In 2014, Mr. Henry Rayhons, a nine-term state legislator and farmer, was charged with third-degree felony sexual abuse for allegedly having sex in a nursing home with his wife who had Alzheimer’s Disease (No. 02411 FECR010718). Among factors influencing the case, a doctor had documented that Mrs. Rayhons did not have capacity to consent to sex. Mr. Rayhons was ultimately cleared of charges, but the incident caused him to be separated from his wife for most of the last few weeks of her life. This case sparked public debate about sexual rights of and protections for people living with dementia in a nursing home or other institutional care setting. But most people with dementia live at home, not in a nursing home. Until now, little was known about sexual activity and desires of home-dwelling people living with dementia.
Our new study “Sexuality and Cognitive Status: a U.S. Nationally-Representative Study of Home-Dwelling Older Adults” in the Journal of the American Geriatrics Society offers new answers to questions about sex and dementia. Below, we answer the public’s questions, as posed in recent headlines and online forums, several of which were prompted by the Rayhons case.
Some facts about our study:
- It is the first comprehensive, nationally-representative study of sexuality in relation to cognitive status among home-dwelling older adults in the U.S.
- The study included 1682 women and 1514 men ages 62-91 years
- Sexual activity was defined as “any mutually voluntary activity with another person that involves sexual contact, whether or not intercourse or orgasm occurs.” People who had sex with at least one partner in the last 12 months were considered sexually active.
- Cognitive status was classified as having no cognitive impairment, mild cognitive impairment or dementia using an adaptation of the Montreal Cognitive Assessment questionnaire called MoCA-SA
- People who could not understand the study purpose or give their consent to participate in the study were not included. This means that people classified with dementia in this study likely had early dementia.
- Data collection for this study was supported by a grant for the National Social Life, Health and Aging Project from the U.S. National Institute on Aging. The authors of this study did this work independent of the National Institute on Aging.
August 8, 2016 “Can Having Sex Regularly Reduce the Risk of Dementia for Older Adults?” NJ.com
This question is asked by Hayley Wright and Rebecca Jenks, researchers at Coventry University in the United Kingdom who wanted to know if there was a relationship between sexual activity and cognition in older adults.
It’s not easy to design a study to know whether having sex regularly could protect against dementia for older adults. Imagine trying to randomly assign younger adults to three groups where we instruct them to (1) “have sex regularly,” (2) “have sex less often than regularly,” and (3) “have sex more often than regularly.” First, we have to define what we mean by “regularly.” In an earlier study by our group, we found that partnered older adults engage in partnered sexual activity, on average, two or three times each month. Younger adults have sex more frequently, closer to two or three times a week. So it’s not clear how we would instruct people to have sex regularly. The most common sexual act is vaginal intercourse – the vast majority of adults who say they are sexually active identify vaginal intercourse as their main activity. So does the kind of sex people have determine what is “regular?” Does having oral or anal sex have protective benefits for dementia? For what period of time is “regular” sex required – every month for a year? Every year until age 70? These are some of the challenges with finding an answer to this question.
Another way to look at whether having sex regularly protects against dementia is to follow the same people over multiple time points and assess both their cognitive function and the frequency and types of their sexual activities. The National Social Life, Health and Aging Project, established in 2005, makes these kinds of data publicly available at the National Archives of Computerized Data on Aging.
Only a third of women with dementia had a partner (35%), compared to nearly two thirds of women without dementia (63%) and nearly three quarters of men with dementia (72%).
Our study finds that people with dementia have poorer physical and mental health than others and they are more likely to have depression and limitations in their independent activities like dressing and bathing. All of these factors have been associated with less sexual activity. Only a third of women with dementia had a partner (35%), compared to nearly two thirds of women without dementia (63%) and nearly three quarters of men with dementia (72%). We also find that people with dementia are less likely to be sexually active than others. So we find an association between dementia and sex, but we can’t say whether having “regular “sex can delay or prevent dementia.
