The stigma that comes with any diagnosis of dementia is one of the biggest challenges a person facing the diagnosis will have according to the Canadian Institutes of Health Research. A recent poll by Alzheimer’s Disease International found that “40 per cent of people with dementia reported they had been avoided or treated differently after diagnosis.” Earlier this year The Alzheimer Society of Canada launched an awareness campaign on this problem. Called “See me not my disease, let’s talk about dementia” the project works to encourage family members and the public to see the person beyond the disease.
For those caring for a family member with dementia and for those experiencing it, every day can be a struggle to connect, leading to a sense of frustration, isolation, grief and sadness. Then comes the next stage – avoidance – “I don’t want to talk about it.” This approach only exacerbates an already difficult situation, leading to further isolation for everyone concerned.
However, new discoveries about communication are connecting those suffering from dementia with loved ones and care-workers in new ways. Communicating through music is one way we are discovering that it is possible to see through the “disease label” to the original and true beauty of an individual, and also to see that who they are is still there…
In the USA, the non-profit foundation, Music & Memory, has been placing iPods in nursing homes across the country, and the results have been startling. Not only is music far more effective than drug therapies for controlling the effects of dementia, but it is also much cheaper. At a cost of just $80 for an iPod, music is a powerful stimulus for many patients, rousing some who have been unresponsive for years into animated conversations and activity. Before this, many patients were thought to be utterly beyond hope. Now suddenly, they were communicating. When Henry, one of the patients in the project was asked: “What does music do to you?” He responded, “It gives me the feeling of love . . . I feel the band of love, of dreams.”
For all the theories, medications and scientific studies regarding dementia, what can make a significant difference is how we see and think, and therefore relate to, those struggling with this spectrum of diseases. Taking this thought further to the love that Henry talks about, perhaps we could consider the powerful and healing effect that spiritual love can have, both for ourselves in how we see those we love, and how they see themselves.
As I see it, a deep, spiritual love beat at the heart of Jesus’ healing ministry. Love enabled him to see past the labels, right through to the unimpaired integrity of the man or woman with whom he was speaking. This connection of love brought healing in every case. For example, Jesus visited a man who had been labeled insane and who everyone feared. He was called “Legion” because it seems he had many different mental issues, also called “devils.” He was consigned to live in isolation, deserted and despised by family and friends. Jesus spoke with him in such a way that the man remembered who he was, and his friends later found him “clothed and in his right mind.” (Mark 5)
To me, this spiritual language, deep within each one of us, and demonstrated so clearly by Jesus, leads us to an understanding of our innate spiritual connectedness that can never be forgotten. It has the power to awaken new views of each other, and reminds us to not forget who we are, or who our neighbor is. At the end of the video Henry tells us he knows who he is. “The Lord made me holy. I am a holy man.”
Sharing something as simple as the love of music together is one step towards dissolving fearsome labels and misconceptions, enabling us to see the real person beyond the diagnosis and to discover a new way of communicating.
This post was published in the Times Colonist online blog Spiritually Speaking on May 15 2013