Objectives

• Discuss prevailing perceptions about sexuality and older adults as well as the capacity of elders with dementia to consent Sexuality in Long-Term Care to sexual activity • Open Your Mind (And Close the Door, Please) Examine the challenges faced by long-term care providers in facilitating safe sexual expression among residents and for managing inappropriate sexual expression • Consider ways to preserve residents’ rights to intimacy and sexuality while complying with regulatory requirements Kathleen Weissberg, OTD, OTR/L Education Director -- Select Rehabilitation [email protected]

Definitions Definitions

• Sexuality • Sexual expression o A part of personality that encompasses o Kissing, fondling, masturbation, oral sex, sexual beliefs, attitudes, values, behavior, intercourse, touching, hugging and knowledge • Expressions • Intimacy o Sending flowers, providing comfort and warmth, dressing up, expressing joy, maintaining beauty o Interpersonal relationship between two and physical experience, flirtation, affection, people who may or may not be engaging passing compliments, proximity and physical in sexual activity contact

1 Domains of Sexuality By the Numbers …

• 45% of older men and 8% of older women Biological think of sex at least once a day (Fisher, 2010) • 28% of men aged 66-71 living in the community report having intercourse at least once a week (Marsiglio & Donnelly, 1991) • 60% of men and 43% of women ages 80-91 Psychological Cultural remain sexually active (Starr & Weiner, 1981)

Physical Changes in Women Physical Changes in Men

• Lower libido or slowing of sexual arousal • Longer time to obtain erection • Hot flashes and/or night sweats • Inability to maintain erection • Sleep disturbances • Increased time between erections • Emotional changes • Vaginal dryness and itching • Increased sensitivity to sounds • Dry skin • Weight gain and/or food cravings

2 Sexuality in Long-Term Care Consider Their History …

• Grew up at a time when sexual • 25% of people living in SNF say they behavior was never discussed are lonely • Sexual activity was suppressed • 40% saying they are sometimes lonely • Education was minimal o A major fear is that they’ll die alone • Modesty was an important value • Gender differences exist

Obstacles to Sex in Residential Strategies to Address Needs Facilities • Lack of privacy • Touch • Negative attitudes toward alternative o For example, hair grooming, hand lifestyles massage, manicure or pedicure, ROM exercises, back rub, taking pulse • Lack of education of staff • Consistent staffing • Lack of education of adult children • Counseling and Education • Physical and mental limitations

3 Sexual Expression in LTC

• Love and caring

• Romance

• Eroticism

Staff Responses to Sexuality Inappropriate Responses

• Standing guard • Placing notes on the medical record • Reporting sexuality at meetings • Reactive protection • Snickering or giggling • Guarding the guards • Discussing sexuality with colleagues • Reprimanding or otherwise scolding • Proactive protection • Praying over the person Roach (2004) • Invasion of privacy

4 SAID Survey (Kuhn, 2002) SAID Survey (Kuhn, 2002)

• Competent and consenting residents who are single are • A resident is entitled to masturbate in private as entitled to be sexually intimate long as his or her personal safety is ensured • Competent and consenting residents who are married, but not • to each other, are entitled to be sexually intimate with one Two residents of the same sex are entitled to be another in a care facility sexually intimate as long as it is consensual • Residents with dementia are not capable of making sound • If family members object to a relative with decisions regarding sexual relationships dementia having sexual relations with others, it is • A spouse living in the community is entitled to become the duty of the staff to prevent such activity intimately involved with someone else if the spouse has • dementia and lives in LTC A resident displaying hypersexual behavior should be transferred out of the facility • A resident with dementia is entitled to be sexually intimate with two different residents as long as there is no sign of • No one should interfere in the sexual lives of coercion in these relationships residents as long as no laws are broken

Training Programs Staff Training Program Elements • • Uncover staff bias, morals, thoughts Resources o Staff can direct the training and • Education individualize it to their population • Support • Debunk myths about older sexuality • Protection o Helps caregivers recognize that sexuality • Empowerment is a human need that does not disappear • with age Confidentiality • Tactfulness (Lorenz, 2009)

