Sex When Caregiving: Navigating Your Changing Relationship (Even if There’s Dementia)

(This article is part 2 of a special guest series by geriatrician Dr. Nicole Didyk, founder of the blog and YouTube channel The Wrinkle. Like me, Dr. Didyk has a particular interest in informing and empowering older adults and families. So I’ve been very glad to have her contributing to the site these past few months — you may have noticed she’s been helping me answer comments — and I’m thrilled to say she’ll be covering some topics that I haven’t yet had the time to address. Enjoy! — L. Kernisan)

Let me begin by sharing a true story:

One of the most unforgettable couples I ever worked with was Grace and David. Grace developed Alzheimer’s at the age of 63, and within 2 years of diagnosis, her symptoms were such that she moved into a long-term care home and used a wheelchair to get around.

She and David had been married for 42 years, had 4 kids, a dairy farm, and a warm and affectionate marriage. David continued to visit Grace 3 times a week, until her death (after a bout of pneumonia) at the age of 69, and in the last two years, his girlfriend, Linda, accompanied him almost every time.

I remember being so touched by the way that David and his new partner lovingly advocated for Grace when she needed it, with both stepping in to provide hands-on care when staff at the home were overwhelmed. There were some who judged David for so boldly “having an affair”, but most saw his involvement in a new relationship as a much-needed respite for him, and a way to expand the circle of love for Grace.

Have you ever met a couple like Grace and David? Keep their story in mind, as I share more about Sex and Caregiving, and Sex and the Changing Brain.

How does sex and intimacy change when one partner becomes a caregiver?

Last year, for the Wrinkle, I interviewed my colleague Natalie Wilton, social worker, and sex therapist, about intimacy and sexuality in couples who move into caregiving roles, due to dementia or another illness.

Natalie and I have chatted about sex in later life before; in fact, I just recently shared the highlights with Dr. Kernisan on her podcast episode Better Sex in Later Life. (You can also read my related guest post on BHWA, How Sex Changes With Aging (& What You Can Do About It)).

Natalie Wilton’s work as a sex therapist for older adults has kindled a passion for her research into sexuality and the older caregiver. It’s hard to talk about older caregivers without bringing in a discussion of dementia, and Natalie’s main professional role outside of sex therapy is as a behavioral specialist working with people with dementia.  Some of the most distressing behavioral changes in dementia can involve sexuality – but sexual expression can also be a positive force in the person with a changing brain.

On my website,  The Wrinkle and YouTube channel of the same name, my interviews with Natalie led to a three-part series about Sex in Later Life.  Part Two was about Sex and the Caregiver, and Part Three addressed Sex and the Changing Brain

In this article, I’ll share some of the highlights from my interviews with Natalie, when it comes to better sex when you are a late-life caregiver to a spouse or partner.  In particular, I’ll cover:

  • What we know about partners becoming caregivers
  • How caregiving can change an intimate relationship
  • How to maintain sexuality and intimacy in a caregiving role
  • Addressing sexuality and intimacy when one partner has dementia

When spouses and partners become caregivers

Caregiving is a hot topic, and for good reason. In Canada, there are 8 million unpaid caregivers, and approximately 8% of these are looking after a spouse (the highest proportion is children looking after an aging parent at 48%).

In the United States, there are an estimated 34 million unpaid caregivers, and 22% of those are spousal caregivers. Over half of those spouses are caregiving alone, without support from children or other family members.  Spousal caregivers tend to be older themselves, with an average age of 62.3 years old, and 43% are 75 or over. Spousal caregiving may be underreported as many people, especially women, feel that it’s just part of their wedding vows, and not a separate role that deserves recognition and attention.

Caregiving can take many forms:

  • Emotional: Support as the person copes with appointments, uncertainty about test results, the future, and symptoms of the illness.
  • Physical: hands-on assistance with bathing, dressing, transferring, walking, feeding, managing bowel and bladder functions and more.  Caregivers spend an average of 6 days a month helping with these activities.
  • Cognitive: planning activities and meals, managing finances, organizing appointments, meeting with physicians and other providers, and advance care planning. Caregivers spend an average of 13 days per month supporting these activities.

