1. Sexuality, Dementia and Residential Aged Care Michael Bauer 1, PhD Deirdre Fetherstonhaugh 1, PhD Laura Tarzia 1, PhD Rhonda Nay 1, PhD Elizabeth Beattie 2, PhD David Welman 2 1 Australian Centre for Evidence Based Aged Care, La Trobe University 2 School of Nursing, Queensland University of Technology Research funded by the Dementia Collaborative Research Centres

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3. Sexuality is not what we do  It is who we are and includes…  Intercourse  Romance  Kissing  Affection  Intimacy  Companionship  Personal grooming  Clothing  Touch  Masturbation  Feeling attractive, talking dirty, watching an erotic movie  Feeling masculine, feminine, gay, lesbian, transgender, transsexual, queer…. 3

4. Sexuality in the media 4 Youth Slim bodies Perfect models Muscles No grey hair No sagging

5. We don’t often see this… 5

6. Sexuality and older people  ‘What is virility at 25 becomes lechery at 65’ (Berezin, 1965) 6

7. 7 The reality  Research has consistently shown for over 50 years that older people generally maintain sexual interest and remain sexually capable even into their nineties ( even in nursing homes )  Sexuality linked to quality of life, sense of well-being  Expression of sexuality is a basic human right (where it does not infringe upon the rights of others)

8. Sexuality and people with dementia  Still human  Still get hungry, thirsty, cold, hot  Still feel pain  Still need to feel human- be touched, loved, treated with dignity!  Why would we assume that they do not feel and act sexual? (Nay) 8

9. Sexuality and people with dementia  ‘Sexual sensations are among the last of the pleasure- giving biological processes to deteriorate, and are an enduring source of gratification at a time when pleasures are becoming fewer and fewer.’ (Roach, 2004)  Moderate cognitive impairment does not necessarily preclude a PWD from exhibiting clear preferences for a special friend or partner, having an awareness of a relationship with another, or avoiding exploitation. (Everett, 2007; Kuhn, 2002; Mayers, 1998; Messinger-Rapport, Sandhu, & Hujer, 2003; Shindel Martin, Gibson, Treen, et al, 2002 ) 9

10. RESIDENTIAL AGED CARE & SEXUALITY 10

11. Sexual behaviours reported in aged care in Australian and overseas research flirtingintercourse holding handsmasturbation cuddlingtalking ‘dirty’ intimate touchsadomasochism fondlingsexual identity kissing and other displays of affection the use of sexual materials and sex workers 11

12. Sexuality and residential aged care  A major challenge  For older people to express their sexuality  For staff to accept  No privacy  Inadequate education/training & understanding of dementia  When dementia- sexuality easily dismissed and labelled  ‘inappropriate’ behaviour  A ‘vulnerable population’- fears about consent, duty of care, risk taking  Paternalistic and family centred responses  No assessment of residents’ needs, no discussion  Few resources/policies to guide practice 12

13. Absence of information, policy and guidelines  Less than 3% of Victorian facilities have addressed the topic of sexuality, love, intimacy, or relationships in promotional information available for residents/families.  65% have no information available for staff. (Bauer, Nay & McAuliffe, 2009)  75% of facilities in Australia have no policy on sexuality, sexual health or sexual behaviour  97% of facilities will collect information on sexuality when disruptive behaviour occurs (McAuliffe, Bauer et al, 2012, unpublished data) 13

14. What makes older people living in aged care feel sexual? The views of residents ?  getting dressed up and feeling pampered  being complimented  spending time in mixed sex groups  looking one’s best  enjoying sexually stimulating/explicit media - magazines, TV, videos  talking ‘dirty’  going to bed with a partner and cuddling, kissing and ‘having sex’  masturbating and being with a sex worker (Nay, 2004) 14

15. The views of older people (including those with dementia) living in age care homes about sexuality?  Sex, intimacy, expression of sexuality still important  Limited privacy  Limited opportunities to form new relationships…or maintain old ones  No one to talk to about it  Staff are uncomfortable and harbour negative attitudes  Importance of sexuality and how one expresses it is very individual  Doesn’t concern the family Bauer et al, under review 15

16. Implications of research for residential aged care facilities Facilities need to:  provide more opportunities for residents (incl. those with dementia) to ‘get dressed up’ and socialise  provide opportunities for residents to talk about sexuality  educate families and staff, including ways to facilitate expression of sexuality  have a decision making framework/policy  provide information to all stakeholders  assess resident’s needs 16

17. Current project Development of a sexuality assessment tool for residential aged care facilities which includes the needs of people with dementia: 6 sections:  Policies and Procedures  Staff Education and Knowledge  Education and Support for Residents  Education and Support for Families  Assessment and Documentation  Facility Environment 17

18. Why do we need an assessment tool for sexuality in residential aged care? How do I use this assessment tool? Each section receives a score, with an overall score out of XX. The scoring guideline at the end of the assessment tool provides an indication of how well the facility supports the sex and intimacy needs of residents overall. Important Definitions:  Sexuality/Sexualities  Sexual Abuse  Sexual Behaviour  Sexual Expression  Sexual Aggression  Intimacy 18

19. Facility Environment Y / N/ s ometimes The facility provides private spaces for residents to use for sexual activity The facility organises social events or provides opportunities for residents to express their sexuality in a social setting (ie: dances, parties, adult movie nights) Sexually explicit materials are available for residents to use in the privacy of their own rooms (ie: dvds, magazines) Double rooms or joining rooms are available for residents who wish to live as a couple. Double beds are available for residents Privacy measures are available for individuals who are sharing a room but are not a couple (ie: curtain, divider etc) Score for Facility Environment / 6 19

20. 20 Education and Support for Families Y / N/ sometimes Education is provided to families regarding residents’ rights to express their sexuality Support is provided for families who have difficulty coping with residents’ expressions of sexuality. Families are informed during the orientation period that they may approach staff to speak about their concerns with regards to a resident’s sexual expression Written information (ie: booklets, fact sheets, guidelines) is provided to educate families about residents’ expressions of sexuality Information is provided for families from a Culturally and Linguistically Diverse (CALD) background with regards to residents’ sexuality (ie: booklets or fact sheets in other languages). Support is provided for families from a CALD background with regards to residents’ sexuality (ie: interpreters who can assist with staff-family communication or staff with sensitivity to/knowledge of particular cultural issues surrounding sex). Family meetings are held where family members can raise issues related to residents’ expressions of sexuality Score for Education and Support for Families/7 20

21. Thank you m.bauer@latrobe.edu.au