Can an Alzheimer’s Patient Have Sexual Intercourse?[1]
This was the question fired at me from my two teenaged boys. My background is in philosophy, so I was able to talk a bit about issues of autonomy and consent (on which, see further on). But the total answer is, perhaps predictably, complex. Dr. Bruce Miller describes a study done “[a]round 1995” when nurses affiliated with the University of California – San Francisco “did a survey on [Dr. Miller’s] Alzheimer and frontotemporal dementia patients regarding sexual activity. The majority [of surveyed patients] had decreased sexual activity[;] some maintained activities similar to before [contracting] the disease[;] and …around 8% [actually] had increased activity.”[2] So, can we say anything, in general?
“[A] quick, general answer” comes to us by way of Dr. Victor Henderson, director of Stanford University’s Alzheimer’s Disease Research Center. He writes that “[i]n mild and moderate stages of their illnesses, many – and perhaps most – men with Alzheimer’s disease, and virtually all women with Alzheimer’s disease [AD], would be able to engage in sexual intercourse.”[3]
Dr. Gregory Jicha, “Dr. J,” of the University of Kentucky Alzheimer’s Disease Center, adds: “Sexuality and intimacy remain an important part of one’s life as they age. It is no different in AD.”
However, a lot turns on just how one understands the word “able” – in Dr. Henderson’s statement that Alzheimer’s sufferers are “able to engage in” sex. Let’s dig a bit deeper.
Physical Issues
Dr. Allan Levey puts it succinctly when he says, “There are no physiological reasons …why a person with Alzheimer’s disease would be unable to have sexual activity, except until late stages of the disease.”[4] Dr. J concurs, stating: “There are no physical impediments to engage in sexual activity that develop in Alzheimer’s disease until the very end stage when even walking is affected.”
“Alzheimer’s,” Dr. Caleb Finch remarks, “differs widely between individuals and …the parts of the brain usually damaged do not involve physical function in early stages.”[5]
However, Dr. Swerdlow reminds “…that people with Alzheimer’s are often older, may be frail, and frequently have other comorbid medical issues.” The Mayo Clinic’s Lunde expands on this by saying: “most individuals living with the disease are older adults and so age-related issues such as menopause, decreased sperm count, arthritis, hormonal changes, Erectile Dysfunction, illness, medications and depression are often factors related to sexual arousal and/or function.”
To put it slightly differently, even if Alzheimer’s itself does not destroy sexual functionality, said functionality may be diminished by other physical ailments or conditions that attend the aging process.[6] Dr. Mary Sano adds that the “stage of disease may relate to ability to be aroused or want to be aroused as well as to be sexually functional.” (More on this angle, below.)
On the other hand, Dr. James “Jim” Brewer relates that he is “aware of several AD patients whose physical state is outstanding[,] and there would be no physical impediments to [their engaging in] sexual activity.”[7]
A final consideration comes by way of Dr. Eric Reiman who notes that “effects of medications” might also affect sexuality – whether physically, emotionally or otherwise.
As Dr. Hank Paulson helpfully summarizes: “Sexual function is a complicated matter, of course, and many things beyond physiology contribute.”
Emotional Issues
Angela Lunde helpfully frames this part of the discussion, writing that “…the issues have more to do with changes in sexual feelings, desire, and behavior…” than with anything physical, per se. We might say that this constellation of concerns is broadly “emotional.”
Most relevantly, Dr. Marek-Marsel Mesulam notes that, “[g]enerally, Alzheimer’s decreases libido.”[8] Lunde hastens to say, though, that some Alzheimer’s-afflicted individuals actually suffer from an opposite problem, specifically “hyper-sexuality.” We may say, therefore, even if everything is physically operational (so to speak), without sexual desire the arousal mechanisms may be impaired.
“[M]any patients do lose interest in sex – but [it’s not] that the disease [by itself] imposes peripheral physiological challenges to sexual intercourse.” So reports the aforementioned Dr. Miller.
