What we often forget or overlook is that even if it has been a long time since the older individual has participated in a sexual relationship or even thought about anything sexual, this individual is still a sexual being.
Pangman and Seguire define sexuality as “ a fundamental and natural need within everyone’s life, regardless of age and physical state”. A study of care plans revealed the following comments under the heading “sexuality”: “ not applicable” “ keeps jewelry in safe” “ own teeth”
Why is the expression of sexuality in the elderly, particularly those in care facilities, rarely seen as positive? Sexual expression can contribute positively to an individual’s life, as long as it does not infringe on the rights of others.
Eg. “To promote the residents’ Bill of Rights as it relates to sexuality and intimacy and ensure each resident’s rights to freedom, privacy, confidentiality and dignity. Residents have the right to make their own choices. If resident is deemed incompetent and actions impact on another, then interventions must occur. If resident is deemed competent, but is putting others at risk or is not respecting rights of others, interventions may be necessary.” “Intimacy and Sexuality Guidelines” from Macassa Lodge, Hamilton. Ontario Sexual expression: “Words, gestures, movements or activities (including reaching, pursuing, touching, or reading) which appear motivated by the desire for sexual gratification”. From the Hebrew Home for the Aged at Riverdale Capacity: the ability to consent to sexual intimacy and/or sexual activity –consent may be indicated by willing participation ie. lack of resistance/objections
Staff handbook at New Mercer Commons in Ft. Collins, Colorado stats that “Intimacy is a basic level of respecting humanity, like church services and meals. If you’re serving residents with integrity, you can’t excise it from who they are”. The handbook for this facility address sexuality along with TV services and hairdressing costs.
Eg. sexually explicit videos, magazines, books, etc. “ Residents have the following rights, providing in each instance that they do not involve non-consensual acts, acts involving minors, or acts and/or behaviours between persons who are cognitively impaired and/or with impaired judgement, and that they do not impact negatively on the resident community as a whole”. Hebrew Home for the Aged at Riverdale
“… where any associated resident is cognitively impaired and/or with impaired judgement, and for whom there is a designated representative (eg. spouse or adult child), this designated representative will be involved in the decision-making process concerning possible course(s) of action to be undertaken with…the resident. Involvement of a designated representative is warranted only in instances where the involved resident is cognitively impaired and/or with impaired judgement”. Hebrew Home for the Aged at Riverdale
“… the relevant Interdisciplinary Care Team will make clinical judgements regarding the relative benefits or potential harm associated with the resident’s (s’) sexual expression”. The Hebrew Home for the Aged “ When you see one case, you have only seen one case”. Stephen Post
“ I personally would wish to have the integrity of my life journey protected against the waywardness created by dementia.” Stephen Post
Sexual dementia behaviors
Sexuality in Elder Care:Toward a New ParadigmLois Stewart-Archer RN, MN, CPMHN(C)Regional Clinical Nurse SpecialistWRHA Geriatric Mental HealthSusan Bernjak RN, BA, CACE, GNC(c)Regional EducatorWRHA PCH Program
Sexuality in Elder CareObjectives:• we will ask you to examine, and maybe change, your attitudes and beliefs regarding sexuality and the elderly• we will look at some challenging behaviours related to sexuality• we will look at policy development
Thoughts on Sexuality“In our experiences, old folks stop having sex for the same reason they stop riding a bicycle –general infirmity, thinking it looks ridiculous, no bicycle.” A. Comfort
Thoughts on Sexuality“Aging … is a metaphor for asexuality” H. Davies, et al
Thoughts on SexualityWhat do the words “sex” and “sexuality” mean to you?What are some common attitudes and beliefs held by staff?Common staff reactions?
