Transcript Intimacy After Traumatic Brain Injury: What We Know and

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
Intimacy
• “Close or warm friendship”
• “A usually secretive or illicit sexual
relationship”
• “a feeling of being intimate and belonging
together”
Webster’s online dictionary
Intimacy
“a relation into which fools are providentially
drawn for their mutual destruction”
The Devil’s Dictionary by: Ambrose Bierce
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
For the purpose of this
presentation..
Intimacy= emotional and physical closeness
between two or more people involved in a
romantic relationship
– Emotional
– Physical/Sexual
What We Know About
Emotional Intimacy After TBI
“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 selfregulation gives rise to impulsivity, random
restlessness, and impatience.”
• “…decreased or absent behavioral initiative…”
“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….”
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
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
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.
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).
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?
What We Know About
Sexual Intimacy After TBI
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
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
– 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
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)
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
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
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?
Interventions for Intimacy
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?
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
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
No empirical data on treatments
for sexuality and/or emotional
intimacy
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
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
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.”
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.”
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….”