Dr. J, professor of neurology and part of the University of Kentuck-based Sanders-Brown Center on Aging, and his colleagues “studied changes in sexuality and intimacy in normal aging as well as in those with AD and their spouses. …What we …[found] was a general feeling of emotional estrangement in spousal caregivers, with their needs for intimacy and sexuality not being met. The person with AD was almost universally oblivious to this and felt that their needs were met and that the relationship was intact.” Dr. Reiman makes the point that “much of …[this] will depend on the couple.”
Again, Dr. J: “While our study did not further explain the ‘WHY?’ for this [phenomenon], we can postulate that it may be socially or culturally mediated, i.e. a feeling that it is not ‘right’ to engage in intimacy or sexual conduct with an impaired person[.] It could also be due to a reduction in emotional depth that could occur as part of the loss of cognitive processes in AD[.]”[9]
Along similar lines, Dr. Finch (quoted earlier) again remarks that “[s]ocial sensitivity …may be impaired in early stages.” It may therefore be that the Alzheimer’s afflicted individual no longer recognizes sexual “cues” from his or her partner.
Again, I turn to Dr. Sano. “When we talk about capacity, we falsely think it is the same as cognition and it is not. …[W]hile a person may not be able to ‘rationally report what they want’ they may still want a sexual life.” Unfortunately, we cannot peer into the afflicted person’s thoughts. “Additionally, as a person becomes more impaired, they may not be able to understand what another person wants.”
Ethical Issues
Of course, Alzheimer’s Disease undermines cognitive function. But, along with diminishing cognition comes diminishing capacity to consent. As Dr. Mary Sano relates: “Many things depend on the stage of dementia (with our assumption that milder patients have greater cognition and greater capacity to make decisions for themselves).”
In terms of ethics, specifically, there are several considerations that loom large when it comes to any discussion about sexual intercourse. One relevant notion (of many that could be mentioned) is that of autonomy, and another is informed, mutual consent. The two issues converge – and come apart – in interesting ways.
Autonomy is a Greek-derived word meaning, roughly, “self-law.” The idea is that an “autonomous person” is one who chooses (e.g., courses of action, values, etc.) for oneself. A mental competent[10] person (who has attained the age of majority and not forfeited his or her freedom, through imprisonment, military service, or whatever) has the right to determine his or her own courses of action – within the limits of the law. Other free agents have duties or obligations[11] to honor the choices of competent persons.
Similarly, “consent” has to do with agreement or compliance. In order for agreement to be fully “consensual,” the relevant agreement has to be “informed.” So, roughly, “informed consent” happens when a competent person has adequate information to make a responsible decision.
Requiring informed, mutual consent before engaging in sexual activities with another person is one way that person’s autonomy is properly respected. So, for example, a prospective, sexual partner much be made aware of my intentions as well as crucially relevant background information that might affect his or her decision (for instance, my sexual-health status). The other person needs then to be given the space to decide, free from bullying, coercion, or threats of any kind.
The obvious difficulty comes by virtue of the fact that, at certain stages of the disease at any rate, an Alzheimer’s sufferer is not mentally competent.[12]
Alzheimer’s and related dementias are by no means the conditions or situations that present challenges to informed consent. To get a flavor for this, think about a case in which a set of people with normal cognitive functioning volunteer for medical or scientific studies. Suppose that we’re talking about studying the effects of a migraine pharmaceutical. The researchers might disclose certain statistics relating to possible benefits (eliminating the migraine in 15 minutes, for instance). But they will also have to apprise potential participants of the pertinent risks (maybe stroke).
However, persons with “normal” brain functions will not necessarily be able to interpret benefit and risk statistics. It is well known that scientific-study participants sometimes do not (seem to) understand some of the relevant background information. For example, a person may believe that he or she will be receiving an actual dose of some drug, without giving appropriate weight to the possibility that it will be a placebo instead. Or a person might hear various probabilities for some adverse medical event (like the aforementioned possibility of stroke), without appreciating the actual risk that he or she faces.
Of course, Alzheimer’s sufferers are in an even worse position.
Think back to Dr. J’s comments regarding marital sexuality. A husband and wife share sexual experiences and strive for intimacy. Alzheimer’s patients may desire continued intimacy but be unable to express their desires. Alternatively, certain patients may lack the desire. But, from the point of view of the spouse/potential sexual partner, without the expression, it’s dicey business to just dive right in, so to say.
