Intimacy After Traumatic Brain Injury: What We Know and What We Are Guessing

1. Intimacy After Traumatic Brain Injury: What We Know and What We Are Guessing Angelle M. Sander, Ph.D. Assistant Professor Department of Physical Medicine& Rehabilitation Baylor College of Medicine Project Co-Director RRTC on Community Integration in Persons With TBI Memorial Hermann/TIRR

2. Intimacy • “Close or warm friendship” • “A usually secretive or illicit sexual relationship” • “a feeling of being intimate and belonging together” Webster’s online dictionary

3. Intimacy “a relation into which fools are providentially drawn for their mutual destruction” The Devil’s Dictionary by: Ambrose Bierce

4. Intimacy “Intimacy is the basis of friendship and one of the bases of love. It may take several forms. The main ones are emotional intimacy and physical intimacy.” Webster’s online dictionary

5. For the purpose of this presentation.. Intimacy= emotional and physical closeness between two or more people involved in a romantic relationship • Emotional • Physical/Sexual

6. What We Know About Emotional Intimacy After TBI

7. “Characterological” Changes After TBI” (Lezak, 1978) • “…impaired capacity for social perceptiveness”; “…empathy and self-reflective or self-critical attitudes are greatly diminished if not lacking altogether” • “…impaired capacity for control and self-regulation gives rise to impulsivity, random restlessness, and impatience.” • “…decreased or absent behavioral initiative…”

8. “Characterological” Changes After TBI” (Lezak, 1978) • “apathy, silliness, lability, irritability, and either greatly increased sexual interest or a virtual loss of the sex drive.” • “…inability to profit from experience compromises the patient’s capacity for social learning….”

9. Marital Discord After TBI • Rosenbaum & Najenson (1976)- Compared to wives of men with paraplegia and controls, wives of men with TBI at 1 year post-injury, • Reported their husbands as “childlike”, dependent and “self-oriented” • Rated the role of “being a sexual partner” as lower; “dislike of physical contact with husband” • Reported that they did not feel close to their husbands

10. Marital Discord After TBI • Panting & Merry (1972)- 40% separation/divorce rate up to 7 years post-injury • Bond (1984)- Spouses who were younger and married more recently were less likely to remain in the relationship. • Thomsen (1989)- 7 of 9 married couples had divorced at 15-year follow-up

11. Marital Discord After TBI • Peters et al. (1990)- 55 males recruited from past patients with mild to severe (primarily mild to moderate) at a hospital in Winnepeg • Wives of men with severe injuries reported lower total marital adjustment, less dyadic consensus, and lower expression of affection within their marriage.

12. Marital Discord After TBI • Recent studies show divorce rates ranging from 15% to 54% (Tate et al., 1989; Anderson-Parente, 1990; Wood & Yurdakul, 1997; Webster et al., 1999; Wood et al., 2005; Kreutzer et al., 2007). • Older persons less likely to divorce (Andersen-Parente, 1990; Kreutzer et al., 2007) • Persons married longer prior to injury more likely to stay together (Kreutzer et al., 2007).

13. What We Don’t Know About Emotional Intimacy • Lack of prospective, consecutive samples; primarily convenience samples or clinic samples • Most had as a focus burden on uninjured spouse, mainly female • Lack of information on intimacy in unmarried persons (single, gay) • Lack of information on intimacy when female is injured • Lack of information on perceptions of intimacy from the person with injury • How does intimacy change over time?

14. What We Know About Sexual Intimacy After TBI

15. Changes in Sexual Functioning After TBI • Up to 58% of males report decreased sexual functioning in one or more of the following areas: • Failure to obtain or maintain erections • Decreased desire • Decreased ability to achieve orgasm • Ejaculatory dysfunction • Decreased frequency of sexual activity • Overall decreased quality and satisfaction Kosteljanetz et al., 1981; Kreutzer & Zasler, 1989; Blackerby, 1990; Kreuter et al., 1998; Ponsford, 2003

16. Changes in Sexual Functioning After TBI • Females seldom investigated as a separate group • Hibbard et al. (2000)- Compared to women without disability, women with TBI • Reported less energy for sex • Decreased sex drive • Decreased initiation of sexual activity • Decreased ability to achieve orgasm • Decreased sexual arousal

