Psychologists open up about LTC sex and dementia
Eleanor Feldman Barbera, Ph.D.
A recent Iowa court case acquitted Henry Rayhons of sexually abusing his wife, who had Alzheimer's dementia and lived in a nursing home. The case not only prompted national debate, it led those in long-term care to consider how to handle sexual activity within the bounds of their facility, particularly in cases when one or both of the parties have a diagnosis of dementia.
Psychologists are frequently asked to determine whether or not a patient has the capacity to understand or authorize various aspects of care, including their ability to consent to sexual behavior.
Eric Redlener, PhD, president of The PsychAssociates Group, a company that provides psychological services to long-term care facilities, held a meeting for its supervisors to discuss the challenges that arise when considering capacity, sexual activity and the senior living environment.
I was on the conference call since I work for them regularly. Here is a fly-on-the-wall account of the concerns raised during the meeting.
Some of the challenges to handling sexual behavior in the long-term care environment involve the reactions of staff members to the situation.
· Some staff members show squeamishness about “Grandma and Grandpa” having sex.
· Staff members may be concerned, rightly or wrongly, that residents will be taken advantage of.
· Staff members project their notion of sex onto elders. Elders may be content with holding hands or heavy petting, but staff might be anticipating people “swinging from the rafters.”
· Sometimes an administrator or director of nursing bans sexual activity among the residents, considering it “bad behavior,” despite the fact that it's a legal right in many states for residents to be able to engage in sexual relations within a long-term care facility.
The reaction of family members to the romantic/sexual involvement of their elders can vary greatly.
· Some family members are able to accept their loved one's need for intimacy, despite its sometimes unexpected expression, such as when an elderly heterosexual mother spends time cuddling with another woman on the floor, or a husband with dementia becomes involved with a woman who is not his wife.
· In other situations, family members can become quite distressed by their loved one's behavior. For example, a daughter insisted on having her mother separated from her male companion, who was fifteen years her junior, because she felt it was an inappropriate relationship. Both of the elders had moderate dementia and the age difference was irrelevant to them.
While there was some debate among the psychologists over whether sexual activity was an activity of daily living (some suggested it was more realistic to consider it a weekly or monthly occurrence), certain practical problems were apparent.
· Rehabilitation may be needed for residents in how to safely engage in sexual activity due to physical limitations.
· Facilities might find it necessary to provide condoms and, for residents not familiar with their use, training in how to use them.
· Another consideration was whether or not staff members were willing or required to assist residents in their efforts to engage in sexual intimacy, such as helping residents into bed together.
While residents are legally permitted sexual interactions in many states, facilities also have a legal obligation to protect people who are unable to consent to sexual activity.
· Capacity evaluations are required to determine if residents are capable of making such decisions.
· Attention to the reactions of the participants can also help determine the appropriateness of the relationship. In one situation, a nursing aide picked up that there was a problem with the sexual involvement of a male and female resident. The man knew it was the woman across the hall and enjoyed their interactions. Because of her dementia, however, the woman thought the man was her husband and that she had to have sex with him even though she didn't want to. In this case the two residents had to be separated.
· Additional complications occur when one or both of the residents involved have a sexually transmitted disease such as HIV. On the one hand, HIPAA laws demand privacy of medical information and on the other hand, facilities are required to protect their residents from potential harm. The psychologists recommended counseling the resident with the illness to encourage openly sharing the information with their partner.
· Documentation of “safe sex” counseling was advised.
Based on the discussion, here are some further suggestions for facilities:
· Establish and train staff on the facility policy on sexual expression. The Hebrew Home at Riverdale (now RiverSpring Health) was one of the first LTC facilities to create such a policy. Click here to see it.
· When there are two residents exclusively seeking out each other, discuss the situation with the family and assess their comfort level with the relationship.
· Family members require sensitively presented information and counseling regarding dementia, the need for intimacy, and the safety precautions established by the facility.
· Consider situations on a case-by-case basis over time. For instance, a demented husband and wife may be engaging in a legally sanctioned sexual relationship, but it's possible that it could become distressing for one of them and no longer appropriate.
· Seek legal advice regarding state laws on HIV reporting, the legality of sexual relationships among those with dementia in LTC and any other questions.
Sexuality among elders with dementia can be a complicated situation. It's best handled with a facility policy created with clinical and legal advice, staff training, a team approach that includes family members, documentation, and respect for the rights of the individuals involved.
Eleanor Feldman Barbera, PhD, author of The Savvy Resident's Guide, is a 2014 Award of Excellence winner in the Blog Content category of the APEX Awards for Publication Excellence program. She also is the Gold Medalist in the Blog-How To/Tips/Service category of the 2014 American Society of Business Publication Editors Midwest Regional competition. A speaker and consultant with nearly 20 years of experience as a psychologist in long-term care, she maintains her own award-winning website at MyBetterNursingHome.com.