Intimacy and Sexuality: Resources for Dementia Caregivers
Alzheimer’s disease and other dementias may cause changes in intimacy and sexual behavior that can be challenging for caregivers. Spouses and partners often must adjust their attitudes and actions to maintain physical and emotional intimacy. The resources on this list can help family and professional caregivers better understand and respond to sexual behaviors in people with dementia.
Some resources on this list are free; others must be purchased. To buy an item, please contact the publisher to confirm price and payment information. Many items are also available from traditional and online booksellers.
The items on this resource list are organized alphabetically in two categories:
This short article discusses some of the more troubling sexual behaviors that can occur as Alzheimer’s disease progresses—for example, sexually aggressive fondling, disrobing, and masturbation. Tips for caregiver responses are provided.
Published by the Alzheimer’s Foundation of America. Phone: 1-866-232-8484. Email: email@example.com. Free online access.
Learn how Alzheimer’s disease can lead to changes in close relationships. This tip sheet offers advice for reassuring the person with Alzheimer’s and for helping caregivers address their own needs.
Published by the National Institute on Aging’s Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email: firstname.lastname@example.org. Free online access.
Changes in Sexuality and Intimacy (PDF, 57K) (2015, 2 p.)
This fact sheet explains how sexual feelings and behavior may change in a person at different stages of Alzheimer’s disease. It encourages caregivers to communicate with their partners and to take care of themselves while responding appropriately to the person’s behavior. Read a related Spanish tip sheet, Sexualidad (PDF, 65K).
Published by the Alzheimer’s Association. Phone: 1-800-272-3900. Email: email@example.com. Free online access in English and Spanish.
Dementia: Emotional Changes (2014)
This fact sheet describes ways in which people with dementia may experience emotional changes, including changes in their sexual feelings and behavior. Tips for caregivers explain how to handle changes such as a loss of interest in sex or increased sexual demands. The fact sheet also suggests nonsexual ways of expressing intimacy.
Available from Better Health Channel, Melbourne, Australia. Free online access.
This online article touches on issues of interest to lesbian, gay, bisexual, and transgender (LGBT) older adults and their caregivers. It discusses how to obtain long-term care and other services that are LGBT-friendly and what to do if you suspect an LGBT nursing home resident is mistreated.
Published by the Family Caregiver Alliance. Phone: 1-800-445-8106. Email: firstname.lastname@example.org. Free online access.
Sex and Dementia(2012, 15 pages)
This brochure explains that physical intimacy can continue to be a source of mutual support and pleasure for couples affected by dementia, and that there is no single “normal” way of handling sexual difficulties. It describes possible changes in sexuality and ways caregivers may respond to stay close while preserving safety and avoiding frustration and embarrassment. Also covered are sex in residential care settings, capacity to consent to sexual relations, and what to do when abuse is suspected.
Published by the Alzheimer’s Society, London. E-mail: email@example.com. Free online access.
Sexuality and Dementia (2014)
This online article presents quotes from caregivers explaining ways to cope with emotional and physical relationship changes brought on by dementia. It describes the impact of a lost sexual relationship and how caregivers can make adjustments in nonverbal intimacy as their partners’ interests shift. It also discusses talking with a physician or other professional to help caregivers who are struggling with these changes.
Published by the Family Caregiver Alliance. Phone: 1-800-445-8106. Email: firstname.lastname@example.org. Free online access.
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.
Building Respect for LGBT Older Adults (online learning module)
Developed by the U.S. Administration for Community Living, this tool for long-term care and other aging-services professionals is an introduction to LGBT elders. Many issues, from staff training to legal compliance, are discussed. Module 4, in particular, offers training in long-term care issues, including nursing home residents’ rights to receive visitors, to be free of abuse, and to have privacy.
Available from the National Resource Center on LGBT Aging. Phone: 1-212-741-2247. Email: email@example.com Free online access.
This video, originally produced by the Hebrew Home for the Aged in Riverdale, NY, 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.
Available from Terra Nova Films. Phone: 1-800-779-8491. Email: firstname.lastname@example.org. $169; $50 rental fee; on-demand pricing available.
Hebrew Home at Riverdale Sexual Expression Policy (revised 2013)
In 1995, the Hebrew Home at Riverdale, NY, authored the United States’ first sexual rights policy for older adults in healthcare settings. In 2013, this policy was updated and now covers much ground pertaining to Alzheimer’s and dementia, specifically in matters of sexuality and consent. The policy also spells out resident rights, as well as staff and organizational responsibilities. The guideline helps professionals assess consent to sexual activity.
Published by RiverSpring Health. Phone: 1-800-567-3646. Free online access.
More Than a Thousand Tomorrows (2003, 22-min. DVD)
This video explores the challenges that Alzheimer’s disease can bring to intimacy and sexuality in a spousal relationship. Everett and Betty Jordan look at the changes Alzheimer’s has caused in their intimate relationship. The video also portrays making the adjustment from intimate partner to caregiver and dealing with frustration over lack of sexual desire.
Available from Terra Nova Films. Phone: 1-800-779-8491. Email: email@example.com. $119; $55 rental fee.
Responding to Intimacy and Sexuality of Residents with Alzheimer’s Disease (PDF, 44K) (2006, 4 p.)
