Welcome to the educational program Early Stages: Intimacy and Sexuality. This program will present a brief overview of the various stages and changes related to Alzheimer’s disease and then discuss intimacy and sexual issues as relationships change during the early stages of the illness. The program will focus on sexuality issues of individuals living at home and will not address sexuality in care facilities or in the later stages of the illness.
This is Lesson 19 of The Alzheimer’s Caregiver. You may view the topics in order as presented, or click on any topic listed in the main menu to be taken to that section. We hope that you enjoy this program and find it useful in helping both yourself and those you care for. There are no easy answers when it comes to the care of another, as every situation and person is different. In addition, every caregiver comes with different experiences, skills, and attitudes about caregiving. Our hope is to offer you useful information and guidelines for caring for someone with dementia, but these guidelines will need to be adjusted to suit your own individual needs. Remember that your life experiences, your compassion and your inventiveness will go a long way toward enabling you to provide quality care.
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Alzheimer’s disease is a type of dementia characterized by a progressive loss of cognitive, or mental functioning. It commonly occurs in the later years of life, though its cause is still unclear.
Alzheimer’s disease causes damage and eventual death to nerve pathways and cells. These losses prevent the brain from being able to function normally. This includes changes in the brain’s chemistry and structure, and the loss of the brain’s ability to process information.
Alzheimer’s disease also causes damage to brain cells, which eventually die. These cells are important because they process and store information and generate ideas. The brain pathways that send messages about seeing and hearing, movement, emotions, and thoughts are also eventually lost.
In addition, Alzheimer’s often first affects the cells in the hippocampus, a center in the interior of the brain that processes and stores all new information. This is why in Alzheimer’s disease, recent memory is affected early on.
These losses not only affect the brain, but affect a person’s behavior, personality and their overall ability to function properly. For example, activities of daily living such as eating, bathing and dressing become too difficult for the person to perform without the assistance of a caregiver.
Changes in Behavior
Let’s look at some of the ways that Alzheimer’s causes changes in behavior and personality. One way is, an affected individual may become suspicious and mistrusting of other people, or seem overly concerned and secretive about money and other valuables.
This paranoia and suspiciousness can develop because of misperceptions, causing the person to be secretive and uncooperative, even hostile toward persons trying to help.
Individuals may also wander as though they are looking for something, or appear depressed or uninterested in their environment.
What previously may have been considered minor concerns may now cause great irritation or even anger and aggression. Wandering, pacing, restlessness, and catastrophic or explosive reactions are commonly seen in people with Alzheimer’s disease and may reflect different manifestations of agitation. This verbal and sometimes physical aggression are common reasons for placement in a care facility.
Apathy or lack of motivation is a symptom of the disease and may be the initial clue that something is wrong. A successful businessman, for example, may lose his job for lack of initiative or low productivity. Apathy is often confused with depression and can contribute to immobility, malnourishment, poor dental hygiene and many other debilitating situations.
Challenging behaviors may worsen and cause excessive stress and anxiety for the caregivers, interrupting their sleep and affecting their health. Tension can escalate in these circumstances and may lead to care recipient abuse.
People with Alzheimer’s can also suffer from misperceptions, including delusions, illusions and hallucinations.
Delusions are strongly held ideas or beliefs that have no basis in reality, while illusions are misperceptions or misinterpretations of real objects in the environment. An example of an illusion is mistaking a hat rack for a person or mistaking a shadow for a pet dog.
Hallucinations are perceptions of things that are not there, such as hearing music when there is none, or seeing ants in the bed when there are none. These false perceptions are related to chemical and physical changes in the brain that alter the ability to accurately process information in the environment.
Changes in Abilities
Those with Alzheimer’s disease also experience changes in functional abilities. They may increasingly get lost, lose things, forget to pay bills, neglect hygiene, dress and groom poorly, and have difficulty communicating their needs.
These functional losses can be categorized as amnesia or losses in memory function; aphasia or difficulty speaking and understanding language; agnosia, problems recognizing people, objects and places; and apraxia, a loss of the ability to perform every day activities such as dressing, brushing teeth or combing hair.
Stages of Alzheimer’s Disease
An important aspect of Alzheimer’s disease is that these changes do not appear all at once. Alzheimer’s is a progressive illness that can last 8 to 20 years, with changes occurring gradually over months and years. Because it is a progressive illness, changes, care issues and management planning, are often considered in terms of the “stages of the illness”. The most common classification of stages and the one that we will use, is simply using the terms: early, middle, late and end stage.
