Open Accessibility Menu
Hide

Who Has the Right To Control the Sexuality of a Person with Dementia?

A 78-year-old Iowa man was tried for third-degree sex abuse after nursing home staffers told him his wife’s Alzheimer’s had advanced to the point that she was no longer capable of consenting to sex.

Henry Rayhons, who served nine terms as a Republican state representative, and his wife, Donna Lou, who had both been widowed, were married in 2008. At some point in the last seven years, Donna Lou started exhibiting behavior consistent with Alzheimer’s. In March 2014, she was moved into a nursing home in Garner, Iowa. Reportedly, there was a family conflict between Mr. Rayhons and his wife’s daughters about her condition and care. It culminated in a meeting in which the nursing home staff told Mr. Rayhons that his wife was no longer mentally capable of legally consenting to sex.

Download A Free Guide to Understanding Dementia

On or about May 23, Mr. Rayhons visited his wife in the nursing home and drew the curtain around her bed. Her roommate reported hearing noises that sounded like the couple was having sex. One of Donna’s adult daughters went to court and won temporary guardianship and shortly after Mrs. Rayhon’s death in August, Mr. Rayhons was charged with third-degree sex abuse.

According to Iowa law, third degree sexual abuse had occurred because the two parties were not living together as husband and wife and Mrs. Rayhons was suffering from a mental defect or incapacity which precluded her ability to give consent.

Fortunately, on April 22, 2015, after three days of deliberation, the jury delivered a verdict of not guilty. If he had been convicted, Mr. Rahyons could have been sentenced to as much as 10 years in prison.

According to an article in the Washington Post, Mark Kosieradzki, a Minneapolis-based attorney who has tried several cases of sexual abuse in nursing homes, stated it wasn’t clear on whether the jurors concluded that Mrs. Rayhons was able to consent, despite her Alzheimer’s, or whether they decided that there wasn’t sufficient evidence to prove that Rayhons actually had sex with his wife after being told not to. Kosieradzki told the Associated Press, “The legal question doesn’t change. It should always be a matter of consent of the patient.”

Who Has The Right to Decide When a Person With Dementia Can No Longer Have Sex?

One of the things that I found surprising and disappointing about this entire situation was the lack of conversation about dementia and sexuality and who has the right to determine when people with Alzheimer’s or other forms of dementia can no longer be sexually active.

The fact that Mrs. Rayhons couldn’t remember the names of her own daughters was presented as evidence that she didn’t have the mental capacity to consent to sex with her husband. It makes me wonder if anyone asked if she still had the capacity to enjoy ice cream or music or the warmth of sunshine on her face on a pretty spring day. I believe it’s a huge mistake to assume that a person who has dementia no longer has opinions, feelings, or desires.

It isn’t unusual for a person with Alzheimer’s to forget their loved ones’ names and to have a completely different concept of time, place and reality from their caregivers. However, regardless of how many memories have been stolen and how many skills have been lost, most people do not lose their desire for intimacy, closeness and human touch. We are born as sexual beings and we die as sexual beings — and even diseases as devastating as Alzheimer’s don’t destroy that part of our humanity.

In the Slate article, “An Affair to Remember”, the author, Melinda Henneberger, tells the tragic story of Bob, age 95, and Dorothy, age 82, two residents in a memory care facility who fell in love. When Bob’s adult son walked into his father’s room and saw Bob engaged in a sexual act with Dorothy, he became extremely upset and issued strict orders to the staff to not allow the couple to be alone together.

Bob and Dorothy had each lost a lot of their memories, but they were very aware of their affection for each other. And even though the staff was able to keep them out of one another’s rooms, the couple still managed to find other places where they could be together and pleasure one another sexually.

Eventually, Bob’s son got frustrated and, without discussion or announcement, he showed up one morning and moved his father out of the facility. For weeks after Bob disappeared from her life, Dorothy sat at the window and waited for him. She stopped eating and she lost 21 pounds. She was hospitalized for dehydration and treated for depression. Eventually, Alzheimer’s erased her memories of Bob, but according to her daughter, Dorothy never regained the happy spark she had when she and Bob were together.

Melinda Henneberger, the author of the article asked the question, “Should someone have protected the couple’s right to privacy—their right to have a sex life?” She also proposed the idea of including a sexual power of attorney in our advance directives.

Do You Need a Sexual Power of Attorney?

