Intimacy and Dementia

Intimacy is often unaffected by the development of very mild dementia in one partner. However, as dementia worsens, the challenges to intimacy are sometimes insurmountable. Paranoia, accusations, and aggressive demands may replace prior qualities of warmth, caring, humor, or playfulness. People with dementia often forget recent intercourse and demand sex too frequently for a frail partner, may mistake a partner for someone else, or may call a partner by a previous partner's name. In addition, people with dementia eventually forget to tend to personal hygiene matters, such as combing hair, changing clothes, brushing teeth, and bathing. When dementia reaches an advanced stage, interest in and eventually awareness of other people and the surrounding world are lost.

The partner who does not have dementia carries the burden of coping with these challenges. Physical intimacy is often the first casualty of the demanding work involved in caring for an increasingly dependent partner. A shift in roles from partner to caregiver also contributes to loss of desire or comfort with physical intimacy. So does discomfort with the physical or sexual aggression or the inappropriate sexual behaviors that a partner with dementia may display. Coping with these changes is especially difficult when the partner who does not have dementia misinterprets these behaviors as deliberate attempts at antagonism or embarrassment.

The loss of memory characteristic of dementia almost always means the end of shared experiences between partners. It is no surprise that intimacy sometimes withers and dies as a result. The partner of a person with dementia can mourn the loss of the intimate relationship but cannot mourn the loss of the partner himself, as would occur in a physical death, and therefore does not have support for such private grief and loss.

Just as there is no cure for dementia, there is no easy fix for the challenges to intimacy that dementia poses. But there are strategies for coping. Acknowledging the loss of the relationship as it was, which may include feelings of depression, anger, and regret, is ultimately necessary. So is a recognition that the partner with dementia is on a journey that he did not choose to take. What is left to the surviving partner are simpler forms of expression that can still elicit responses from the partner with dementia. Touch, including hand holding, kissing, hugging, and gentle massage, is often comforting and a form of caring and communication recognized through the screen of dementia. So is gentle hair-combing and brushing. People with dementia also often recognize familiar music, even when their ability to think clearly, talk, and recognize others is seriously impaired. Singing familiar songs together may temporarily restore a sense of couplehood. It is another way in which partners can share memories and experiences that might otherwise fade with progression of the disease.