As a movement instructor for Together Senior Health Moving Together classes and PLIÉ-VA Research Study, I have had the honor and opportunity to get to know people with a dementia diagnosis and their care partners. I have respect for each of them and have enjoyed getting to know them, regardless of any specific diagnosis.
The nature of a diagnosis is that it can be and feel conclusive. Certainly, diagnoses warrant import, so that steps may be taken in a healthy direction. Sometimes diagnoses require a second opinion. Unfortunately, negative social stigma often accompanies a diagnosis of Alzheimer’s disease and other forms of dementia. This can make the experience even more terrifying, for the person receiving this diagnosis, and for the person’s loved ones.
Once you get to know someone, regardless of their circumstances, it becomes easier to relate with them. Recently, I had the opportunity to ask some of our Moving Together participants about their experiences of being diagnosed. The below quotes are taken from this discussion.
The initial response to the diagnosis can be shocking.
“That cannot be right. I wanted a second opinion.”
-Care partner of person diagnosed with dementia
Some people become depressed upon diagnosis.
“I had noticed memory deficits with my partner and also with myself. When we got the diagnosis, I really loved hearing the word mild. That’s what I focused on. And it’s pretty much stayed that way, so I’m very grateful for that. His family has a history of Alzheimer’s Disease, so I had witnessed the progression of the disease in them.”-Care partner of person with diagnosis
Each person with any diagnosis is a whole person, with a variety of experiences, likes, dislikes, passions, pet peeves, etc. A diagnosis can feel like a label, with people making assumptions based on that label and not the whole person. Since Alzheimer’s is such a scary label and is associated with stereotypes of memory loss, it can be hard for people to see beyond it.
“Initially my husband never wanted to admit his diagnosis, maybe he was embarrassed. Not sure that’s the right word. He had to do something he had never done, he had to consider all his feelings."
Once you get over the shock of it, you just get on with your lives. I feel that the more my partner and I have learned about dementia, we both have become better people. With the help of Moving Together and the other groups we are actively involved in, we’re fine. We are having more fun than our friends. When our friends see my partner they say, ‘He’s so normal,’ with surprise.”
-Care Partner of person with Alzheimer’s diagnosis
The social stigma associated with dementia diagnoses can often lead to social exclusion, discrimination and disempowerment. But a diagnosis is not the person. The person remains intact, but with complex circumstances that are worthy of understanding.
“My partner is 3rd generation with Alzheimer’s, he lost his younger brother and father to the disease. My mother was diagnosed and went quickly. Since my partner’s diagnosis, he’s remained mild. Though he has stopped driving, and cooking, overall, he’s very pleasant. After finding the PLIÉ program about 5 years ago, we are so grateful to the program and the extensions that have come with it, like meeting our classmates, who are now our friends. We are very grateful.”
-Care Partner
It can be a lifeline to find support that is available for people with a dementia diagnosis and their care partners, especially among others who understand that the symptoms may show up differently for people and may even vary day to day within the same individual.
“One thing I would say to folks newly diagnosed and on this path is to find and engage in a program where you can meet others in the same situation. It was incredibly helpful for me to meet other care partners dealing with this. Not only did I meet these wonderful people in our Moving Together classes, but I met people that are going through things that I was just starting to encounter.”
-Care Partner
Getting diagnosed with any form of dementia can be scary, but it helps to know that a diagnosis does not define a person. People are human and deserving of respect and understanding. People want to be acknowledged for who they are: multi-dimensional living beings.
A person with dementia is exactly that - a complex human with emotions and skills and quirks and desires, facing the world with symptoms relating to memory loss. They cannot be defined simply by the name of their condition.
That is what we do in our Moving Together classes at Together Senior Health. We engage with people while having fun. And I get to do what I love: teach functional, mindful movement with good music, and respectfully relate with others in a creative and spontaneous way.
Allison Porter Klinger, GCFP
Instructor, Together Senior Health
Allison has over thirty years of experience in dance, movement education and the healing arts. With a keen interest in kinesthetic learning, she completed the SemioPhysics Feldenkrais® Training in 2000, and has been practicing Feldenkrais Method® in Sonoma County ever since. Most recently, Allison worked with Dr. Barnes and her research team to test PLIÉ at adult day centers in the San Francisco Bay Area.