The list of tasks that may need to be supported is exhausting to read, and that often doesn’t leave the caregiver with much energy or desire for sex.  Caregivers may also have less time to pursue their own hobbies and interests or may not be able to enjoy them without their partner, which is a source of added stress.

In my interview with Natalie Wilton, she pointed out that: “You will have a sexual identity before being a caregiver, during the caregiving and after that caregiving role ends, you will still be a sexual being,” but also that, “people (in a caregiving role) often set that aside because they are so busy looking after everything else.”

Caregiver or lover?

One of Natalie Wilton’s main research questions is: ”How can we be caregivers and sexual beings?”.  Caregiving can alter a relationship when:

  • The caregiver takes on tasks the partner used to do (role reversal or change)
  • The relationship dynamic changes to that of a parent-child rather than an intimate partnership
  • Caregivers are more likely to have health issues themselves, including depression
  • Female caregivers, in particular, might feel a sense of “spousal duty”, which can lead to resentment and burnout

Now, I should mention that there are many positive aspects to caregiving too:

  • Many caregivers report a sense of fulfillment and satisfaction in being able to help their partner through their illness.
  • It can be empowering to take on the role that the partner used to perform (for example, taking over finances or driving)
  • For some, being a spousal caregiver is a spiritual journey and an opportunity to show love in a new way.

Caregiving in Dementia

Later in the article, we’ll cover how sexuality can change in a person living with dementia, but when it comes to caregiving for your partner with dementia, it’s worth pointing out a few of the challenges:

  • Ambiguous grief for the loss of the person the way they used to be, and for the relationship
  • The person with dementia may have responsive behaviours which can make caregiving more difficult (such as apathy, hallucinations, sleep pattern disruptions)
  • There is a need for cognitive caregiving, in addition to physical, emotional and social support to the person with dementia
  • The course of dementia is usually one with frequent changes in a person’s symptoms and needs and a trajectory that is hard to predict
  • Caregivers can become socially isolated as dementia progresses and  the person with dementia goes out less and visitors come by less frequently

(Reference: Macdonald, M. (2019) Experiences and perceptions of spousal/partner caregivers providing care for community-dwelling adults with dementia: a qualitative systematic review. JBI Database of Systematic Reviews and Implementation Reports: June 2019.)

Maintaining sexuality when you’re a caregiver

Natalie Wilton shared that, with the demands of caring for a spouse: “People are trying to find control of their whole day when they’re caregiving. And so, then they fall into that parent role, it’s hard to feel sexy after you’ve spent the rest of your day in that parent type role.”

Another challenge is the need for what Natalie calls “instrumental touch”.  In the course of caregiving, there may be lots of physical contacts, but much of it is for the purpose of providing care, not to show affection or for pleasure (as in “affectionate touch”).  This may leave a caregiver without the craving for their partner’s touch, but also not feeling satisfied.

With these challenges, why even take the time and effort for sex when you are a caregiver? As we mentioned in the previous article about How Sex Changes With Aging, sex can have physical and emotional benefits for caregivers:

  • Sex can cause the release of good brain chemicals like norepinephrine, serotonin, oxytocin, vasopressin, nitric oxide (NO), the hormone prolactin, and even endocannabinoid (your body’s cannabis chemical).
  • It boosts self-esteem (for both caregiver and partner with care needs)
  • It promotes intimacy and closeness
  • Caregivers who have a satisfying sex life are happier than those who don’t

In the podcast “How to Have Better Sex in Later Life” on BHWA, and in Part One of the series on The Wrinkle, we talked about “The 3 T’s” of sex and intimacy.  These are “Touch, Time and Talking”, each of which needs to be enhanced when there are challenges in a couple’s sex life.

