Many symptoms in FTD can be difficult to talk about, which can increase stress and feelings of isolation, especially when caring for a spouse or partner. For those experiencing changes in sexual behavior with their partner or loved one with FTD, especially compulsive sexual behaviors, it is important to know that these changes are often the result of the diagnosis and speaking with other care partners and medical professionals can support you. If you participate in an FTD care-partner support group, there may be others experiencing similar issues but are afraid to bring them up. To start the conversation, consider asking at your next meeting if others are noticing changes in intimacy.  AFTD’s HelpLine is also available as a confidential source of information, resources and support for even the most difficult symptoms related to FTD.

FTD symptoms can vary widely from person to person. Not everyone will experience these sexual behavior symptoms or to the same extent. The symptoms can present as a decrease in sexual drive or an increase, called hypersexuality, which can be further complicated by a loss of empathy and connection in the relationship and disinhibited behaviors. (More information can be found in the article Disinhibition in FTD).  A 2013 study by Dr. Mario Mendez and Jill Shapira found reports of hypersexuality in 8-18% of individuals with bvFTD. These changes can be in stark contrast to the person’s past behavior and values, having an impact on spousal and partner relationships as well as extended family relationships, community, and social interactions.

When the person exhibiting hypersexual behavior is your spouse or partner, it becomes even more emotionally complex. The person you once shared a romantic, consensual relationship with may now behave in ways that are confusing, hurtful, or even frightening, due to FTD. Even when these are understood as symptoms of the diagnosis, they can lead to feelings of guilt, stigma, resentment, and isolation. It’s okay to feel conflicted—love, duty, grief, and discomfort often mix in these situations. You are a caregiver, yes, but also a person with physical and emotional boundaries that deserve respect. If your spouse had full control, they wouldn’t want to hurt or distress you. So advocating for your peace, your space, and your mental health is a form of deep love—for them and for yourself.

When changes in sexual behavior are present, they can also lead to a new focus on pornography, unwanted sexual advances or sexual comments, indecent exposure, openly masturbating, extramarital affairs, or promiscuous behavior. Some of these behaviors can lead to high-risk situations that require planning and support—although not all people with FTD will experience the same risks. These may include vulnerability to scams or personal security through websites, unsupervised access to children or vulnerable adults in a facility or care setting, indecent exposure, or unwanted sexual advances in community settings. Changes in sexual behavior should be discussed with your health care provider early. Although it can be uncomfortable, early discussions can lead to better management and support. Approaches to hypersexual behavior in FTD require careful consideration to help identify possible triggers and develop approaches, if there are risks involved or if there is unwanted sexual contact or attention. In some cases, a health care provider may discuss the use of medications to help manage challenging behaviors.

AFTD’s FTD Behavior Tracker is a helpful tool to write down your observations and communicate with health professionals:

Mendez MF, Shapira JS. Hypersexual behavior in frontotemporal dementia: a comparison with early-onset Alzheimer’s disease. Arch Sex Behav. 2013 Apr;42(3):501-9. doi: 10.1007/s10508-012-0042-4. Epub 2013 Jan 8. PMID: 23297146; PMCID: PMC3596488.  https://pubmed.ncbi.nlm.nih.gov/23297146/

Chapman KR, Spitznagel MB. Measurement of sexual disinhibition in dementia: A systematic review. Int J Geriatr Psychiatry. 2019 Dec;34(12):1747-1757. doi: 10.1002/gps.5208. Epub 2019 Sep 11. PMID: 31489715.  https://pubmed.ncbi.nlm.nih.gov/31489715/