Patients’ and Caregivers’ Adaptation to Improvement in Schizophrenia Susan E. Mason, Susan Gingerich, Samuel G. Sins, Treatment
Ph.D. M.S.W. M.D.
of poorly
schizophrenic patients with antidepressant medication may lead to a relatively rapid increase in their level of activity, autonomy, and assertiveness. Caregivers who bad been accustomed to the patients’ more blunted affect and docile behavior mayperceive this change as
in hostility.
who
know
do
not
angerand
other
propriately
in their
bow
level
Patients to express
strongfeelings
may
alsofind
ofassertiveness
apchanges
to be
stressful. The authors illustrate these problems with case examples and suggest that psychoeducation,
regular team,
cation
contact and can
the treatment
training in communihelp both patients and adjust to the patient’s
caregivers
improved
with
condition.
Recent advances in the psychopharmacological treatment of akinetic and depressed schizophrenic and schizoaffective patients with negative symptoms have included strategies of reduced neuroleptic dosages (1 ,2), aggressive treatment with anticholinergic medications
Dr. Mason
is day
program reat Hillside Hospital, a divisionofLong Island Jewish Medical Center, P.O. Box 38, Glen Oaks, New York 11004. Dr. Sins is director of psychiatric day programs at Hillside Hospital, and Ms. Gingerich is research associate at Eastern Pennsylvania Psychiatric Institute in PhiladelphiL search
Hospital
coordinator
and
Community
the adult home director ing, the patient was
(5-7). These approaches resulted in meaningful,
manageable.
have often functional
improvement.
functioning
an increase
(3,4), and the introduction of adjunctive antidepressant medications
Psychiatry
One unforeseen result, however, has been the difficulty families and agencies sometimes have in ad justing to the relatively rapid lessening of pervasively dysfunctional symptoms in heretofore chronically ill patients. Previously docile, unobtrusive patients may become assertive, energetic, and socially engaging in a short period of time, and they may press for social gains to match their improved symptomatic status. While clinicians may be pleased with these changes, family members or other caregivers in the community may interpret them as signs of hostility or acting out that require remedial action. In this paper we present three cases that illustrate the dilemmas patients may face when quick, psychopharmacologically induced improvement disrupts a longstanding biopsychosocial status quo. Each case provides evidence that increased psychosocial intervention is needed to help patients, caregivers, and family members successfully come through a difficult period in the course of the patient’s improvement.
The
cases
Case 1. Mrs. A, a 54-year-old divorced woman with a DSM- lll-R (8) diagnosis of schizophrenia, had been living in an adult home for several years. She was known to the adult home staff for her delusional belief that people were stealing her clothes from her closet and taking her shoes from under her bed. Although her repeated complaints to
May1990
Vol.41
No.5
Generally,
were annoyconsidered she obeyed
rules, spoke in a rather meek tone, and spent agood deal oftime by herself. She was never thought of as a troublesome patient. Because Mrs. A had complained ofchronic low mood, lack of energy, and anhedonia, her treating clinician placed her on a trial of antidepressant medication, imipramine, in doses of200 mga day, in addition to her regimen of fluphenazine decanoate .2 cc aweek and benztropinc 2 mg by mouth three times a day. She felt better, her energy level increased, and her concentration improved. She felt less apathetic. In addition, she showed slightly increased overt signs of anger at persons she thought had hurt her in the past. Her paranoid delusions continued, essentially unchanged. The director of the adult home complained to the treatment team that Mrs. A was worse and needed a change in medication, specifically in the major tranquilizer. The director said that Mrs. A was acting with increasing hostility and demanding that male employees stay out of her room and that no one go through her closet. Although the treating clinician did not observe Mrs. A at the adult home, at the clinic she seemed to be less depressed than she had been before treatment with imipramine. Fortunately, in this case the treatment team was able to stay in close contact with the director ofthe adult home, to share information about the patient, and to discuss the goals of increasing Mrs. A’s energy, motivation, and autonomy. The treatment
rector
team
to develop
worked
a plan
with
the
di-
that did not
541
immediately place stringent limits on Mrs. A. As time passed, the director appeared satisfied that Mrs. A was receiving proper medication from the treatment team, and he became adjusted to her new state, but he never accepted the idea that she had improved. To the director, the patient had become worse because she was less docile and more assertive. Mrs. A, however, felt happier, better able to care for her own needs, and better able to stand up for herself and get what she wanted out of life. Case2. Mr. B, age 28, had a DSM-il-R diagnosis of schizoa.ffective disorder, depressed type. He lived with his family, although he was largely blocked off from family dynamics because he was apathetic, anergic,
and
dysphoric.
