One in three senior citizens dies with a dementia-causing disease - most commonly, Alzheimer’s. A diagnosis with one of these diseases can be dreadful, as there are currently no effective treatments. In this installment of our series “Diagnosed,” we talked with one Utah couple adjusting to a disease with no effective long-term treatment and no cure.
Janice’s mother was diagnosed with Alzheimer’s disease in her early 70’s. Janice described the experience:
“She went downhill really fast. I think it started before she got diagnosed because she was caretaking for my grandmother that was ill. And so, understanding it now, I wish I’d had that knowledge before I, you know, had gone through helping her.”
These days, Janice understands the disease from the inside out. Her doctor diagnosed her with Alzheimer’s less than a year ago, when she was 64. She and her husband John spoke with me in Logan after a session of Dementia Dialogues, a training course for early-stage patients with dementia and their caregivers. Janice says there’s a lot she didn’t understand about her mother’s condition.
“I wasn’t uncompassionate because we did a lot of outings and a lot of giggling, but just, if I had that knowledge I would have been able to be there for her more emotionally. I just didn’t understand.”
Now, John is taking on the caregiving role Janice played for her mother. He’s a retired nurse and feels prepared for his new role.
“It’s just natural to me because I’ve done it most of my life," he said.
There’s a difference, though, between working with patients and tending to his own wife’s daily care. Also, John has his own health problems. He moves a bit more slowly than his wife and walks with a crutch. In 20 years of marriage, Janice and John have dealt with a lot. Janice described their life together:
"We have 13 kids together, so I’m so used to doing that and caregiving, and so to acknowledge that I need help, I’m doing a lot better at, and so now it’s a lot of laughing it off.”
As Janice and John navigate their lives with Alzheimer’s, researchers try to determine how the disease progresses in the brain. Dr. Jason Shepherd is a professor of neurobiology and anatomy at the University of Utah.
“One of the main challenges for all of these diseases is that the progression is so long that by the time someone has symptoms that they come into the hospital or get checked out by the doctor it’s almost too late because those cells are already starting to die," Shepherd. "The older you get, the more likely you are to get one of these diseases.”
Dr. Shepherd is trying to find ways to diagnose people early before they start to show symptoms.
“So what we want to do is be able to give a therapy way before cells are dying, because once they are on the road to dying, it’s almost irreversible,” he said.
It can take up to 20 years for researchers like Dr. Shepherd to complete human clinical trials and gain federal approval for new treatments. In the meantime, Alzheimer’s patients and their caregivers have to cope with harsh, irreversible losses of memory and motor skills.
Janice is keeping a positive outlook.
“I started my meds, there was two different kinds of Alzheimer’s medicine. I have noticed a difference and so has my doctor.”
Janice and John know that their lives are going to change as Janice’s disease progresses. Psychologist Dr. Elizabeth Fauth at Utah State University studies how people like Janice and John can weather those changes.
“What a lot of people in this, who study this and work with people who have the disease say, ‘Okay, it is what it is. And so, let’s give people a good quality of life. Let’s have them engaged in activities that they find enjoyable. Let’s invite them to things,’” Fauth said.
She acknowledges, however, that dementia can get in the way of the lives people had planned. John and Janice live in an isolated housing tract of a small town. She still drives. He doesn’t. Without Alzheimer’s in the picture, that would’ve worked out fine. Now, Janice worries about the way other people - starting with her kids - may treat her.
“Are they going to feel okay that I drive the grandbabies down to the store still and are they going to be concerned about this? It’s hard to know what to share with them without the curtailing what I am still capable of doing,” Janice said.
She knows that in social settings, the changes she and others with dementia face may also scare people don’t know about their disease.
"Yeah, it’s hard to know when to, when you’re out in public, to make people aware," Janice said. "That is a dilemma right there. You don’t know so don’t judge so quick that they might be drunk, or they might just be a terrible person.”
John worries about this too:
“Yeah. And, you should let everybody in the neighborhood know what is going on. Not like the old-school, you can’t mention that in public, you have to hide them away. It has to come to the foreground.”
Dr. Fauth says caregivers also have to face limits on what they can do because a disease that gets worse over five or 10 years can wear out even the most devoted relatives.
“I think one of the difficulties for caregivers of people with dementia is that they almost always feel like they’re doing it alone. So, caregiving has been called “the unexpected role”.
More than 16 million Americans act as caregivers without any pay. Dr. Fauth says this adds up to huge savings for the healthcare system.
“Families work for free, and so there are these national estimates that family caregivers save $480 billion a year in what would be healthcare costs and that number goes up every year.”
Dr. Fauth stresses that patients with dementia are still themselves, though they may sometimes be difficult to see.
“You can still find a lot of positive interactions with people with dementia, even though it’s a little sad when you take a step back and you think, oh this person had so much to contribute to their community and they are not able to do that anymore. That’s true, but they can still have moments of laughter, they can dance, they can give a hug. They can be present, and I think that those are important to acknowledge.”
As for Janice and John, they’re going to take life one step at a time learning and living together. Janice is looking forward to the future.
“It’s just, like, an adventure. A roller coaster ride, not knowing which way the roller coaster is going to go next. But, education is power, the knowledge is so helpful. It doesn’t scare me. The diagnosis is a relief. It’s like Ah ha! At least. Now I get a brain scan to show more and understand more. So yeah."
Support for Diagnosed has been provided in part by our members and Intermountain Budge Clinic, a multi-specialty clinic offering care for every member of your family in one location. Details found here.