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Caring for a Family
Member Diagnosed with
a Mental Illness
(while also caring for yourself)
ANN. L. HACKMAN, MD
ASSOCIATE PROFESSOR
UNIVERSITY OF MARYLAND SCHOOL OF
MEDICINE, DEPARTMENT OF PSYCHIATRY
Why is this topic important?
What are some of the challenges in
caring for a family member diagnosed
with a mental illness?
Overview
 Definitions/statistics on mental illness
 Some diagnoses: schizophrenia, major
depression, bipolar disorder, PTSD and
dementia (co-occurring substance use)
 Early treatment, hospitalizations, and
common responses
 Advocating for your family member and
dealing with challenges
 Taking care of yourself and utilizing supports
 Questions, comments and resources
Some Common
Psychiatric Illnesses
Serious Mental Illness
 More than 5% of adults are diagnosed with
serious mental illness, one severe enough to
disrupt one or more major life activities
 1% have schizophrenia
 2% have bipolar disorder
 5-6% have major depression (18%+ lifetime risk)
 1-14% have post-traumatic stress disorder
 1% of people over age 60 have dementia; 20% over age 80
 At least one third of homeless people serious
mental illness
 Half the people diagnosed with serious mental
illnesses (other than dementia) are between
the ages of 25 and 44
Mental Illness: Medical
 Serious mental illnesses are brain disorders
 In a person with mental illness there are changes in
the way brain cells (neurons) communicate using
certain chemicals (neurotransmitters). Research
tells us about more about all of the time.
 These changes in the way the brain works can
produce dramatic changes in how the affected
person thinks, feels, and talks.
 We do not yet have a full understanding of the
functioning of the brain. We cannot diagnose mental
illnesses through blood tests or brain scans; we
diagnose them based on behaviors
The Human Brain
The brain controls how we interact with and interpret
the world; change the brain and you change how the
person experiences the world
Neurons in the brain
N=Neurotransmitter
D=Drug
Reuptake Site
N
N
Nerve impulse
D
N
N
N
D
N
N
N
N
D
N
N
Nerve impulse
D
N
N
Receptors
N
N
N
N
N
D
N
D
Presynaptic Neuron
Synapse
Postsynaptic Neuron
Schizophrenia
 “Positive” (psychotic) symptoms: hearing
real-sounding voices (auditory
hallucinations); experiencing bizarre, unreal
thoughts as true (delusions)
 “Negative” (deficit) symptoms: avoidance of
others (social withdrawal); neglect of
personal hygiene; show little emotion (flat
affect) or inappropriate emotion
 Person often becomes ill in late teens or
twenties, may have significant deterioration
 Symptoms may wax and wane
Schizophrenia types
 Schizophrenia, paranoid type
Intellect is preserved
Experience paranoid delusions, possibly hallucinations
 Schizophrenia, disorganized type
Thoughts very confused
Disorganized behavior
 Schizophrenia, catatonic type
May be completely unresponsive, stuporous
Echolalia, echopraxia
 Schizophrenia, undifferentiated type
 Meets criteria for schizophrenia but not for any of the
other subtypes
Schizophrenia
continued
 About 2/3 of people with schizophrenia
respond to treatment with medications,
therapies, psychosocial rehabilitation, family
support and psychoeducation.
 About 30% of people with schizophrenia
experience severe symptoms and move
between hospitals and the community.
These individuals may have periods of
homelessness.
 Medications include anti-psychotics (haldol,
prolixin, zyprexa, risperdal, abilify, seroquel)
Mood: Major Depressive
Disorder
 Very intense sad mood which may vary over
course of the day; feels tired; no energy,
cannot enjoy anything (anhedonia); sleep
troubles (difficulty falling asleep or staying
asleep; sleeping too much); loss of sexual
desire
 Negative thoughts: worthless, hopeless; evil,
deserves to be punished or feel pain; may
believe badness has caused others to die, end
of world is coming (psychotic depression)
 People with depression may be at risk for
suicide, including during the early weeks of
treatment
Major Depression continued
 Depression is more commonly diagnosed in
women than in men and may seem related to a
specific life event or may occur “out of the blue”
 Between 80 and 90% of persons with this
disorder can be effectively treated, but it may
come back
 Treatments consist of antidepressant
medications (prozac, zoloft, elavil,lexapro,
wellbutrin) psychotherapy (such as cognitivebehavioral therapy), and (in severe and
treatment resistant cases) electroconvulsive
therapy (ECT, “shock treatment”)
Mood: Bipolar Disorder
 Also called manic-depressive disorder
 Person can have alternating periods of elevated
mood and depression, may occur in cycles
 Elevated mood (mania):
 Elated, euphoric mood, grandiose delusions, high energy,
heightened sexual appetite, very rapid speech, racing thoughts,
impulsive behaviors, little need for sleep
 Irritable, angry mood; restless, easily angered with very intense,
frightening emotion; may get into fights
 Depressed mood: (as described) sad, listless,
negative thoughts; hopeless; sleep changes,
diminished appetite and sex drive, cannot
experience pleasure; may be suicidal
Bipolar Disorder cont.
