THIS is Alzheimers

Early Onset Dementia Alberta: EODA.CA

Meeting for Early Onset Alzheimers         synopsis notes    Red Deer, AB  Sept 14/13


Attendees from Calgary, Edmonton, Lethbridge, Red Deer and Stettler


Speaker/Facilitator:  Bill Moore-Kilgannon, Executive Director of Public Interest Alberta



Difference between lobbying and advocating

·        Lobbying means persuading an individual with the power to make decision about a particular situation.

·        Advocating means speaking out about your needs to the broader community. 

Bill reviewed the 7 steps to Advocacy and then the group worked through the 7 steps, sometimes as a whole group and sometimes in smaller groups.  I have blended it. 


7 steps to Advocacy


1.       Training:

·        The Flaw, the Fix, the Fight

Must define the flaw, what is wrong, and define the fix, what is the solution

You need to be fighting FOR something.

·        Outrage

You need to connect with people emotionally.  Passionate people will help you and contribute dollars to fix the situation

·        Hope

People must have home that advocating can make things better


Our group broke into smaller groups to discuss issues we face.  What are the Flaws?

a)      Physicians:  there is a reluctance to diagnose Alz when people are young (not seniors).  Often seems that doctors don’t believe it a possibility.  They see the patient for too short a time.  It is the family who notices problems but health practitioners want to listen to patients not family.  The wait time to see specialists such as neurologist is too long,  as is the access to relevant tests.  And then once there is a diagnosis, patients are not necessarily referred to correct resources.  Physicians don’t have enough information themselves.


Solutions:  health professionals need to be exposed to Early On Set (EOS) more – find opportunity for affected people to talk to students/at conferences/ etc .  There needs to be well advertised and accessible specialized clinics.  Patients/families need to have choices in medical professionals.  It should be easier to transfer patient information from doctor to doctor.  Look for holistic support. 


b)      Lack of a plan/lack of programming:  No one knows “what to do”.  When people are diagnosed after retirement there seems to be more people such as family and friends around.  When you lose your job and your spouse and friends all still work what do you do?  There are no guidelines/suggestions of what may be helpful. Every family/caregiver needs to invent their own program. There needs to be recognition of the importance of exercise, volunteer work and making/keeping connections in the community.   Programs need to be built that encourage volunteer opportunities.  Need to build partnerships with organizations that already offer recreation programs, but advocate for things at a slower pace.    Day programs need to be engaging so people affected WANT to attend and the program should be helpful, not just a babysitting service.  Currently everyone is lumped together, all treated as older seniors, not active.  Need to recognize the effect on entire family.


Solutions:  A dementia team exists but they don’t seem to have the resources eithers, lots of red tape, too many administrators not enough people on the front line.  There is a Cognitive Clinic but how are they accessed?  How do get referred?  How do health professionals and patients even know about them?   Alberta Health needs to spread information and use areas that are providing good support as an example – don’t make all areas mediocre (the same). Need to work on appropriate programing with hours that are the same as caregivers working hours, need to recognize what EOS people CAN do, must engage them, find volunteer opportunities, cognitive and physical work.  Need access to individual and family counseling. 


c)      Home Care - Home Care bases need on whether someone needs assistance bathing or dressing.  Care and access are not the same throughout the province.  In some areas Home care is helpful, in some it is as though they have never heard of Alz and certainly not Early Onset. There is not much access to respite care for the caregiver.  Caregivers are tired, working to support family and worrying about their partner at home all day.


Solutions:  Need to redefine the needs the home care should meet. Home Care needs to be expanded.  SMC needs to have the regulations reviewed and there s/b less restrictions.   Home care should allow caregivers to hire family.  Tax exemptions for families would help.


d)      Lack of appropriate long term care facilities.  No caregivers wants to let their partner go to a care facility geared towards people in their 80s.  Not enough activity, not enough for people to do and food is always an issue.  

