Whether Mom still wants sex probably isn't top-of-mind when most people are picking a nursing home for their loved one.
But experts from the Widener University-based Sexuality and Aging Consortium say a ground-breaking Iowa court case illustrates why both consumers and long-term care facilities should do more thinking about sex - before they get into trouble.
In the case, Henry Rayhons, a 78-year-old former member of the Iowa House of Representatives, is charged with sexual abuse for having sex with his wife of seven years in her nursing home. She had been diagnosed with Alzheimer's disease. A doctor at the Garner, Iowa, facility where Donna Rayhons lived, along with her two daughters from a previous marriage, had concluded that she was too impaired to consent to sex.
The case, which is now at trial, raises complex questions about what constitutes consent for a person with dementia and how nursing homes should prepare for the inevitable: People of all ages want and need sexual contact.
"Our need for touch is universal, from birth to death," said Robin Goldberg-Glen, a social work professor at Widener who is co-president of the consortium.
The group, which includes about 40 experts on sexuality and aging from around the country, educates professionals and students in an attempt to reduce discrimination and advocate "for the rights of people in long-term care to have their sexuality respected and their choices respected," said co-president Melanie Davis, a sexuality educator in Summerville, N.J.
The consortium is not taking a position on the Rayhons case. It - and the family dynamic behind it - is complicated. Media reports say Rayhons was told his wife was not capable of consenting to sex. It's unclear what kind of contact occurred between them while a curtain was pulled between her side of the room and her roommate's last May. Semen that matched his genetic profile was found on her quilt and sheet. The roommate complained about the noises she heard, but did not describe sounds of a struggle.
Davis and Goldberg-Glen think a clear policy, plus better communication might have headed off the legal confrontation.
"There are much more humane ways and caring ways to deal with a case rather than taking legal action," Goldberg-Glen said.
Preferably, families should know before they place a loved one in a facility where it stands on sexual activity, but Goldberg-Glen said such policies are "very, very rare."
"People have sort of closed their minds to the fact that this is important," said Beryl Goldman, director of Kendal Corp.'s Outreach program and a member of the consortium's advisory board. Her job includes teaching others who work with the elderly about sexuality.
At least one of Kendal's communities, Kendal at Longwood in Kennett Square, has a sexuality policy. The founder of the Widener consortium, Peggy Brick, now lives there.
"The bottom line is people have the right to express their intimacy and sexuality," Goldman said. However, sexual contact, which can be anything from holding hands to intercourse, must be consensual. Ideally, an interdisciplinary team that knows residents well figures out who can consenting.
Consortium members said they're still fighting ageism and a society that has trouble accepting the idea that 80-year-olds like sex.
"We know that many people feel very comforted by having an intimate relationship with someone. A lot of times, we're not comfortable," Goldman said.
"One of the biggest challenges is getting staff to understand that this is a normal part of life."
Figuring out what consent means for someone with dementia is tricky. Responding positively to touch is quite different than deciding whether you want to buy a new car or would rather have chicken than fish for lunch.
Gayle Doll, director of Kansas State University's Center on Aging and an advisor to the consortium, said nursing home leaders often try to guess what a residents would have wanted before they got sick.
The current thinking, she said, is that "we become new persons" when we get dementia, and decisions should be based on how we are now. She advocates for assigning the same staff members consistently to residents so that the staff understands unspoken cues.
"People with dementia, we make every decision for them," she said. "We've got to start hearing their voices."
The challenges can be even more complex for people in the LGBTQ community, consortium members said. Davis said one advocate wanted more understanding of the kink community (think bondage) in nursing homes. She thought it was a little too soon for that.
"We're just trying to get people to recognize that people have a right to be sexual, period," she said.