The recent case in Iowa, where 78-year-old Henry Rayhons, a former Iowa State legislator, was accused of raping his wife Donna, is the tip of the iceberg when it comes to the challenges our society will face with the growing number of people who have Alzheimer’s disease.  If you’re not familiar with the case, the nursing facility roommate of Mr. Rayhons' wife, thought she heard “sexual” noises in the bed next to hers.  Nothing was ever proven, and Mr. Rayhons was found not guilty by a jury in April.  

Numerous issues came to light from this case.  Her doctors testified that she had severe dementia and was unable to consent to anything, let alone sexual relations.  The facility medical director said that any response that she had to her husband’s hugs and kisses was just a “primal response.”  There had been some guidance by the care team previously on the issue and the husband had signed a document acknowledging that his wife lacked the capacity to consent to sex.

Patients in nursing facilities are entitled to both their dignity and autonomy.  Sexuality is an important component of an individual’s life and just because someone is in a nursing home doesn’t mean that they are not allowed to have sex. This issue certainly becomes more complex with the onset of cognitive impairment. There is no question that the wife in this case lacked decision making capacity.  Ultimately the case was probably decided on the lack of proof that a sexual act had occurred.  But, what if it had?  What about the relationship between a husband and wife?  What if this situation had occurred in their home and not in a nursing facility?

Let’s assume that a couple has been married for 60 years and has enjoyed a very active sex life.  Assume further that this active sex life continues while the wife develops early Alzheimer ’s disease.  Over time, the disease progresses to a moderate stage, but the regular sexual activity continues.  Finally, the disease progresses to the severe state.  If the patient does not refuse or respond negatively to sexual activity, what can be presumed?  Is this consent?  Is consent necessary?  What does consent mean in someone with severe Alzheimer ’s disease?

There is certainly a broad range when it comes to the frequency of sexual activity between married couples.  If this couple hadn’t had sexual relations in 20 years and now the husband were forcing his wife to have sex in the setting of dementia, that would appear to be a very different situation.  On the other hand, if they had continued to have sexual relations throughout the course of her disease, and sexual activity was an important aspect of intimacy to both of them, when should it stop?

Every patient is an individual and each situation is unique.  Some patients with dementia have been known to have hypersexual behavior.  Does limiting their sexual activity constitute an intrusion on their autonomy?  In the Rayhons case, the concept that the patient’s response was a “primal response” was looked upon by both the doctors and the prosecuting attorney as not sufficient for consent.  What do you think?

How well are we prepared to address these issues?

In light of the increasing demographic shift, wherein baby boomers are moving to long-term care in increasing numbers, the issue of intimacy and sexuality in long-term care settings must be addressed by geriatricians and other providers. However, this area has received relatively little attention and even less formal focus in traditional medical education, as well as in geriatric residency and fellowship programs.

In an effort to develop baseline data on this topic, AMDA conducted research in the summer of 2013 to examine physician educational preparation, as well as institutional policies and practices related to sexual behavior among patients in long-term care (LTC) facilities. Participants included 175 AMDA Board and Committee members, as well as members of the 2013 Futures class, thus representing a spectrum of clinicians ranging from well seasoned to newly minted geriatricians.

Results of the study were eye-opening.

Study results

The targeted cohort of AMDA respondents participated in record numbers, with a 63% response rate. Many provided additional comments, suggestions and examples of clinical situations which highlighted the need for additional focus and improved competencies related to intimacy and sexuality issues.

Results in topical areas included the following:

Clinical training: 

Education and training regarding sexual expression in long-term care are lacking, and much work remains to be done. Only 25-30% of respondents had formal training regarding intimacy and sexuality among older adults as a component of their educational programs. Half independently participated in some form of CE workshop or read journal articles on the topic, while 30% had no formal training in this area whatsoever. Thus, focus on this content area remains relatively minimal and needs to change.

Institutional Policies: 

Data regarding institutional policies relevant to sexual behavior presented some very interesting findings and were quite variable in terms of their presence and scope in respondent facilities.

