Upon receiving a diagnosis of dementia, most of us generally fast forward in our mind to the future of what that looks like, which in end stages, is not pretty. In speaking to Roger Marple, he strongly emphasizes that although it’s natural human nature to look at the end of days in a disease that challenges your mortality, we MUST live in the here and now if we are to overcome the stigma associated with Alzheimer’s disease. And this is how he challenges himself daily, to live in the present and not get wrapped up in the stereotypes and stigmas that can so easily envelop one’s brain.
This a message we’ve heard from other guests living with dementia as well – to be present in the moment. Both Joe Dolan and Jim Mann also talk about how this perspective can completely change the quality of life for the person living with dementia and their family as well. It is stigma that kills hope in a dementia diagnosis. Roger has been living with Alzheimer’s disease for 5 years. Yet he refuses to shy away from this diagnosis and instead, is claiming its existence as an important part of his life. His goal is to challenge society’s view that Alzheimer’s disease is an ugly diagnosis, and he is living proof of that. It was the epiphany moment he had, of recognizing the need to live in the here and now, that helped him overcome feelings of despair.
Progression surrounding dementia is painfully slow. My theory is if we all spoke more openly, aggressively, and without reservation; if we spoke in a comfortable manner [about this disease] I think a lot of these problems would go away. But before we can speak openly, we have to purge the stigma within ourselves.– Roger Marple, living with Alzheimer’s disease
- Stress hope at the time of diagnosis. We are learning about dementia in a reverse order. So much information to be found on the world wide web is about the end of life with dementia. According to Roger, living with Alzheimer’s, It’s not about how long we live and or what this disease looks like in the end of days that’s crucially important for us to learn. It’s more about living in the here and now – right now – in this moment. He highlights how the Physicians and Doctors, at the time of diagnosis, can plant a seed of hope; a message of encouragement that someone can live well with dementia. If that’s you listening today as a doctor or medical practitioner, what message are you delivering to your clients in this space? And what referrals can you offer to support therapeutic or lifestyle interventions? These elements could be a major game changer for someone in early stages of a dementia diagnosis.
- The #1 thing that gets in the way of someone living well with dementia is stigma. It’s how we view dementia on a personal level that creates stigma without us even realizing it. In our interview, Roger shares a story of a woman who referred to her family experience of dementia as shameful; and that this shame was keeping her from reaching out for support. Though this is sad to hear, it’s not uncommon. We will never break the barriers of silence in families and communities affected by dementia if we can’t get over our own internal shame. We have to accept Alzheimer’s and dementia as a normal part of our life. People live with traumatic brain injury or other physical disabilities every day and yet we still find a million ways to modify work environments and living arrangements to accommodate these life changes. Why don’t we take this approach when we hear about a friend or family members receiving a diagnosis of dementia? Instead we shake our head in sadness and say, “oh I’m so sorry.” I think the only way to start changing this response is for us to hear more success stories – stories of how individuals are using physical, occupational, and speech therapies to help the body and brain route around compromised areas; stories of individuals living with dementia who are still driving and maintaining certain types of work, like Roger and other guests. Stories of wives and partners who have figured out creative solutions in a home environment to support independence and autonomy; stories from leading researchers who are discovering that the brain is actually quite resilient and suggesting interventions that could help maintain cognitive function, prevent a decline, and support our emotional and cognitive ability for as long as possible. These are the stories we want to continue to share on Life With Dementia, and you can help, by also sharing these stories with others. Post our episodes on your social media channels. Talk about them with your friends, families, neighbors, and co-workers. The one piece of advice Roger shared, for anyone that has been touched by dementia, was to reach into your soul. Before you can speak openly, you have to purge the stigma within yourself. And until we do that, people won’t truly speak openly to others and share these messages of hope.
- People live well with dementia and it’s not always ugly. There are a thousand faces of dementia. And if we can learn to see all the faces of dementia, a lot of these poor social behaviors and responses that lead to stigma would simply stop. I love the campaigns out there to generate awareness like I LIVE WITH DEMENTIA out of Alzheimer’s Society of Canada, where you can read personal stories and see the faces of those impacted by this disease. Or the Dementia Friendly Communities Initiative, led by the Brenda Strafford Foundation in Alberta which we will learn about in our next episode, about the role we all play in creating dementia inclusive environments. Learning more and finding a greater sense of understanding is how we can all – reach into our soul as Roger said – and break apart any negative stereotypes or fears that keep us from speaking openly about a dementia diagnosis. I’d also encourage you to continue feeding us ideas for other stories or interviews you’d like to hear. Email us at: firstname.lastname@example.org.
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Follow Roger on Twitter @rogerdoger991
Photo submitted by Roger Marple. Credit to Alzheimer’s Society of Alberta and Northwest Territories
Podcast episode music by Blue Dot Sessions “OneEightFour”