Alzheimer's Disease Education and Referral Center

Intimacy, Sexuality, and Alzheimer's Disease: A Resource List

Alzheimer’s disease may cause changes in intimacy and sexual behavior, ranging from loss of interest in sex to overly sexual behavior. These changes can be challenging for caregivers. Spouses and partners often must adjust their attitudes and actions to maintain a sense of intimacy. The resources on this list can help both family and professional caregivers better understand and respond to various sexual behaviors in people with dementia. Some of the resources focus on intimacy and/or sexuality; others discuss caregiving generally, with chapters or sections on the topic.

Some of the resources listed below are free; others must be purchased. To buy an item, please contact the organization listed in the "available from" section to confirm current price and payment information. Some items may also be sold by retail and online booksellers.

The items in this resource list are organized alphabetically in two categories:

Other ADEAR Center resource lists include:

For Family Caregivers

Help for Caregivers (PDF, 62K) (Ayuda para cuidadores de personas con demencia) (PDF, 70K) (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 (PDF, 62K).

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/publication/caring-person-alzheimers-disease.

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) (PDF, 65K) (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 (PDF, 383K) (English) and www.alz.org/national/documents/sp_topicsheet_sexualidad.pdf (PDF, 65K) (Spanish).

Sexuality and Dementia: Coping with Changes in Your Intimate Relationship (2001)

This publication discusses how couples can cope with the emotional and physical changes in their relationship brought on by dementia. It describes the impact of a lost sexual relationship and the ways that physical intimacy can help both the person with dementia and his or her caregiver cope with loss and agitation. Sexually inappropriate behaviors are also discussed.

Available from the Family Caregiver Alliance. Call (415) 434-3388 or e-mail info@caregiver.org. Free online access at www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=782.

Sexuality and the Alzheimer’s Patient (1993, 64 pages)

This guide from the Joseph and Kathleen Bryan Alzheimer’s Disease Research Center discusses issues of sexuality and intimacy for people with Alzheimer’s and their caregivers. Among the topics discussed are the need for affection and self-esteem, effects of the disease on marital intimacy, how to respond to inappropriate sexual behaviors, and sexual needs and expression. Other topics include the effects of medications on sexual function, coping strategies for the spouse caregiver, and managing sexual behaviors in the nursing home.

Available from the Duke Family Support Program. Call (919) 660-7510 or e-mail lpg@geri.duke.edu. $10.

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/health/publication/sexuality-later-life (English) and www.nia.nih.gov/espanol/publicaciones/la-sexualidad-en-la-edad-avanzada (Spanish).

For Professional Caregivers

Intimacy, Sexuality and Sexual Behaviour in Dementia: How to Develop Practice Guidelines and Policy for Long-Term Care Facilities (2002, 25 pages)

This guide advises facility managers on developing an effective policy on sexuality and dementia that balances residents’ rights to sexual expression with an organization’s mission and goals. It reviews obstacles to consistent, fair practices, including staff members’ perceptions of and attitudes toward the sexuality of elderly residents with dementia. The guide includes action steps facilities can take to develop a policy and a list of facilities to contact for sample policies, resources, and facts and myths about sexuality and older adults.

Available from the R. Samuel McLaughlin Centre for Research and Education in Aging and Health, Hamilton, Ontario. Call (905) 521-2100 or e-mail whitem@mcmaster.ca.

Freedom of Sexual Expression: Dementia and Resident Rights in Long-Term Care Facilities (2002, VHS or DVD and booklet)

This 16-minute video looks at sexuality and intimacy in long-term care settings. It tastefully shows sexual expressions and describes methods for allowing sexual expression while maintaining a comfortable environment for residents and staff. The video also offers strategies for dealing with inappropriate sexual behaviors, as well as sample policies and procedures regarding residents’ rights in the areas of sexual expression and physical protection.

Available from Terra Nova Films, Inc. Call (800) 779-8491 or e-mail tnf@terranova.org. PRICE: $139; $50 rental fee.

More Than a Thousand Tomorrows (2003, DVD)

This 22-minute follow-up to “A Thousand Tomorrows” further explores the challenges that Alzheimer’s disease can bring to intimacy and sexuality in a spousal relationship. The video revisits Everett and Betty Jordan, looking at the changes Alzheimer’s has caused in their intimate relationship. It also discusses such issues as making the adjustment from intimate partner to caregiver and dealing with frustration over lack of sexual desire.