As we discuss the “stages” of Alzheimer’s disease and other forms of dementia, it is important to keep in mind that these are only general categories or phases that serve as guidelines in understanding and planning care. Our brains, our bodies and our personalities are very different and we will all manifest an illness, even a brain disease, differently.
Keeping that in mind, here is a general outline of behaviors and functions in the various stages of Alzheimer’s disease.
Stages of Alzheimer’s disease (Continued)
In the early stage of Alzheimer’s disease, the changes can be very subtle and attributed to aging. People begin to forget appointments, names, and places. They may lose valuable items and suspect others of stealing, so they may begin hiding things only to forget where they’ve been hidden. People may also become obsessed with certain persons, valuable items or events as an effort to maintain contact with or control of them. Individuals may be restless or depressed and apathetic. Sleep disturbances can occur in the early stages and worsen as the disease progresses. People often lose social graces, but because they may otherwise function well, these problems may be attributed to stress, illness or fatigue. However, once a diagnosis has been made, people often look back and see some behaviors or difficulties that were part of the disease process. In the early stage, affected individuals will have some awareness of the situation and may share their concerns with a spouse or adult child and ask questions about what it means for them and their family. It is best to treat these concerns with honesty.
In the middle stages, people will have difficulty with managing money, legal affairs, workplace duties, driving, and functioning in new environments. Home maintenance, housekeeping and cooking will become more challenging. In this stage, personality changes become evident. Difficult behaviors and sleep pattern changes may also become more common.
In the late stages, people will have increasing difficulty with activities of daily living, such as bathing, grooming, toileting, and mobility. They will show frustration, agitation, and have language difficulties. There is usually greater disturbance of sleep patterns, including nighttime wakening and sleeping during the day. In the end-stage of Alzheimer’s disease, people are no longer able to walk or recognize family members. They will lose weight, become incontinent and will need complete care. However, remarkably, many in this end stage of the disease will have moments of recognition and better understanding of language.
Sexuality and Intimacy
Case Study 1
Let’s look at a case study about Robert and Mary. They have 4 adult children and 6 grandchildren. They are very close and their sexual relationship has been an important part of their lives. Robert was diagnosed with Alzheimer’s disease 18 months ago. He is still living at home with his wife of 40 years. As his illness progressed, his requests for sexual intimacy increased, and Mary found herself dreading these encounters.
What are some of the possible factors at play in this situation?
- A) Robert has a medical condition that affects his sexual desires .
- B) Robert is losing his inhibitions about sex .
- C) Mary is too stressed and tired from caregiving .
- D) Age-related changes are affecting Mary’s sexual response .
- E) All of the above.
Choice A: “Robert has a medical condition that affects his sexual desires” is a possible answer.
Though most medical conditions can lower sexual drive, some can actually increase it. For example, Robert could have an infection that causes irritation of the bladder and urinary tract. This could trigger sexual arousal and thus, more frequent requests for sex.
Choice B: “Robert is losing his inhibitions about sex” is also a possibility.
Robert could be experiencing a decline in his inhibitions or his impulse control. Alzheimer’s disease destroys cells in the frontal lobe of the brain, which is the center for control of our impulses. This could affect when, where and how a person exhibits sexual interests, resulting in inappropriate sexual behavior or increased pursuit of sex.
Choice C: “Mary is too stressed and tired from caregiving” is another possibility.
Caregiving can be stressful and exhausting. Mary may be so stressed out and tired from all of her caregiving tasks that she is incapable of responding positively to Robert’s sexual advances.
The main thing to remember is that caregiver stress and fatigue can reduce sexual interest.
Choice D: “Age-related changes are affecting Mary’s sexual response” is also a possibility.
Mary may also be experiencing physical changes that cause painful sexual intercourse. As women age, the vaginal wall becomes thinner and vaginal lubrication declines. Men will also experience a reduction in erection and ejaculation capacity. The sexual response cycle consists of the arousal phase, excitement and orgasm, and then the refractory or recovery period. All of these phases can be affected to some extent by the aging process, though there is great variation in how individuals experience these changes. General health factors account for some of the individual differences, but the more sexually active someone is, the less will be the decline in sexual response. With some adjustments, it is possible to enjoy sexual intimacy into the older years.
Choice E: Because all of these answers are possible, choice E, “all of the above,” is the best choice.
