Dear Ginger:

I read the letter from the woman whose husband has Parkinson's and could relate somewhat. My wife is in the early stage of dementia - the doctors have not yet said it is Alzheimer's but it probably is - and I know we are headed down a road that has no return trip. I still find my wife sexually attractive, though I have to say, when she is in "la-la" land that is not a turn on for me. On her good days we still enjoy a range of sexual activities, and we often reminisce about the "old days." My question is, when she no longer remembers who I am, should I still approach her for sex?

- Ernest

Dear Ernest:

I think you are writing a letter that could be written by millions of spouses—and probably also by millions more people living with Alzheimer’s Disease (AD). Unfortunately we are experiencing a world-wide surge in cases of AD, many occurring in people younger than in the past, like UT Coach Pat Summitt, and no cure is in sight.

There is no one way the disease progresses, but usually it is classified in terms of stages, with early stage being when there are only a few gaps in memory and when a person can still carry out most usual activities and later stages being when memory is severely affected and a person may require total personal care. Sometimes these stages move slowly over time and sometimes extremely fast, and usually the focus of the health care team is on the person with the AD, while the needs of the spouse are often overlooked.

There have not been many studies published in medical literature studying the topic of intimacy and dementia, a “quality of life” (as opposed to a “quantity of life”) issue, but in the studies which have been done, it is clear that changes in sexuality and intimacy play a big role for both the AD person and for the spouse or partner. It is also clear that the medical team can be very helpful, often just by addressing how things are going in this realm. Questions like, “how is this disease affecting your personal life?” while not sexually specific, can open the door to an opportunity for deeper discussion if wanted.

Since two people are affected by your question, I am going to try to address it from each of your points of view, although I cannot truly know your wife’s view without also hearing from her. You say that you still engage in intimate activities on occasion and these provide a means of remembering the past—good for you! If a couple has had a positive history of intimacy, they are likely to have good memories and these will probably stay in your wife’s memory even when she forgets what happened yesterday. I’m hoping that there are humorous times in those recollections and that you sometimes find yourself snuggling and laughing as you recall maybe your awkward early days as lovers or the times when your children walked in on you or the phone or doorbell rang.

I’m wondering if the two of you developed your own personal cues that let the other one know some loving time would be welcomed—most couples do so over time. One of the earliest things that may happen with an AD person is that he or she may lose the ability to give or receive those little clues or may misinterpret them or just completely ignore them. So, Ernest, you might ask her if she needs more direct indication from you and if she could also let you know directly if she is interested in being lovey. I think you also need to talk directly to her about what you have asked me—show her this magazine and tell her you wrote because you were unsure how to approach her. If it is a good day for her, she can probably tell you what she will want. On down the road you can remember for her even when she cannot remember this. Of course, the thing about dementia that is so challenging is that nothing is ever consistent—there may be times when she knows you and is very clear about her preferences and times when she has no idea who you are and may even forget your name in the midst of lovemaking. Some spouses say they worry that if their mate with AD cannot be considered competent to consent, then they may be committing rape if they approach the AD person for sexual activity. If this happens for you, you may choose to back off from the event and speak with someone, like a counselor, who can help you sort out your actions.

Please know that you are not alone, Ernest. Almost every community has support groups for persons with AD and for their spouses. Join one and talk openly—you will find lots of others with similar concerns and also a place to try out solutions. I have included a list of information, including how to access support groups.

Help for Caregivers (Ayuda para cuidadores de personas con demencia) (2006, 25 pages)

The third section of this booklet for caregivers of people with Alzheimer’s disease addresses challenging situations, including sexual relationships and inappropriate sexual behavior. Tips for dealing with each situation are provided. The brochure is available online in English and Spanish; print copies are available in English, Spanish, Arabic, Russian, Japanese, Hebrew, Chinese, Danish, Hindi, and Serbian.

Available from Alzheimer’s Disease International. E-mail: info@alz.co.uk. Free online access at www.alz.co.uk/adi/pdf/helpforcaregivers.pdf.

Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide from the National Institute on Aging (2009, 148 pages)

This guide from the National Institute on Aging provides clear, easy-to-read information and advice to help caregivers of people with Alzheimer’s disease cope with the many challenges they face. One section of the guide explains how to deal with common behavioral issues, including loss of intimacy and sexually inappropriate behavior. Other aspects of caregiving discussed include everyday activities, home safety, getting help, and choosing a full-time care facility. Available from the Alzheimer’s Disease Education and Referral (ADEAR) Center. Call (800) 438- 4380 or e-mail adear@nia.nih.gov. Free print and free online access at www.nia.nih.gov/alzheimers/Publications/CaringAD.

Dementia: Sexuality and Intimacy (2008)

This fact sheet from the consumer health website of the government of Victoria, Australia, explains that people with dementia continue to need loving, safe relationships, even when the disease changes how they show intimacy and sexuality. It explains what partners can expect in terms of increases or decreases in sexual interest and demands, and advises them on how to manage inappropriate sexual behaviors. Available from Better Health Channel, Melbourne, Australia. Free online access at www.betterhealth.vic.gov.au.

Sex and Dementia (2008, 6 pages)

This fact sheet describes how dementia can affect the sexual feelings, needs, and desires of people with dementia and their partners. It explains how sexual behavior can change in a person with dementia and how partners can cope with changes and their own emotions and frustration. Also covered are sex in residential care settings, capacity to consent to sexual relations, and what to do when abuse is suspected. Available from the Alzheimer’s Society, London E1W 1JX England. E-mail enquiries@alzheimers.org.uk. Free online access at www.alzheimers.org.uk/factsheet/514.

Sexuality (Sexualidad) (2004, English and 2008, Spanish; 2 pages)

This fact sheet explains how Alzheimer’s disease can change a person’s sexual behavior and how caregivers can deal with those changes. It lists possible reasons for behaviors such as inappropriate undressing, sexual displays, aggressive advances, and reduced sexual desire. It suggests ways to respond to these behaviors and offers advice for partners about adjusting to changes in the sexual relationship.

Available from the Alzheimer’s Association. Call (800) 272-3900 or e-mail info@alz.org. Free print copy from local chapters and free online access at www.alz.org/national/documents/topicsheet_sexuality.pdf (English) and www.alz.org/national/documents/sp_topicsheet_sexualidad.pdf (Spanish).

Sexuality in Later Life (La sexualidad en la edad avanzada) (2009, 12 pages)

This fact sheet describes the physical changes that occur with normal aging and reviews some causes of sexual problems, including dementia. It also discusses the importance of safe sex, emotional factors and sexuality, and ways to keep an active sex life in later life.

Available from the National Institute on Aging Information Center. Call (800) 222-2225/ (800) 222-4225 (TTY) or e-mail niaic@nia.nih.gov. Free print and online access at www.nia.nih.gov/HealthInformation/Publications/sexuality.htm (English) and www.nia.nih.gov/Espanol/Publicaciones/Sexualidad (Spanish).