17. Hibbard et al. (2000)- Compared to women without disability, women with TBI • Pain during sexual activity • Decreased ability to masturbate • Decreased vaginal lubrication • Greater difficulty with positioning and movement • Decreased sensation • Decreased body image

18. Hypersexuality After TBI • Occurs rarely • Result of general disinhibition/inability to self-monitor • Case studies indicate that this behavior is very distressing to family members when it does occur, increasing its salience. Miller et al., 1986; Zencius et al., 1990)

19. Possible Causes for Change in Sexual Functioning • Primary Causes • Direct damage to parts of brain involved in sexual functioning • posterior cortex- temporal lobe, amygdala, hippocampus • Anterior cortex- frontal lobe, cingulate gyrus • Hypothalamus • Endocrine dysfunction • Hypothalamic-pituitary-gonadal system

20. Possible Causes for Change in Sexual Functioning • Secondary causes • Physical deficits- hemiparesis, spasticity, decreased balance • Cognitive deficits- distractibility, speed of processing, social communication, initiation • Emotional changes- depression, apathy, impulsivity • Social isolation • Medication effects

21. What We Don’t Know About Sexuality After TBI • Lack of standardized measures • Lack of models explaining contributing factors • Lack of accounting for non-injury factors that could impact sexual functioning, such as age • Lack of information of impact on partner’s sexual functioning and satisfaction • What treatments work best and when?

22. Interventions for Intimacy

23. Prigatano (1989) Work, love, and play as symbols to guide persons with brain injury in the recovery process. What do we, as rehabilitation professionals, do to address love?

24. Recommended Treatment Programs to Address Sexuality After TBI • Staff development/sensitivity training: beginning in inpatient rehabilitation • Values assessment in staff • Education • Training in approach to addressing sexuality with persons with TBI and family members Blackerby, 1990; Ducharme & Gill, 1990; Ducharme, 1993; Aloni & Katz, 2003

25. Recommended Treatment Programs to Address Sexuality After TBI • Education of Persons With TBI and family members • Psychoeducation beginning with inpatient rehabilitation • Therapy with persons with TBI • Training in compensation for cognitive deficits • Social skills training • Role playing • Practice in community • Marital and/or couples counseling • Sex therapy • Use of sexual surrogates

26. No empirical data on treatments for sexuality and/or emotional intimacy

27. Focus group • 5 persons with TBI; 1 spouse; 1 fiance; 1 parent • All had participated in comprehensive inpatient rehabilitation at 1 of 2 facilities associated with Level I trauma centers • None had received any information on potential changes in sexual functioning and how to deal with them. • None had been asked about sexual functioning during the course of rehabilitation or during follow-up clinic visits

28. RRTC Intimacy Project • Collaboration with Carol Gill, Ph.D. and Nina Robins, Ph.D. at UIC • Qualitative interviews with 18 couples (18 persons with TBI and an intimate partner) • Conducted separately with each member of couple • Range of age, ethnicity, sexual orientation, number of years in relationship, and whether they were together before injury • 6-month follow-up

29. Changes in Intimacy According to Persons With Injury “…I was 17 at the time of the accident so and…I was never intimate with anybody before the accident so I don’t know if there’s a change. My husband says that I’m not intimate I don’t show my feelings I don’t show my love I don’t show affection and to me I think I do but to him I don’t show it.”

30. Changes in Intimacy According to Persons With Injury “There’s sometime that I’m like I don’t want it and she’s like ‘why I’m right here’ and its like I’m just not in the mood, it’s just that I’m not interested. I get interested then I’m not interested. It goes back and forth and its either sometimes I do want to be with her and sometimes I don’t.”

31. Changes in Intimacy According to Persons With Injury “…you can’t walk up to your spouse and hug her when you want to because your cane’s in the way… whereas previously if she’s standing up or whatever I could walk up there and put my arms around her easy. Now I’m making so much noise and I’m moving so slow that she knows I’m there, she knows I’m coming…and that to me is part of it what feeds a relationship is being able to do those little things that people didn’t ask for but they like getting it. I can’t do that as easily or cleverly for the impact- it’s not the same. Sort of the sponataneity of it….”