Staff attitudes• residents aren’t interested in sex• sexual behaviours are a problem not an expression of a need• staff are uncomfortable with displays of affection/sexual behaviours• staff become paternalistic
Staff attitudes• concerned about competency of residents involved• level of comfort with gay and lesbian relationships• may feel disgusted• uncertain what to do or say
Staff attitudesWhat influences our attitudes and beliefs on sex and sexuality?• cultural values• personal beliefs• lack of understanding• inadequate training
Myths about Sexuality and the Elderly• “old people don’t have sex”• “old people have stopped developing relationships”• “old people aren’t interested in sex”
STATISTICSOf the1604 men and women ages 65-97 who responded to a survey:• 40% reported that they had sexual activity an average of 2.5x/month• 69% of the men and 49% of the women reported that sex was important in their lives
STATISTICSA recent study from the New England Journal of Medicine reported that:• more than half of those surveyed who were between the ages of 57-75 stated that they gave or received oral sex• one third of those between 75 and 85 reported that they gave or received oral sex
STATISTICSAnother study showed that:• 74% of married men and 56% of married women > 60 continued to be sexually active• 31% of unmarried men and 5% of unmarried women > 60 continued to be sexually active
STATISTICSAmong the most seriously cognitively impaired elderly, 7% are reported to exhibit sexually disinhibited behaviour.
SEX & INTIMACY“Sex and intimacy encompass a kaleidoscope of feelings and activities; from the deepest longings for mutual affection to the simple enjoyment of the company of a loved one” (Sherman, 1998).
SEXUALITYSexuality also covers a gamut of behaviours – touching, kissing, caressing and cuddling, genital intercourse with mutual orgasm and feelings of closeness and being wanted and valued as a human being.” (Sherman , 1998).
Sexuality Defined“Sexuality is a central aspect of being human throughout life and encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction. Sexuality is experienced and expressed in thoughts, fantasies, desires, beliefs, attitudes, values, behaviours, practices, roles, and relationships. While sexuality can include all of these dimensions, not all of them are always experienced or expressed (WHO, 2003).
IntimacyThe need and ability to experience emotional closeness with another human being and to have that emotional closeness predictably reciprocated (Denis Dalley).
Sexuality: What does it mean?• Close companionship• Touch and be touched• Body image• Synonymous with sexual activity and intercourse. (Deacon, Minicheiello, Plummer, 1995)
Sexually Dysinhibited BehaviourIncidence 4% - 7%Occurrence: both males and femalesBoth long term care and acute careParticularly high with those with a dementing illness
Dementia: Sexuality & IntimacyChanged sexual Diminishing sexualbehaviours interest • Uncharacteristic? • Withdrawn, non-initiate Illness related • Sexual desire – what, when, where Increased sexual demands • Unreasonable, exhaustingLoss of inhibitions • “Objectified” • Advances towards others
What Does Not Change?The right to be sexually alive, should adults wish - regardless of age, ability, or sexual preference.Intimacy is a basic need, which people with Dementia and their carers should be able to express, WITHOUT FEAR OF DISAPPROVAL!
Causes of SDB• Underlying Medical Problems Labial Cancer Vaginitis Prolapsed uterus UTI Colorectal cancer Scabies
Causes of SDB• Aggressive response to stressor of institutionalization • Threat, fear, loss • Structure • Tasks exceed ability etc
Causes of SDB• Dementia/Depression - misunderstanding of environmental cues - not adhering to social norms - disturbance in memory, judgment - psychological conflicts acted out through sexual behaviour - frustration, confusion - boredom, inability to concentrate
Causes of SDB• Need for Intimacy Desperation for human contact
Causes of SDB• Panic associated with death – helps mask
Causes of SDB↓ impulse control Age-related Changes
Medication Adverse EffectsA/D (tricyclics - ↓desire, SSRIs - delayed ejaculation, Trazodone – ↑desireAntihypertensives (analapril, diuretics)Antianxiety (inhibition of orgasm)Narcotics (↓ desire)Antifungals (ketoconazole – erectile dysfunction)Anticoagulants (Heparin – priapism)H2 antagonists (Ranitidine – gynaecomastia)Anti-lipid (Niacin - ↓ desire) (Finger et al, 1997; Thomas et al, 2003; Rizvi et al, 2002)
SDB: Theoretical Framework Habits, Personality SDB Satisfies the need Current condition Physical SDB Unsatisfied Communicates Mental Need needs Environment SDB Physical Due to Frustration Psychosocial Negative EffectsCohen-Mansfield, 1990
Disturbance in Memory and JudgmentReorient to person and place as possibleUse short simple instructions to direct to room or redirect behaviourLabel rooms to help locate privacyIf SDB persists, use alternative clothing • Pull-over shirt • Elasticized pants • Back-closing shirts etc.
