November 3, 2011
By Sean Coffey, Policy Specialist, Family Caregiver Alliance
Despite the fact that “sex sells,” most Americans still hesitate to speak about sex openly. Sex and older people is an even more taboo topic- a guide from Alzheimer Scotland notes: “The media tends to portray sex as being the prerogative of the young and beautiful and the notion of older people still having an active sex life as being unusual or a bit of a joke.”
One of the most challenging changes for a caregiver of a loved one with dementia can be the changes in the relationship which can be gradual or more rapid. For a spouse, this can mean transitioning from a romantic partner to a caregiving role, and this may also mean changes to their sex lives and may raise questions about what is still appropriate if a person has dementia, Alzheimer’s, or other cognitive limitations.
This isn’t a new topic- in fact; it was the keynote topic at a California caregiver conference in 2001. A spouse caregiver explained, “”No one asked me about my marriage or sexuality. Yet it plays a large part in our well being. No one asked me, ‘what’s the quality of your life?’ … I’m a sexual individual. I’m 76 years old and I’m still alive,” said Jerry, who cared for his wife with dementia.
In a 2009 column, writer Lara Riscol highlights issues of dementia, sex, and nursing homes. She explains that sex and Alzheimer’s can be so touchy because it includes many other “hot button” issues, like the right to privacy, sex outside of marriage, sexual exploitation vs. consent, and “icky denial over our parents, the elderly, or those with disabilities desiring or doing it.” She profiles the Hebrew Home for the Aged in Riverdale, New York, for its policies that aim to recognize that a diagnosis of dementia does not necessarily mean the end of intimacy or a sex life for a resident. Robin Dessel, the Director of Memory Care at the Home, explains,
An Alzheimer’s diagnosis isn’t a blanket verdict of incompetence. You don’t lose your rights and ability to make choices. For a lot of staff it’s a huge leap, especially with dementia when patients have lost the ability to toilet themselves…yes, you’re responsible for toileting needs, but they have choices with intimacy needs,”
Alzheimer’s Australia has an excellent guide that provides an overview for staff and families who have loved ones at a nursing home and who are working through issues of sexuality. Topics covered include: consent, privacy, understanding family relationships, risk management, and developing policies. The guide also provides three example stories to help guide people through what issues should be addressed in each example. Professor Sally Garratt, who wrote the guide, notes in her introduction:
There is no one size fits all. There are perhaps two essential points to remember. First, no matter what our age or disability we have a need for sexual expression in some form. Second, that the art of good care is to enable sexual expression for individuals in a meaningful way without discrimination and/or loss of dignity or self esteem. That can only be achieved if issues are addressed in a non judgmental and sensitive way.
Another resource, especially helpful for family caregivers, is Alzheimer Scotland’s recently updated “Sexuality & Dementia” information sheet that helps caregivers to understand sexual behavior and provides suggestions on how to address behavior which may be inappropriate.
A theme from all of the guides is that each person’s situation is different, and communication with everyone involved can help identify people’s expectations about how issues of sexuality and dementia should and will be handled.
There are several excellent resources for family caregivers and healthcare professionals that can serve as guides for thinking through these issues:
1) Quality Dementia Care Series Book 6, Understanding dementia care and sexuality in residential facilities. (Alzheimer’s Australia) October 2010. Available at: http://www.fightdementia.org.au/research-publications/quality-dementia-care-papers.aspx
2) Sexuality & Dementia Information Sheet (Alzheimer Scotland) October 2011. Available at: http://www.alzscot.org/pages/info/sexuality.htm
3) Sexual Behavior in Elderly Patients With Dementia: An Expert Interview With Elizabeth Galik, PhD, CRNP, and Margaret Hammersla, MSN, CRNP. Medscape News (registration is required but free). October 2009. Available at: http://www.medscape.com/viewarticle/709814
4) “Sex and Dementia” (Alzheimer’s Society). Available at: http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=129
5) “Sexuality and Dementia: Coping With Changes in Your Intimate Relationship (Family Caregiver Alliance). Available at: http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=677
For Discussion (These two resources do not provide advice, but can serve as discussion starters.)
1) “Sex and Dementia: Shrouded by Taboo” by Lara Riscol (RH Reality Check). September 9, 2009. Available at: http://www.rhrealitycheck.org/blog/2009/09/09/sex-and-dementia-shrouded-taboo
2) “An Affair To Remember: She was 82. He was 95. They had dementia. They fell in love. And then they started having sex.” (2008, June 10th). (This was cited in Lara Riscol’s column mentioned above) Available at: http://www.slate.com/articles/life/family/2008/06/an_affair_to_remember.single.html