For we already rehearsed the idea that informed consent is the bedrock of respect for personal autonomy. The trick, therefore, is to understand what the Alzheimer’s-afflicted person’s wishes are, and to try to honor them. But this is obviously more easily said than done, since Alzheimer’s is – eventually – partially characterized by the inability to express one’s wishes (and, possibly, by the absence of concrete wishes of certain sorts).
In closing, though, it is well to bear in mind the words of Dr. Nathaniel Chin: “People with dementia can still appreciate human contact, emotional love, and have feelings of love, even if they cannot express it.” This seems plausibly true. And, even if it isn’t true, it is probably more responsible (and charitable) to behave as if it were true, than to behave as though it were not.
Final Remarks
I cannot hope to resolve every issue in this brief treatment. Hopefully, however, what has been said suffices to give you an apprehension of the some of the range of relevant issues.[13]
[1] In an email exchange, Dr. Gregory Jicha, Robert T. & Nyles Y. McCowan Endowed Chair in Alzheimer’s Disease in the University of Kentucky’s neurology department, called the question “fascinating” lamenting that it “has not been fully explored” but opining that it “certainly deserves more attention.”
[2] Angela Lunde, education program manager for the prestigious Mayo Clinic, comments that “overall, there is no single pattern of sexual change in person living with AD.” Miller’s research seems to bear this out.
[3] He notes further: “Some of the other forms of dementia do affect the ability of men to engage in intercourse.”
[4] This was echoed by numerous other experts, including Dr. Russell Swerdlow, who added: “The AD would not be expected to profoundly directly impact a person’s sex organs. So physically there would not be [any predictable negative] …effect [sexually]. …Alzheimer’s in and of itself would not have a profound impact on the function of the sex organs.” Angela Lunde puts it this way: “Alzheimer’s disease alone does not generally impede one’s physical capacity and/or sexual function and reproduction.” Dr. May Sano demurs, however. She expresses doubts “that anyone has answers” to these questions.
[5] Understanding stages is crucially important to understanding Alzheimer’s. As Dr. Nathaniel Chin reports: “A person with dementia due to AD can still have sexual intercourse but it will depend on the stage. As the dementia worsens a person’s sexual drive as well as their physical ability to have sex can become impaired. Additionally, mood becomes affected and medications used to treat mood can interfere with a person’s emotional and physiological drive to have sex. Early in the disease there may not be any physical impairment to sexual function. Dynamics in relationships may change but a person with dementia physiologically can still have desires for sex.” More on these emotional angles, below.
[6] Dr. Hank Paulson adds: “Alzheimer’s does not typically lead to major changes in the physiology of sexual function, although some other neurodegenerative diseases can, such as multiple system atrophy.”
[7] He adds these thoughts: “The disease has a lot of sad components, and I often find myself thinking what a shame it is when a patient’s brain fails so much earlier than the body. It seems to me that these individuals would have lived a long, healthy life, if it weren’t for their brain condition.”
[8] It may increase “inhibition,” in Lunde’s words.
[9] He adds: “My guess is that this is a common problem that is simply not discussed often for a variety of social and cultural reasons. … Our ultimate goal would be to develop an intervention to help maintain emotional and physical intimacy given its importance to us as humans throughout our lifespan.”
[10] In legal speak, compos mentis.
[11] At least, prima facie.
[12] I.e., he or she is generally regarded as non compos mentis.
[13] Dr. Reiman notes that interested readers can find more information online, for example from the British Alzheimer’s Alzheimer’s Society, e.g., <https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/factsheet_sex_and_intimate_relationships.pdf>. Sarah Brisebois, Research Study Coordinator at the Alzheimer’s Disease Center on the campus of the University of Texas’s Southwestern Medical Center – Dallas, points us to several articles on the Alzheimer’s Association’s website: <https://www.alz.org/national/documents/topicsheet_sexuality.pdf>, <https://www.alz.org/oregon/images/microsoft_word_-_intimacy_and_sex-feb_08.pdf>, <https://www.alz.org/library/downloads/sexandintimacy_rl2015.pdf>.