“Do this,” our instructor, Teepa Snow, said, putting her hands on either side of her head. It was a workshop designed for professional caregivers—those working with dementia patients in facilities. But when I heard it was being offered I called the organizers to ask for permission to attend because I felt like I needed to know as much as the professionals know about looking after someone with dementia, and I believe in education. Permission was given to me without hesitation.
Teepa Snow is one of the top educators and advocates for positive care of people with dementia in the United States. For over 30 years, she has worked as a non-traditional occupational therapist in a wide variety of settings. She has provided direct care, consultation, and leadership in numerous settings and organizations, and has developed a best care practice philosophy reflective of her life-long journey.
She opens her workshop with the statement that no matter how much each person in the room thinks they know, they will learn something that day.
“How do you describe dementia?” she asked us, moving toward a board and picking up a piece of chalk while we felt the warmth from our hands cradle our own heads.
“Memory loss,” someone said. “Trouble with following instructions,” said another.
“That’s how most people describe it,” Teepa said. “But those are symptoms of the disease. They are not the disease. Dementia is brain failure. Like kidney failure, or heart failure, or liver failure. Remember that. Dementia is not a symptom. It is a disease. It is brain failure. And no matter what kind of dementia the patient has, there are definite things that happen during the course of it that are traceable and knowable as the result of the brain failing. There are currently no drugs that stop it, slow it down, or cure it. It is progressive, and it results in death—every time.”
She went on to say that there are between 90 and 100 different types of dementia now known, but attention is paid to only the top three or four. However, within those top-ranked types, there are many similarities regarding the progress of the disease within the brain, and the behaviors patients with them exhibit because of that progression.
Teepa’s statement, that dementia is brain failure, was one of the first things she told the large assembly of professional caregivers (and me) during the day-long workshop that suddenly and completely changed my understanding of what, exactly, was happening to my husband.
I am not a professional caregiver. My close-up experience with dementia has been limited to three people: my father, whose dementia didn’t become really apparent until he was in his 80s; Bill’s mother, who was also in her 80s before the symptoms began to interfere with her ability to care for herself, and Bill. My father lived 1,000 miles away, and I didn’t see a lot of him in his declining years. Until he died at 89, it was my mother and my second youngest sister who took care of him. My mother died a year later, at 81, and I looked after her in her home for the last two months of her life. But she died from cancer, not dementia. For more than 30 years, Bill’s mom lived close to us, and we were very involved with her, and with her care. But we never lived with her. I live with Bill. I am his sole caregiver 24 hours a day, 7 days a week.
There was so much information given during Teepa’s workshop that it was difficult to process it all just then. But one truth stood out immediately. It matters how much or how little I know, because no matter how well-meaning I might be, ignorance often causes preventable problems that can downgrade the quality of Bill’s life, of my life, and of our family’s lives in ways I may not fathom until it is too late to remedy.
There are books, magazines and articles written about dementia. There is online information about the diseases lumped under this umbrella, including websites of societies and agencies that provide services to those suffering from dementia. There are professional development workshops for professional caregivers. There are support groups for non-professional caregivers. Anyone looking after someone with dementia can find some information on the subject.
Until I took this workshop, my education regarding Alzheimer’s was the small amount of information I was given by the doctors who assessed Bill at the UBC Alzheimer’s Clinic over a four-year period, what I read on the Alzheimer Society’s website, information shared by others in a support group I have attended for a few years, and a couple of books I read, one of which was a novel that followed the progression of the disease in a woman who was a university professor. Each of these sources gave me snippets of information, none supplied me with the concrete progression of symptoms I was witnessing in Bill, or how to provide the most positive care possible for him as he entered each new stage.
Reading about behaviors that may or may not be currently being exhibited by the person you are caring for who has dementia, and how someone else in a non-professional but intimate role is dealing with them, is one thing. Seeing the actual behaviors and learning the positive responses to them that will make the patient’s, and the caregiver’s, lives less stressful and more fulfilling is quite another. Teepa’s workshop was loaded with facts and scenarios that made me both laugh and weep. But more importantly, it was loaded with ‘tools’. If the same workshop was offered here tomorrow, I would take it again.
Too many of us who are providing private care (and many professionals, too) don’t know exactly what the disease is, the actual physical processes of its unrelenting progress, and the full part we play (or fail to play) in the patient’s well-being and comfort as they travel that daunting path. Nor do we fully understand how being a caregiver affects us, and our families. There is not enough ‘hands-on’ education given to people looking after loved ones at home.
And so I will begin a path—one of advocating for that most precious of all resources, practical education—to be offered to all persons who find themselves looking after someone with dementia. Because education is not only a privilege, it is a necessity.