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The resident has the right to share a • The resident has the right to personal room with his or her spouse when privacy and confidentiality of his or her married residents live in the same personal and clinical records. facility and both spouses consent to the o Personal privacy includes accommodations, medical treatment, written and telephone arrangement. communications, personal care, visits, and meetings of family and resident groups, but this does not require the facility to provide a private room for each resident

Ftag 241 FTag 460

The facility must promote care for residents in a manner and in an Be designed or equipped to assure full environment that maintains or enhances visual privacy for each resident each resident’s dignity and respect in full recognition of his or her individuality.

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• Accommodation of Needs • Self-Determination and Participation o A resident has the right to reside and o The resident has the right to make receive services in the facility with choices about aspects of his or her life in reasonable accommodation of individual the facility that are significant to the needs and preferences, except when the resident health or safety of the individual or other residents would be endangered

FTag 223 Reactions of Family Members

• The resident has the right to be free • Supportive from verbal, sexual, physical, and • Angry mental abuse, corporal punishment, • Indifferent and involuntary seclusion. • Unsupportive • Humiliated • Embarrassed

7 Spousal Issues Adult Children

• How am I obliged as a spouse or partner to someone who no longer recognizes me? • Feel the need to make decisions • How do I maintain a sexual or intimate relationship including separation when my feeling toward my spouse have changed? • Many not be aware of parent’s sexual • How to I handle my feelings of anger, frustration, behavior and entrapment? • How do I cope with my spouse’s changes in • Does the facility need to tell them sexuality? (e.g., hypersexual, accusations of EVERYTHING? unfaithfulness, suspicion) • How can I meet my spouse’s needs? I love my spouse, but I cannot bring myself to be intimate.

Consider …

In most cases, the facility will choose A “sexual power of attorney” because the direction of the family members without one, the adult children will feel over the wishes of the resident free to control the intimacy of loved ones

8 Ways Dementia Affects Sexuality Spouse/Partner Issues

• Early stages: interest in sex, but • Female caregivers uncomfortable with performance issues partner’s increased sex interest; males • Partner with AD may have interest and do not experience the same (Duffy, 1995) capability; way to retain one normal • With loss of communication ability area of a relationship comes loss of reciprocal feelings • Partner with AD is hypersexual • Spouse may feel alienated and • Person with AD has no interest or withdraw affection that was once thinks sexual activity is unacceptable important to both partners

The Move to LTC The Question of Consent

• Affection often increases when the • MMSE score 14+ has been used as the spouse with AD is moved into LTC cut off for consent to sexual activity • Nursing homes can be places of • MMSE does not address emotional isolation and loss state • Physical contact from others and intimate relationships can be calming Is the MMSE enough? and reassuring

9 Interview for Consent (Lyden, 2007) Criteria for Sexual Capacity

• Interviewer should have good and • Voluntariness comfortable relationship with client • Safety • Utilize someone familiar to assist if • No exploitation impaired speech or translator needed • No abuse • Explain the reason behind the meeting • • Ability to say “no” Assess rationality, knowledge, • Socially appropriate time and place voluntary agreement

Determining Functional Competence For What?

• Determine whether the resident has the ability to express his or her desires • Determine what critical interests or values might be Capacity/competence can only be affected by acting upon the desires assessed in relation to a specific • Determine if the resident can consider these demand or task interests when making a decision • If not, then the nursing home needs to consider or decide whether the value of the intimate relationship outweighs the value of the critical interest affected

10 Keep in Mind Dilemma of Adultery

• Cognitive memory may be impaired, Is the nursing home’s obligation to the often times emotional memory is not resident or to his/her spouse? o Cognitive impairment does not erase the need for affection or intimacy Do we hold a person with dementia at a • If a person can consent to one higher standard than everyone else? relationship, that doesn’t mean they can consent to another o Each relationship must be approached differently

