27/03/2014

1

1

How to Speak Up About Dementia and Make Changes to the System

Apr. 1, 2014

Barbara Lindsay &

Rebecca Morris

2

Alzheimer Society of BCVision and Mission

Our ultimate vision is to create a world without Alzheimer's disease and other dementias.

The Alzheimer Society of B.C. exists to alleviate the personal and social consequences of Alzheimer's disease and other dementias, to promote public awareness and to search for the causes and the cures.

3

Information

Education

AdvocacyResearch

Support

27/03/2014

2

4

Overview

• What is advocacy?

• Talking to others about advocacy

• Engaging your MLA

• Using Social MediaPainting: Ted Harrison, Walking Alone © 2003

5

What is Advocacy?

Types of Advocacy:

Systemic Advocacy and Personal Advocacy

6

“It’s like you have to fight for everything.

You have to fight with the doctor for a diagnosis.

You have to fight for the medication.

You have to fight to see a specialist who can help you.

Then you have to fight for help - when you need help in your home, you have fight for that.

…and then you finally get them into care and then you have to fight there.”

27/03/2014

3

7

Systemic Advocacy

Speaking-up to create positive “system” change.

8J.W. McConnell Foundation

“There are no

coincidences in politics. If an issue

is on a platform or a

policy agenda, it’s because someone,

or a whole lot of

someones, have worked long and hard

to put it there.”

9

Talking to Others About Dementia

27/03/2014

4

10

Do You Know Who Your MLA Is?

• Find out here:

http://www.leg.bc.ca/mla/3-1-1.htm

• Or call Rebecca Morris at 604-742-4939

11

Writing a Letter to your MLA

• Succinct, but personal is best

• Put your ‘ask’ in the first paragraph

• Be courteous

• Consider asking for a meeting with your MLA

• Send a copy of your letter to other people who could help

12

Writing a Letter to your MLA

• Include your contact information

• Request a response

• Follow up on your letter

• And remember… your MLA’s job

is to listen to their constituents

27/03/2014

5

13

A Letter Which Could be Improved

Hi Mr. Partridge,

Why can’t you people get the health care system right? I was in emergency with my husband for 5 hours last week and some stupid nurse didn’t

understand anything about dementia. …and then she said…and then I said that…and my husband was confused….

We need change and we need it soon. I would like to hear from you about

what changes the government is going to make to fix these problems.

Thx,

14

An Example of a Good LetterDear Minister Sawatzky,

I am writing to ask you to support the expansion of the First Link program

across British Columbia. My husband received a crushing diagnosis of Vascular dementia in 2009 and since then the program has been a huge

help to me and my family. Without First Link and the support and education which it has connected me to, I don’t think I would have been able to care

for my husband at home as long as I have.

I am passionate about this issue because I know that this journey would be

much more challenging for those who live in a community without First Link.

I hope to see the program expanded as a way to support caregivers for

people with dementia across B.C.

Do you support the expansion of First Link as a way to support caregivers

and further the Dementia Action Plan?

Yours truly,

15

Letter to the Premier

• Supporting Premier Clark and sharing our stories as she prepares for the Council of the

Federation meeting this August.

• Letter available as a handout after this presentation or by contacting Rebecca Morris at 604-742-4929.

• Remember to also send a copy to your MLA

27/03/2014

6

16

Meeting with your MLA

• Consider going with a group

• Come prepared, but don’t expect to need to be the expert or a Society representative (and it’s okay to say so!)

• Be on time

• If there are follow up items summarize them at

the end of the meeting

17

After your Meeting

• Follow through with any action items

• Consider sharing on social media

• Send a thank you note

• Follow-up in six months – 1 year

• And remember, your experience makes you an

expert!

18

Writing a Letter to the Editor

When?

Whenever dementia is in the headline!

What?

Bridge the story to your experience and the need to keep dementia at the political forefront.

How?

Send it in the mail or through the papers website

27/03/2014

7

19

20

Social Media – Getting the Word Out

Use Social Media to:

•Thank a politician.

•Share a photo of the two of you at a meeting (with permission).

•Share, tweet, like or re-post Society messaging.

21

It is Okay to Ask!

27/03/2014

8

22

Town Hall Advocacy Workshops

23

Thank You!

Rebecca Morris, Advocacy Analyst:

rmorris@alzheimerbc.org

604-742-4939

24

24

Programs & Services

� Education� Healthy Brain

� Getting to Know Dementia

� Shaping the Journey

� Family Caregiver Series

� Additional Workshops

� Tele-Workshops

� Support Groups� for people with early

symptoms

� for caregivers

� Alzheimer Resource Centresfor information, education, support and referrals.

� Dementia Helpline1-800-936-6033

604-681-8651 (Lower Mainland)

Monday to Friday

9 a.m. to 4 p.m.

supportline@alzheimerbc.org

27/03/2014

9

25

Newsletter & Bulletins

Contact and eContactProvide general information about brain health,

upcoming events, and other news.

In TouchEducational bulletin for caregivers

InsightEducational bulletin for and by people with dementia

To subscribe, visit:

www.alzhe imerbc.org/bu l le t ins.a spx

Or call 604-681-6530 or 1-800-667-3742 (toll free)

26

Provincial Office (to order handouts/bulletins)

1- 800- 667- 3742 or (604) 681-6530

Websitewww.alzheimerbc.org

Dementia Helpline1- 800- 936- 6033(604) 681- 8651