in dementia. Beyond that, she did not offer any hope, services or suggestions to live life well with dementia, or to fully participate in society.

Finding a cure for dementia is extremely important, but our lived experience is as important as finding a cure. We hope there is a more balanced focus in research – not only about a cure but better services, treatment and care.

In August 2016, Canada will be the first country to report on its progress in supporting people with disabilities to the CRPD. It has agreed to be a pilot for others to learn from. We believe this can be used to advocate for improvements in dementia care and services.

The CRPD is important as it helps to identify practical steps to ensure people with dementia have the same human rights as anyone else. In particular, we recommend Canada takes action on:

  • Equality and non-discrimination, including the provision of ‘Reasonable accommodation” and accessibility: This may include unlawful discrimination by health care, driving license authorities, insurance companies and employers. In a nut-shell, this means to make changes so we can continue to participate and have access to anything and anywhere – the same as anyone else.
  • Introduction of the Dementia Friendly Communities (DFC) model. It has goals of reducing stigma; ensuring an early diagnosis; having consistent and reliable travel options; practical support; community based solutions, including helping us to live independently and safely in our own homes. There are many benefits of this model, including empowerment for people with dementia and the financial benefit to less time needed in costly residential or hospital care.
  • Reduction of the disproportionate use of antipsychotic drugs, physical restraints and being detained in psychiatric institutions.

The time is now to make lasting changes affecting people living with dementia and their carepartners. This must be done with us and not for us.

7717055Mary Beth is a retired vice-president and owner of a recruiting firm. She spent 10 years in dot com as a senior business analyst. Mary Beth was diagnosed with probable frontotemporal dementia in 2012 at age 45. She, along with her partner Dawn and daughter Brianna, work to challenge the stigma of dementia. She is an advocate locally, provincially, and internationally, and was named a Champion for Dementia by the Waterloo-Wellington Alzheimer Society. She has had her writings about living with dementia internationally distributed through blogs and websites. She was a keynote speaker at the 2014 A Changing Melody forum, MAREP’s 2013 Alzheimer Awareness event, and was a key figure in MAREP’s 2014 video series “A New Voice: Living Well with Dementia”. She has been a panel member at various events.

This election, support a National Dementia Strategy

This election, support a National Dementia Strategy

On October 19, 2015 the Canadian federal election will be held. And we want to reaffirm that every vote matters.
On May 6 of this year, our chance for a national dementia strategy becoming enshrined into Canadian law through MP Claude Gravelle’s private member’s bill C-356 was sadly defeated 140-139. Yes, by one vote.

When we hear about people who think votes don’t matter it’s disheartening, because regardless of context, every vote matters. Right now, each one of us gets to choose who we want to lead our country at a time when dementia is prevalent everywhere and answers are nowhere.

The Ontario Dementia Advisory Group (ODAG) is a group of people living with dementia who formed in Fall 2014 with the purpose of influencing policies, practices, and people to ensure that we, people living with dementia, are included in every decision that affects our lives.

When you have dementia, you worry about the time. How much time do you have before you: get worse; are moved into a long-term care facility; are unable to participate in committees; you die.

Yes, research is important. But so is our current living ability. We need an integrated national dementia strategy which will help support the provincial strategy here in Ontario and in the other provinces that have recognized dementia as a priority. Canadians had that within our reach. One vote stopped it.

ODAG worked very hard pushing for support of bill 356. Our effort included sending 80 individual emails to Ontario Conservative MP’s and helping the North West Dementia Working Group also send out 80 individual emails. The response was one aggressive email from a Conservative MP. This is beyond unprofessional and unacceptable. We are angered to hear that Liberal MP Yvonne Jones forgot to vote. Her vote would have passed the bill. And where were the NDP MP’s who decided not to go to work that day? Again, we needed just one vote.

This was not a straight split among parties. Nine Conservative MP’s did their homework and supported C-356. The Conservative government claimed the bill encroached on provincial health-care jurisdiction and instead put forth a motion that states dementia as a priority with no requirement for action from government.

MP votes matter. Citizen votes matter. It is paramount that people understand the importance of each vote and listen to what people who have firsthand experience of dementia want. People with dementia across Canada need the next federal government to take dementia seriously. The provinces are moving ahead on the development of local dementia strategies with a glaring absence of national leadership on the most pressing health and social challenge of our time. So we ask your candidates what they will do to support the people with dementia in your community and what their party will do for those affected across Canada.

Come October 19th, YOUR vote can send the message that as a Canadian citizen you demand a national dementia strategy. We need action and it’s in your hands.

Learn more about what you can do.

Sincerely,

From left to right, three members of the Dementia Advisory Group. Bea Kraayenhof, Bill Heibein and Maisie Jackson alongside MPP Indira Naidoo-Harris. The other two members are Mary Beth Wighton and Phyllis Fehr

Ontario Dementia Advisory Group (ODAG)

From left to right, three members of the Dementia Advisory Group. Bea Kraayenhof, Bill Heibein and Maisie Jackson alongside MPP Indira Naidoo-Harris. The other two members (not pictured) are Mary Beth Wighton and Phyllis Fehr