  1. Touch: Natalie Wilton points out that there can be opportunities to turn instrumental touch into affectionate touch: “Maybe that means when you’re washing somebody that you rub their back a little bit longer, you give them maybe a cream massage and just trying to find those moments of affection where you can add affection into those instrumental pieces.” She adds: “Just focus more on those caring, loving touch, relaxing touch, as opposed to actually trying to feel like you need to have sex all the time.”
  2. Time: As we mentioned in the first article, “Libido almost has a 24-hour cycle,” says Natalie. ”It’s not necessarily in that 24 minutes before sex, it’s in the 24 hours ahead of it. When you’ve been caregiving and working hard for 24 hours, and the 24 hours before that, it can be really hard to feel sexy and feel like being intimate.”  Often, making it a priority to allow time for other pleasurable activities can be satisfying to caregiver and person with care needs: “Try to take the focus off performance and look more towards pleasure. Focus more on getting those comfort things out of intimacy, the feelings of love and affection, those relaxation aspects that you can get out of intimacy rather than feel that there’s a performance that needs to happen.”
    1. You may also need to make the time for solo sex. Natalie suggests that people consider masturbation to meet their needs: “People don’t necessarily think about that and think, oh, that’s not something that I want to do. But it’s good for you and we talked about it before that use it or lose it.”
  3. Talking: This can include talking to:
    1. Your partner: Early in the course of the illness or disability, it’s helpful for couples to talk about all aspects of their relationship, yet sexuality and intimacy are often ignored.
    2. Your health care provider: When a health professional doesn’t ask about sexuality, a caregiver is missing out on addressing “disenfranchised grief”, and not acknowledging the loss of that part of the relationship. Natalie told me that: “Sexual health is included in our physical, our emotional wellbeing. If we don’t deal with it, it’s neglecting an important aspect of our life and our identity.”  She indicates that a big part of her job as a sex therapist is validating that a caregiver’s sexual needs are important and need to be addressed.

Spousal caregivers are providing hands-on assistance to their intimate partner, often at the expense of meeting their own needs for intimacy and sexual satisfaction.

For any sexual challenge that comes up in a relationship, taking more time, more touch and more talking are strategies that can refresh the caregiver’s energy and restore intimacy.

That said, the challenges related to sexuality can be particularly tricky when the spouse is living with dementia. So let’s now turn to that.

Sex and Dementia

Talking about sex and dementia is almost always complex, and when I talked to Natalie Wilton about Sex and the Changing Brain, our conversation ranged from addressing “Inappropriate Sexual Behaviour” (ISB) to what to do if one partner forgets about the relationship (because of dementia). But no matter what specific issues come up, it’s essential to remember that both partners still have sexual needs.

In this part of the article, I’ll cover some of the key points from my chat with Natalie:

  • Ways the brain changes of dementia can affect sexual expression
  • How to determine if sexual behaviour is inappropriate or not
  • Resources for supporting healthy sexual expression in those living with dementia and in long-term care
  • When another person enters the relationship

Dementia and Sexual Expression

Dementia is a neurocognitive disorder marked by changes in memory, language, judgment, reasoning, and other areas of brain function.  It’s not a normal part of aging, but older age is the biggest risk factor for dementia. The most common cause is Alzheimer’s disease, followed by strokes, and it’s not uncommon to have both of those, which we refer to as “mixed” dementia.  Most types of dementia are progressive so that the longer someone lives with that diagnosis, the more severe the symptoms.

As a geriatrician, a large part of my practice is caring for older adults with dementia and their families, and one of the most common reasons that sex comes up in my office is in the context of sexual behaviors in a person with dementia.

Because of the neurocognitive changes in dementia, sexual expression can be altered.  It may relate to the type of dementia, or the part of the brain that is affected, so for instance:

  • Alzheimer’s disease – a person may not recognize their partner, may not recognize that a setting is inappropriate for sexual activity, may not recall their own age and marital status, and seek a partner outside of their marriage and/or age group.
  • Temporal lobe changes – may cause disinhibition (loss of “filter”), hypersexuality (uncontrollable need to have sexual stimulation)
  • Frontal lobes – may cause a loss of interest in sex, disinhibition, and apathy
  • Mood and emotional changes –  Natalie shares that: “Even the lack of empathy and understanding that comes with brain changes, when you become that more self-centered person, you don’t appreciate how what you’re saying or doing is affecting other people.”

