Dementia & Intimacy: A Beginner’s Guide to the Changing Relationship

Living with dementia comes with a lot of physical, mental, and emotional changes. These changes include shifts in sexual behavior, desires, needs, and intimacy. If you are the partner to someone with dementia, your needs and experiences may change too.

Talking through these changes in sex and intimacy with dementia can help both you and your partner cope better with the experience. Let’s discuss how dementia affects sex and intimacy, how to gauge consent, how to manage challenging behaviors, and more.

Physical Intimacy and Dementia

Many couples continue to enjoy sex and intimacy after a dementia or Alzheimer’s diagnosis. Other relationships find ways to be intimate in different ways. Physical intimacy may need to change, so keeping an open mind about what you expect and how you define sex and intimacy is important.

Here are some things you can do to help manage these changes:

Remind and reassure your loved one that they are safe with you and that you love them.
Find other ways to spend quality time together, including talking, playing games, or going for a walk.
Try other ways to be physical and intimate like snuggling, holding hands, dancing, massages, or giving more frequent hugs.
Consider confiding in/talking to someone outside of your relationship about the things you’re struggling with.

What Changes with Dementia?

Different types of dementia manifest differently. Before the dementia diagnosis, you may have noticed changes in your partner’s inhibitions, for example.

They may have more of a direct approach toward sexual intimacy or express less emotional attachment, both of which can change how intimate the act feels. These changes are often caused by frontotemporal dementia.

If your loved one is experiencing hypersexuality, for example (an over-interest in sexual activity), they may not actually be interested in sex, and may simply be craving intimacy. You can try to handle it in other ways, such as reassuring the person, giving them more attention, and offering more affection.

Important Note: You do not need to do anything you’re uncomfortable with or don’t want to in order to appease them.

Other factors to consider

Beyond just the direct sexual relationship, a person with dementia or Alzheimer’s may experience stress over the changes they are experiencing in their own minds, memories, and behaviors. These can also lead to changes in intimacy.

Here are some examples:

Self-esteem issues, fear, depression, frustration, anger, and more are common and can either cause the person to cling to you or push you away.
Medications can cause side effects that make your loved one more or less interested in intimacy.
Memory loss can cause behavioral changes or personality changes that may affect how the person interacts with or remembers you.

It’s also important to recognize your own experience in the throes of caring for your loved one. For example:

You may be frustrated, upset, or exhausted by the experience and changes you’re witnessing.
You may find yourself struggling to recognize your partner within the person you are going through this experience with.
Sometimes the person may fall in love with or seek companionship with someone else because of dementia.

Learning to cope with the challenges of dementia will take practice. Have patience for both yourself and your loved one, and know that these changes are their disease, not them as a person.

How to Cope with Mismatched Expectations

No two relationships are the same and how you manage these dynamics will vary, but the first consideration is to understand what it is you’re looking for in a sexual and intimate relationship.

Is it the companionship, warmth, and closeness of another human?
Or, is it more about relieving pent-up sexual tension and/or more physical needs?

For the former, close, non-sexual friendships and familial connections can help to meet some of the mental intimacy and human closeness needs. For the latter, pent-up sexual tension can be relieved through masturbation, exercise, and other physical activities.

Regardless of how the need manifests and how you choose to take care of it, speaking with friends, family, or a trusted therapist can help you work through some of the worst of the disconnect.

Dementia and Consent

Consent is always the most important part of any sexual encounter. A dementia diagnosis does not automatically revoke someone’s ability to consent. However, the ability to provide consent may ebb and flow from time to time. For example, they may be less responsive or nonverbal. In these cases, you will need to establish consent through nonverbal signs.

In a nonverbal situation, it’s important to note that arousal does not equal consent. (Source) If you feel at all as though the consent is unclear, it is best to back off on the idea until it becomes clear.

The bottom line: You should never initiate sexual activity without clear consent and should be willing to stop if either side is reluctant.

How to Handle Challenging Behavior

As we’ve mentioned a few times already, dementia manifests differently within each person.

Some people with dementia will experience no changes during sex.
Some partners of a dementia patient report and experience their partner feeling cold, detached, or emotionally unavailable.
Others report that their loved one forgets the encounter shortly after, or struggles to recognize them as their partner.

Challenging behaviors may include:

Inappropriate behavior
For getting their partner and or mistaking someone for another person
Exhibiting sexual behavior in public
Aggression

The Alzheimer’s Society in the UK offers a great resource available here to walk you through what to do in each of these situations. The most important thing to know is that you are not alone and these challenges are common.

Closing Thoughts: Dementia & Intimacy

Navigating relationship changes through dementia, including more sensitive topics like intimacy, is nothing to be ashamed of – millions of couples have gone through this before you, and millions more will after you. Willingness to open up your heart and mind about the experience, including a willingness to discuss it outside of your relationship, can be invaluable.

If you’re providing care for a loved one with dementia and want to talk to someone about it, the California Caregiver Resource Centers are here to support you. We are a non-profit network of 11 Centers that support caregivers across the state of California. Every county in the state is covered.