Helping journalists, producers and conference planners find the female guests, speakers and expert sources they need.

A person with Alzheimer’s disease is still here

The Hamilton Spectator by Jennifer Heisz 30 January 2016

In the movie Still Alice, Julianne Moore infused grace and honesty into the struggles faced by a woman with Alzheimer’s disease. In coming to terms with the heartbreaking symptoms of dementia, Alice must also learn to confront her own stigma of the disease.

At one point, Alice confides, “I wish I had cancer. I wouldn’t feel so ashamed.” In our aging population, we are all at risk; dementia is expected to affect 1.1 million people in Canada over the next 20 years. With the spotlight in January on Alzheimer’s Awareness, we have the opportunity to challenge our views of this devastating disease that can tear apart lifelong relationships.

Not long ago, patients with cancer widely experienced stigma, fuelling misunderstanding and silence; if cancer was contagious and incurable, it was all too easy for those who contracted the disease to be shut out of society. Although there is much more work to be done, advances in our understanding of cancer through scientific discovery and education have greatly reduced the stigma.

The same cannot be said for dementia, which remains saddled with perceptions of fear and shame. Gradually losing control over our thoughts, feelings, and behaviour can feel like a return to a childlike stage. For many individuals with dementia and other mental illness, this loss of self-regulation leads to feelings of shame that are made worse by silence from family and friends.

As with cancer, the root cause of dementia is biological, and promising advances in science are slowly unravelling the mysteries of the disease. Meanwhile, with no imminent cure, it is especially important that we as a society become better educated about mental health.

For most of us, it comes down to not knowing how to interact. Consider two lifelong friends who can no longer enjoy the easy conversations they shared for so many years. This is what was happening to Chuck and Joe, friends I met while conducting research at the Alzheimer Society. Chuck and Joe had been avid baseball fans for decades. When Joe developed dementia and needed support, he moved into a nursing home. Chuck called Joe every Sunday, but for the last few months, their conversations grew stilted. Each Sunday, Chuck found himself making excuses to end the call earlier and earlier and it was breaking his heart.

Despite being engaged in the moment, Joe would often forget what was just said. This is because the disease affects the hippocampus, a key brain region involved in learning and memory. This damage makes it difficult for an individual with dementia to follow discussions about the latest news and events. Simply repeating key words to reinstate the context will help to keep the conversation on track.

What many people don’t realize is that damage to the hippocampus specifically interferes with the ability to form new memories; memories formed when the individual was younger and healthier remain intact because they are stored in different regions of the brain. For Chuck and Joe, this meant that their love of baseball could be relived in the cherished memories that were old enough to be spared by the disease.

Even with the best efforts, a loved one may be difficult, if not impossible to reach in the final stages of dementia. When the disease has damaged most of the brain, individuals can lose their ability to communicate, recognize their family, and care for themselves. This is when they need our caring, patience, and understanding the most. However, this outcome is far from the starting point. Many people live in the earlier stages of the disease for decades and remain capable, intelligent and aware, wanting and deserving our respect.

The stigma associated with dementia causes unnecessary suffering in an already consuming struggle. While the science slowly moves forward, we can take action now to improve our understanding about the experiences of those with dementia. Above all else, we need to be there for each another. After all, we are all #stillhere.

Dr. Jennifer Heisz is an Assistant Professor in the Department of Kinesiology at McMaster University. Follow her on twitter: @jenniferheisz