Informed Consent: Should People With Dementia Have Sex?

Addressing the Ethical Dilemma of Informed Consent for Intimacy in Dementia

Sexual Activity in Couples with Dementia
 Alistair Berg/ Getty Images

When it comes to dementia, there are several ethical dilemmas that may develop as a result of changing cognition. One of those is a question that may make adult family members uncomfortable because it addresses sexual activity and intimacy, but it's a topic that often becomes necessary to address. The question is this: Can people with dementia still consent to sexual activity? And, if so, when do they become unable to do so?

The Challenge of Determining Consent

Can someone with dementia understand the decision they're making and the potential consequences? Clearly, the answer is not an easy yes or no.

The goal in asking, and attempting to answer, the question of ability to consent is two-fold:

1. Prevent the sexual abuse of a vulnerable person who may be unable to fight it or report it

Due to the memory problems and communication difficulties that can develop in dementia, it is imperative to guard against the potential victimization of someone who is involved in sexual activity against their will.

Older adults, and especially those who have cognitive problems, are an easy target for abuse of all kinds, including sexual.

Legally, a person must have the mental capacity to consent to a sexual act. The question of how to determine if that capacity exists is a difficult one to answer. Is there a certain stage of dementia where this becomes illegal and immoral?

2. Protect the rights of a vulnerable person to engage in mutual, consensual sexual activity that is desired and promotes quality of life

Dementia care has come a long way in acknowledging that simply because Alzheimer's disease (or a different type of dementia) is present, the desire for intimacy is not automatically removed. Nor does a person automatically or immediately lose the capacity to consent to sexual activity upon diagnosis.

Instead, research has identified the many benefits of touch for people with dementia, and dementia professionals have emphasized the importance of person-centered care in dementia. Some nursing homes and assisted living facilities have written policies on recognizing the physical, emotional, mental, spiritual, and sexual needs of those in their care.

What Factors Should Be Considered in the Question of Consent?

If two people—one or both of whom have dementia—indicate interest in pursuing a sexual relationship with each other, what questions should be asked? While there's not a comprehensive list that has been agreed upon by experts, here are some factors that may help in this decision:

  • Recognition: Does each person consistently recognize each other? Do they know the name or room location of each other? Does one person mistakenly think the partner is her spouse when he's not?
  • Interest: Do they both seek each other out consistently? Is there an interest in simple companionship and friendship, or an interest in sexual intimacy?
  • Verbal and non-verbal communication of emotion: What do their verbal and non-verbal communications say? When asked, does each person express a desire to spend time with each other? When you observe them interact, are both engaged with each other and appear happy? Can they answer questions about their relationship and indicate a desire for physical intimacy?
  • Ability to say "No": Does either person display any signs of distress, such as emotional withdrawal, fear, tearfulness, decrease in appetite, or physical recoiling from touch? Are both people able to say "No" (verbally or non-verbally) to unwanted sexual contact? Can each person indicate "how far" they wish to proceed with sexual interaction? For example, is one person content with kissing and touching, and the other attempting to progress to more intimate activities?
  • Vulnerability: To what extent are those involved susceptible to exploitation? Does each person have the ability to report unwanted physical contact to someone? Is the person generally well-supported by family or are they quite isolated?
  • Effect on quality of life: Does the relationship appear to improve the quality of life for both people? Is it an established relationship of mutual commitment or a newer friendship?

Complicating Factors

Below are some additional factors that must also be considered:

Inability to Participate in Medical Decisions

What if one or both individuals have already been determined to be unable to participate in medical decisions, thus activating the power of attorney? Does that automatically make them unable to consent to sexual activity?

Cognitively, a person might be unable to completely understand the complexities of a medical decision but yet clearly and consistently be able to indicate that they wish to be in a relationship with each other. Legally, capacity to consent is assumed unless proven otherwise.

Family, Guardian, and Healthcare Power of Attorney

What if family members, a court-appointed guardian or a healthcare power of attorney are against the relationship?

It's not uncommon for family members to have significant and understandable concerns about their loved one's physical safety and ability, the potential for exploitation, embarrassment that their parent is interested in a sexual relationship, faith-based concerns about their parent's behavior, and a desire to protect the dignity of their loved one.

Some policy writers and researchers advocate for the complete protection of the right to a relationship in dementia and thus feel it's a privacy breech to inform families.

Others stress that if the person lives in a care facility, the facility is responsible for the protection of the individuals potentially involved in the relationship. Thus, the responsible parties should be informed of the situation in order to maintain open communication about its development, especially if it's a newer relationship. This communication may be thought of as both necessary and also a protection against legal action if the responsible party is not in agreement.

The Hebrew Home at Riverdale policy (a facility that has led the way in discussing this issue) suggests educating family members about the needs of the resident and advocating for the resident to maintain quality of life, potentially through a sexual relationship, in addition to other avenues.

