How to be a Spokesperson

How to advocate

The Alzheimer Society depends on volunteers like you to advocate for change that will bring more research and better care for people with dementia, their families and caregivers.

The actions of a single individual can have direct political implications.

Together, we can make a difference! Here are a few ways that you can help educate elected officials, senate members, the media and other relevant government committees. Tell us about how you are advocating for Alzheimer’s at society@alzpei.ca.

• Make an impact by mail,
• Meet with your elected official,
• Make a phone call and
• How the media can help.

Make an impact by mail

Writing a letter or e-mail is still the most popular form of communication with government offices. Communicating your views directly is a critical part of any strategy to affect change.

Because few people write to politicians, they count one letter as the voice of many voters. Imagine the impact that a thousand letters, all echoing the same demand for change, could have!

When writing your letter, remember to:

• Make your letter compelling, but be direct and to the point.
• Share your personal experience! Personal experiences are key. Share as much of your story as possible.

Meet with your elected official

An in-person meeting with your MP or staff member in the MP’s office is a compelling and memorable way to increase understanding about dementia.

Elected officials listen to voters. It’s your right to speak up on behalf of people with dementia and their families.

When setting up a meeting, remember to:

• Consult the parliamentary calendar before trying to arrange a meeting. When the House of Commons is in session your MP is likely in Ottawa. When the House is not in session, MPs return to their home communities and can meet with constituents during that time.
• Contact your local constituency office or your MP’s office in Ottawa to set up a meeting. Visit the Government of Canada website to look up the info by postal code.
• Tell the person scheduling the appointment that you would like to talk about making dementia a national health priority. Let them know that you are a constituent. Express an awareness of your MP’s busy schedule and request a 15 – 20 minute meeting.

Before the meeting, be sure to prepare yourself.

Here are a few suggestions:

• Check your MP’s website to find out if she has taken an official position on dementia care and research or has a personal connection with the disease.
• Know as much as you can about your MP. Does she sit on any relevant committees? Does she represent the party in power or the opposition? A little research goes a long way.
• Prepare an agenda. If you are bringing one or two other people with you, determine who will speak and in what order.
• Review our speaking notes.
• Remember that personal stories are powerful. If you have one, don’t be afraid to share it.
• Practice what you will say. Keep it short and direct. Plan to talk for no more than 15 minutes and allow time for questions following your presentation.
• Prepare info packages to leave behind. Use information from our fact sheets and be sure to include your contact information. (For additional information on brochures for your package, e-mail advocacy@alzheimer.ca.

At the meeting, remember:

• Plan to arrive at least five minutes before the meeting.
• Know that you may meet with a staff member instead of the MP. Do not take this personally and do not express disappointment. Staff often specialize in specific issue areas and will relay your issues and concerns to your MP.
• Stick to your agenda. Try not to go over the allocated time or you will not have time to answer any questions.
• Be compelling. Make sure your MP understands why dementia care is an important issue to you and why it should be to him.
• Don’t guess. If you cannot answer a question, offer to follow up after the meeting.
• Offer to act as a future resource. Let your MP know that he can call on you for input or advice in the future.
• Thank all participants for their time.

After the meeting, be sure to:

• Send a thank you note. Your note should briefly restate your position and discuss any commitments your MP made during the meeting.
• Stay in touch. Provide updates to your MP on dementia care and research.

Make a phone call

Phoning your MP’s office is an easy, convenient and time-efficient way to make your concerns heard. Offices note how many calls they receive on various issues so even if your call doesn’t make it past the MP’s assistant, you’ve still accomplished something.

Before calling your MP:

• Find your MP’s contact info.
• Review our speaking notes.

When calling your MP, remember:

• Expect to speak with a staff member unless you have a previous relationship with your MP.
• Identify yourself as a constituent.
• Be clear and direct about your reason for calling.
• Be personal. Let your MP’s office know why this issue is important to you and the community they serve.
• If you have time, try and determine if your MP has a connection to dementia.
• Thank your MP or the staff member for her time.

How the media can help

The media provide an important opportunity to raise awareness about dementia and our advocacy efforts. Local newspapers, magazines, television and radio stations are all useful outlets to spark public awareness and education.

The best stories are ones with a personal angle that readers and viewers can relate to. Talk about your personal experience and why we urgently need politicians to pay attention.

For help connecting to the media, contact society@alzpei.ca.

Letter to the editor

When writing to your local newspaper, remember:

• Your letter is more likely to be published if it is well-written, concise and addresses an issue that affects your community.
• Don’t be discouraged if your letter is cut from its original length. Even brief letters may be edited to fit space.

Become a spokesperson

Reporters often seek a human angle to stories they are pursuing. They are looking for someone who can talk about their first-hand experience with the disease, like a caregiver or someone living with the disease.

They typically ask spokespeople questions about their experiences and how they are coping.

Become a spokesperson and play a vital role in sharing our message! Here are a few tips to help you prepare and conduct media interviews.

When preparing for the interview:

• If possible, schedule the interview at a time when you are feeling your best. The reporter can usually accommodate your schedule.
• Arrange to bring someone with you for support during the interview. This can be a spouse, friend, or a staff person of the Alzheimer Society.
• Think about what you want to say and what you want to leave the public with.
• If you are feeling nervous, practice on your own or role play with family and friends. It may help you to feel more comfortable during your interview.

