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

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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

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Intimacy

• Close or warm friendship
• A usually secretive or illicit sexual
  relationship
• a feeling of being intimate and belonging
  together

Websters online dictionary
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Intimacy

• a relation into which fools are providentially
  drawn for their mutual destruction

The Devils Dictionary by Ambrose Bierce
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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.

Websters online dictionary
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For the purpose of this presentation..

• Intimacy emotional and physical closeness
  between two or more people involved in a romantic
  relationship
• Emotional
• Physical/Sexual

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• What We Know About Emotional Intimacy After TBI

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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

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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 patients capacity for social learning.

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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

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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

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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.

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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).

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What We Dont 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?

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• What We Know About
• Sexual Intimacy After TBI

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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
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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

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• 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

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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)
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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

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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

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What We Dont 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 partners sexual
  functioning and satisfaction
• What treatments work best and when?

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• Interventions for Intimacy

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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?

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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
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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

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

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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

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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

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Changes in Intimacy According to Persons With
Injury

• I was 17 at the time of the accident so andI
  was never intimate with anybody before the
  accident so I dont know if theres a change. My
  husband says that Im not intimate I dont show
  my feelings I dont show my love I dont show
  affection and to me I think I do but to him I
  dont show it.

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Changes in Intimacy According to Persons With
Injury

• Theres sometime that Im like I dont want it
  and shes like why Im right here and its like
  Im just not in the mood, its just that Im not
  interested. I get interested then Im not
  interested. It goes back and forth and its either
  sometimes I do want to be with her and sometimes
  I dont.

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Changes in Intimacy According to Persons With
Injury

• you cant walk up to your spouse and hug her
  when you want to because your canes in the way
  whereas previously if shes standing up or
  whatever I could walk up there and put my arms
  around her easy. Now Im making so much noise and
  Im moving so slow that she knows Im there, she
  knows Im comingand that to me is part of it
  what feeds a relationship is being able to do
  those little things that people didnt ask for
  but they like getting it. I cant do that as
  easily or cleverly for the impact- its not the
  same. Sort of the sponataneity of it.