Living with dementia

Imagine that you are a commercial pilot flying an airplane filled with passengers bound for London, England. Over the Atlantic Ocean you suddenly lose your instrumentation and find yourself in a haze where you cannot see the horizon, yet you are still propelling through the clouds. Then for some reason, you descend through those clouds and you regain clarity and control. Alzheimer’s Disease, for those who live with it, is just like a continual rhythm of going in and out of the clouds.

For individuals living with the dementia associated with Alzheimer’s Disease, that sense of simply not knowing, – the haze and the loss of everything that is familiar – is part of their daily experience. Now, thanks to the research conducted by Professor Gail Mitchell of the School of Nursing in the Atkinson Faculty of Liberal & Professional Studies at York University; and Christine Jonas-Simpson, director of research at Sunnybrook & Women’s, the lived experiences of Alzheimer’s patients have been given a voice in a new play titled I’m Still Here. The play is based on the research conducted by Mitchell and Jonas-Simpson into Alzheimer’s Disease and related dementias.

The play will make its York University debut today from 2:30 to 4pm in the Moot Court, located in Osgoode Hall Law School on the Keele campus. It will be staged by the Act II Studio, a theatre company based in Toronto. Act II Studio is a theatre school and creative drama centre for older adults and is part of the Seniors Education Program in Ryerson University’s Continuing Education Division.

Mitchell has worked as a clinical nurse-specialist and researcher in gerontology and diabetes, and is co-author of I’m Still Here. She spoke about the project to YFile. “Christine Jonas-Simpson and I approached Act II Studio because they have done some other dramatic performances about people living with cancer. Christine and I have conducted extensive research on persons who are older and living with Alzheimer’s Disease. We have done five studies about giving a voice to people living with the Alzheimer’s Disease and we worked with people in long-term care, in the community, caregivers and those who have early onset Alzheimer’s Disease. We found it challenging to get journals to publish our findings because we were trying to give a voice to what people were saying about what it is like to live with dementia.”

Mitchell and Jonas-Simpson’s research focuses on the multidimensional aspects of aging. Considered to be a new branch of investigation, researchers are moving from the clinical view into the lives of people living with dementia in an effort to better understand the essence of living with Alzheimer’s Disease. “There is a lot of stigma, unnecessary judgment and suffering that happens for people living with dementia because they are regarded as not having a brain that functions anymore,” says Mitchell. “The consequences of the stigma of Alzheimer’s are incredibly difficult for those living with the disease and the consequences, for us as researchers who are trying to get the word out about how much they were experiencing in life and the suffering of the people that were with them, was frustrating.”

Deciding to approach Act II Studio to create a play, the pair “felt it was a perfect forum for taking all our research findings and understanding to put it all together,” says Mitchell. “The play is the culmination of two years of work on our part, the actors and the director. It has just been incredible. We co-wrote it with the artistic director and the script takes themes from our research and weaves them into the story complete with the theatrical component so that it has a flow and a feeling to it.”

Mitchell finds the transition from clinical research publishing to being a playwright fulfilling. “It is truly the most exciting transition for me because I see the power of the arts for translating knowledge in a way that I never would have imagined could happen. The play was first performed at a conference in Nov. 2004 for people who are living with dementia and Alzheimer’s Disease.”

She hopes that people would see their lives and see their experiences brought forward so that others could understand the stigma of dementia. “It was overwhelming for us, they saw their life, they saw their experiences and their reaction was so touching. We also showed it to professionals from the University Health Network and they were very moved by it,  the play touches people’s experiences – the caregivers and the people living with dementia,” says Mitchell.

Mitchell says the play shows three people living with Alzheimer’s Disease. It highlights the experiences of a woman diagnosed with the early onset form of the disease and her relationship with her daughter from the time of her diagnosis until her death. It also highlights the lived experiences of an elderly man who is in an institution. “We tried to touch everyone including caregivers and those living with dementia,” says Mitchell.

Mitchell and Jonas-Simpson worked with daughters whose mothers were living with Alzheimer’s Disease. The play articulates their experiences with the disease, the loss and gradual leave-taking experienced by the daughters as their mothers’ disease progressed. It also illustrates how they begin to connect in different ways, highlighting new love and closeness, says Mitchell. “The daughters expressed how they thought about their own lives in different ways, how they shifted their thinking and became stronger in their sense of self and their own connections with their children.”

Each of the actors in the play have or have had a personal experience with Alzheimer’s Disease and dementia, either through their own illness or through a family member with the disease. That has added an extra element to the production, says Mitchell.

When funded, Mitchell will be taking the play on the road to 10 cities in Ontario and work is underway to turn I’m Still Here into a film that will promote better understanding about the lived experiences of people with Alzheimer’s Disease.

For more information about I’m Still Here, contact Gail Mitchell at or call ext. 33897.