Available from Terra Nova Films, Inc. Call (800) 779-8491 or e-mail tnf@terranova.org. PRICE: $179; $55 rental fee.

Physical Intimacy: The Person with Alzheimer’s Disease (2008, DVD)

Dr. Peter V. Rabins of the University of Maryland School of Medicine and nursing staff discuss issues related to physical intimacy and patients with Alzheimer’s disease. They discuss patients’ needs for positive intimacy, when intimacy is inappropriate, and actions to take in selected situations. Topics include masturbation, inappropriate touching of residents and staff, and the need for family involvement to develop solutions.

Available from the University of Maryland School of Medicine Video Press. Call (800) 328-7450 or e-mail videopressmail@som.umaryland.edu. PRICE: $150; $75 rental fee.

Supporting the Caregiver in Dementia: A Guide for Health Care Professionals (2006, 312 pages)

This guide for mental health professionals explores caregiving in dementia, discussing the latest research developments and sharing tips for clinical practice. Part III examines caregiving from an interpersonal perspective. One article in this section, “Caregiving and the Sexual Relationship in Dementia,” by Naomi D. Nelson, addresses the issue of sexuality and intimacy by people with Alzheimer’s disease and their caregivers.

Available from the Johns Hopkins University Press. Call (410) 516-6930. PRICE: $57 (hardcover).

A Thousand Tomorrows (1995, DVD)

In this 30-minute video, three married couples discuss their relationships and problems with intimacy related to Alzheimer’s disease. They describe different issues, including hypersexuality, a decline in intimacy, a strengthened relationship, and what happens when a partner no longer recognizes his or her spouse.

Available from Terra Nova Films, Inc. Call (800) 779-8491 or e-mail tnf@terranova.org. PRICE: $189; $55 rental fee.

Articles

Alagiakrishnan, K., et al. Sexually inappropriate behaviour in demented elderly people. Postgraduate Medical Journal. 2005 July;81(957):463-6.

Alkhalil, C., et al. Treatment of sexual disinhibition in dementia: Case reports and review of the literature. American Journal of Therapeutics. 2004;11(3):231-5.

Black, B., et al. Inappropriate sexual behaviors in dementia. Journal of Geriatric Psychiatry and Neurology. 2005;18(3):155-62.

De Medeiros, K., et al. Improper sexual behaviors in elders with dementia living in residential care. Dementia and Geriatric Cognitive Disorders. 2008;26(4):370-7.

Hajjar, R.R., et al. Sexuality in the nursing home: part 1: Attitudes and barriers to sexual expression. Journal of the American Medical Directors Association. 2003;4(3):152-6.

Harris, P.B. Intimacy, sexuality, and early-stage dementia: The changing marital relationship. Alzheimer’s Care Today. 2009 April/June;10(2):63-77.

Kamel, H.K., and Hajjar, R.R. Sexuality in the nursing home, part 2: Managing abnormal behavior—legal and ethical issues. Journal of the American Medical Directors Association. 2003;4(4):203-6.

Kuppuswamy, M., et al. Sexuality and intimacy between individuals with Alzheimer’s disease and their partners: Caregivers describe their experiences. Clinical Gerontologist. 2007;30(3):75-81.

Loboprabhu, S., et al. Spouses of patients with dementia: How do they stay together “till death do us part?” Journal of Gerontological Social Work. 2005;44(3/4):161-74.

Loue, S. Intimacy and institutionalized cognitive impaired elderly. Care Management Journal. 2005 Winter;6(4):185-90.

Ozkan, B., et al. Phamacotherapy for inapproprirate sexual behaviors in dementia: A systematic review of literature. American Journal of Alzheimer’s Disease & Other Dementias. 2008;23(4):344-54.

Simonelli, C., et al. The influence of caregiver burden on sexual intimacy and marital satisfaction in couples with an Alzheimer’s spouse. International Journal of Clinical Practice. 2008;62(1):47-52.

Srinivasan, S., and Weinberg, A.D. Pharmacologic treatment of sexual inappropriateness in long-term care residents with dementia. Annals of Long-Term Care. 2006 Oct. 14(10):20-8.

Tabak, N., and Shemesh-Kigli, R. Sexuality and Alzheimer’s disease: Can the two go together? Nursing Forum. 2006;41(4):158-66.

Ward, R., et al. Kiss is still a kiss?: The construction of sexuality in dementia care. Dementia. 2005;4(1):49-72.

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