His
family
was concerned about his positive symptoms (auditory hallucinations and
delusional
grandiosity)
and
was
pered and irritable. clinician felt that work on expressing appropriate
Mr. B’s treating Mr. B needed to anger in a more
manner
but sawMr.
B as
much improved overall and better able to be responsible for himself. Mr. B himself was increasingly bothered by headaches that made him feel irritable and frustrated. The headaches, which had been a longstanding complaint, had not become more painful, but Mr. B felt less tolcrant of them. He was nevertheless more satisfied by his own behavior in general and felt that his mood self-respect had improved.
accepting ofhis role as the identified patient. After irnipraminc 1 50 mg a day was added to Mr. B’s standing dose offluphenazine decanoate .85 cc a week and benztropine 2 mg by mouth three times a day, Mr. B’s mood improved, his energy increased, and he began to assert himself. His manner of self-assertion seemed understandable to the treatment team, but his mother cornplained that his symptoms were worsening. On one occasion, Mr. B was riding in a car with his mother and his brother, who was a drug abuser. The brother, who was driving, became angry at his mother and threatened to drive the car offthe road, possibly killing her. Mr. B grabbed the steering wheel and somehow convinced the brother to stop. Then Mr. B punched his brother in the face. Subsequently, Mr. B refused to lend his car to his brother, although previously he had allowed his brother to use the car at will and had also paid for any damages and traffic violations that occurred when the brother was driving the car. Family members were dissatisfied with Mr. B’s behavior, which they viewed as overly aggressive. His mother described him as short-tern-
Her treating clinician placed her on a trial of irnipramine, which was eventually built up to 300 mg a day, in conjunction with her continuing dose of fluphenazine decanoate .17 cc a week and benztropine 2 mg by mouth three times a day. Her mood, energy level, and concentration improved, as did her self-esteem and anxiety level. She gradually discontinued abusing amphetamines and was soon able to get a job. After two months on her optimal dose of irnipramine, Ms. C cornplained that her mother, her boyfriend, and his mother all found her to be overly assertive and angry much ofthe time. They said, according to the patient, that she argued, demanded her own way, and generally “wasn’t the same person they used to know.” Ms. C stated that although she had previously been timid, she now felt better able to cxpress her wishes and opinions. For example, she had strenuously objected to her boyfriend’s New Year’s Eve plans, which included his mother but not Ms. C’s mother, and she was eventually able to obtain an invitation for her mother.
542
May
Vol. 41
No.
medication
5
Ms. C’s boyfriend her, stating that her
had
caused
her
to pro-
yoke a multitude of arguments. He said he would have nothing to do with her unless she stopped her current medication regimen. The treatment team was initially surprised at the boyfriend’s reaction. They had viewed Ms. C as less depressed and appropriately able to express her wants and needs. An indication of her new assertiveness was Ms. C’s request for more time with her clinicians.
and
Case 3. Ms. C, a 32-year-old woman with a DSM-I1I-R diagnosis of schizoaffective disorder, lived at home with her mother and drugabusing brother. She herself abused amphetamines an average of three times a week. She had not worked for nine years and was continually ruminating about her uncertain future with her boyfriend. She suffered from depressed mood and low self-esteem and had an abnormally high level of anxiety.
