Intimacy, Sexuality and Dementia
by Marysue Moses, Ebenezer Dimensions Program Coordinator
Physical intimacy and sexual expression are complicated issues in dementia care.
These issues are probably the ones least talked about by care partners, but they can cause great tension and be quite emotionally painful as dementia progresses.
How these issues manifest depends on many factors and is very individual to each person with dementia and their care partner, influenced by the type of dementia, the personalities involved, previous relationship and medical conditions.
For example…
A care partner may no longer wish to engage in sexual activity, but the person with dementia may still be interested and/or may become more frequently or easily aroused. This seems to be most common with female caregivers and male partners. Some women care partners describe “feeling like I’m his mother” and consequently are not comfortable continuing an active sex life.
Or…the person with the disease may lose interest or ability entirely while the care partner may still be interested. It is common for the brain changes of dementia to result in the person with dementia being less able to express feelings of love physically. The person may forget the sequence of steps involved in sexual expression.
A major task of the spouse or partner who is well may be to set new, more realistic expectations of the person with dementia and of the relationship.
However, many caregivers and their partners feel comforted by continuing their sexual relationship for some time. This is often an activity where a person with dementia can feel successful and like an equal partner.
Hypersexuality is more common in some forms of dementia than others, notably Frontotemporal dementia. It seems to be more common in men than women.
Disinhibited behaviors can occur from changes in the brain or from misunderstanding a situation. For example…
When Jack moved to a memory care until, his wife was mortified to learn that he propositioned young nursing assistants. He was often found masturbating as he sat in the common area. When she visited, his wife would scold and lecture him, but his behaviors continued. Most of these propositions occurred when Jack was being helped with personal care. Staff realized that Jack simply did not understand why young women were touching his genitals. Staff began asking him to clean his own genitals, instead of doing it for him. Staff was trained to respond to any overtures kindly but firmly. Jack accepted their rejections with good humor. They learned to identify the signs that Jack was getting ready to masturbate and would move him to a private room. While the behaviors did not go away completely, they were managed with respect.
Strategies when Physical Intimacy is Difficult with your Partner:
Debby and Paul had been together for 25 years when Paul developed dementia. They had always had a very satisfying sex life. Debby began to feel more uncomfortable about sex as Paul was becoming more confused. Sometimes she felt like she was in a mothering role to Paul, and sometimes he was confused about who she was. When she tried to refuse his advances, he felt rejected and sometimes became angry. She began sleeping in another room, telling him that she slept better in her own room. To help them with this transition, she would tuck Paul in each night, wait until he went to sleep, and then go to sleep in her own bedroom.
If you want physical intimacy longer than your partner with dementia, it is important to pay attention to your partner’s emotional reactions. There may come a time when your partner does not understand what is happening and may feel violated.
These issues are probably the ones least talked about by care partners, but they can cause great tension and be quite emotionally painful as dementia progresses.
How these issues manifest depends on many factors and is very individual to each person with dementia and their care partner, influenced by the type of dementia, the personalities involved, previous relationship and medical conditions.
For example…
A care partner may no longer wish to engage in sexual activity, but the person with dementia may still be interested and/or may become more frequently or easily aroused. This seems to be most common with female caregivers and male partners. Some women care partners describe “feeling like I’m his mother” and consequently are not comfortable continuing an active sex life.
Or…the person with the disease may lose interest or ability entirely while the care partner may still be interested. It is common for the brain changes of dementia to result in the person with dementia being less able to express feelings of love physically. The person may forget the sequence of steps involved in sexual expression.
A major task of the spouse or partner who is well may be to set new, more realistic expectations of the person with dementia and of the relationship.
However, many caregivers and their partners feel comforted by continuing their sexual relationship for some time. This is often an activity where a person with dementia can feel successful and like an equal partner.
Hypersexuality is more common in some forms of dementia than others, notably Frontotemporal dementia. It seems to be more common in men than women.
Disinhibited behaviors can occur from changes in the brain or from misunderstanding a situation. For example…
When Jack moved to a memory care until, his wife was mortified to learn that he propositioned young nursing assistants. He was often found masturbating as he sat in the common area. When she visited, his wife would scold and lecture him, but his behaviors continued. Most of these propositions occurred when Jack was being helped with personal care. Staff realized that Jack simply did not understand why young women were touching his genitals. Staff began asking him to clean his own genitals, instead of doing it for him. Staff was trained to respond to any overtures kindly but firmly. Jack accepted their rejections with good humor. They learned to identify the signs that Jack was getting ready to masturbate and would move him to a private room. While the behaviors did not go away completely, they were managed with respect.
Strategies when Physical Intimacy is Difficult with your Partner:
- Find someone to talk to about this issue – it could be a friend, counselor, physician, religious mentor, family member, or caregiver support group. Sharing your feelings about it may be helpful, even if there is no clear fix for the situation. You may have intense feelings of grief and loss that need to be acknowledged.
- If your partner wants to continue to be physical intimate longer than you do, try to find other ways of being intimate. (some examples might be showering together, cuddling, holding hands, dancing, or other physical demonstrations of affection that do not necessarily lead to or set up an expectation of sexual intercourse.) Some caregivers decide to sleep in a different room as a way to address this issue:
Debby and Paul had been together for 25 years when Paul developed dementia. They had always had a very satisfying sex life. Debby began to feel more uncomfortable about sex as Paul was becoming more confused. Sometimes she felt like she was in a mothering role to Paul, and sometimes he was confused about who she was. When she tried to refuse his advances, he felt rejected and sometimes became angry. She began sleeping in another room, telling him that she slept better in her own room. To help them with this transition, she would tuck Paul in each night, wait until he went to sleep, and then go to sleep in her own bedroom.
If you want physical intimacy longer than your partner with dementia, it is important to pay attention to your partner’s emotional reactions. There may come a time when your partner does not understand what is happening and may feel violated.
- Praise and encourage behavioral expressions that are acceptable to you. (“How about my hug today?”)
- Ignore annoying behaviors.
- Remain calm. Don’t feed unwanted behavior by losing control.
- Do not scold, argue with or try to shame the person. Try distracting.
- Seek medical help for aggressive or violent behavior.