Most people understand and accept the need to assign a durable power of attorney to handle their finances if they become mentally incapacitated. They also understand the need to appoint a healthcare representative to make sure their wishes about life support and tube feeding are followed, but the idea of assigning a sexual power of attorney is unfamiliar, possibly even radical for most of us.

However, unless we specifically state our wishes regarding our sexual choices and activity in the event of incapacity, we could end up leaving that decision to our children or possibly the nursing home staff person who has the most Victorian attitude toward sex.

How Do You Distinguish Between Sexual Pleasure and Sexual Abuse in People Who Have Dementia?

Elder sexual abuse is generally defined as coercing an older person through force, trickery or threats. It includes sexual contact with elders who are unable to give consent, as well as unwanted sexual contact between care providers and their elder clients.

The nursing home staff said Mrs. Rayhons was not capable of giving consent. I would wonder if she was able to express displeasure. Did she show any signs of abuse, such as genital infections, bruises, or internal injuries? Did she exhibit any signs of fear of anxiety around her husband? Did she seem happy to see him? Were there any signs of unwillingness or any sounds of struggle?

Did the staff and the adult children think they were protecting her from her “predator” husband, or were they grossed out at the idea of two 78-year-old people (one of whom had dementia) having sex?

I don’t know. I wasn’t there. I don’t know the people involved, and the stories I’ve read have not asked or answered any of those questions.

Here’s one thing I do know for sure: If something happened to my husband and I was in my right mind, I would not be interested in another man. However, if I developed dementia and lost all of my memories of my husband and my marriage and I found comfort and companionship in the arms of another man, I would not want my children or a nursing home staff member to decide that my behavior was inappropriate. So, I have written a draft of my sexual power of attorney. I will take it to my attorney soon and get help refining it and adding it to my advance directive. In case you may be considering something similar, I’ve included a first draft of what I plan to take to my attorney to ensure my wishes are carried out in the event I’m unable to express myself at a later time. Please feel free to use this as a template for your own language to use if you decide to draft something similar for your family and legal counsel.

Elaines 1st Draft of Her Sexual Power of Attorney

To: Eric, Robert & Annie,

As my healthcare representatives, I am directing you to not place me in a nursing home that doesnt respect its residentsright to privacy and intimacy. If I develop dementia and lose all of my memories of my marriage and my love for Alex and I get romantically involved with another man, it is my wish that you do not interfere.

As long as I am conscious and aware of the things that bring me pleasure and joy, let me make my own choices about what I eat and drink and with whom I sleep.

Unless you have reason to believe that I am being bullied, forced, manipulated emotionally or physically abused, let me enjoy whatever companionship and pleasure I receive from any intimate relationship.

If the nursing home does not provide locks for residentsdoors, you might want to provide me with a Do Not Disturb sign. If I forget that I need to put the sign on the door, please be sure to knock before you enter.

Whats The Future of Sexuality and Dementia in Nursing Homes?

As I mentioned earlier, I don’t know Mr. Rayhons. I don’t know anything about the relationship he had with his wife or anything about her physical condition beyond the fact that she had dementia. I don’t know if she was still capable of experiencing pleasure on any level. I also don’t know how Mrs. Rayhons’ daughters and the nursing home staff came to the conclusion that she should no longer be having sex with her husband.

However, I do know that sexuality is a part of our humanity, and if nursing homes are committed to person-centered care, they will need to recognize this fact and establish policies and train staff on how to respond properly when older people and residents with dementia display surprising, uninhibited and inappropriate sexual behavior. Professional caregivers need to be able to recognize the difference between intimacy and sexual abuse, and they need to understand how to respond in both situations to protect the rights and the dignity of the people in their care.

For further food for thought on the subject, please read my previous article, A Different Kind of Valentine’s: Sexuality and Dementia and listen to my TEDx Talk on “Having the Sex Talk with Dad.”

What are your thoughts on the subject? Do you believe that care facilities have the right to dictate whether residents – with or without dementia – should be allowed to carry on sexual relationships with their spouses or partners? Where is the line drawn as to what limits are placed on a person with dementia and who will speak for them? Let us know your thoughts in the comments below!

Resource Box

Elaine K. Sanchez is a caregiver speaker, author, and co-founder of CaregiverHelp.com, a video-based caregiver support program. She writes the caregiver blog, “Caregiver Help Word of the Day”. Elaine and her husband, Dr. Alex Sanchez, have also developed a number of online continuing education courses for social workers and other mental health professionals, including Caregiver Help: Sex & Dementia, Caregiver Help: Anger & Guilt and Caregiver Help Depression and Grief.

Categories