Age Changes: Women
Let’s discuss some of the changes associated with aging in more detail. As women age, there is a reduction in their levels of estrogen and progesterone, the hormones responsible for female characteristics and pregnancy. This reduction results in a thinning of the vaginal wall and a decrease or delay in secretion of vaginal lubrication. The external tissues (the labia) respond less to stimulation and the vagina shortens and narrows. Depending on the woman’s childbearing experience, the cervix of the uterus may descend into the vagina, further shortening the vaginal space. All of these changes can cause considerable discomfort during intercourse, leading to an overall reduction in sexual desire and response.
Areas of the body that may have been responsive to stimulation, such as a woman’s breasts may not be as sensitive.
Age Changes: Men
In men, there is a decrease in testosterone levels. This may not directly inhibit sexual function. However, the degree of erection declines, orgasmic contractions are fewer and weaker, and ejaculation force and amount is reduced. The refractory period, or the length of time needed before erection is again possible, is extended to hours or even days.
Additionally, physical and mental health can affect a couple’s sex life. Poor health can reduce or physically interfere with sexual intimacy.
Social or cultural attitudes may also affect an older couple’s sex life. Many people see “sex” as inappropriate for older people, and assume that their sex lives ended with their child bearing years.
Though these changes are significant, they need not cause an end to sexual intimacy among older individuals.
Couples can build a romantic atmosphere with music, massage, fragrances, and can plan to have plenty of time to reach the necessary level of arousal. Elder individuals can discover new ways to stimulate each other. External aids can be used to increase stimulation or lubrication.
Medical conditions can have an effect on sexual function. Cardiovascular disease (such as hypertension, coronary artery disease, dysrhythmias, and congestive heart failure) contribute to sexual dysfunction in men by impairing vascular filling needed for an erection. Hypo and hyper thyroidism, multiple sclerosis and other neurologic disorders are also associated with sexual dysfunction. Chronic lung disease can shorten breath and reduce stamina. Joint stiffness and pain of arthritis interfere with the comfort of physical movement of intercourse.
Medical Conditions (Continued)
There are medications prescribed for medical conditions such as hypertension, diabetes, and depression that can contribute to or cause sexual dysfunction. These include beta blockers, diuretics, tranquilizers, antidepressants and hypoglycemics.
Some medical interventions such as mastectomy and colostomy can affect an individual’s body image and self perception as sexually attractive, thus affecting a person’s sexual approach and response.
These situations should be discussed with a health care professional for possible ways to alleviate the effect of medical treatments and medication.
Dementia and Sex (Part 1)
Issues of intimacy and sexuality are more complex when there is a dementia diagnosis. Throughout the illness, sexual needs continue for both the individuals with dementia and their partners. But as the individual’s symptoms worsen, the partner may grow uncomfortable about having sexual intercourse.
An additional concern for some partners is the fear that their loved one will exhibit inappropriate sexual behavior. In reality, inappropriate sexual behavior is uncommon.
There also may be altered feelings toward the demented individual because of changes in the nature of the relationship. Though spouse caregivers maintain love for their partner, their relationship may change to more of a parent-child relationship.
Dementia and Sex (Part 2)
People with dementia may make unrealistic sexual demands because of memory problems. They may not remember having intercourse an hour ago and repeat the request over and over. They also may lose the skills for successful love-making and confuse or forget the sequence of steps needed to satisfy a partner.
Spouse caregivers may feel put-off by sexual overtures by someone who no longer knows their name, and caregiver husbands may be concerned that their wife is no longer able to consent to intercourse.
Dementia and Sex (Part 3)
Other sexual behaviors that have been reported in people with a dementia diagnosis include undressing in public, inappropriate touching of private parts, masturbating (self stimulating) in public, and suggestive talk with inappropriate people.
Studies have shown that these inappropriate sexual behaviors are rare, but because they are disturbing to families, it is important to be aware of them and consider some ways of dealing with them if they happen.
It is important to remember that such inappropriate behaviors are due to the illness and not the “character” of the individual. Think in these terms, that your loved one with Alzheimer’s disease would be very embarrassed if they realized what they were saying and doing.
In Alzheimer’s disease, the frontal lobe of the brain, which controls our “executive functions,” such as impulses, judgment, reasoning, and decision-making abilities, gets damaged. The frontal lobe monitors our behavior and language to make them socially acceptable. People with poor executive function may use abusive or sexually explicit language, masturbate or disrobe in public, and touch people inappropriately.
Coping with Sexual Changes
The important thing is for caregivers and other family members to understand that the sexual changes are due to the illness. Understanding can give rise to solutions that fit your unique situation.