These changes can manifest as:

  • Increased or decreased interest in sex
  • Increased or decreased ability to perform
  • A decrease in sexual inhibitions
  • Change in sex “manners”

What does not change is the need for intimacy and comfort, whether through sex or some other form of communication, on the parts of the person with dementia and their partner.

What to do when sexual behavior is “inappropriate”

Sexual expression by a person with dementia often raises an alarm and is quick to be labelled an Inappropriate Sexual Behaviour, or ISB.  Natalie Wilton is not only a sex therapist but also a practising behaviour therapist for those with dementia and responsive behaviours. She has noticed this labelling, and told me that: “When we see a sexual expression and we know the person has dementia, the first thing we need to be looking at is how are the brain changes that we’re seeing in this person affecting the way this expression is appearing.”

She went on to share that when determining the unmet need that is being signalled by the behaviour, we should consider a person’s:

  • Previous sexual orientation (which may or may not have been publicly disclosed),
  • Sexual “persona” (whether they were reserved and shy, or flirtatious and provocative),
  • Culture and cohort (whether they were raised in a time and place with clearly defined traditional gender roles or not, for example)
  • Prior sexual and romantic experiences

An example may be a person who is living in a long-term care home and is disrobing in shared spaces, like the dining room.  Rather than being an ISB, this behaviour is related to the fact that, before developing dementia and going to live in a communal setting, this man would usually hang around his home in the nude.  It was how he felt most comfortable when he was at home, and now that he is in a long-term care facility, he wants to be comfortable again, but may not recognize that this could be problematic when others are around.

Listen to the interview for other examples, which illustrate, as Natalie put it: “That lesson about digging a little bit deeper and finding out about the person and seeing if we can apply the dementia lens to it before we apply other things to it. And what the actual needs are and intent.” Often an ISB is normal behaviour, just happening in the wrong setting, or maybe a  responsive behaviour that is not sexual but related to another need.

Sometimes a behaviour is inappropriate though, and may fall into one of these categories:

  • Intimacy seeking – seeking touch, or intimacy, but in the wrong context or with the wrong person
  • Sex talk, (foul language, not in keeping with a person’s previous persona)
  • Sexual acts (touching, grabbing, exposing, or masturbating, which can occur in private or in public areas)
  • Implied sexual acts (for example openly reading pornographic material or requesting unnecessary genital care)

Medications that are sometimes used

If there has been a careful search for unmet needs, and those needs have been addressed but the challenge persists, then medications may be the answer.  Here’s a list of medications that can be used to treat ISB:

  • Antidepressants: Selective serotonin reuptake inhibitors (SSRI’s) are the most common class of antidepressants used for ISB, as they seem to reduce libido and can also decrease anxiety and obsessional thinking. Their side effects can include diarrhea and upset stomach, and an increased risk of falls.
  • Antipsychotics: Quetiapine is an example of an “atypical” or newer generation antipsychotic which is commonly used to treat behavioural challenges in older adults with dementia, although there are concerns about safety, which you can read more about here.  Quetiapine is a tranquilizer and can also cause sedation, increase the risk of falls, and does have an FDA warning associated with it.
  • Anticonvulsants: Usually used to control seizures, these medications, like pregabalin, carbamazepine, and valproic acid, can also reduce libido and may help with the treatment of ISB.  Side effects include sedation and increased fall risk.
  • Cholinesterase inhibitors: Drugs like donepezil and rivastigmine are used in the treatment of Alzheimer’s disease and they can help in ISB, although the mechanism by which they work isn’t well understood.  The main side effects to watch out for with these are loss of appetite, diarrhea, and nausea.
  • Hormonal medications:  Drugs that reduce the production or activity of testosterone, like finasteride, medroxyprogesterone (MPA), cyproterone acetate (CPA) or estrogen, can reduce libido and reduce ISB.  Side effects are usually fairly minimal if these drugs are only for short term use.
  • Beta-blockers: Most often used to treat high blood pressure or heart disease, beta-blockers like metoprolol can reduce sexual drive, but side effects can include reduced heart rate and blood pressure, and worsening asthma.

