THIS is Alzheimers

Early Onset Dementia Alberta: EODA.CA

NOTES: 06Dec/14 Strategy Meeting

Present: Larry Quintilio (host/EODA Red Deer), Bill Moore-Kilgannon (moderator), Dalyce Comm (recorder), Bernie Travis, Patricia DeHaeck, Karen Hartigan, Serge Gingras, Betty Payne, Anne Stickney

Before the meeting began, Bernie asked that all activities be communicated between ASANT and EODA Edmonton/Red Deer/Calgary/Lethbridge.

Introduction (Bill)

The objective of the meeting is to discuss strategies for how to take maximum advantage of January being Alzheimer’s month by having an actual plan and by coordinating our efforts.

Understanding Effective Media Communication

There is public opinion and there is individual politician opinion. In January we are looking to specifically connect with local politicians and the general public through staged media events. These events can start with personal stories but must move to advocating for solutions.

Politicians are very aware and sensitive to what’s going on in the media. The Why-What-Who-When-Where format is essential to getting across information that will be processed in sound bites. So with a view to the January ’15 media events:

WHY:              We need SYSTEM change

                         Setting clear objectives – a province-wide Dementia Plan!

                         Educate … Organize … Activate!

WHAT:           Framing the message – make it connect with VALUES

                         The same message presented CONSISTENTLY

WHO:             Credible, multiple voices (EODA, ASANT)

                         Who are our allies?

                         Personal stories (with emotional impact but ‘controlled.’ (No crying on camera!)

WHEN:           When you’re advocating – when is ALL THE TIME. Having people who can respond to issues in the media and be identified as someone who can comment when issues arise.

-          January is Alzheimers Awareness Month

-          March – the provincial budget is tabled

-          Spring Election in 2016 – policy development between now and then

HOW:             Utilize multiple forms of communication

-          Radio

-          Television

-          Print – brochures, banners, posters

-          Facebook / Twitter (do we know anyone tech-savy enough to manage a Twitter feed for us?)

Us on Us

What is our story

Us on Them

Who is not supporting   us, and why?

Them on Us

Are our facts/stats   accurate?

Them on Them

What is their side of   the story?

What Are The Issues We Want To Address?

For the purposes of clarity and consistency, individuals who have dementia (whatever their age, gender or specific dementia diagnosis) are herein referred to as “Care Partners.” Those who provide support and care to loved Care Partners are referred to as “Care Givers,” and individuals paid to provide care and services to our Care Partners are referred to as “Care Workers.”


So much time is lost and expense incurred either because of non-referral or inappropriate referrals. Who are the front line workers that need to be educated about dementia care so they can make appropriate referrals in a timely fashion?

-          General Practitioners – many of whom are not even aware of the possibility of Alzheimers/related dementias at early ages.

-          Social workers

We have couples with stories of having paid $6-7,000 for private neuro-psychological testing because whomever was referring them was unaware that that testing was an AHC insured service. The issue is that it’s available to the >65/yrs population through Seniors’ Health and if the client is <65/yrs they don’t even think of referring there.

If what we need are Dementia Care Coordinators to help navigate where-to-go, who-to-see, what-to-do when you suspect dementia symptoms, first we need a Dementia Care Plan. (There are models already in place such as the Cancer Care Coordinators.)

We need to challenge the Alberta Government to clarify what is being offered and to advocate for what needs to be offered.

We need government to see that supporting not only our Care Partners, but also their primary caregivers WILL SAVE THEM MONEY. Many Care Givers would prefer to keep their Care Partners at home for as long as possible. But without essential support, Care Givers - many of whom are still working full time – burnout. When they can’t manage dementia behaviours or they’re so exhausted that they just can’t do it anymore, Care Partners are admitted to facilities, where with untrained or insufficient staff they can’t manage dementia behaviours either. So these facilities, with or without approval or assistance from the primary Care Giver, admit our Care Partners to psychiatry beds in active care hospitals where they are drugged into docility. Then, because of their behavior issues, the assisted living (AL) facilities and the long term care (LTC) facilities don’t want them so they become ‘active care bed blockers!’ a situation which has had considerable media attention of late.

Having our Care Partners inappropriately occupying active care beds is hugely expensive! It would make so much more sense financially to provide the needed support to primary Care Givers to continue to care for their loved ones at home.

With a huge population of Baby Boomers on the horizon, those of us already dealing with early-onset dementia want to address the issue of the dividing line for access being age 65.

Planning January Media Events


Dalyce is working with Dave Lowery, Editor of Vital Signs Magazine (a publication of CAMSS[1]) on an article for the January edition. For many years Vital Signs was distributed to all Calgary and area physicians. However, beginning in January 2015, it will be distributed to every registered physician in the province of Alberta. The article will focus on inappropriate use of the Mental Health Act (dementia is not a mental illness!), special challenges for EOD, and the personal financial burden that accompanies and EOD diagnosis.

At Bill’s suggestion, Deb Rakos will be sending a letter sent to the new Health Minister Stephen Mandel re: our meeting with former minister, Fred Horne. Copy him on the materials and say that we’re looking forward to working with him and his team on a Provincial Dementia Plan. Deb will be sending that draft to the coordinating committee the week of December 15th.


Deb Rakos drafted an email (with her and Dalyce as contacts) to Dawna Friesen @ Global Television asking for her assistance with publicizing the issues with early onset dementia and the need for a Provincial Dementia Plan. Both her parents (elderly – 80’s) have Alzheimers and she recently did a special. No response has been received as of December 14th.


WHO_____________ is contacting the TV stations (1) in Calgary, (2) in Red Deer, (3) in Edmonton to see about coverage for our event at McDougal Centre to raise awareness of the need for a Provincial Dementia Plan?

Patricia DeHaeck is contacting the McDougall Centre to see about booking a room for about 1.5 hrs at 10:00 or 10:30 on the morning or January 22nd. This is where the TV interviewing will take place if the weather is inclement.

WHO _____________will coordinate local support group members to show up and tie purple ribbons around the trees in front of McDougall Centre for ‘visual impact.’ Everyone attending will be encouraged to wear purple in whatever form they can… toques, mitts and scarves, ribbons, etc.

WHO _____________ will contact local radio stations and ask for airtime to discuss the upcoming January 22nd event?


[1]Calgary and Area Medical Staff Society

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