People with dementia and decision-making around sexuality

1. People with dementia and decision-making around sexuality Chris Perkins Selwyn Foundation

2. Autonomy: The “then” self or the “now” self? precedent autonomyvs present wellbeing, needs and desires • What if person with dementia is suddenly aware and ashamed? (Post 2001) • Sexual advance directives?? • Can a substitute decision-maker keep their own values out of it?

3. Non-maleficence: Limit harm but don’t totally protect…everyone is entitled to take reasonable risk. When measuring reasonableness of risk…take into consideration- • Probability of harm • Severity of the harm being risked • Chance to reach one’s goals by taking risk • Significance of goals • Other less risky alternatives

4. Interference is justified when… • Associated harm has a high degree of gravity • Impossible for the offended person to reasonable avoid the objectionable event. • The gravity of the offence must outweigh the reasonableness of the resident’s sexual behaviour.

5. Beneficence: • psychological and physical beneficial effects of sexuality for older people • Improved quality of life (but not many studies)

6. Justice: • Ageism, denying sex to older people • Lack of private area for sexual activity • Lack of informational privacy • Lack of partner / lack of men • Family’s wishes privileged over older person’s • Right to associate with whomever

7. Balancing ethical principles • Protection and maintenance of dignity vs residents desires to fulfill sexual needs • Residents are often infantilized which makes it hard for nursing staff to contemplate them as sexual beings (Archibald, 1998).

8. Applicability of the concept of autonomy in this group? Care ethics considers: • The nature of the relationship • The historical context • The extent to which the truster and trusted’s interests coincide

9. Consideration of marriage vows… • Protection for someone who has vowed bodily exclusiveness to wife or husband vs • Adultery is commonplace. Why hold the person with dementia to higher standards than the general public? • But what if the person with dementia mistakes another for their spouse?

10. Final comments • …..the sexual interest of elderly residents might easily be perceived to be a behavioral problem rather than the expression of a basic human need for love and intimacy. • The dementia patient may be … expressing a desire for intimacy or human connection is the result of what is called “iatrogenic loneliness” – loneliness induced by staff attitudes and organizational structures that fail to accommodate any form of intimacy within the institutional setting.”

11. references • Lichtenberg,P. & Strzepek, D. (1990) Assessments of institutionalized dementia patients’ competencies to participate in intimate relationships Gerontologist, 30,117-120 • Mahieu, L. & Gastmans(2012) Sexuality in institutionalized elderly persons: a systematic review of argument-based ethics literature. International Psychogeriatrics24 : pp 346-357 • Benbow, S. & Beeston, D. ( 2012)Sexuality, aging and dementia. International Psychogeriatrics24:7, 1026-1033

13. From a moral point of view, it is particularly challenging to deal with the sexual activity of dementia patients. Their physical and mental deterioration places them at major risk of sexual abuse. • In rare cases, dementia may also be accompanied by hypersexuality or disinhibited sexual behavior (Higgins et al., 2004). Within this complex context it is not always obvious what ethically responsible care might mean. • To date, no adequate description of the state of the art on the development of sexual ethics regarding institutionalized elderly persons has been available. Such an overview, however, might enable us to gain insight into the ongoing ethical debate on aged sexuality within long-term care.