1990
Eventually, broke up with
The
treatment
team
gladly
granted this request, considering it a sign ofimproved health. Eventually, Ms. C and her boyfriend met together with the treatment team clinicians and discussed Ms. C’s newly assertive behavior. At the meeting, her boyfriend readily perceived that Ms. C’s improved mood
and
increased
energy
and
assertiveness were preferable to her previous docility caused by depression, and their relationship resumed. Discussion The adaptation port
system
of the patient’s to relatively
sup-
rapid
im-
provement in the patient has received little attention in the literature to date. Early writers, who approached the issue from a psychosocial
perspective,
focused
chodynamic
influences
velopment
and
on psy-
on the de-
maintenance
of
schizophrenia(9, 10). Some theorists proposed that parents who blur age and
generational
boundaries
create
inappropriate behavior that promotes schizophrenia in their offspring(9). In these families, dysfunctional patterns of interaction were maintained under a facade of wellbeing, a phenomenon that has been labeled “pseudo-mutuality” (10). Recent studies of accommodation of schizophrenic patients by families and agencies have dealt with the effects of deinstitutionalization. This literature suggests that the burden
experienced
by primary
care-
givers of outpatients with schizophrenia ( 1 1-14) varies in degree depending on the nature ofthe caregivers’ support systems (1 5) and the patient’s most prominent symptoms (16,17).
Schizophrenic
Hospital
and Community
patients
who
Psychiatry
display
positive
thought
symptoms
disorders,
such
as
hallucinations,
and delusions, are more likely to be accepted by spouses than are patients with negative symptoms, such as lack of energy or motivation and poor impulse control ( 1 7). Schizophrenic
patients
are
also
lack skills for socially pression
of anger
thought
appropriate
and
to
cx-
family.
In general, about illness
educating
the causes and and establishing
how
the
more
to manage
specific
issue
improving
of
schizo-
phreiiic patients who show increased energy and assertive behavior has not been adequately addressed.
In the clinic
cases
staff
we presented,
perceived
that
tients had improved, but members or other caregivers share these perceptions. In the adult home staff initially understand the pected outcomes
objectives of the
the the
pa-
family did not case 1, did not
and change
cxin
the patient’s pharmacological treatment, leading to conflict with the treatment staff. Such conflicts are not only unpleasant; they can facilitate splitting by patients to the detriment ofprogress in recovery. In case 2, the family was unable to cope with the patient’s newly gained assertiveness. In situations like this one, violence may result if other family members besides the patient lack impulse
members ness
control
have
used
as a central
part
and ifthe
family
the patient’s of their
ill-
adaptaCase 3 il-
tion to their own problems. lustrated the problems that result when the patient, caregivers, and treatment team hold diverse perceptions ofwhat constitutes healthy behavior and when a patient seems forced to choose between pleasing significant others and taking helpful medication.
Patients
who
are
cx-
pected to make such choices undoubtedly experience harmful stress. As the cases show, some patients
Hospital
and Community
Psychiatry
ful and unpleasant,
and caregivers. Recent research has shown the positive effects of systematically including families and significant others in the treatment of schizophrenia (18,23,25-28). The most successfulofthese efforts teach patients and families about the illness and suggest coping strategies. It is likely that psychoeducation would have helped the patients and caregivers described here. The goals would have been to increase patients’ and caregivers’ understanding of schizophrenia, depression, and negative symptoms and to foster an appreciation of specific pharmacological effects. Additional goals would be to develop realistic expectations of the recovery process, to provide support to patients and caregivers, and to improve communication with the treatment team.
particularly
expressed in ways that flicts. Family members givers may be unsettled
derstand mental
the illness.
ness
behaviors
clinical
if
and may
course of not know
are part
of the ill-
are not,
indicate condition
haviors
ofanger
involved in the and do not Un-
nature They
and which
ifit is
lead to conand careby a change
expression
they have not been patient’s treatment
which
families
course of the open dia-
logues between families and mental health professionals improve family attitudes toward patient care (192 1). Still,
medication and to help family members and other caregivers cope with the stresses associated with the patient’s increased level of energy.
in the patient’s
for effectively
coping with anxiety and stress (16,18), deficits that contribute to the social burden experienced by the patient’s
who experience an increase in energy also experience an increase in anger and assertiveness. Although having more energy is a positive outcome, to most people anger is stress-
or which
be-
improvement in and which are har-
bingers ofrelapse. Indeed, expressions ofanger have often been noted to be proximal correlates ofpsychot-
ic relapse
(22),
and family
members
and caregivers may have learned to be frightened by these signs, which they may understandably seek to
suppress. Exhausted, ized by their
confused, attempts
ordemoralto cope (23,
24), family members and caregivers often may not be able to deal with changes without help. With great ef-
fort,
they may have
satisfactory that they
are
achieved
but stable reluctant
an un-
equilibrium to disrupt.
