Alzheimer’s and Intimacy

At my recent National Adult Day Services Association teleconference involving directors of Adult Day Centers, one director asked for advice on handling the issue of intimacy at the center. There was a pause in the phone conversations.

I was reminded of the story of retired Supreme Court Justice Sandra Day O’Connor and how she so eloquently dealt with the disease that led to the death of her husband, John. An Arizona TV reported in late 2007, that during her husbands stay at a Phoenix Alzheimer’s facility, he had met and fell in love with a fellow resident. He no longer had remembered his wife. His happiness [with his new friend] was a relief to Justice O’Connor and their oldest son, Scott, shared in that same report that his dad was relaxed, happy, comfortable living at the facility and he wasn’t complaining.

Peter Reed, senior director of programs at the Alzheimer’s Association in Chicago, commented in the Arizona report that the frequency of Alzheimer’s patients forming new romantic relations is hard to estimate. "But the underlying causes of this are fairly common," he said. Though patients lose their cognitive abilities and experience mood changes, "one of the things that doesn’t go away is the need for relationships."

Everyone has a need for companionship and physical intimacy and people with Alzheimer’s and/or dementia are no different. They still continue to need caring, safe relationships and touch. Their behaviors will vary in ways of giving and receiving affection as the disease affects their capacity. Just as in the case with Justice Sandra Day O’Connor and her husband, the person with Alzheimer’s may no longer recognize their spouse and/or partner, and therefore find someone else with whom they are comfortable. Families need to find ways of support and understanding and it is important to ensure that all those involved agree to the new relationship.

Individuals with Alzheimer’s oftentimes lose inhibitions and make advances to others or undress or fondle themselves. Often the sexual advances are made because that individual mistakes another for their loved one. Sometimes, however, when a behavior appears sexual, such as a female lifting her skirt or a man unzipping his pants, it could indicate other possibilities, such as the need to go to the bathroom, or that the clothing is just uncomfortable. Managing inappropriate behaviors can be gently discouraged and the behaviors can be redirected to another activity. It is important to remember to remain focused on the individual, not the behavior, and also that the behavior may be caused by discomfort, boredom, or the need to toilet. Staff members in facilities can gently draw attention away from a new relationship that might upset a spouse or partner. Additionally, providing ways for the individual with Alzheimer’s disease to have forms of touch in everyday routine is recommended. Simple activities such as brushing their hair or holding and massaging hands can offer physical intimacy and nurturing comfort to the individual. Foremost in any exchange, however, is that the person with Alzheimer’s be treated with respect and dignity.

For caregivers, spouses, partners and staff members, an awareness of their own feelings and attitudes toward sexuality, sexual expression and later-life relationships may help them to support the individuals in their care. It often takes open and honest discussion and creative thinking in the care plan to meet each individual’s needs.

Though there was a pause in the phone conversations at the aforementioned teleconference, ideas and resolutions soon spawned from healthy and well-thought-out discussions of managing the individual with Alzheimer’s and intimacy. It takes a lot of support and understanding, and most of all, knowing, and always being aware, that the individual with Alzheimer’s needs to be needed and loved.

Dana Territo, Director of Services