Living well - Quality of life - Becoming a peer mentor or advocate

This section contains frequently asked questions and answers to help you find information about becoming an advocate and / or peer mentor. People with dementia can often experience an identity crisis, as they negotiate the changes they are going through and adjusting too. Becoming a self-advocate or peer mentor can help to make sure your needs are met. Becoming a social advocate in support of the dementia cause can provide a sense of purpose and meaning in life as you work with others to raise public awareness of dementia and the supports needed for quality of life. It can also help you to realise you are the same person as before your dementia diagnosis.

Source: Compiled with permission from Alzheimer Society of British Columbia. (n.d.). Memory Problems? British Columbia, Canada: Alzheimer Society of British Columbia.

Frequently Asked Questions

Why should I become a self-advocate? Click for answer

Being a strong self-advocate is one way you can help yourself and make sure your needs are met. Speaking up when you have questions or concerns can boost your self-image, leading to more fair treatment, higher levels of respect and greater consideration toward your needs.

Source: Compiled with permission from Alzheimer Society of British Columbia. (n.d.). Memory Problems? British Columbia, Canada: Alzheimer Society of British Columbia.

What ways I can advocate for myself? Click for answer

There are a number of ways you can begin the process of advocating for yourself, such as:

  • Make sure doctors and other professionals explain information in a way that you understand. This may include the use of diagrams or explaining things more slowly.
  • Volunteer with the local Alzheimer Society.
  • Try to ask effective questions to make sure you get the information you need. A few techniques you can use when asking questions include:
    • Have a clear focus to your question. Consider what you want to find out from asking the question.
    • Ask questions in a place where you feel safe and secure.
    • Start off by asking questions that are more broad, working your way toward more specific questions.
    • Be an active listener. When you receive an answer, try sharing the response in your own words. This will help you retain the information.
  • Have confidence in yourself

Sources:

Compiled with permission from Alzheimer Society of British Columbia. (n.d.). Memory Problems? British Columbia, Canada: Alzheimer Society of British Columbia.

Compiled with permission from the Murray Alzheimer Research and Education Program (MAREP). (2005). Self-Advocacy Workshop. In A Changing Melody 2005 Proceedings Manual. Waterloo, ON: MAREP.

Why should I advocate for the dementia cause? Click for answer

Advocating for the dementia cause is a way for families, friends and members of the community to connect and come together, in support of persons with dementia. Group advocates work to ensure persons with dementia and their partners in care have access to proper services in the community. Advocates also focus on making sure the voices of persons with dementia and their care partners are being heard and valued.

What are the ways I can advocate for others and the dementia cause? Click for answer

You can volunteer for your local Alzheimer's Society. Volunteering is a way to build new friendships and your self-image, by working and helping others.

Source: Compiled with permission from Alzheimer Society of British Columbia. (n.d.). Memory Problems? British Columbia, Canada: Alzheimer Society of British Columbia. 

What is a peer mentor? Click for answer

A peer mentor also plays an advocate role. They may offer moral support, helping to explain issues through open discussion and questions to other persons with dementia or their partners in care. Becoming connected as a peer mentor, or within a peer mentor group, is a great way to feel valued and to feel part of the community, whether you are being helped by or helping others.

Source: Compiled with permission from Alzheimer Society of British Columbia. (n.d.). Memory Problems? British Columbia, Canada: Alzheimer Society of British Columbia.  

How can I become a peer mentor? Click for answer

There are several ways to become a peer mentor in your community, which include:

  • Volunteer with the local Alzheimer Society and their day programs.
  • Offer to speak at a local Alzheimer or community event.
  • Connect with other persons with dementia in your community through support group.

Source: List compiled with permission from Murray Alzheimer Research and Education Program. (2008). Tips and Strategies: A 'By Us For Us" Guide. Waterloo, Canada, University of Waterloo: MAREP. 

Who else can be an advocate? Click for answer

Anyone can be an advocate!

  • Family and friends can act as advocates because they are often people who closely understand what you want and need.
  • The Alzheimer Society provides support through information and a variety of resources such as local contacts (e.g., advisors and medical experts) to deal with early stage problems. They can also connect you with potential advocates if your family does not live nearby.
  • Medical professionals can assist you in connecting with a local peer support groups closest to you. This can help decrease your feelings of isolation, depression and frustration.

Source: List adapted with permission from Alzheimer Society of British Columbia. (n.d.). Memory Problems? British Columbia, Canada: Alzheimer Society of British Columbia. 

What should I look for in an advocate? Click for answer

  • Someone who shares your goals.
  • Someone who is caring, honest, trustworthy and capable.
  • Someone who is willing to listen and understand.
  • Someone who understands your needs and wishes.
  • Someone who can communicate for you when you are not able to.
  • Someone who respects your voice and lets your voice be heard as often as possible.

Source: List adapted with permission from Alzheimer Society of British Columbia. (n.d.). Memory Problems? British Columbia, Canada: Alzheimer Society of British Columbia.

Helpful links and resources

Advocacy - Alzheimer Canada
The Alzheimer Society participates in advocacy at both the national and provincial levels to bring lasting and impactful change and to help families affected by dementia live their best possible life. 

Dementia Alliance International
Dementia Alliance International (DAI), the Alzheimer’s Society UK,  and the 3 Nations Dementia Working Group (3NDWG) have worked in partnership to develop two resources to educate, inspire and empower more dementia self-advocates.

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