Their past experiences of destabilization in their environment resuiting
from
changes
in the patient’s
behavior may have been bitter. In such a setting, both the patient and caregivers
may have avoided a full range offeelings
cx-
in
Psychoeducation
Regular givers
contact
and
for patients
between
the treatment
careteam.
Regular contacts with the treatment team increase caregivers’ opportunities to share information about changes in the patient’s symptoms and their impact on the environment. Together, caregivers and the treatment team can work to anticipate and support the changes that may result macotherapy.
from
adjustments in pharFrequent phone calls
may have been “protecting” the patient by not expressing their own dissatisfaction, and both the patient and the caregivers may have been coping with positive symptoms or may have been preoccupied with the
can supplement in-person contacts and help clarify misunderstandings before they become exaggerated. Communication training. Patients who report an increase in their expression of anger and their caregivers can benefit from communication training that suggests ways to express anger that are less likely to lead to arguments and stress. Falloon
crisis
and
pressing Patients feelings and
(18). might have held back angry because oflow self-esteem
low
energy.
ofacute
Family
illness.
members
If not
handled
well, a patient’s unexpected and rough-edged assertiveness could substantially disrupt the patient’s environment and could be countertherapeutic for the patient. Three itiated
interventions by the treatment
can be inteam
to help
patients optimize and maintain improvements resulting from advances
May
1990
Vol. 41
No.
5
others
(18,27)
outlined
five
major skills that are especially helpful for families. They are expressing positive feelings; making positive, direct, and unambiguous requests; expressing unpleasant feelings in a manner
conducive
change; attentive problem solving. could be included
to constructive
listening; Other skills as necessary.
and (28)
543
The three types of interventions would have been useful in the cases we described. IfMr. B and his family in case 2 had been involved in an ongoing psychoeducational group, they might have been better prepared for Mr. B’s change in mood and perhaps could have anticipated that he might be more assertive in his behavior.
Once
conflicts
developed,
communication training could have helped Mr. B and his family learn to express feelings in ways that are less likely result in fist fights and arguments. Learning to express positive feelings might have helped the family to keep sight ofMr. B’s irnprovements, and learning how to complain appropriately might have helped Mr. B obtain treatment for his headache pain. Ms. C and her boyfriend, described in case 3, might also have benefited from a psychoeducational group and communication skills training. The group could have provided information about her illness, the effects of medication, and the goals and intentions ofthe treatment team. With this information, her family and boyfriend might have felt more involved in and supportive of her treatment. When conflicts developed between Ms. C and her caregivers, communication skills training might have helped them express their feelings more appropriately and solve problems in a step-by-step fashion. As noted, initial contacts between the treatment team and Ms. C and her boyfriend had positive results. In case 1 , increased regular contact with Mrs. A’s treatment team would have helped the staff of the adult home understand the changes they perceived in herbehavioras her mood improved. Communication
selves and assume responsibility for their lives. One side effect of these changes, however, may be disruption of the equilibrium that has developed in the patient’s environment as an adaptation to their dysfunctional state. To help patients realize the maximum benefits of pharmacotherapy, treatment teams must be sensitive to the effect of this disruption on patients’ families and other caregivers
as well
as on
Acknowledgments This research was supported in part by National Institute of Mental Health grant MH-34309 and National Institute on Drug Abuse grant DA-05039.
References 1. Kane jM, Rifirin A, Woerner M, et at: Low-dose neuroleptic treatment of outpatient schizophrenics, I: preliminary results for relapse rates. Archives of General Psychiatry 40:893-896, 1983 2. Carpenter WTjr, Heinrichs DW, HanIon TE: A comparative trial of pharmacologic strategies in schizophrenia. journal
of
Psychiatry
sary?
antiparkinson
Archives
35:483-489,
drugs
of General
Archives
ofGeneral
Mrs.
A
express her desire for more privacy and her displeasure at the idea that someone might be going through her clothes.
1990
Vol. 41
No.
5
38:280-285,
1982
mental
health
professionals,
re-
sources, and effects of illness. Schizophrenia Bulletin 8:626-633, 1982 20. Greenley jR: Social control and cxpressed
22.
24.
25.
