It's estimated that more than a third of US adults are affected by it - either because they have it, or others close to them do. Often that leaves an aging spouse as chief caregiver. ideastream health reporter Sarah Jane Tribble asks, how do caregivers cope?
When Kathy Schreiber met Bob, she was young.
They married when she was 31. He was 54. And, for awhile, things were perfect.
Boating vacations in Florida, cozy family holidays, and lots of laughter with friends.
Then, in the late 1990s, he began to forget things.
"There was one time we were pulling in the driveway and he said something that didn't make sense to me, and I thought he was trying to make a joke and it just wasn't coming out right. I said what do you mean and he said whatever it was again. And I'm thinking this doesn't make any sense. And I said, do you know who I am? And he said. No," Schreiber says.
Kathy, who had been a teacher, became Bob's full-time caregiver. He forgot who people were and where he was. Once he drove the lawn mower down the road, lost.
Eventually, he lost the ability to walk. And, more recently, the disease has stolen his voice. Kathy has been taking care of her husband Bob for more than 13 years.
As people live longer, experts believe there will be a tidal wave of spouses taking care of each other in the coming decades.
Dr. Martha Sajatovic, a professor of psychiatry and neurology at Case Western Reserve University Medical School trying to understand how feasible it is to expect a spouse to provide long term care at home. Can they be successful?
"If we think about something as being one day at a time, that's a lot easier to think about, but some of these conditions, they can go on for months and years," Sajatovic says. So you have to able to think about something that is sustainable and reasonable for everyone involved."
That question of sustainability is exactly what Joan Monin is trying to answer. She is an assistant professor at Yale School of Public Health who studies relationships.
While studying couples dealing with dementia, Monin found that even the spouses with the best intentions struggled.
"Some people really do feel burned out," Monin says. "It's a question of whether the stress of the situation makes compassion go away or if the compassion is a protective factor for the stress."
To cope, the caregiving spouse found themselves steeling their emotions to brace for the next bad episode.
But there were some couples who were able to rebound. They seemed to fair better.
"Some people, and in some relationships, people are really able to focus on the other person," Monin says. "And I think that's something unique in some relationships that can help with the caregiving process."
Monin asked the couples - including the person suffering from the early stages of dementia - about their feelings of burden and compassion. Questions included:
- When you see your partner feeling sad, how much do you feel like reaching out.
- Do you often have tender feelings toward your partner when he or she seems in need.
Monin discovered that among those couples who seemed to have a stronger relationship at the outset of the illness, the spouse providing the care reported less burden.
"It's really a feedback loop," Monin says."It's not just two isolated people. They are interacting with each other every day and their emotions have incredible implications for each other.
For Bob and Kathy Schreiber, the journey has been long and difficult. There were times in the early stages of the disease when Bob became angry - a common response from those who feel like they are losing control of their lives. Kathy considered putting him in a nursing home.
But she knew what he had been like before. She knows the real Bob.
"I still draw from his spirit I still draw from his, you know, strength. It's still there most of the time," Schreiber says.