Let’s Talk Sex & Dementia

Sexual behavior, needs and desires may change in persons with dementia. Their partner’s may change as well. To process these changes, the couple might need advice.

Talking about dementia, sex and intimacy can help.

Our Affiliate member, The Arbors of Bedford, is hosting webinars on sexuality and dementia. Join Jane Fleishman, PhD, MEd, MS, CSE for one, two or all three engaging discussions and trainings diving into the complexity of sexuality and cognitive impairment in our aging population.

  • Sex, Aging, and Dementia
    May 4, 2021
    11:00 am – 1:00 pm

  • Let’s Get Physical: Anatomy & Physiology of Sexuality & Aging
    June 1, 2021
    11:00 am – 1:00 pm

Each session has been approved for 1.5 credits with National Association of Social Workers (NASW). The sessions are free, but registration is required. Contact EBD@Benchmarkquality.com for the Zoom access link. Call Kim O’Connell at 781-983-9136 with questions.

Understanding dementia, intimacy and sexuality

Like everyone, people with dementia have sexual needs. Sexuality contributes to a person’s identity, and helps people to hold onto a sense of their own identity. Acknowledging the patient’s sexuality is truly fundamental to delivering person-centered dementia care. For many people with dementia, maintaining or developing a sexual relationship can also enhance wellbeing.

For many people living with dementia, physical intimacy continues to be a source of comfort, support and pleasure for many years. However, some people may experience sexual difficulties. There is no single ‘normal’ way of dealing with these.

If problems do arise in relation to sexual expression and behavior. If identifying the nature of the problem – and establishing whether there really is a problem at all – is an important starting point in deciding what action to take.

Sex and the Human Brain

All behavior, including sexual drive is mediated by the brain. More specifically, there are four areas of the brain that are implicated in sexual functioning: the temporal lobe, the corticostriatal circuits, the hypothalamus and the frontal lobe. 

The temporal lobe is responsible for our emotional and intellectual interpretation of sexual arousal. In other words, this part of the brain is responsible for deciding which particular person or event we find attractive. Neural pathways in the corticostriatal circuits are theorized to result in obsessive-compulsive behaviors. Strokes in the region of the hypothalamus often lead to increased sexual desire.

This changes can lead to a person with Alzheimer’s feeling stressed by the changes. Fear, worry, depression, anger, and low self-esteem (how much the person likes himself or herself) are common. The person may become dependent and cling to you. He or she may not remember your life together and feelings toward one another. The person may even fall in love with someone else.

Often a caregiver will pull away from the person in both an emotional and physical sense. They could be upset by the demands of caregiving or may feel frustrated by the person’s constant forgetfulness, repeated questions, and other bothersome behaviors.

Most caregivers learn how to cope with these challenges, but it takes time. Some learn to live with the illness and find new meaning in their relationships with people who have Alzheimer’s.

How to Cope with Changes in Intimacy

The type and level of intimacy can vary between relationships. In the early stage of the disease, intimate relationships may be affected by changes in the level of emotional connection and sexual desire between partners. While these changes are normal in light of both typical aging and how dementia progresses, coping with them can be difficult. Encourage patients to talk with their partner to identify a mutually enjoyable approach to intimacy.

Most people with Alzheimer’s disease need to feel that someone loves and cares about them. They also need to spend time with other people as well as you. Efforts to take care of these needs can help the person with Alzheimer’s to feel happy and safe. It’s important to reassure the person that:

  • They are loved.
  • They are safe.
  • They are cared for.

The following tips may help the caregiver:

  • Suggest they talk with a doctor, social worker, or clergy member about these changes. It may feel awkward to talk about such personal issues, but it can help.
  • Talk about concerns in a support group.
  • Think more about the positive parts of the relationship.