Psychi-
May
helped
evaluate
1987
544
have
Psychology
1 7. HooleyjM, RichtersJE, Weintraub 5, et at: Psychopathology and marital distress: the positive side of positive symptoms. journal ofAbnormal Psychology 96:2733, 1987 18. Falloon I, Boydj, McGillG: Family Care of Schizophrenia. New York, Guilford, 1984 19. Holden DF, Lewine RR: How families
23.
1978
Conclusions Improvements in the pharmacological treatment ofpatients with chronic psychotic, depressed, or negative symptom states may result in advances in their capacity to care for them-
might
I 5. Crony P, Kulys R: Are schizophrenics a burden to their families? Significant others’ views. Health and Social Work 11:173-188, 1986 16. Van Hassel JH, Bloom Lj, Gonzalez AM: Anxiety management with schizophrenic outpatients. journal of Clinical
neces-
7. Sins SG, Adan F, Cohen M, et at: Postpsychotic depression and negative symptoms: an investigation ofsyndromaloverlap. AmericanjournalofPsychiatry 145: 1532-1537, 1988 8. Diagnostic and Statistical Manual of Mental Disorders, 3rd ed, rev. Washington, DC, American Psychiatric Association, 1987 9. Lidz T, Fleck 5: Family studies and a theory of schizophrenia, in Schizophrenia and the Family. Edited by Lidz T, Fleck 5, Cornelson AR. New York, International Universities Press, 1965 10. Wynne L, Ryckoffl, Dayj, etal: Pseudomutuality in the family relations of
training
14.
Psychiatry
5. Prusoff BA, Williams DH, Weissman MM, et at: Treatment of secondary depression in schizophrenia. Archives of General Psychiatry 36:569-575, 1979 6. Sins 5G. Morgan V, Fagerstrom R, et al: Adjunctive imipramine in the treatmentofpost-psychotic depression: acontrolled trial. atry44:533-539,
13.
2 1.
144:
1466-1470, 1987 3. SirisSG: Akinesiaandpost-psychoticdepression: adifficultdifferential diagnosis. journal of Clinical Psychiatry 48:240243, 1987 4. Rifkin A, Quitkin F, Kanej, et at: Are prophylactic
12.
patients
themselves and must work to help integrate patients’ improved functioning constructively into their environment.
Amencan
1 1.
schizophrenics. Psychiatry 21:205-220, 1958 DoIIW: Family coping with the mentally ill: an unanticipated problem of deinstitutionalization. Hospital and Community Psychiatry 27:183-185, 1976 Hatfield A: Psychological costs of schizophrenia to the family. Social Work 23: 355-359, 1978 Seymour Rj, Dawson NJ: The schizophrenic at home.journat of Psychosocial Nursing 26:28-30, 1986 Solomon P, Beck 5, Gordon B: Family members’ perspectives on psychiatric hospitalization and discharge. Community Mental Healthjournat 24:108-117, 1988
26.
27.
28.
emotion.journalofNervous
and
Mental Disease 174:24-30, 1986 Smith jV, Birchwood Mj: Specific and non-specific effects ofeducationat intervention with families living with a schizophrenic relative. British journal of Psychiatry 150:645-652, 1987 DochertyjP, van Kaznmen DP, Siris SG, et at: Stages of onset of acute schizophrenic psychosis. American Journal of Psychiatry 135:720-726, 1978 McFarlane W: FamilyTherapy in Schizophrenia. New York, Guilford, 1983 Coyne j, Kessler R, Tat M, et at: Living with a depressed person.journal of Consulting and Clinical Psychology 55:347352, 1987 Anderson C, Reiss D, Hogarty G: Schizophrenia and the Family: A Practitioner’s Guide to Psychoeducation and Management. New York, Guilford, 1986 Hogarty GE, Anderson CM, Reiss Dj, et at: Family psychoeducation, social skills training, and maintenance chemotherapy in the aftercare treatment of schizophrenia, I: one-year effects of a controlled study on relapse and expressed emotion. Archives ofGeneral Psychiatry 43:633642, 1986 Falloon I, Mueser K, Gingerich 5, et at: Behavioral Family Therapy: A Workbook. Buckingham, England, Facts Project Press, 1988 Becker R, HeinburgR, Bellack A: Social Skills Training for Depression. New York, Pergamon, 1987
Hospital
and Community
Psychiatry