(Photo courtesy of Walter Doyle)

Walter Doyle's wife, Erin, had early-onset Alzheimer's disease. This photo was taken in better times.

(Photo courtesy of Walter Doyle)

Walter and his wife, Erin, celebrate their son's graduation.

Alzheimer’s disease affects some 5 million Americans; up to 5 percent have early-onset Alzheimer’s, according to the Alzheimer’s Association. These are people in their 40s and 50s.

Walter Doyle’s wife Erin was 52 when doctors confirmed she had early onset Alzheimer’s disease. 

"We always used to laugh, we make great love, but as this started to evolve, you went from making love to sex to nothing," he said.

Doyle’s experience wasn’t unusual. Sex and intimacy are essential components to a healthy relationship, even later in life. But when it goes away …

"It’s a very lonely feeling. You sit there and look at person you fell in love with that was your confidant, that at end of day, when things are terrible at work, or you have a problem with your kid or a combination of everything, you crawl into their arms and they tell you it’s going to be OK and you believe them," Doyle said.

PART 1: Aging And Intimacy: Love, Friendship And Sex At An Assisted Living Community

Erin was starting to forget her husband, the father of her two children.

"And it got progressively worse," Doyle said. "I mean there were times where at night she’d get out of bed and start screaming at me about being a stranger as we were sleeping."

And as more couples face an early onset diagnosis, sex and intimacy are going to be two very real game changers.

Michele Grigaitis-Reyes is a family nurse practitioner at Banner Alzheimer’s Institute in Phoenix. She’s also an expert in the area of sex and intimacy in dementia patients and its effects on caregivers.

"Frequently their attention gets focused on these other things — the money, the kids and their own intimacy needs get really low priority," Grigaitis-Reyes said. Which has consequences for the caregiver.

"There’s data out there that says a high loss of intimacy is associated with depression, low quality of life and less satisfaction with caregiving," Grigaitis-Reyes said.

And that can lead to abuse, Grigaitis-Reyes said. Because if a caregiver is frustrated, they’re more likely to be hostile or critical of their partner.

Sex is hard to talk about for a lot reasons; toss in dementia and it’s tougher.

"They have sexual activity, the person doesn’t recall, an hour later they’re being approached again," Grigaitis-Reyes said. "Caregivers have a hard time with that."

Even most doctors aren’t talking about sex and intimacy, though Grigaitis-Reyes said that’s starting to change, at least among some geriatricians.

Doyle said neither he, nor his wife, were asked about the state of their sex life. And it was rarely brought up at support groups. But for Doyle, and many others, it’s not just about sex.

"That touch when you’re sitting across the table at dinner, you know, when in your 30s or 40s and everything is OK, that you kind of melt together — it’s gone," Doyle said. "And you find out that you’re living as a single person with an obligation because you married for better or for worse, you’re by yourself, and you’ve got basically the one that you love reverting back to a child before your very eyes."