Click here to learn more about Sexuality and Alzheimer’s disease.
Case Study 2
Let’s look at some ways to manage sexual concerns. Mary’s husband, Robert, was diagnosed with Alzheimer’s disease almost two years ago. In church one Sunday morning, Robert began to fondle his genital area. Mary waited, hoping that he would stop. But he continued and became more excited.
Case Study 2 Answers:
What could Mary do to resolve the situation?
- A) Gently take his hand and leave the church
- B) Hand him a hymnal to hold
- C) Take his hand, squeeze it, and hold it
Choice A: “Gently take his hand and leave the church” is a possible solution.
Taking his hand, getting up, and leaving the church would prevent a potentially disruptive and embarrassing situation. Leaving during service may be slightly disruptive to the congregation, but people often leave meetings when there is a need, and it is generally accepted. If Robert’s behavior resolves, it may be possible to rejoin the service.
If there is concern about such situations occurring at public gatherings, it is helpful to select seats close to the aisle towards the rear of the room to minimize the disruption if a quick exit and entrance are needed.
Choice B: “Hand him a hymnal to hold” is another possible solution.
By giving Robert something to hold, Mary could distract him from what he was doing and occupy his hands. Trying this solution would be less disruptive than leaving and would be in keeping with the purpose of the service.
Choice C: “Take his hand, squeeze it, and hold it” is a good choice.
Mary could gently take his hand, squeeze it while giving him a smile, and hold it for a while. This would be a distraction from the inappropriate behavior and would also affirm her love for him.
The key factors in any of these interventions is to use discrete distraction, to refrain from scolding or showing disapproval and to normalize the behavior. In the last two solutions, Mary and Robert were able to remain in the church and enjoy the service. If one of these two solutions had not worked, Mary could have resorted to leaving the service. The important thing in each of the solutions is that Mary respected Robert’s dignity.
General Guidelines for Sexual Behavior in Alzheimer’s Disease
Here are some general guidelines to keep in mind about sexual behavior in Alzheimer’s disease. First, remember that sexual problems are relatively rare in dementia care. Second, it is important to understand that the disease causes the inappropriate sexual behavior. This will help remove the blame from the person. Third, approach the problem matter-of-factly rather than showing shock or anger or ridiculing the individual.
Strategies for Dealing with Inappropriate Behaviors
Here are some strategies for dealing with inappropriate behaviors.
A simple but sometimes effective strategy is to remind the individual that the behavior, such as undressing in the living room when you have guests, is not acceptable. If a person mistakes a female visitor for his wife and makes overtures to them, the wife can help orient him by saying something like, “Robert, I see you are having a conversation with our daughter, Julia. Julia’s husband, Fred, is coming over and they’ll stay for dinner with us. Isn’t that great?”
When inappropriately undressing, it is also important to find out what is the reason for the behavior. Check to see if clothing is uncomfortable, too tight, wet or soiled.
Taking their hand and leaving the room would also work in this situation. Remember to be reassuring and honor the person’s dignity. Showing caring and affection is beneficial, but be cautious with the affection so as not to encourage an unwanted sexual response.
Strategies for Dealing with Inappropriate Behaviors (Continued)
Redirecting inappropriate behavior is an important intervention in Alzheimer’s care. Because people with Alzheimer’s disease have short attention spans and limited memory, it is often effective to use redirection and distraction.
For example, when Mary placed the hymnal in Robert’s hands in church, his attention switched to the hymnal.
Try to redirect the person’s attention onto something positive and interesting.
As the disease progresses, caregivers will need to make adjustments to a changing relationship. As painful as this is to contemplate, anticipating the changes and trying new ways to find intimacy can be helpful. In the absence of sexual interest, use reminiscing, a pat, a hug and just holding one another. Excess sexual desire can be redirected to self -stimulation in the privacy of their bedroom.
As relationships change due to the disease, a spouse may be attracted to an outside relationship. Interest in new relationships is not uncommon, but cultural norms are evolving and still unclear about the expectations of spouses whose partner is severely demented. At this point, this is a matter of personal choice. There is no right or wrong. As long as the affected spouse is well cared for, the important thing is for the caregiver to not succumb to feelings of guilt. In many cases, outside relationships develop based primarily on companionship and mutual concerns between caregivers whose spouses are affected.
Edited by: Mindy Kim-Miller, MD, PhD (University of Chicago School of Medicine)
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