System Bias? Helping to Decide

• System bias relies on the opinion of • Substituted judgement the non-resident spouse, not the resident (Tenenbaum, 2009) • Best interest • Our responsibility should be to the resident • Functional competence o Should we end an intimate relationship based solely on the request of a non- resident spouse? • Authentic self

11 What Can We Do? Assumptions to Follow (Ballard, 1995)

• Include sexual history in admission • Individuals with AD may behave in childish records ways, but must be treated as an adult • o For example, orientation, sleeping People with AD are still sexual and may arrangements at home, level of sexual express a variety of sexual behaviors interest, capacity • You cannot force someone with AD to • Facility should have a consent policy; remember • all staff must be trained to follow it Behaviors are not always as they seem

Definitions Inappropriate Behaviors • Disinhibition • Fondling, hugging, • Aggressive sexual o Lack of restraint; disregard for social kissing strangers overtures conventions • Masturbating in public • Exposing oneself • Hypersexuality • Undressing in public • Urinating in public • Using sexual language • Requesting excessive o Abnormally high desire to engage in • genital care sexual activities Sexually suggestive activity • False accusation of • Initiating sexual sexual abuse activity

12 Gender Differences Categories of Sexual Expression

• Men like to touch and women like to • Intimacy seeking behaviors be touched (Mayers, 1998) • Women want comfort/affection; men • Disinhibited behaviors are more aggressive/forceful (Nay, 1992) • More inappropriate sexual behaviors • Nonsexual behaviors from men than women (Archibald, 1998)

Consider This … Assessing Behaviors (Ballard, 1995)

• Is the behavior related to past abuse? • Exactly what is the resident doing? • What are the biases and beliefs of the • A pattern? Happening frequently? person reporting the behavior? • Is the behavior sexual? Or does it • What is the sexual history of the have another cause? resident? • A triggering incident? • Is the person compensating for loss? • Changes to the environment? • Is this a case of misunderstanding/ • Has medical condition changed? New misinterpretation? medication added?

13 Assessing Behaviors (Ballard, 1995) Behavior Log

• Forgotten social rules? • What activity was going on right before this incident occurred? • Need for attention? • • What happened right before the behavior? Why is this behavior a problem? • • What was the behavior? For whom is it a problem? • What action did staff take regarding the • Risk/benefit analysis? behavior? • Psychological need? • Was action / intervention effective? • Caregiver misinterpretation?

How to Respond (Stimson, 2012) Pragmatic Tips

• Remain calm • Approach the resident as an adult • Be respectful • Modify the environment to encourage • Reassure others the patient means no harm desired behaviors • • Show no awareness Staff assess their own beliefs/biases • • If in a common area, lead resident away Chart and evaluate behaviors objectively • • Step away from the situation Inform family when behaviors have legal, ethical, or social consequences • Do not reprimand, scold or yell • Ensure families know sexual history will be assessed

14 Interventions Keep in Mind …

• Behavioral treatments • Sex offenders may be your residents o E.g., restrictive clothing • History of sexual abuse • Medications • Ensure any relationship is consensual • Person-centered routine

Statistics Fears of Moving to LTC

• 73% of gay and lesbian survey • Fear of caregiver neglect or rejection respondents said that discrimination • Fear of not being accepted by other occurred in retirement communities residents • Greater than 1/3 said they would go • Concern about offending others back into the closet if they were forced • Preference for gay-friendly residential to move into one options in LTC (Johnson, Jackson, Arnette, & Koffman, 2005) (Stein, Beckerman, & Sherman, 2010)

15 Family Circle What Can We Do?

• Delay in moving into LTC • Intake/Admissions o Family members care for them longer at o Most nursing homes do not ask about home sexual orientation (Doll, Bolender, & Hoffman, 2011) • Family members may not be true o Revise forms to read domestic partner or family members same-sex partner o Circle of friends o Clearly indicate confidentiality

What Can We Do? What Can We Do?