Unmet Need for AffectionAssign same caregiver consistentlySpend time with Resident/Pt.Provide tactile stimulation e.g. touch, toys, textureEncourage verbalization re: sex and sexual frustrationReward for appropriate requests for attention e.g. smile, hug, spend time
Death AnxietySpend time with Resident/Pt.Encourage to verbalize feelings about illness, end of lifeEngage in life-review or reminisce therapy as appropriateReinforce that he is not alone
Age-related changes with ↓ impulse controlProvide with limits for behaviour, outlining acceptable and unacceptable behaviour in the present environmentReassure of acceptanceProblem solve to determine ways to manage (situation triggers, alter situation)Reward for appropriate requests for attention e.g.. Smile, hug, spend time
Misinterpreting Environmental Cues Behaviour Possible ExplanationClothing removal Clothing - hot, itchy, tightSelf exposure Need to use bathroomMasturbation Boredom, frustrationInappropriate touch Mistaken identityRequests for kisses Expressed need to touchAttempts to fondle Misinterpret others
Principles• Observation• Assessment of past and present• Identification of unsatisfied needs• Adaptation of intervention to needs, personal characteristics, environment• Trial of several alternatives• Assessment of approach used (Groul, 2005)
Defining Capacity to Consent to Sexual RelationsAbility to Avoid Exploitation • Is the behaviour consistent with formerly held beliefs and values? • Does the person recognize the concept of choice and voluntariness? • Does the person have the information needed to make a decision? • Does the person have a guardian? (Alzheimer Mb., 2006)
Defining Capacity to Consent to Sexual RelationsAwareness of Potential Risks • Does the person realize that sexual contact may be time limited? • Can the person describe how she/he will respond if and when contact ends? • Is the person aware of any potential physical and emotional harm? • Can the person take precautions against risks? (Teitelman, 2002)
Our Approach to Sexual Behaviours in LTCA Problem-Solving Approach We need to ask ourselves:• is the behaviour really sexually motivated?• is this “normal” behaviour for this individual?• is there a trigger for the behaviour?• who is this really affecting? • staff? other residents? families?
Steps in a problem solving approach1. Define the problem • is there a problem? • whose problem is it? • who is it affecting? • the resident? the family? other residents? staff?
Steps in a problem solving approach2. Assess the person• what is behind the behaviour?
Steps in a problem solving approach3. Develop a plan• what is the desired outcome?• as a team, decide on the interventions and recommendations you want to put into place • work with the resident, the family, other residents, the interdisciplinary team and staff on all shifts
Steps in a problem solving approach4. Evaluate and monitor
ChallengesMasturbation• video clip• applying the problem solving approach
ChallengesConsenting Adults• video clip• applying the problem solving approach
Policy DevelopmentHaving a policy in place provides guidance for looking at a situation in a more objective way.What do you need to take into consideration when trying to develop a policy on sexuality?
Policy Development• a statement of purpose• definitions of sexuality and intimacy• a definition of sexual expression• a definition of capacity
Policy Development• what individual rights do you want to include in the policy? • the resident’s rights • the rights of other residents, families and staff
Policy Development• resident rights you may want to consider include: • the right to seek out and engage in sexual expression
Policy Development• the right to obtain materials with legal but sexually explicit content for personal use• the right to privacy in support of sexual expression
Policy Development• the impact on other residents, family, staff • who is the recipient of the sexual expression? • what if a cognitively impaired resident is the recipient of the sexual expression?
Policy Development• what will you do if there is no consensus among the resident, other residents, staff and family?• include a reminder that each incident needs to be considered individually• what is your commitment to on-going staff/family education?