As with all medications we use in Geriatrics, the approach is to “start low and go slow”, and only use a drug if we feel that the potential for benefit would outweigh the risk of harm.

ISB can be very distressing to patients, staff (if it’s happening in a care home) and families. So it’s often reasonable to consider medication, along with the non-pharmacological strategies that we always use when there is a responsive behaviour in dementia.

Dementia and Relationships

Remember Grace and David? I started this article with a story about Grace and David, who maintained a strong relationship after one of them moved into a long-term care home with dementia, and the other got a new “girlfriend”. This is not an uncommon scenario, and sometimes the person with a new partner is the one living with dementia.

I asked Natalie Wilton about it and she told me that a partner with dementia or caregiver turning outside of marriage for sexual needs, may be related to not recognizing the spouse. ”It’s about understanding dementia and what changes are happening in the brain, “  that makes framing it as “infidelity” inaccurate at times. Natalie says: ”It’s about that need for companionship, for warmth”, for the person with dementia. When education is provided to families, the situation can be less uncomfortable and more supportive.

Early after a dementia diagnosis, some couples may want to discuss their wishes if one partner seeks to fulfill their sexual needs outside of the marriage. Natalie touched on this in our interview: “Even if you don’t actually have that talk, you have a sense like I think my husband would be okay if I remarried somebody if he died. But what we don’t talk about is what if we’re still living? What if we are cognitively unwell and I’m living in a nursing home and you meet somebody else. Is it okay to go outside of that relationship? And there’s no perfect answer for that.”

Another common challenge for a caregiver is whether to initiate sexual activity with a partner who may struggle with recognizing the care partner is.  Natalie told me that this is “a big issue that people struggle with, and it’s a moment by moment decision in those situations.” There’s no “blanket” consent to sex, even between spouses, so interaction by interaction, the care partner needs to interpret the cues and decide what is best.

When couples separate because one of the partners has moved to long-term care, the issues around sexual expression can be heightened. An example of a framework for how to support positive sexual expression in long-term care is the Best Practice Approach to Intimacy and Sexuality in Long-term care, developed by some of my colleagues in Geriatrics in Ontario, Canada.  The basis of this tool is that healthy sexual expression is a human right (as recognized by the WHO) and that caring for a resident’s sexual health when necessary is a part of providing comprehensive, compassionate care.

The Bottom Line:  

If you’ve found yourself taking on a caregiving role, I want you to know that it’s common for this to affect intimacy and sexuality.

The good news, though, is that many caregivers are able to improve this important dimension of their lives, once they’re given some encouragement and suggestions.

If you are a caregiver for your partner, here are the key messages I want you to know:

  • When one partner becomes a caregiver, it is inevitable that the dynamic changes and this can bring changes to the intimate and sexual aspects of the relationship.
  • If not addressed, these unmet needs can cause resentment and affect the health of the caregiver, and the person receiving care
  • Using a “3 T’s” framework, strategies to address the challenges include:
    • acknowledging and communicating about sexual and intimacy needs
    • allowing more time and putting less importance on a particular physical act or outcome
    • emphasizing affectionate touch

If you have a partner living with dementia, these are the key messages I want to share:

  • The brain effects of dementia can alter a person’s sexual expression and behaviour, and these changes may not be something a person can “control”
  • When sexual expression causes a challenge, the care team should begin with getting an understanding of the person, their illness and their environment, to look for non-pharmacological approaches
  • Medications can be a part of the treatment plan if there is inappropriate sexual behaviour, but they are not without some risk of side effects
  • Forming new relationships may be a part of a couple’s journey with dementia and maybe something that can be negotiated early after a diagnosis has been received.

Here are some resources if you would like to learn more about Sex, Dementia, and Caregiving:

I’d also be delighted to have you come visit my site The Wrinkle, where you can listen to my interviews with geriatric sex therapist Natalie Wilton; I even have downloadable transcripts for those who want them. Here are the links: