A GUIDE FOR FAMILIES OF LONG-TERM CARE RESIDENTS Center on Aging Kansas State University 103 Leasure Hall Manhattan, KS 66506 Funded by the Kansas Department on Aging and the Kansas Department of Social and Rehabilitation Services through a title XIX contract and matching funds provided through Kansas State University 07/2008 Addressing Residents Sexual Needs in Long-Term Care Promoting Excellent Alternatives in Kansas Nursing Homes For more information go to www.ksu.edu/peak
A GUIDE FOR NURSING HOME RESIDENTS FAMILIES Notes Center on Aging Kansas State University 103 Leasure Hall Manhattan, KS 66506 In the Public Eye Recently two events have occurred that have brought to light the need to examine the sexuality of older adults living in congregate housing. Actress Julie Christie was nominated for an academy award when she portrayed a woman with Alzheimer s who forgets her husband and falls in love with another man in her long-term care home in the movie Away from Her. At about the same time this picture was released, former Supreme Court justice Sandra Day O Conner announced that her husband was living the real life version of this film. In a culture where sex is seldom talked about, especially among older people, it can be very difficult to begin a discussion on this topic. However, being old and/or living in long-term care does not automatically diminish sexual needs. This guide is intended to help you think more comfortably about this subject.
. 2 Notes Benefits of Sexuality Older adults benefit from sexuality in many ways. These may include: Enhanced quality of life Increased self-esteem A sense of belonging Decreased loneliness Decreased depression Healing Maintain overall fitness Raised heart and breathing rates Restored energy Expression of intimacy Exercise of muscle groups
3 12 Understanding Older Adult Sexuality and its Place in Long Term Care Sex is not just a biological drive for pleasure and reproduction that is reserved for young people. Sexuality helps people express their intimate needs by relating to each other. Sexuality is a basic human need that lasts throughout life and as such, sexual expression is a residents right. According to the Hebrew Home for the Aged Policy concerning resident sexual expression, this right should encompass the following elements: Accessibility to private spaces in long-term care for expressing sexuality Accessibility to professional counseling related to sexuality Non-judgmental attitude of staff Staff respect regardless of the nature of need Protection of residents and avoidance of exploitation Staff confidentiality related to residents sexual expression Conformity of staff responses to residents sexual expression Accessibility to legal materials with sexually explicit content like books, movies, videos, drawings, magazines, etc. Videos: Freedom of sexual expression: dementia and resident rights in long-term facilities. Produced by Dick Young Productions for the Hebrew Home for the Aged at Riverdale, available from Terra Nova Films. Contact number: 773-881-8491 or www.terranova.org. The video tastefully shows various sexual expressions, the effect of those expressions on the residents, their families and staff, and methods to allow freedom of sexual expression while maintaining a comfortable environment for other residents and staff. Backseat Bingo, available from Terra Nova Films. Contact number: 773-881-8491 or www.terranova.org. This animated documentary effectively dispels societal preconceptions about romance and older adults. It is a powerful reminder that love and desire remain an integral part of healthy aging and personal well-being. A Thousand Tomorrows: Intimacy, Sexuality and Alzheimer s, produced by Terra Nova Films. Contact number: 773-881-8491 or www.terranova.org. One of the major changes that Alzheimer's disease brings to a spousal relationship is how it affects intimacy and sexuality. Through candid interviews with spouse caregivers and the spouse who has Alzheimer's, this video explores a number of issues such as blurring of roles, changes in behavior, and changes in sexual attraction.
11 4 RECOMMENDED RESOURCES Expressions of Sexuality Websites: The website http://www.aoa.gov sponsored by the Administration on Aging has a comprehensive list of topics relevant to older adults, including sex in later life. Type sexuality into the search box to access articles on various aspects of this topic. The National Institute of Aging website is user-friendly and contains information which may be a good start for addressing the sexuality of older adults. www.niapublications.org/agepages/sexuality.asp Research Articles: Lindau, S.T., Schumm, P.L., Laumann, E.D., Levinson, W., Colm, O.A. & Waite, L.J. A. (2007). Study of sexuality and health among older adults in the United States. New England Journal of Medicine, 357 (8), 762-774. With another person Human touch/hugging Kissing Affection/compliments Romance Flirting Hearing loving words Enjoyment of another s company Maintaining one s appearance to remain attractive to others Sexual intercourse Self-contained sexual expressions Masturbation Reading/watching sexually explicit magazines, drawings, movies, etc. Low, L.P., May, H.L., Lee, D.T.F., Thompson, D.R., & Chau, J.P. (2005). Promoting awareness of sexuality of older people in residential care. Electronic Journal of Human Sexuality, 8. Retrieved from www.ejhs.org. Center for Practical Bioethics. "Considerations Regarding the Needs of Long-Term Care." 2006. 16 Apr 2008 <http://www.practicalbioethics.org/fileuploads/intimacy%20 Guidelines%20Updated.Aug%2007.pdf>. It is likely that some of these expressions were conducted privately before residents lived in a nursing home while others may not have occurred. Because of the congregate, communal living environment, very private behaviors may become a subject of discussions between staff and family members. Merck Manuals Online Medical Library http://www.merck.com/mmhe/index.html
5 10... Addressing your own feelings about a loved one s needs: Thinking about your loved one having any sexual needs may cause you to feel disgust, contempt, embarrassment, or shock When your loved one is involved with a new person, the possibility of shifting his/her interest to this new person may cause you to feel hurt, rejection, anger, or fear Families and staff should always consider the principle of doing good and avoiding harm. Sexuality is a basic human need and it does not disappear with aging. Just because a person is the recipient of long-term care does not mean that their sexuality ends or should end. Family can be instrumental in helping a loved one who is living in long-term care lead a fulfilling and happy life. Seeing your loved one in a new relationship may cause you to feel that he/she betrays the memory of his/her deceased spouse. You may experience hurt, anger, or confusion Threat to anticipated loss of financial prospects may cause you to feel fearful, anxious, or upset
9 6 Inappropriate Sexual Expressions Sexual talk (a person uses sexually explicit language that is out of touch with one s personality or makes another person uncomfortable) Sexual act (a person displays behaviors that should be in private or that are unwanted) Implied sexual act (reading sexually explicit materials in public or requesting unnecessary genital care) False sexual allegation/abuse (falsely accusing staff or resident of sexual abuse) Challenges that may be Associated With Sexuality of Long Term Care Residents: May cause or increase his/her anxiety due to the new relationship May be exploited by a new partner (sexual, financial, emotional) May have a fear of emotional pain due to the possible loss of a partner May encounter negative attitudes from staff and/or partner s family May take more of the family s time due to potential conflicts/misunderstandings or discussions May develop STDs and/or AIDS With another person If a loved one is sexually involved with another person, the following factors should be examined to be certain that he/she is not in a harmful situation: Does he/she understand the nature of the relationship? Is he/she aware of the partner s identity? Does he/she consent to sexual intimacy? Is he/she able to form a relationship? Is he/she able to avoid exploitation? Can he/she refuse unwanted advances? Is he/she aware of their personal level of comfort with sexual intimacy? If Yes is the answer to all these questions, you should assume that your family member has the capacity to understand all ramifications of a relationship. Otherwise, you and the staff should assess his/her specific circumstances to help him/her make a right decision and prevent potential harm.
7 8 Self contained sexual expressions Once regarded as a perversion and even a cause of mental disease, masturbation is now recognized as a normal sexual activity throughout life. About 97% of males and 80% of females have masturbated. Masturbation can be a healthy way of expressing one s sexual needs. The majority of residents are aware that masturbation needs to be conducted in private. A person with dementia may express sexual needs in public due to confusion and diminished awareness of his/her environment. Dementia seems to remove a social screen and the ability to judge what is appropriate and what is not. The disease may cause behaviors that would never occur had the person not had a memory problem. Another way to express one s sexuality could be watching or reading sexually explicit materials. If conducted in private this may be a healthy way of meeting a person s sexual needs. An increase in meaningful social activities and more interaction with staff members may replace a person s need for bodily engagement. It is important to review your family member s favorite activities and discuss with staff how to increase the activities that are meaningful to him/her. This is a good opportunity to be more engaged with your loved one to help him/her feel loved and experience being an important part of your family. Appropriate staff responses to inappropriate sexual expressions Staff members have a responsibility to stop unwanted sexual expression. However, their responses must always be guided by the principle of respecting residents as persons. This also implies supporting resident autonomy, quality of life and improvement of care. For example, staff should direct a person who displays a publicly inappropriate sexual expression such as masturbation to a private area to maintain his/her dignity. Family should expect that staff: Are respectful of each resident Help residents by providing them privacy Knock on residents door and do not enter their room without permission Provide Do Not Disturb signs Maintain confidentiality about residents sexual expressions Communicate with families to help resident meet his/her needs Don t minimize/ignore residents sexual needs Do not impose their moral values on residents Remain non-judgmental when dealing with resident sexual needs Direct inappropriate sexual expressions without compromising resident dignity Maintain resident autonomy