April 16, 2015 “Sex and Dementia: Is it Love or Assault?” Medscape
This question is asked by Arthur L. Caplan, PhD, founding head of the Division of Bioethics at NYU Langone Medical Center.
Our study finds that more than half of partnered people living at home with dementia are sexually active. About 88% of all partnered people, men and women, say they are not frightened or threatened by their partner. This finding was similar for people with and without dementia. Together, these two findings suggest that most partnered people living at home with dementia who are sexually active do not feel they are being assaulted.
April 22, 2015 Can People with Dementia Have a Sex Life? New York Times
This question is asked by philosopher John Corvino from Wayne State University in Detroit, Michigan and Ron Belgau, a graduate student studying philosophy at Saint Louis University in St. Louis, Missouri.
Our study definitively establishes that, yes, people with dementia can and do have a sex life. About half of all men and 18% of all women living at home with dementia are sexually active. When we look at the subgroup of partnered men and women with dementia living at home, 59% of men and 51% of women are sexually active. Rates of sexual activity are lower among people with dementia than same-age counterparts.
We also find a high rate of sexual problems: 77% of all people report some sexual function difficulty. But very few people had talked to a doctor about sexual function problems that can come from a medical problem like dementia (17% of men and 1% of women with dementia).
April 22, 2015 Can a Person with Dementia Consent to Sex? NPR
This question is asked by Patricia Bach, PsyD, MS, RN, a nurse and geriatric psychologist. She and a colleague surveyed members of the American Medical Directors Association (AMDA), an association for physicians working in long-term care facilities, about their formal training about later life sexuality.
Our study did not specifically ask participants about whether they consented to sex. But we did ask about obligatory sex. About 12% of women reported having sex primarily out of obligation, and this rate was similar among women of all cognition groups. Interestingly, 17% of men with dementia said they had sex primarily out of obligation as compared to 2% of men with normal cognition and 5% of men with mild cognitive impairment. That being said, choosing to have sex primarily out of obligation – like to please one’s partner or out of a sense of marital duty – does not mean a person was not capable of consent to sex.
July 2012 How Can I Handle a Sex Crazed Husband with Dementia? Aging Care: Caregiver Forum
This question is asked by an informal caregiver, under the username “upallnight,” on an Alzheimer’s and dementia caregiver online forum.
Although it’s obviously not a technical term, our study finds little evidence for “sex crazed” people with mild cognitive impairment or early dementia. Although a minority of people with dementia do become more sexual in their behavior, expressions or needs, the vast majority of people with dementia are not “sex crazed,” hypersexual, or sexually “inappropriate.” Studies that have attempted to estimate the rate of “inappropriate sexual behavior” among people with dementia yield a broad range of estimates, frequently cited as “7-25%.” However, the one study citing a 25% rate of such behavior was published in 1983 and based on perceptions of nurses working at a single 400 bed nursing home facility. In a 2005 chart review study of 2278 people with dementia that included home-dwelling and nursing home patients, the documented rate of “inappropriate sexual behavior” was 1.8% and more common among men than women. In our study, among sexually active people living at home, the frequency and types of sexual activity were similar among all cognition groups. Interestingly, people with dementia were more likely than others to say that they engage in sexual activity without feeling aroused.
Rates of sexual function problems or “sexual dysfunction” were high generally, including lack of interest in sex which, again, was similar among all cognition groups: 60% of women and 34% of men said they lacked interest in sex, but not everyone was bothered by this problem.
We asked people about their preferences for sexual touching, light touching, cuddling and hugging. Many men and women said these activities were appealing, but men and women with dementia were less enthusiastic about these activities than their counterparts.
WomanLab has assembled a list of resources we find helpful on the topic of sex, intimacy and dementia, with a focus on home-dwelling people (we will continue to update this list as we discover new resources):
- Intimacy and Sexuality: Resources for Dementia Caregivers (National Institute on Aging)
The National Institute on Aging shares resources that are backed by evidence. These resources are informative for both family and clinical caregivers and link out to reputable sites that will offer support and information for anyone seeking to learn more.