Ethical ConsiderationsSome thoughts on ethical considerations:• views on sexuality and the elderly are often not a reflection of the values of the resident, but rather the values and attitudes of staff and the facility
Ethical Considerations• at what point do we, as staff, have the right to decide what is inappropriate touching?• how do we tell the family?• how do we decide whether a relationship will continue? • determine capacity?
Ethical Considerations• how do we determine that we are “caring” for a resident, not “controlling” a resident?• how do we decide whether the “then” self controls the destiny of the “now” self?
Organizational Support of Sexual Expression in LTC FacilityArea InterventionsPolicy Development of policies incorporating the sexual needs of residents into care plansEducation Staff education tailored to the defined level of staffAccess Access to beauty salon, manicurist, cosmeticsPrivacy Offering married couples own room Do not disturb sign Requiring knocking prior to entering room Facilitation of conjugal/home visits to spouseEnvironment Provision for locked doors Availability of a double bed
Responsibilities of Nursing Home Staff Regarding Sexual ExpressionIssues ResponsibilitiesEnvironment Maintain awareness, support sexual expressionPrivacy Needs Assist in maintaining privacy for sexual activityMaterials Permit access to sexually explicit materials (magazines, videos, etc)Risk Identify situations requiring intervention, such as: • involvement of those with impaired cognition • presence of medical condition that might limit or require adaptation of sexual activity • risk of communicable disease – STDs • public expression offensive to others • emotional distress, possibly requiring counselling
KEY POINTSPeople with dementia have lived with their sexuality for much longer than they have lived with Dementia.Not everyone with Dementia is heterosexualNot everyone chooses to exercise his right to be a sexual beingCouples who work on their relationships can keep them stronger for longerMaintaining a healthy sex life can improve overall quality of life for caregivers and those with DementiaCaregivers need to consider their own needs along side those who have DementiaThe risk of sexual infections does not diminish with ageSexual abuse of a person with Dementia can constitute a criminal offence
ReferencesArchibald, C. “Sexuality and Dementia: The Role Dementia Plays When Sexual Expression Becomes a Component of Residential Care Work” Alzheimer’s Care Quarterly Apr./June 2003Barnes, I. “Sexuality and Cognitive Impairment in Long Term Care” Canadian Nursing Home Oct. 2001Bonifazi, W. “Somebody to Love” Contemporary Long Term Care April 2000Cohen-Mansfield, J. Theoretical Frameworks for Behavioural Problems in Dementia. Alzheimer’s Care Quarterly, 1(4):8-21. (1990)Groulx, B. Screaming and Wailing in Dementia. Canadian Alzheimer Disease Review,7-11. (2005)Hajjar, R. & Kamel, H. “Sexuality in the Nursing Home, Part 1: Attitudes and Barriers to Sexual Expression” Journal of American Medical Directors Association Mar./Apr. 2004Lindau, S. et al “A Study of Sexuality and Health among Older Adults in the United States” New England Journal of Medicine August 2007
ReferencesLoue, S. “Intimacy and Institutionalized Cognitive Impaired Elderly”, Care Management Journals Winter 2005Roach, R. “Sexual Behavior of Nursing Home Residents: Staff Perceptions and Responses” Journal of Advanced Nursing 2004Robinson, J. & Molzahn, A. “Sexuality and Quality of Life” Journal Of Gerontological Nursing March 2007Teitelman, J. & Copolillo, A. “Guidelines for Recognition and Intervention” Alzheimer’s Care Quarterly Summer 2002Wallace, M. “Sexuality and Aging in Long Term Care” Annals of Long Term Care February 2003WHO Definition of Sexuality and Intimacy. Geneva: Author. (2003)
Reference (Modules)“Intimacy, Sexuality and Sexual Behaviour in Dementia: How to Develop Practice Guidelines and Policy for LTC Facilities” (McMaster website)Sex and Sexuality in Long Term Care: Mod. 2: Sexuality and Dementia“Staff Education Manual: Resident Sexuality in the Nursing Home” The National Alzheimer Centre of the Hebrew Home for the Aged at Riverdale
ReferencesVideos:Freedom of Sexual ExpressionBackseat Bingo