1. Sexuality in Elder Care: Toward a New Paradigm Lois Stewart-Archer RN, MN, CPMHN(C) Regional Clinical Nurse Specialist WRHA Geriatric Mental Health Susan Bernjak RN, BA, CACE, GNC(c) Regional Educator WRHA PCH Program

2. SHHHHHH, we’re talking about sex!

3. Sexuality in Elder Care Objectives: 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

4. 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

5. Thoughts on Sexuality “Aging … is a metaphor for asexuality” H. Davies, et al

6. Thoughts on Sexuality What do the words “sex” and “sexuality” mean to you? What are some common attitudes and beliefs held by staff? Common staff reactions?

7. 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

8. 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

9. Staff attitudes What influences our attitudes and beliefs on sex and sexuality? cultural values personal beliefs lack of understanding inadequate training

10. 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”

11. STATISTICS Of 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

12. STATISTICS A 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

13. STATISTICS Another 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

14. STATISTICS Among the most seriously cognitively impaired elderly, 7% are reported to exhibit sexually disinhibited behaviour.

15. Sexuality & Intimacy

16. 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 ).

17. SEXUALITY Sexuality 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).

18. 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).

19. Intimacy The need and ability to experience emotional closeness with another human being and to have that emotional closeness predictably reciprocated (Denis Dalley).

20. Sexuality: What does it mean? Close companionship Touch and be touched Body image Synonymous with sexual activity and intercourse. (Deacon, Minicheiello, Plummer, 1995)

21. Sexually Dysinhibited Behaviour Incidence 4% - 7% Occurrence: both males and females Both long term care and acute care Particularly high with those with a dementing illness

22. Changes secondary to Dementia Of Note: Existing relationships  adapt New relationships  form Desires  fluctuate

23. Dementia: Sexuality & Intimacy Changed sexual behaviours Uncharacteristic? Illness related Sexual desire – what, when, where Loss of inhibitions Advances towards others Diminishing sexual interest Withdrawn, non-initiate Increased sexual demands Unreasonable, exhausting “Objectified”

24. 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!

25. Causes of SDB Underlying Medical Problems Labial CancerVaginitis Prolapsed uterus UTI Colorectal cancer Scabies

26. Causes of SDB Aggressive response to stressor of institutionalization Threat, fear, loss Structure Tasks exceed ability etc

27. 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

28. Causes of SDB Need for Intimacy Desperation for human contact

29. Causes of SDB Panic associated with death – helps mask

30. Causes of SDB  impulse control Age-related Changes

31. Medication Adverse Effects A/D (tricyclics -  desire, SSRIs - delayed ejaculation, Trazodone –  desire Antihypertensives (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)

32. SDB: Theoretical Framework Current condition Physical Mental Habits, Personality Environment Physical Psychosocial Unsatisfied Need SDB Due to Frustration Negative Effects SDB Communicates needs SDB Satisfies the need Cohen-Mansfield, 1990

33. General Suggestions for Basic Intervention

34. Disturbance in Memory and Judgment Reorient to person and place as possible Use short simple instructions to direct to room or redirect behaviour Label rooms to help locate privacy If SDB persists, use alternative clothing Pull-over shirt Elasticized pants Back-closing shirts etc.

35. Unmet Need for Affection Assign same caregiver consistently Spend time with Resident/Pt. Provide tactile stimulation e.g. touch, toys, texture Encourage verbalization re: sex and sexual frustration Reward for appropriate requests for attention e.g. smile, hug, spend time

36. Death Anxiety Spend time with Resident/Pt. Encourage to verbalize feelings about illness, end of life Engage in life-review or reminisce therapy as appropriate Reinforce that he is not alone

37. Age-related changes with  impulse control Provide with limits for behaviour, outlining acceptable and unacceptable behaviour in the present environment Reassure of acceptance Problem solve to determine ways to manage (situation triggers, alter situation) Reward for appropriate requests for attention e.g.. Smile, hug, spend time

