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Rita Altman, R.N.

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From Spouse to Caregiver: Understanding Your Loved One's Intimacy Needs and Memory Loss

Posted: 09/17/2012 5:00 pm

Transitioning from the role of spouse or significant other to that of a caregiver for a person with memory loss can place a lot of stress and strain on a relationship. One particular aspect that is often affected, but seldom openly discussed, is how memory impairment affects the sexual expression of a person with Alzheimer's disease or related form of memory loss.

The need for intimacy, including sexual intimacy, is a basic human need, and persons with dementia have the same needs as everyone else. However, depending on the type or stage of memory loss, their needs might be expressed in a variety of different or even unusual ways, which may be difficult for a loved one to understand.

Some of the most common changes in sexual behavior are:

Decreased interest

Decreased interest in intimacy tends to occur during the early stages of memory loss, when the couple is struggling with accepting the diagnosis and the individual with memory loss might be experiencing depression. Couples should find other ways to enjoy intimate time together and make it a point to share quiet moments cuddling, giving each other back rubs, or dancing cheek-to-cheek. Research indicates that those with stronger relationships prior to the diagnosis tend to keep that connection and might even experience increased intimacy.

Disinhibited behavior, words and actions

Due to the changes in the frontal lobe of the brain, especially if an individual is experiencing Pick's disease, which is now more commonly referred to as fronto temporal dementia, he or she may lose their normal filters and inhibitions. They can become more impulsive and display an increased interest in sex as well as sexual exhibitionism. It's extremely important to understand that these types of behaviors are caused by the disease and not the person, and loved ones should try to remain non-judgmental, not take the behavior personally and establish a very consistent plan of care.

Confusing another person with their own loved one

Confusing another individual with their spouse or loved one is more prone to happen when a person with memory loss moves into a residential care community. Often this behavior occurs when another resident has a similar appearance or mannerisms as their spouse or loved one. This association, combined with their dementia, might cause them to believe that the person is their own loved one, and when the feelings are mutual, romantic relationships can occur.

For example, a resident who recently moved into a Sunrise Senior Living memory care neighborhood believed that another resident was his wife. They spent time together walking hand-in-hand and cuddling on the sofa. At first, his wife was upset and saddened by this situation, especially when she would come in to visit him and find him spending time with that resident. However, in time and with a lot of support, she accepted it because she realized that both he and the other resident gave each other a real sense of security and friendship.

An inability to express their other needs adequately

Sometimes actions that could appear to be a sexual behavior, such as tugging or pulling at or removing clothing, is actually the person's way of expressing another need, such as the need to use the bathroom. These types of actions or behaviors might even indicate boredom, or can be the person's way of expressing discomfort caused by a medical condition. Or, it simply might indicate that their clothing is not comfortable. Caregivers should keep in mind that that these types of actions are not always sexual in nature and must always investigate or look for the reason behind the behaviors.

Misinterpreting the actions of others as sexual advances

Individuals with memory loss may misconstrue the actions of a caregiver who is helping them with personal care needs such as bathing, showering or using the toilet as being sexual advances. That is why it's so important for caregivers to always give full, clear explanations prior to assisting the person as well as provide the right verbal and visual cues at all times. In addition, to maintain the dignity and self-esteem of the individual with memory loss, it is important to use empathy and validate the feelings of the person with memory loss. If a caregiver is ever concerned by their loved one's claims regarding the inappropriate actions or behaviors of others, it is important to immediately look into these claims and ensure they are receiving the appropriate care they need and deserve.

As a caregiver, it can be very challenging to cope with all of the changes in the relationship you and your loved one with memory loss are facing. Often, family members receive education and find comfort and suggestions for acceptance through caregiver support groups. Sunrise Senior Living offers support groups for family members and loved ones of residents as well as for those with loved ones with memory loss still living at home.

If you surround yourself with strong support networks and learn some coping strategies, not only will your loved one's dignity be maintained, but you will also be able to maintain a meaningful relationship with your loved one with memory loss.

For more by Rita Altman, R.N., click here.

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