The symptoms of dementia may affect sexual feelings, which can result in changes in behavior or the desire for and the expression of affection. As dementia progresses, it’s important to take the needs and expectations for intimacy into consideration, as these changes will affect both the individual living with dementia and his or her intimate partner. It’s common for both people to feel guilt or shame about changing sexual feelings or inhibition, and it’s important to seek appropriate support to cope with any difficult feelings.

Of Clinical or Ethical Concern

Ethics Consult: Let Alzheimer’s Patients Have Sex?

One challenge in dementia cases is the issue of consent. Yet consent — with its formal standards — is a problematic concept when speaking of impaired patients. Elderly patients with dementia do not “consent” (in the legal sense) to many things — having their blood pressure checked, showering and changing clothes, eating. Rather, they often assent, express approval or agreement, to such activities, either by smiling or expressing enthusiasm or merely offering no resistance, even when they may not fully understand what they are doing or why.

Sexual activity is obviously more complicated than merely eating or watching television, and one certainly wants to protect vulnerable patients from truly involuntary sexual activity that amounts to sexual assault. Slate columnist Daniel Engber several years ago raised the possibility of “formal exceptions to the consent rules for spouses or long-term partners.” Rather, one might merely require assent in such cases — evidence that that patient is willing to engage in the behavior and appears to enjoy it.

More complex are cases of elderly individuals with dementia who seek sexual activity with one another and appear to benefit from it. It is a challenge to preserve both safety and dignity for these patients under such circumstances, but not one that necessarily justifies enforced chastity.

In one high-profile instance, the New York Times reported on the romance between former Supreme Court justice Sandra Day O’Connor’s cognitively impaired husband and another cognitively impaired resident at his assisted living facility — although the article did not explicitly touch upon their sex lives. Justice O’Connor, ever graceful under stress, appeared supportive. One can easily imagine another spouse feeling less sympathetic.

It is important to remember that patients with dementia, like all adults, are likely to be sexually active. The most common change is a lack or loss or sexual desire. Inappropriate sexual behaviors are rare, occurring in a minority of patients (28%) and can usually be managed with behavioral measures, with the use of pharmacotherapy for symptomatic management in only required in refractory cases.

Other clinical and ethical concerns in dementia include the capacity to consent to sexual intimacy, the formation of new relationships, sexuality in long-term residential facilities, and vulnerability to sexual abuse. Dementia care guidelines recommend a low threshold of suspicion for abuse, with a focus on patient safety. These must, however, be counterweighed by respect for patient autonomy and wishes.

Dementia, Intimacy and Sexuality, Alzheimer Society of Canada, Apr. 2018, archive.alzheimer.ca/sites/default/files/files/national/brochures-conversations/conversations_intimacy-and-sexuality.pdf.

D’cruz, Migita, et al. “The Expression of Intimacy and Sexuality in Persons With Dementia – Migita D’cruz, Chittaranjan Andrade, T. S. Sathyanarayana Rao, 2020.” SAGE Journals, 30 Dec. 2020, journals.sagepub.com/doi/full/10.1177/2631831820972859.

Hasselgren, Caroline, et al. “Sex Differences in Dementia: on the Potentially Mediating Effects of Educational Attainment and Experiences of Psychological Distress.” BMC Psychiatry, BioMed Central, 4 Sept. 2020, bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-020-02820-9.

How Your Intimate Relationships Can Change.” Alzheimer Society of Canada, alzheimer.ca/en/help-support/im-living-dementia/managing-changes-your-abilities/how-your-intimate-relationships-can.

MD, Jacob M. Appel. “Ethics Consult: Does Dementia Preclude ‘Consent’ to Sex? MD/JD Weighs In.” Medical News and Free CME Online, MedpageToday, 26 Feb. 2021, http://www.medpagetoday.com/blogs/ethics-consult/91381.

Zernike, Kate. “Love in the Time of Dementia.The New York Times, The New York Times, 18 Nov. 2007, http://www.nytimes.com/2007/11/18/weekinreview/18zernike.html.

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