Nothing about us, without us!” is an oft-repeated expression reminding us to ensure that people living with dementia are meaningfully involved, as leaders and as participants, to create the knowledge, programs and services that support a good life, despite dementia.

While involvement in advisory boards and research studies is increasing, engaging and supporting people living with dementia to participate in self-advocacy activities remains a challenging undertaking for many reasons.

Dementia Connections spoke to Myrna Norman, a long-time agent of change who has lived with dementia since 2008, about why barriers to self-advocacy persist and how they might be overcome.

Q: What keeps you involved in advocacy work?

A: My passion is to educate, to reduce stigma and to help people living with dementia find joy in their lives — turning the diagnosis from “go home and get your affairs in order” to eat well, exercise well and stay socially active. I believe that's so important.

My advocacy work helps me learn to be joyful and to satisfy my role as a citizen of my village, my city, my country.

Q: What issues and areas of advocacy do you think need the most attention now?

Myrna Norman

A: Right now, I'm involved in a panel of people living with dementia sharing their wisdom. It is unbelievable! Participants are very open about what it feels like to have dementia. It is very emotional.

I believe that the more people see people with dementia talking, sharing their opinions, it will clear some of the stigma that surrounds dementia. Most often we see people with dementia depicted at the end stage of the disease process. We need to see people who are still able to do what they need to do to stay happy.

"Dementia is kind of like throwing a rock into a stream — it ripples."

– Myrna Norman

I'm also trying to concentrate on the idea of rebuilding neighbourhoods. We don't know the person in the house across the street, and we do need to get back to that. I'm trying to change the idea that, for example, communities need to have programs in the city park “downtown”. Most people have a park of some kind within walking distance to their home.

Photo courtesy of Getty Images.

I'm trying to take it back to neighbourhoods — where people feel safe walking the park in their neighbourhood and meeting their neighbors. Safe neighbourhoods where neighbours know each other will help keep people with dementia active and safe.

Dementia is to me kind of like throwing a rock into a stream — it ripples. Dementia causes ripples throughout the community. And that's why I don't think it's right to look at a person with dementia as ‘unto themselves’. Dementia impacts their spouses, families, neighbourhoods and communities.

Q: How can more people living with dementia, or care partners, become involved with advocacy work?

A: Support groups for people with dementia, and if possible, for their caregivers, is the best way to encourage people to advocate on behalf of themselves and others.

"[People with dementia] need to hear about the advocacy project from someone we have a relationship with and trust."

– Myrna Norman

We need to hear about the advocacy project from someone we have a relationship with and trust. If somebody just asked me to join an advisory or research group, I wouldn't know what it was or how to do it. I also really need to know the specifics so that I can feel comfortable, and I think that's what we're missing in a lot of cases.

Q: You've accomplished so much as an advocate for people living with dementia, including becoming an author of books for children and adults. What inspired your most recent book, Dementia Strategies, Tips, and Personal Stories? 

A: The book is to help people live well, and to know that even after a diagnosis of dementia they have a responsibility and a right to live happy lives.

I had read several books that were above my ability to understand, and I thought, I need to write a book that's just very common language and talk about the tips and strategies that I've found to help me live well.

I also talk about some things that are negative, but they did happen to me, and since they are likely to happen to other people with dementia, why not bring them out into the open? The book is self-published because I knew that if I sent it to a publisher, they'd want changes, and I didn't want that. The book really is from my heart.

Q: What are a few of your key tips or strategies that might support a good life with dementia?

• Spark joy — There are certain things we like that are good for us. Music is one for me. When my husband puts my favourite band on, I immediately dance, but I never think to put it on myself.
• Increase communication — I think there's a missing link between persons with dementia and caregivers. Caregivers try so darn hard, and it’s a really difficult role sometimes. When there is a misunderstanding between caregivers and people with dementia they need to sit down and talk about it, perhaps with a third person. Working at communication is important to help both caregivers and people living with dementia to be happy.
  

  Photo courtesy of Getty Images.

• Spread hope — Help people with dementia understand, by word and example, that they can live well, that they have a responsibility and a right to live well. Can you imagine how much nicer it would be for caregivers, the rest of the family and for the community if people with dementia knew that they had a right and a responsibility to live well and live happy, because they often don't know that living well is possible?
• Try something new and different — It will help your brain! Make a collage with pictures right from the time you were a kid. Enjoyment magnified and available for discussion for years.
• Nature nurtures — Promise yourself to go outdoors every day whether rain or shine. You are waterproof! Deep breathe the air, look at your surroundings, bask in the beauty.