Talking about intimacy and sexuality is never easy, from the time we are youngsters until we are very old and wise. For some, sex is enjoyable, for others it is embarrassing and for others still it is frightening. Nevertheless, sex is part of our lives, and when combined with Alzheimer’s Disease, it can problematic.

It is important to distinguish the differences between intimacy and sexuality to better address the challenges created by dementia. Intimacy is a "warm friendship," while sexuality is the use of words, gestures, movements or activities that attempt to display physical affection. Sexual activity in healthy relationships helps people to stay in good physical condition and helps to reduce physical and psychological stress.

Dementia’s Impact on Sexual Relationships

Even the most confused individual affected by dementia is still a sexual being. Dementia does not mean just memory loss as the common perception. It is a form of brain damage that can affect many different aspects of consciousness, motor skills and executive function, in addition to memory. With respect to sexual behavior, your loving partner may no longer remember how to arouse and satisfy you; may develop impotence from blood pressure medications; may become hypersexual or unable to understand the consequences of his/her actions in public; may lose social skills and charisma; may lose self-esteem; or may engage in impulsive, thoughtless or indifferent behavior.

Your loved one may engage in sexual behavior such as public masturbation, undressing or inappropriate sexual advances. You should not feel responsible for these behaviors, they are the result of your loved one’s brain disease and are not a reflection on you. Accusations of infidelity or hypersexuality may make you feel misunderstood and angry. Take time to reassess the situation. Is your loved one seeking reassurance or a boost in self-esteem? Is it simply a breakdown in judgement? Understanding the behaviors in these terms depersonalizes the impact.

Caregivers to loved ones with dementia, especially spouses, express many concerns.

• Guilt: for refusing a spouse’s sexual advances, for wanting a satisfying intimate relationship, for simply wanting a personal life, for wanting the burden to end.
• Frustration: with problems that arise during sex, with demented spouse’s inability to satisfy or appear interested in your sexual needs, with the inability to relate to your loved one due to his/her diminished mental capacity.
• Resentment: for having to suppress one’s own needs, over your loved ones accusations of infidelity, of your marriage vow to care "in sickness and in health."
• Embarrassment or Confusion: over changes in spouse’s behavior, by sexual advances by your spouse who no longer recall’s your name, by repeated advances even after sexual episodes early in the day, over emotional intimacy that has been lost.
• Fear: of acting selfishly, of attending to one’s own needs, of wounding pride if you refuse sexual advances, of raping your spouse because they really can’t give informed consent.

Effectively coping with these changes in your relationship are essential. Start by doing things that reduce stress and enhance your self-esteem. Keeping a journal can help you to release your pent up feelings. Most importantly, develop a support system of peers who you can comfortably share your feeling and experiences. This may seem awkward at first – however once you recognize that this is an issue, you can begin to grow from it. Many Alzheimer’s support groups have a mix of children caring for aging parents and spouses caring for their partner. Seek out individuals who are "most like you" to share a cup of coffee, ask the facilitator to raise the issue cautiously, suggest a guest speaker, or consult with a religious advisor or therapist.

Remember, that as a caregiver, you are not required to devote every ounce of energy to your loved one. It is essential to maintain your balance and minimize your stress level. It is OK to get angry sometimes (but not to get violent). Your emotions are natural, but the challenge is to address the in a healthy manner and grow from the experience.

Rediscovering Loving Relationships

A couple’s role and intimacy will undergo change (all relationships do over time). Even with the onset of dementia, there are still facets of your relationship that you can nurture. However strained and limited, you can still focus on these positive aspects of a relationship:

• singing and music
• reviewing photo albums
• talking about the past
• taking walks or rides
• visiting with animals or children
• engaging in simple projects such as gardening or painting
• assisting with personal care such as shaving, manicures or hair-setting
• exercising and dancing

However you cope with the changes in your loving relationship, you may be able to find additional emotional support and relationships in friends and family, children, pets, and coworkers/volunteers.

The Power of Touch

All individuals, regardless of age or abilities, have the need for touch and love and the desire for companionship. Touch is a human need and personalizes caregiving. People respond to touch depending upon their upbringing and self-image. A touch can convey compassion, not just sexual interest. It can convey reassurance (as a gentle stroking of the forearm), safety (as an arm around the shoulder) or relaxation (as a shoulder massage) among other feelings.

So often we rely on the "miracles of modern medicine" and technological solutions to the stresses of aging and physical illness (and even spiritual/emotional losses). Most religions have traditions of the healing and curative powers of touch. These traditions can be interpreted as myth or fact. Yet even modern science recognizes the importance of human interaction and physical contact. Touching or massage can promote physiological responses such as decreased nervous tension, decreased muscle contractions, increased circulation, and decreased heart rate and blood pressure.

Ten years ago as I watched a good friend of mine die of AIDS. As David’s disease progressed he suffered from terribly disfiguring Kaposi’s sarcoma. People avoided him on the street and averted their eyes. In the days before he died, I made a conscious effort to face him as I spoke and rest my hand on his knee or shoulder when we sat together. At times this was not easy for me. I did not – could not – cure his disease. But I know that I made a difference in his frame of mind, especially given his own perception of himself as "untouchable."

When I volunteered as a Long-Term Care Ombudsman at a nursing home, I frequently found myself sitting and talking with residents. THEY reached out to touch me – grasping my arm (sometimes bone-crunching!), tapping my knee and even kissing my hand. People in residential settings are not solely "patients" – they need attention and affection more than ever before.

Caregivers have a great opportunity to enhance the well-being of their loved ones by being more conscious of the power that they hold in the fingertips. I have included a few additional examples:

• Encourage family members and guests to face their elder when talking to him/her. This is an essential skill for hearing-impaired or demented elderly.
• Gently massage some lightly scented lotion on your loved one’s hands and feet. Yeah, old people’s feet get gnarly, because/so they don’t get touched often. Have a podiatrist take care of nail clipping and necessary medical procedures.
• Whenever you sit or stand with your loved one, retain physical contact by holding his/her hand or arm. This also can help to orient a demented or sight-impaired person.
• Avoid signs and actions that show your discomfort or repulsion to your loved one’s ailment(s). People are very conscious of the way that other people perceive them and take on negative frames of mind.

How Are Others Coping?

Additional Reading

  - Sexuality and the Alzheimer’s Patient, E.L. Ballard and C. Poer, Duke Family Support Program, Duke University Medical Center, 1993 (available from Duke $10.00 http://www.medicine.mc.duke.edu/adrc/papers.htm )

  - He Used to Be Somebody by Beverly Bigtree Murphy
  - Caregiving: The Spiritual Journey of Love, Loss and Renewal by Beth Witrogen McLeod
  - The 36-Hour Day: A Family Guide to Caring for People With Alzheimer's Disease by Nancy Mace

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  - Overcoming Negative Emotions
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  - Family Issues

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