This article by dementia expert Daniel Kuhn provides a brief overview of sexual intimacy among nursing home residents. With an emphasis on resident rights, it touches on determining a resident’s level of competency and surrogate decision maker. It discusses the role of nursing home staff and management and what to do when family members object to a resident’s sexual activity.
Published by the Illinois Council on Long Term Care. Free online access.
Geriatric neuropsychiatrist Dr. Douglas Wornell provides practical solutions to sexual behavior challenges in people with dementia. Geared toward administrators and staff at long-term care facilities, the guide tackles issues such as the role of medication and overmedication; ways to handle inappropriate behaviors that respect the person with dementia, loved ones, and caregivers; and ways to minimize legal risk and potential for injury. Personal stories show how couples have dealt with relationship and sexual changes.
Published by Demos Health Publishing. Phone: 1-212-683-0072. $17.95.
Gerontologist Gayle Appel Doll, director of the Center on Aging at Kansas State University, addresses the question of how long-term care facilities can balance individual resident rights against the needs and concerns of the community as a whole. The author addresses sexual identity in elders, including those with dementia (in Chapter 5), and presents case studies to illustrate potential issues in long-term care settings. Best care practices for supporting resident sexuality are validated by research.
Published by Health Professions Press. Phone: 1-888-337-8808. $39.99.
A resident’s loss of inhibition may result in inappropriate verbal and physical advances, such as sexually explicit comments and touching or grabbing staff. In this DVD, Dr. Georgia Stevens, a specialist in disruptive behaviors and behavior management, leads an interactive discussion with nursing assistants at a long-term care facility. Staff members talk about their experiences and, with Dr. Steven’s guidance, identify ways to set boundaries and develop policies that protect staff.
Produced by MedSchool Maryland Productions; order through Createspace. Phone: 1-410-706-5497 or 1-866-356-2154. $150.
The Last Taboo: A Guide to Dementia, Sexuality, Intimacy and Sexual Behaviour in Care Homes (PDF, 631K) (2011, 56 p.)
This guide for managers and other employees of residential-care facilities uses detailed case studies to discuss how to handle new and ongoing relationships between residents, issues of consent, policy setting, and the importance of staff training. The legal and regulatory information is specific to the UK, but the rest of the guide is not. Includes a quiz and list of references.
Published by the International Longevity Centre-UK, London. Free online access.
Understanding Dementia Care and Sexuality in Residential Facilities (PDF, 397K) (2010, 31 p.)
Written in the context of person-centered care, this guide focuses on the rights of people with dementia who live in residential care. Although produced by an Australian nonprofit, most of the information is general enough to be helpful to long-term care managers and staff elsewhere. Realistic scenarios and thoughtful questions enliven this guide’s common-sense approach. Topics include consent and privacy, family relationships, and policy development.
Published by Alzheimer’s Australia. Free online access.
Alagiakrishnan K, Lim D, Brahim A, et al. Sexually inappropriate behaviour in demented elderly people. Postgraduate Medical Journal 2005;81(957):463-466.
Black B, Muralee S, Tampi RR. Inappropriate sexual behaviors in dementia. Journal of Geriatric Psychiatry and Neurology 2005;18(3):155-162.
Davies HD, Newkirk LA, Pitts CB, et al. The impact of dementia and mild memory impairment (MMI) on intimacy and sexuality in spousal relationships. International Psychogeriatrics 2010:22(4):618-628.
De Medeiros, K, Rosenberg PB, Baker AS, et al. Improper sexual behaviors in elders with dementia living in residential care. Dementia and Geriatric Cognitive Disorders 2008;26(4):370-377.
Frankowski AC, Clark LJ. Sexuality and intimacy in assisted living: Residents’ perspectives and experiences. Sexuality Research and Social Policy 2009;6(4):25-37.
Guay DR. Inappropriate sexual behaviors in cognitively impaired older individuals. American Journal of Geriatric Pharmacotherapy 2008;6(5):269-288.
Ozkan B, Wilkins K, Muralee S, 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.
Rosen T, Lachs MS, Pillemer K. Sexual aggression between residents in nursing homes: literature synthesis of an underrecognized problem. Journal of the American Geriatrics Society 2010;58(10):1970-1979.
Series H, Degano P. Hypersexuality in dementia. Advances in Psychiatric Treatment 2005;11(6):424-431.
Simonelli C, Tripoli F, Rossi R, 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.
Svetlik D, Dooley K, Weiner M, et al. Declines in satisfaction with physical intimacy predict caregiver perceptions of overall relationship loss: a study of elderly caregiving spousal dyads. Sexuality and Disability 2005;23(2): 65-79.
Tenenbaum E. To be or to exist: standards for deciding whether dementia patients in nursing homes should engage in intimacy, sex, and adultery. Indiana Law Review 2009;42(3):675-720.
Tenenbaum E. Sexual expression and intimacy between nursing home residents with dementia: balancing the current interests and prior values of heterosexual and LGBT residents. Temple Political and Civil Rights Law Review 2012;459. Albany Law School Research Paper No. 13 for 2012-2013.
Tucker I. Management of inappropriate sexual behaviors in dementia: a literature review. International Psychogeriatrics 2010;22(5):683-692.
Wallace M, Safer M. Hypersexuality among cognitively impaired older adults. Geriatric Nursing 2009;30(4):230-237.
Ward R, Vass AA, Aggarwal N, et al. A kiss is still a kiss?: The construction of sexuality in dementia care. Dementia 2005;4(1):49-72.