- Sex and Intimacy. Adapting to changes in the person with dementia (Alzheimer’s Society, United Kingdom)
This site offers a wide range of reliable information about sex and intimacy for a person living with dementia and caregivers.
- Elder Abuse: Definitions (Centers for Disease Control and Prevention)
Provided by the U.S. Centers for Disease Control and Prevention, this document defines elder abuse, including sexual abuse. We suggest this resource for everyone.
Books & Videos:
- Benner Carson V, Vanderhorst K, Koenig HG. Chapter 7: “Sexuality and Intimacy in Those with Dementia.” Care Giving for Alzheimer’s Disease: A Compassionate Guide for Clinicians and Loved Ones. New York: Springer Science + Business Media. 2015. Pages 63-74. Print.
Chapter seven describes changes in sexual behavior that can occur among people with dementia, including increased sexual interest and changes in inhibition. The authors also discuss how a caregiver can assess a person’s ability to consent to sex.
- Ralph and the Gift of Alzheimer’s.
This short film tells a love story of Ralph, a professor and scientist who lives at home with dementia. Ralph is cared for by his wife, a physician.
- Tang SL. When “yes” might mean “no”: Standardizing state criteria to evaluate the capacity to consent to sexual activity for elderly with neurocognitive disorders. The Elder Law Journal. 2015.
Written by family law attorney Stephanie Tang, JD, this paper discusses the legal and ethical issues of sexual activity among older adults with dementia, reviews relevant legal cases, and advocates for the use of standardized tests to evaluate cognitive capacity and ability to consent to sexual activity,
- Boni Saenz AA. Sexual Advance Directives. Alabama Law Review. 2016.
Alexander A. Boni-Saenz, JD, Assistant Professor of Law at Chicago-Kent College. In this article, Mr. Boni-Saenz introduces a new theory of sexual consent and argues for the use of legal sexual advance directives for people with conditions that may diminish their capacity to consent to sexual activity.
- Gaster B, Larson EB, Curtis JR. Advance directives for dementia: Meeting a unique challenge. Journal of the American Medical Association. 2017.
Dr. Gaster, an internist in the Division of General Internal Medicine at University of Washington, and colleagues published this viewpoint article in the Journal of the American Medical Association to describe how and why advance directives for dementia care are could be useful. They detail timing for implementing advance directives, what the advanced directive should include and why a dementia-specific directive is needed.
- De Giorgi R, Series H. Treatment of inappropriate sexual behavior in dementia. Current Treatment Options in Neurology. 2016.
This article by Drs. Giorgi and Series, published In the Journal of Current Treatment Options in Neurology, discusses “inappropriate sexual behavior” in patients with dementia, including: what inappropriate sexual behavior is, its prevalence, the physiological and neurological basis of this behavior, how to assess this behavior clinically and treatment options. These treatment options include non-medical options, such as therapy and diverting attention through different activities, and pharmacologic treatments such as antidepressants, hormones or beta-blockers. They also note that other factors could be the root cause of this behavior, such as pain or boredom.
- Lachs MS, Pillemer KA. Elder abuse. New England Journal of Medicine. 2015.
Dr. Lachs, a geriatrician, and Dr. Pillemer, a sociologist, from Cornell University report on the types and prevalence of elder abuse, potential risk factors for elder abuse and consequences that arise from elder abuse. They also review information about which people and agencies intervene and what happens when elder abuse is reported.
- Lindau ST, Schumm LP, Laumann EO et al. A study of sexuality and health among older adults in the United States. New England Journal of Medicine. 2007.
Dr. Lindau, Director of WomanLab and a practicing gynecologist at the University of Chicago, with colleagues from biostatistics, sociology and medicine, published the first nationally-representative study of sexual activity, behaviors and problems among U.S. adults ages 57 and older.
Edited by Megan DePumpo