Solution:  a Pilot Model Care Facility.  Specific training required for everyone who works there including the caretaker, the cleaning staff and the personal care attendants.  Need more rec therapists.  Facilities need to want to build better partnerships for care. Right now they are paternalistic and family is relegated to being “visitors” rather than actively part of the care equation.  Patients should not be controlled by drugs if more activity, more engagement is actually what is required.  There needs to be additional investment in long term care. 


e)      Appropriate drug use.  Doctors need to be more educated about dementia medications.  There should be better communication between health care professionals.  Drugs should be beneficial to patients rather than to make things easier for caregivers:  this is particularly acute in care facilities. 


f)       There is a general lack of education about EOS –to the public, to employers. 


g)      Navigating the system – health but also financial planning, legal issues. 


Solutions – more support for the social workers/nurses in a dementia team to get extra help (can be occasional such as financial planners).  A mentorship program may help newcomers.


2.      Observer network

·        Identify what is happening

·        From personal stories to political solution

·        Build the networks.  The Alzheimers Society already exists so there is a formal organization and staff.  There is already a base.


Who is our network? 

·        Alz society

·        Public Interest Alberta

·        Seniors Organizations

·        Post Secondary Institutions (for research)

·        Alberta Caregiver Association

·        Other Health Organizations (MS, Brain Injury, PDD)

·        Businesses



·        Need tools – facebook, twitter, website, letter writing

·        Framing VIP:  Values, Issue, Policy Solution

Value – everyone has the right to quality care

Issue – there is not recognition or support for mental health system (EO dementia)

Policy solution -

·        Communication grid

·        Media

Good book to read “Don’t think of an Elephant”

We need to know what is being said about us/the disease/the issues in order to be able to counter misinformation, or lack of information.


3.      Research

·        Who are capacity partners?  Pam Roach UofA, Alz society of Canada, Terry Green  UofC

·        What are the issues

·        What is the political context /process

Need facts

# of people in Canada with Alzheimers

# of people in Canada with Early OnSet

# of people in Alberta with Alzheimers

# of people in Alberta with Early OnSet

Alberta has the highest rate of Early OnSet in Canada.

This is a health issue so provincial jurisdiction

What are the budget implications? Note that budgets are written in the fall and presented in the spring. Budgets are written by senior administrators and deputy ministers.  Need to get them on board.

Minister of Health is Fred Horne.

Currently Canada does not have a national dementia strategy.


4.      Advocacy strategies

·        Size of the issue

·        Resources available

·        Spectrum of allies

·        Define short term and long term goals

·        Changing political conditions/ changing politicians

·        In the air – paid ads, leaders, Alz Society

·        On the ground – actual people in the community talking


The provincial group needs to narrow the list of issues to a list of 3 or 4.  Some issues/solutions are short term, and some long term.  That way when you lobby a minister you have something concrete for them to consider. 


Need to talk to other parties, not just those currently in power.  Politics/parties change and you don’t want to start over. 


5.      Taking Action

·        Working together

·        Tactics and timelines

·        Everyone plays an important role

·        Mistakes will be made

·        Adapting to changing conditions


Strategies:  invite people to our meetings.  Meet with other health allies, some have the same issues we do.  Public attention – Sept 21 is world Alz Day.  Oct 13 is a big run in Calgary Thanks for the Memories.  Look for high profile people to publically support.

Tell our stories, can get assist from Public Interest and prov Alz for video stories. 


Timeline:  Next provincial meeting is early November 2013.  Could be a video conference.  Suggested – public libraries – people to check in their area. 

January is Alz month – launch something!  The first communication effort.  Launch the firststep in Advocacy campaign. Request a meeting with The minister.  Need a small group of about 4 people with 2 or 3 asks.  (1-2 short terms, 1-2 long term)

Eg – request funding for data collection, up to date stats on Alz and EOS in alberta.  Helpful to us and helpful to AB Health for planning. 


Who in our group will share their story?  Need video profiles.


Calgary group will draft letter to minister when time comes. 



6.      Celebrate

·        Celebrate when small fires are put out, don’t wait for the big fires to be mastered

·        Be glad of changing political culture

·        Don’t burn out

·        Remember to relax and take a bath

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