Intimacy and sexuality
Everyone has a need for companionship and physical intimacy. People with Alzheimer's disease or other dementia are no different. They may fill this need through marriage, partnership or friendship. Changes to the need for closeness and physical intimacy brought on by the disease will affect any relationship.
Expressions of physical intimacy between two people can range from a handshake and pat on the back between two colleagues, to hugs and strokes between friends, to sexual relations between lovers. The more intimate the forms of expression, the greater the need for privacy.
Relationships with partners are unique. Each person chooses the other for different reasons. Relationships can be straightforward or complex. Regardless of the type of relationship, it is important that it is satisfying for both people.
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 is important to remember that every couple deals with these changes in their own way.
Note: For ease of reading, the term "partner" is used here to refer to the person with whom the person with dementia shares companionship and physical intimacy. This could be a spouse, partner, lover or friend.
For people with dementia
Meeting needs for physical intimacy: The changes in the brain caused by Alzheimer's disease may increase the need for sexual relations. This may create conflict with the partner. For some, this increased need for sex is constant. If this sexual energy is expressed in inappropriate places or directed toward non-consenting people, medication may be required to reduce its intensity.
Others with the disease may find that their sexual energy and interest are reduced, due to depression. With treatment of depression, sexual interest often returns.
The changes in relationships and in people’s needs can be frustrating. A lack of understanding may cause people to find ways to meet their needs that may not be considered acceptable or appropriate.
Seeking companionship with a new partner: As the disease progresses, the person with Alzheimer’s may no longer recognize or remember her partner. She may seek closeness and physical intimacy with a new partner. Due to the sensitivity of this issue, those around her may try to prevent her from fulfilling her needs outside of the previously existing relationship.
Disinhibition: The disease process may cause some people to lose their inhibitions and behave in ways that others might consider inappropriate. This is because the usual mechanism to keep activities in check may no longer be working. For example, a woman may flirt with men other than her partner. This can be embarrassing for the partner. It can also be confusing and distressing for the person with Alzheimer’s, who may not understand why her behaviour is inappropriate.
Misinterpretation of behaviour as sexual: Sometimes people with Alzheimer’s will behave in ways that may be misinterpreted as sexual when they’re not. For example, a man may remove his pants in public to indicate that he has to go to the bathroom, but someone may view his action as sexual.
Meeting needs for physical intimacy: The changes Alzheimer's disease causes in a person's interest in sex may conflict with the partner's needs. Partners may feel guilty or not know how to respond. Also, as partners take on more of a caregiving role, the idea of physical intimacy may become less appealing.
Seeking companionship with someone new: Partners may have needs for physical intimacy that are not being met by the person with Alzheimer's, and may seek to meet their needs outside the relationship.
For health-care professionals
Balancing needs: Staff in long-term care facilities may know of situations where a person with Alzheimer's disease has sought companionship and intimacy with a new partner. Health-care professionals must try to determine if both parties are willing participants and have given consent to the new relationship. They must also find ways to help families adjust to the change.
The needs for companionship and physical intimacy of people with Alzheimer's and their partners should be met, wherever possible, and treated with respect and dignity.
When the physical intimacy needs of the people in the relationship differ, open and honest discussion and creative thinking may help find ways to meet each person's needs.
As the disease progresses, people with Alzheimer's may no longer recognize their partners. The partners will need a lot of support and understanding. If the person with Alzheimer's disease chooses a new partner, it is important that both participants agree to the new relationship.
Family members and long-term care staff need to think about their own feelings and attitudes toward sexuality and later-life relationships. Also, learning about a person's patterns of sexual expression and intimacy over a lifetime may give insight into current behaviour.
Staff in long-term care facilities may also need to find ways to provide privacy or to help partners deal with changes in their relationships. This can include:
- Finding enjoyable activities a partner can share with the person during visits
- Drawing attention away from a new relationship that might upset a partner
- Providing overnight private accommodation for couples wishing to be alone.
Some partners of people with Alzheimer's disease may want to meet their companionship and physical intimacy needs with someone else, especially if the person with dementia no longer recognizes them. If so, they will need support and understanding to work through their feelings and to find ways of meeting their needs that make them comfortable.
Relationships are complex at the best of times. Add to this the changes brought on by Alzheimer's disease and these are the dilemmas that partners and families face. Talking about intimacy and sexuality is not always easy. But it is a good starting point for resolving issues relating to companionship, intimacy and sexuality in Alzheimer's disease.
For more information, check out our brochure, Conversations About Intimacy and Sexuality.
2. A Thousand Tomorrows: Intimacy, Sexuality and Alzheimer's Disease [videotape]. Terra Nova Films, 1995.
3. Disability Online. Victoria, Australia.