Just about everything you think you know about Alzheimer’s disease and other dementias is wrong. And because the conventional wisdom is so off-track, so are the ways we—both family members and professionals– respond to those with dementia.
That’s Dr. G. Allen Power’s provocative message. He wants us to stop thinking that people with dementia are victims of a terrible debilitating disease that destroys their memory and perception. Instead, Power argues, dementia is “a shift in the way a person experiences the world.”
In his new book Dementia Beyond Disease, Power argues that people with dementia are not psychotic or delusional. Rather, they see the world differently than others. Power’s goal is not to treat a disease. It is to improve the well-being of those who have it. And unlike drug therapies, which have been high-cost failures, Power identifies dozens of ways that may enhance the lives of those with dementia.
It is how to overstate how radical this is. It turns the worldview of much of the Alzheimer’s establishment completely on its head. And it attempts to reframe how family caregivers (Power calls them partners) respond to their loved ones.
Dr. Power, who I have gotten to know through his work with the Eden Alternative group, is a passionate voice for those with dementia. A board-certified geriatrician and Associate Professor of Medicine at the University of Rochester, Al has spent two decades working in long-term care and rehabilitation, most recently at St. John’s Home in Rochester, N.Y.
Dementia Beyond Disease is his second provocative look at memory loss. In 2010, Dementia Beyond Drugs challenged the overuse of anti-psychotic drugs in nursing homes. His ideas, considered radical at the time, have helped change the way many facilities care for those with memory loss.
In Dementia Beyond Disease, Power takes those arguments even further. He is, for instance, an outspoken critic of segregated dementia units (often called memory care) that have become the standard in many residential care facilities. At the same time, he offers many practical ideas for helping those with dementia.
Imagine someone who is extremely agitated. You can control her aggression with medication. Or you can identify the cause of her upset, and change it. Maybe she is in pain, or troubled by loud noises. She may not be able to describe in words why she is distressed. But if you know what to look for, you can learn from her body language.
Music is another example. Dan Cohen’s Music and Memory Project has had remarkable success engaging some people with advanced dementia through music (if you have not seen the award-winning film about this project, called Alive Inside, you should). My wife, who is a hospice chaplain, can attest to this. She often uses hymns and other religious music to reach people who are otherwise uncommunicative.
I recently wrote an article about a woman who is struggling to care for her father who has dementia. By trial and error, she has learned some of the lessons Power teaches, including the magic of music. When her dad seems especially troubled, the staff at his residential care facility plays some of his favorite songs. And it usually calms him.
Power is not the only one urging us to rethink dementia care. Sr. Peter Lillian DiMaria of the Avila Institute of Gerontology in Germantown NY, has been training long-term care professionals in similar techniques for years.
More than 5 million Americans have some form of dementia, yet we still know remarkably little about the science behind these diseases (and keep in mind that Alzheimer’s is just one of dozens of dementias).
With the help of people such as Al Power and Sr. Peter, we are learning about how to open doors for people with dementia. You may not agree with everything Power has to say, and research remains preliminary and uncertain on some of the ideas he espouses. But Dementia Beyond Disease will make you question what you thought you knew about these diseases. And, given how poor most dementia care is, that’s a good thing.