Introduction

Intimacy and sexuality are basic human needs. They are intrinsic to people’s sense of self and well-being. Regardless of age, individuals require companionship, intimacy, and love. Yet, for older people, this intrinsic right is often denied, ignored, or stigmatized. For older people with dementia, the problem is even worse. They face the “double jeopardy” of being old and cognitively impaired.

An intimate relationship can enhance self-esteem and well-being. Human touch can provide comfort and companionship to combat feelings of loss and isolation.

Dementia, Sexuality, Intimacy, and Sexual Behavior

While intimacy can be defined in many ways, light forms of expression such as holding hands, stroking, or kissing by people with dementia are generally considered acceptable in a care setting. Any further form of sexual expression is met with concern at best, and outrage or shock at worst.

Clearly, there is a range of issues involved in terms of autonomy, dignity, mental capacity, and safeguarding that come into play. Nevertheless, most people are not even willing to consider that people with dementia may have intimacy or sexual needs due to their own misconceptions, preconceptions, and prejudice.

Intimacy and Sexuality in Elders

Even with profound cognitive impairments, many people with Alzheimer’s still enjoy a high degree of sociability and a capacity to form intimate relationships. Intimacy may also extend into the realm of sexual expression. Sexual expression is often misinterpreted as a behavioral problem. But it may be a sign that this important basic need has been overlooked.

The Effects of Dementia on Intimacy and Sexuality

Persons with dementia still have many of the same desires as others. Their dementia may have an effect on their ability to sexually express themselves. Some of these changes include the following:

• Change in ability to care for self (ADLs)
• Change in social interactions
• Cognitive, behavioral and emotional changes
• Physical changes
• Medication side effects

Appropriate Responses to Care Recipient’s Sexual Expression

Understand how to respond to a care recipient who is expressing his or her sexuality. As long as it isn’t violating the rights of another, there shouldn’t be any issues with allowing them to be sexually expressive. What one might call 'inappropriate' behaviors are often simply private acts in public places. The response of caregivers to another who is being sexually expressive must be appropriate in order to decrease the negative behaviors that may be exhibited by the care recipient.

Here are ways to respond appropriately

• Caregivers should learn about the individual and the history of past behavior and social relationships.
• Preserve and respect remaining capabilities.
• Accept that people with dementia continue to need loving, safe relationships, and caring touch.

In the event that a care recipient is being sexually expressive while violating the rights of another, there are positive interventions that can be implemented so as not to shame the individual, or make them think that they did something wrong. These interventions include the following actions:

• Remain patient and calm.
• Gently lead them to a private place.
• Monitor your own behavior (e.g., touching, hugging, etc.).
• Give attention and reassurance.
• Identify yourself to remind the person of your true relationship.
• Provide clothing that makes exposure difficult (e.g., change clothing from dresses to pants, from pants with zippers to pants that pull up, or that buttons or zips in the back).
• Get support from a supervisor or co-worker.
• Turn the situation into one you can laugh about.

Barriers to Sex in Care Settings

Being sexually expressive is often very challenging for community members for a variety of reasons. These reasons are listed below.

• Lack of privacy
• Few private rooms
• Little respect for territory
• Mental illness
• Physical illness
• Caregiver attitudes
• Family attitudes
• Adverse effects of medication
• Feelings of being unattractive
• No place to socialize
• Lack of an able partner
• Family wishes and care recipient’s rights
• Capacity concerns

Even with profound cognitive impairments, people with Alzheimer’s still enjoy a high degree of sociability and a capacity to form intimate relationships. Intimacy may also extend into the realm of sexual expression. Sexual expression is often misinterpreted as a behavioral problem, but it may be a sign of an important basic need—the need for human touch, closeness, and intimacy—that has been overlooked.

Caregiver Responsibilities

• Develop policy and procedures that provide a non-judgmental, safe and effective strategy to support a care recipient’s well-being.
• Protect the person from harm or coercion related to sexual expression by others or themselves.
• When a relationship between care recipients progresses to sexual activities that require privacy, give them their privacy.
• Document observations of sexual expression and communicate pertinent facts to the care recipient’s designated representatives.
• Educate the family if the individual is still legally married, to help the spouse understand what it is and what it is not.