During the interview:

• Speak in personal terms. The reporter is interested in your story, and how dementia has affected and changed your life.
• If you don’t know the answer to something, say so. You can always follow up with additional information after the interview.
• Try to be concise when possible. A 10 minute interview may wind up being 20 seconds on the air or three lines in the newspaper.
• If you are being interviewed for TV, ignore the lights, cameras or sound boom. Look directly at the interviewer.
• Remember that microphones are always live.
• If you say it, expect to see it in print or hear it on the air. Nothing is “off the record.”

Become a spokesperson

Whether you are a person with dementia, a caregiver or family member, a researcher dedicated to finding a cure, or health-care professional providing care, channel your passion into becoming a spokesperson to help shine a light on dementia.

You can share your experience to increase understanding of the day-to-day impact of living with dementia by speaking at events, with the media, or with decision-makers.

Here’s what we look for in spokespeople:

• People living with dementia, usually in the early stages
• Different ages, gender and diverse backgrounds
• Experience with public speaking or talking with media (we can help you gain that experience if you have not done it before)
• Comfortable being on camera - taped or live
• At ease with having your name in print (if not, a reporter will usually respect anonymity or use an alias)
• Do not mind having your photo taken and published in print (and have signed a consent form)
• Understand deadlines and are accessible on short notice

To become a spokesperson, email society@alzpei.ca or call us at 902-628-2257.

Speaking notes

Whether you’re writing a letter or speaking with elected officials or the media, it’s important to be prepared to talk about our priorities for a national dementia strategy, and the social and economic impact of dementia. Fact sheets are also helpful for preparing an info package.

National dementia strategy

Approximately half a million Canadians are affected by dementia. That’s 1 in every 11 over the age of 65.

The economic burden of dementia in Canada, now at $15 billion a year, will increase tenfold to $153 billion.

The dementia epidemic is not just a health concern; it’s everyone’s concern. This disease has the potential to overwhelm the health-care system if changes are not made in research funding and care delivery.

Canada has no plan to respond to this rising tide and its devastating impact. It lags behind other countries like the United Kingdom, Australia, France and the United States, who have or are developing plans to respond to the dementia crisis.

Provincial Dementia Strategy

The Alzheimer Society of P.E.I. is presently involved as a member on the Provincial Dementia Strategy Steering Committee. The Dementia Strategy is intended to ease the lives of individuals living with dementia and their caregivers as they journey along the continuum of care. The goal of the Dementia Strategy is to develop a clear direction for dementia related services and supports. Up to date there have been a number of meetings including a planning day focusing on creating goals, identifying priorities, and discussing timelines. The committee has received invaluable information from experts in dementia care across Canada, including Dr. Ken Rockwood, Dr. Janice Keefe, and Dr. Nick Kates.

We must take action now.

The Alzheimer Society is calling on Provincial and the Federal Governments to act now and develop a national response to the dementia crisis that would include five workable solutions:

1. An accelerated investment in all areas of dementia research
2. A clear recognition of the important role played by family caregivers
3. An increased recognition of the importance of prevention and early intervention
4. Greater integration of care and increased use of chronic disease prevention and management
5. A strengthening of Canada’s dementia workforce

The Government of Canada must sponsor the development of a national dementia strategy that addresses the needs of Canadians affected by dementia.

Despite the lack of a national strategy Canada has valuable experience on which to build.

A national response can and should leverage the experience of provinces that have put measures in place (Ontario), provinces with imaginative new ideas (Quebec), as well as the experience from other jurisdictions facing similar challenges.

Canada must develop its national strategy in partnership with the Alzheimer Society, Canada's research community and federal/provincial/territorial governments.

Additional talking points

1. Canada is facing a rising tide of dementia:

• Every five minutes someone in Canada develops Alzheimer's disease or other dementia today; this figure will increase to one every two minutes within a generation.
• Currently, more than 500,000 Canadians are affected; this number will reach 1.1 million within a generation.
• Within the same period, the amount of time family and friends will spend caring for them will more than triple, from 231 million hours to 756 million hours per year.
• As our population ages, dementia will impact a greater percentage of Canadians.
• By 2038, the economic burden of dementia in Canada will increase tenfold, from $15 billion a year to $153 billion.

2. There is hope. Rising Tide: The Impact of Dementia on Canadian Society offers four possible interventions to lessen dementia's crippling effect on Canadian families, health care system and economy.

• The report offers four possible evidence-based scenarios to minimize the impact of dementia on Canada over the next 30 years.
• For example, delaying the onset of dementia by just two years has a potential cost savings of $219 billion over 30 years.

3. If we act now, we can stem the tide. Every Canadian has a role.

• Canadians need to learn about prevention and caring for their brain health, and about the importance of early diagnosis.
• Governments need to act. Other nations have taken proactive measures to mitigate the impact of dementia. Our federal and provincial governments need to do the same.
• Canada needs to invest significantly more into research, a critical piece for changing the course of these diseases.

Canadians need to learn about prevention and caring for their brain health, and about the importance of early diagnosis.