• Staff attitudes • Environment and marketing o Don’t assume resident is heterosexual o Pictures in common areas o Treat residents with respect and dignity o Reading material in the library? o Anti-discrimination policies that specify o Pamphlets, posters, websites, brochures, sexual orientation and gender identity resident rights policies contain o Staff response inclusionary language

16 Hindrances to Privacy What Can We Do?

• Unlocked door policies • Wait for permission to enter a room • Evening bed checks • Discuss sensitive information when • Roommates others are not present • Staff access to health-related • Cordon off a “visiting room” for information overnight guests o Private rooms do not always guarantee privacy (Calkins & Cassella, 2007)

No Spare Room? Diseases Affecting Sexuality

• Schedule visits when roommate is out • Diabetes • Help couple make arrangements at a • Hypertension local hotel • Heart disease • Make an unoccupied room available • Incontinence • Find ways to make resident rooms • Kidney disease more private • Stroke • • Add locks on the inside of the room Neurological disorders • • Accommodate family caregivers Cognitive disorders

17 PLISSIT (Wallace, 2008) PLISSIT (Wallace, 2008)

• Permission • Limited Information o Give clients permission to speak about o Informative, educational approach sexual concerns o Patients may be given books, magazines, o Validates as a legitimate health concern videos, etc. to provide relevant and o Ask if it is okay if you ask questions accurate information o Develop an environment of openness and comfort

PLISSIT (Wallace, 2008) PLISSIT (Wallace, 2008)

• Specific Suggestions • Intensive Therapy o Provide tips, directions, exercises used to o Which cases are resulting from additional treat sexual problems underlying causes? o Tailored to meet specific needs of each o Is a referral to a medical professional case needed? o Sexual history of client/partner is obtained

18 Risk of HIV and STDs Reasons for STDs (Resnick, 2003)

• Many have had only one partner • Women cannot get pregnant; do not • Less likely to know risks of contracting choose to use protection HIV • Rate of STDs is 2X as high in older • Many do not use protection men using medications for ED o 60% of unmarried women 58-93 said they • Better health, sexually active longer had not used any sort of protection • Older adults have ignored safe sexual (Lindau, Leitsch, Lundberg, & Jerome, 2006) practices

Reasons for STDs (Resnick, 2003) For Whom is the Policy?

• Older adults raised when men made • It appears as though LTC facilities the decisions make decisions based upon the wishes o A man does not wear a condom if he of the family instead of the resident chooses not to • Adult children are primary consumers • Men have many options for sexual of LTC services and thus need to be partners catered to • Internet dating sites • Men are ignoring safe sex practices

19 Key Stakeholders Developing a Policy

• Dietician • Administrator • Determine the culture of the facility • Housekeeping • Board members o What is normal and acceptable? • Nursing • Pastoral care o What is inappropriate or pathological? • Social service • Volunteers • Review policies from other • Activities • Ethics professionals organizations • Therapy • Residents • Policies will also differ by level of care • Physician • Ombudsman • Family

Policy Elements Policy Elements

• Admissions • Consent o Gather information re: sexual history, o Expression allowed with consent and interest, activity benefits outweigh risks • Working definitions o Care staff may decide whether to permit o E.g., sexuality, intimacy, sexual behavior sexual behavior/activity o o What is considered normal and Staff determine and document consent acceptable? o With family objection, facility seeks a o How will you determine consent? mutually agreeable solution

20 Policy Elements Policy Elements

• Risk • Shared rooms o Assess for resident’s ability to understand • Staff training risks/consequences of an intimate • Reporting procedure relationship • Appropriate staff interventions/responses o Harm or offense • Sexual ethics committee • Interference from staff should only occur if • Police involvement there is significant harm or offense to others AND • Resident sexual education and support • If harm is greater than benefits • Case studies

Successful Policy (Ballard, 1996)

Reviewed at least every 2 years

• Holistic approach considering social, emotional, spiritual, physical, sexual needs • Staff feel comfortable addressing intimacy and sexuality • Guidelines for resolving dilemmas • Families understand potential for intimate relationships and facility policies

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