For facilities, the risk in this situation is that family members who are concerned may file a lawsuit or a complaint with the department in the state that oversees compliance in nursing homes if they disagree with how the facility handles the relationship. Rather than seeing the relationship as a choice that improves quality of life, they may feel the facility failed to protect a vulnerable resident and should have limited the interaction or prevented a relationship from occurring.

New vs. Established Relationship

Is it an established relationship that both people willingly entered into prior to the onset of dementia and now remain, or is it a new relationship? Often, the establishment of the relationship prior to the presence of dementia makes the decision a little easier—not because abuse can't occur within a marriage (or established relationship)—but because the decision to be in a sexual relationship was made while the person's cognitive ability was not in doubt.

When new relationships are developed after dementia is present, the question of, "Would they be doing this if they didn't have dementia?" is often asked. Or, "She wouldn't have pursued an intimate relationship before her memory loss. She'd be so embarrassed."

If it's a new relationship, should the person's past decisions and preferences be taken into account? While some experts suggest that a person's past preferences and beliefs should impact today's decisions, others advocate for evaluating the person in light of identifying what their current choices,  preferences and needs are, and what contributes to their present well-being.

Interpretation of Regulatory Compliance by State or Federal Surveyors

One of the difficulties in responding to these relationships if they take place in a nursing home is that of how the surveyors (those who are in charge of monitoring compliance with healthcare regulations) will interpret the situation.

Due to the subjective nature of the survey process, two different surveyors can reach two very different conclusions about the same situation, each thinking she is doing the right thing in protecting the residents and honoring their rights to choose.

One surveyor may conclude that the facility failed to protect the resident from sexual exploitation based on the lack of proof that the resident can consent, thus concluding the resident was sexually abused. Another surveyor may conclude that the facility failed to protect the resident's right to choose and to enjoy quality of life through maintaining a meaningful, intimate relationship if a relationship had been pursued but not allowed. Facilities are often placed in a guessing game of how the surveyors might interpret a situation.

Some suggest that the right to engage in a sexual relationship should be maintained unless evidence is present to suggest it is non-consensual. Others maintain that those involved need to prove that they are specifically consenting to the relationship, given that the law requires consent.

A Legal Case Involving Consent for Sexual Activity and Dementia

In 2015, a couple made news due to this very question of capacity to consent to sexual activity. The couple—Henry and Donna Rayhons—lived in Iowa and were married in 2007 after meeting later in life. Several years later, Donna developed Alzheimer's disease.

Fast forward to May 2014, when Henry Rayhons, age 78, was accused of sexually abusing his wife in the nursing home where she resided due to her dementia.

Rayhons contended that he did not have intercourse with his wife on that particular night but stated that they had kissed and touched each other. He also reported that she initiated sexual interaction from time to time. The nursing home where his wife resided, however, felt that she could not consent to sexual activity and reported the issue to the police after hearing that sexual activity had occurred between the two.

Eventually, the case went to court and, after testimonies and deliberation, the jury found Rayhons not guilty. However, the case stirred up many questions regarding sexual activity among people living with dementia, including the issue of how to determine capacity to consent and who should make that determination.

Should Sexual Advance Directives Be Utilized?

In the Alabama Law Review, Alexander A. Boni-Saenz discusses the idea of allowing people to draw up a document that outlines their choices for sexual activity in the event that they become mentally incapacitated. For example, someone could state that they want to continue to engage in sexual activity with their spouse upon their mental incapacity. The central thought of those who support this idea involves preserving the right to engage in mutually beneficial sexual activities, usually within a committed relationship, and preventing the possibility of criminal prosecution due to mental incapacity.

Those against this idea point out that while someone may want his right preserved while his mental ability is intact, he may react differently when his cognition has declined. Alzheimer's disease and other dementias may change personalities and increase anxiety or agitation. Legally, the question may be referred to as the preferences and choices of the present self versus the future self. Predicting what will be beneficial and desired in order to maintain quality of life in the future becomes difficult when diseases that cause dementia may change preferences, physical ability and interest.

A Word From Verywell

This dilemma highlights the need for nursing homes and other care facilities to write well-researched, articulate and resident-driven policies about relationships between persons where one, or both, have dementia. These policies can then guide facilities in their decisions and provide insight for surveyors to understand the rationale for decisions as they review these situations.

It's also to remember that handling this ethical dilemma well requires more than just policies. Having an open-door approach for communication with family members is critical in addressing a resident's changing needs and the challenging questions that develop, such as consent for intimate relationships.

Finally, facilities need to know their residents—including their cognitive functioning and what activities specifically enhance their quality of life—so that when these situations arise, each decision is intentionally focused on the individual and is clearly based on his or her best interest.

This article should not be misconstrued as consisting of legal advice. See an attorney who specializes in this area for legal advice.

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