How your intimate relationships can change

Understanding dementia, intimacy and sexuality

"The relationship between you and your caregiver can be complex, particularly if your caregiver is your loved one, because those relationships are built over time. They are shifting and possibly changing continuously. For example, to the extent your relationship has always included the ability to talk, it has now become very difficult to talk and recall. And so, you are left with not much to contribute to what was very precious in terms of breakthrough conversations or the potential for those. It changes your relationship. And it’s kind of scary." - Leonard, from Oakville, Ontario. Leonard lives with dementia with Lewy bodies.

All of us have needs and wishes for friendship, belonging, companionship, intimacy and the expression of our sexuality. These needs can be met in many ways and through a wide range of interactions with others, including:

• Sharing of personal thoughts and feelings,
• Handholding,
• Hugging,
• Kissing and
• More private forms of expression such as sexual touching, masturbation or intercourse.

Dementia can change how you express these needs.

If left unaddressed, these changes are likely to cause frustration in your most intimate, trusted relationship. This frustration, coupled with a lack of understanding, may compel either person in a relationship to find ways to meet their needs that may not be considered acceptable or appropriate. It's important, then, for both you and your partner* to know how dementia may challenge and change the ways you express your intimacy and sexuality.

It's also vital that you and your partner navigate these challenges together, through open discussion and mutual understanding.

When one person has dementia, couples are often able to continue to have a close, intimate relationship for many years. When changes do affect the physical relationship, it's important to remember that every couple has their own way of managing these changes. What may work for one relationship may not work for another.

*Note: For ease of reading, the term "partner" is used here to refer to the person whom you share companionship and physical intimacy with. This could be a spouse, common-law partner, lover or a friend.

How does dementia affect your intimate and sexual behaviour?

Dementia affects how we feel and act. As such, it can change how you express your wish for companionship and intimacy – in ways different or unusual from what you're used to. For example, you may become more open about or interested in sexual activity, or experience the opposite by being less affectionate.

Because of this, intimate and sexual behaviour may become more unpredictable and harder to understand as your dementia progresses. It's important that both you and your partner understand that these changes in behaviour are common, and your dementia may prevent you from becoming aware of these changes as they happen.

Some of the changes in intimate and sexual behaviour that you and your partner may notice include:

Reduced sexual energy and interest

You may find that your sexual energy and interest are lower than what you've come to expect. Dementia can bring about complex and mixed emotions such as depression, which in turn can cause you to feel less interested in sex and other intimate acts. With treatment of depression, sexual interest often returns.

Increased sexual energy and interest

However, dementia can also cause the opposite effect. As the ability to remember sexual interactions decreases, your desire for sexual intercourse can increase. In rare instances, this increased need for sex is constant. This may create conflict in the relationship between you and your partner or others around you.

Socially inappropriate behaviours

Often referred to as disinhibited behaviours, these tend to occur in the later stages of dementia, when it becomes difficult to follow generally accepted social norms due to the intensity of symptoms caused by dementia. You may start acting in ways that are considered inappropriate or in ways which your partner may find unusual, unexpected or even distasteful.

For example, you might behave in a manner that's unlike your usual self, or in ways that others might consider embarrassing and inappropriate, such as flirting with strangers or graphically speaking about sex. Personally intimate and sexual activities that you would have otherwise kept private, such as disrobing in front of others or masturbation, might happen in public.

Know that, should these behaviours occur, it's because the usual brain mechanisms that keep us from acting on our impulses may no longer be working. It's dementia and its symptoms that cause these behaviours, not you.

Why it's important to talk with your partner about intimacy and sexuality

While talking about issues related to your sexuality, intimacy and sexual expression is not always easy, it's important to discuss them with your partner as soon as the diagnosis becomes evident and as the dementia progresses.

• Intimacy and sexuality are complex human needs that lead to emotional and moral reactions. We are often not comfortable talking about these reactions with others when we need to, or when they need to. The more intimate the forms of expression, the greater the need for privacy.
• By addressing worries and expectations openly, you and your partner can continue to be intimate with each other through mutual agreement and with an understanding that how you express intimacy may change as the dementia progresses. Often it is not a matter of ceasing sexual activity, but finding different ways of expressing intimacy.
• As your dementia progresses into the later stages, you may no longer be able to recognize your partner and may explore a relationship with someone else. This can be very difficult for your partner and for other family members.
• As your partner takes on more of a caregiving role, they may no longer have sexual feelings or the desire to continue a physically intimate relationship. This can bring feelings of guilt for your partner.
• In some cases, a person living with dementia may develop a new relationship with someone of the same gender, or the opposite gender, even if that was not their identified orientation in the past. Any of these instances can challenge your personal values and beliefs and can create concerns about sexual safety (e.g. are appropriate measures being taken to avoid sexually transmitted diseases and infections?).
• Talking with a trusted healthcare provider can help you and your partner anticipate changes that may come as a result of your dementia and consider strategies that can work for you.

The relationship with your partner is unique. Each person chooses the other for different reasons. Relationships can be straightforward or complex. Regardless of the type of relationship, it's important that both you and your partner find it satisfying.

More useful links and resources

Conversations about dementia, intimacy and sexuality. Alzheimer Society of Canada. In this information sheet, learn how dementia can affect a person's sexual behaviour and desire for intimacy, and get strategies to help people living with dementia, caregivers and healthcare providers have conversations about intimacy and sexuality.