38. Misinterpreting Environmental Cues Clothing removal Self exposure Masturbation Inappropriate touch Requests for kisses Attempts to fondle Clothing - hot, itchy, tight Need to use bathroom Boredom, frustration Mistaken identity Expressed need to touch Misinterpret others Behaviour Possible Explanation

39. 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)

40. Defining Capacity to Consent to Sexual Relations Ability 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)

41. Defining Capacity to Consent to Sexual Relations Awareness 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)

42. Our Approach

43. Our Approach to Sexual Behaviours in LTC A 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?

44. Steps in a problem solving approach 1. Define the problem is there a problem? whose problem is it? who is it affecting? the resident? the family? other residents? staff?

45. Steps in a problem solving approach 2. Assess the person what is behind the behaviour?

46. Steps in a problem solving approach 3. 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

47. Steps in a problem solving approach 4. Evaluate and monitor

48. Challenges Masturbation video clip applying the problem solving approach

49. Challenges Consenting Adults video clip applying the problem solving approach

50. Policy Development Having 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?

51. Policy Development a statement of purpose definitions of sexuality and intimacy a definition of sexual expression a definition of capacity

52. 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

53. Policy Development resident rights you may want to consider include: the right to seek out and engage in sexual expression

54. 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

55. 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?

56. 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?

57. Ethical Considerations Some 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

58. 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?

59. 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?

60. Organizational Support of Sexual Expression in LTC Facility Area Policy Education Access Privacy Environment Interventions Development of policies incorporating the sexual needs of residents into care plans Staff education tailored to the defined level of staff Access to beauty salon, manicurist, cosmetics Offering married couples own room Do not disturb sign Requiring knocking prior to entering room Facilitation of conjugal/home visits to spouse Provision for locked doors Availability of a double bed

61. Responsibilities of Nursing Home Staff Regarding Sexual Expression Issues Environment Privacy Needs Materials Risk Responsibilities Maintain awareness, support sexual expression Assist in maintaining privacy for sexual activity Permit access to sexually explicit materials (magazines, videos, etc) 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 (Messinger-Rapport et al, 2003)

62. KEY POINTS People with dementia have lived with their sexuality for much longer than they have lived with Dementia. Not everyone with Dementia is heterosexual Not everyone chooses to exercise his right to be a sexual being Couples who work on their relationships can keep them stronger for longer Maintaining a healthy sex life can improve overall quality of life for caregivers and those with Dementia Caregivers need to consider their own needs along side those who have Dementia The risk of sexual infections does not diminish with age Sexual abuse of a person with Dementia can constitute a criminal offence

63. Video Clip Backseat Bingo 6 min

64. Questions/ Comments

65. References Archibald, C. “Sexuality and Dementia: The Role Dementia Plays When Sexual Expression Becomes a Component of Residential Care Work” Alzheimer’s Care Quarterly Apr./June 2003 Barnes, I. “Sexuality and Cognitive Impairment in Long Term Care” Canadian Nursing Home Oct. 2001 Bonifazi, W. “Somebody to Love” Contemporary Long Term Care April 2000 Cohen-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. 2004 Lindau, S. et al “A Study of Sexuality and Health among Older Adults in the United States” New England Journal of Medicine August 2007

66. References Loue, S. “Intimacy and Institutionalized Cognitive Impaired Elderly”, Care Management Journals Winter 2005 Roach, R. “Sexual Behavior of Nursing Home Residents: Staff Perceptions and Responses” Journal of Advanced Nursing 2004 Robinson, J. & Molzahn, A. “Sexuality and Quality of Life” Journal Of Gerontological Nursing March 2007 Teitelman, J. & Copolillo, A. “Guidelines for Recognition and Intervention” Alzheimer’s Care Quarterly Summer 2002 Wallace, M. “Sexuality and Aging in Long Term Care” Annals of Long Term Care February 2003 WHO Definition of Sexuality and Intimacy. Geneva: Author. (2003)

67. 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

68. References Videos: Freedom of Sexual Expression Backseat Bingo