When asked if their institution had a policy regarding sexual behavior, results were evenly split. Thirty percent had policies, thirty percent did not and thirty percent were unsure if policies existed in his/her respective facility.

Of existent policies, most provided a general overview regarding sexual behavior among patients/residents, with only 25% addressing more detailed issues including capacity for sexual consent. Surprisingly, only one in five policies addressed legal issues, as well as the process involved in mandated reporting when inappropriate sexual contact was identified.

In light of these results, it is clearly incumbent on all stakeholders to develop and/or update much needed policies regarding sexual expression in long-term care settings. 

Staff Training:

One of the most glaring findings identified lack of staff training regarding sexual behavior in LTC. Respondents indicated that less than 20% of their staff had received any training re this issue. When asked what resources would be most beneficial, virtually 75% indicated that staff training materials would be most helpful in advancing knowledge regarding these issues.

Clinical practice-related issues:

Data suggest that comfort in addressing issues related to intimacy and sexuality in long-term care comes with time and experience, as evidenced by greater comfort among more seasoned geriatricians than their younger counterparts. In addition, while the frequency of issues related to sexual behavior were seen more frequently in assisted living than in skilled nursing facilities, the latter were often more challenging, as these tended to involve residents who suffered from dementing illnesses, thus requiring concern for and evaluation of consent capacity, as well as other significant issues.

Participants highlighted several areas in which additional focus is needed. These included exploration and discussion of provider and staff values, increased cultural competency regarding sexual diversity in long-term care, enhanced opportunities for privacy and the need for ethical guidelines to assist institutions, clinicians, staff and families when faced with challenging situations and behaviors related to intimacy and sexuality.

Suggestions for much needed and enhanced resources regarding intimacy and sexuality in the long-term care setting were generated, and include staff training materials, sample forms and documents related to sexual consent capacity and sexual behavior, creation and updates of policies and procedures, as well as multimedia and didactic enhanced training materials.

Future focus

Bottom line ...There is a growing need for a paradigm shift in terms of education, training, policies and institutional practices focused on intimacy and sexual expression among older adults in long-term care. The Rayhons’ case, while very challenging for all, serves as a beacon which can no longer be ignored.

Results of the AMDA study suggest this as a topic which begs additional attention and effort to advance change. Proactive efforts are needed to facilitate enhanced education and training for geriatric specialists, LTC staff and all stakeholders in the long term care continuum. In addition, creation of ethically referenced, culturally appropriate and inclusive institutional policies and procedures are fundamentally required to afford LTC residents their constitutionally guaranteed rights. Findings of this study offer a first and important step in the process of change.

While no continuing education training modules on intimacy and sexuality in LTC have been developed by AMDA at this time, the AMDA Ethics Committee will soon issue an ethics policy governing these issues. In addition, given the public response to the Rayhons’ case and underlying concern for patients’ rights, sessions on this topic will likely be considered for presentation at both the AMDA and CALTCM Annual meetings. 

In addition, relevant materials can be found at the National Long Term Care Ombudsman Resource Center’s web site, as well as in the video “Freedom of Sexual Expression: Dementia and Resident Rights in Long-Term Care Facilities” distributed by Terra Nova Films. The Hebrew Home at Riverdale, in Riverdale New York, offers a Sexual Expression Policy and Sexual Consent Guideline on their website.

In looking ahead, CALTCM has positioned itself well by focusing attention and educational outreach on this very important and timely topic to the benefit of its members and their patients. Intimacy and sexuality in long-term care are invisible no more.

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Related Resources linked above:

Bloomberg article: http://www.bloomberg.com/news/2014-12-09/rape-case-asks-if-wife-with-dementia-can-say-yes-to-her-husband.html

http://ltcombudsman.org/issues/sexuality-and-intimacy-in-long-term-care-facilities

http://terranova.org/film-catalog/freedom-of-sexual-expression-dementia-and-resident-rights-in-long-term-care-facilities/

http://www.riverspringhealth.org/uploads/ckeditor/files/sexualexpressionpolicy.pdf

http://www.riverspringhealth.org/uploads/ckeditor/files/sexualconsentguidelines.pdf