 About 80 to 90% of persons with this
disorder are successfully treated
(symptoms greatly reduced or eliminated)
 Medications include mood stabilizers
(lithium) and anticonvulsants (tegretol,
depakote, lamictal) and antipsychotics
 People with irritable mania have greatest
potential to harm others
 People with severe depression have
greatest potential to harm themselves
Post-Traumatic Stress Disorder (PTSD)
 Some scholars say symptoms first described in
the Bible (Cain). Long associated with wartime
experience. Studied as PTSD when men began
returning from Vietnam with symptoms
 Typically results from exposure to severe stress:
rape, warfare, violent crime
 Person may vividly re-experience traumatic
scenes (flashbacks) to the exclusion of reality;
may appear “psychotic” to an observer
 Sounds or sights reminiscent of the traumatic
event may set person off (triggers)
PTSD continued
 People with PTSD may appear panicky,
agitated, fearful, suspicious, or hypervigilant
and may attempt to defend themselves
 Persons may be concerned that they are
going “crazy” and deny or downplay the
disorder
 Frequently individuals affected do not seek
treatment
 PTSD can be successfully treated with
individual and group therapy and
medications
Dementia
 Common types include Alzheimer’s,
vascular dementia, HIV dementia
 Characterized by the following:
Memory impairment
Cognitive (thinking/learning) disturbances
 Usually has a gradual course and decline
 Can sometimes be helped with
medications such as aricept and cognex
as well as with psychosocial treatments
Substance Use/Dual Diagnosis
 About 50% of people with mental disorders have
substance abuse problems
 People with mental illness may seek to relieve
their symptoms with street drugs and alcohol
 Substance abuse may worsen existing mental
illness by intensifying symptoms and decreasing
behavioral controls
 Substance intoxication can lead to behaviors
which look a lot like psychiatric illnesses.
 Substance abuse puts all persons, with and
without mental disorder, at greater risk for
violent behavior. Substance Abuse is always a
risk factor in both the short and long term
More on substance use
 Common substances of abuse: alcohol,
cocaine, heroin, marijuana, prescription pills
(amphetamines, benzodiazepines, pain pills)
 Other substances: synthetics (ecstasy, K2,
Spice), hallucinogens (LSD, mushrooms)
 Dual Diagnosis treatments
 Medications
 Psychotherapy including cognitive behavioral therapy
 Dual diagnosis treatment
 Psychosocial rehabilitation/Social skills training
 Vocational rehabilitation
 Family psychoeducation
What happens when families
learn that a loved one has been
diagnosed with a psychiatric
Illness?
How we respond
 Denial – “No, my husband does not have
major depression, he has just been down
over the loss of his job”?
 Anger – “What is wrong with you people
handcuffing my son and dragging him to
some emergency room like a criminal just
because he was acting strange?”
 Loss – “If my mother has dementia does
this mean that in another couple of
months she will not even know me?”
Questions to Consider
 What is the experience of mental illness
like for the person who is diagnosed?
 Why would a person with a mental illness
stop taking medications?
 What is the experience like for me and for
other members of the family?
 What are the issues in dealing with a
crisis vs dealing with day to day issues?
 How can I help my family member live
their best possible life?
Hospitalizations and crisis
situations
Dealing with the police, the ER
and an inpatient hospitalization
Dealing with a crisis
 What to expect if you call 911
 First responder will likely be police rather than
ambulance
 If family member is agitated expect that he/she may
be hand-cuffed, may be pepper sprayed
 Will almost certainly be cuffed before being taken to
an ER
 At an ER someone who is agitated, delusional or
threatening may be given medications against their
will, may be strapped down or may be placed into a
locked room
Emergency Petition
 An Emergency Petition may be placed by a
licensed physician, social worker or
psychologist, or by a police officer. A family
member can obtain one by going before a
judge and explaining why a person needs to
be in the hospital
 Once an emergency petition is placed, police
will usually pick the person up quickly often
(usually with cuffs and a paddy wagon) and
take them to the nearest ER for evaluation
At the ER
 Person with psychiatric illness may brought
to ER in handcuffs, strapped down or placed
in a seclusion room if agitated and may
receive medication involuntarily
 A family member calling asking for
information maybe told that because of
confidentiality the hospital cannot provide
information.
 Hospital may cite HIPAA (The Health
Insurance Portability and Accountability Act)
and decline to say anything
Ways for Family members to
deal with privacy rules
 Call the ER or the inpatient unit.
 Identify yourself as a family member
 Tell staff you are aware that your family
member is there.
 Say that you have information which needs to
be communicated to treatment staff.
 Speak with treating team, acknowledge that
they may not be able to tell you anything
 Provide team with any information which you
have and give them your contact information
Further ideas on dealing with
confidentiality/HIPAA
 Call inpatient unit, identify yourself and
again offer to provide any helpful
information regarding your relative
 Nursing staff may inform you that they
are unable to confirm or deny that your
family member is on the unit.
 Ask for the number for the patient phone.
You may call and ask for your family
member. While staff are constrained by
HIPAA, patients on the unit are not.
Interacting with inpatient team
 Although you should express concerns, it will
not help your family member if you take an
adversarial posture
 Convey concerns as well as willingness to
work with the team and to provide information
 Ask to meet with team and your family
member
 Be open with team with information, about
your concerns, and about what you need, and
what you are able to do with your family
member following discharge
An involuntary hospitalization
 If your family member is found to be
dangerous due to his mental illness and
is unwilling to be hospitalized, he may be
hospitalized against his will.
 This means that two physicians evaluate
the person and sign papers (certificates)
saying the person cannot be safely
managed in any less restrictive
environment than a hospital.
Involuntary hospitalization
 If your family member has been certified
neither he, nor you can sign him out of the
hospital.
 Within ten days he will be represented by a
public defender in a hearing (civil) in front of an
administrative law judge (ALJ).
 The hospital will argue that the person needs
to remain hospitalized; the attorney will
represent the person’s rights and the ALJ will
decide on the merits of the case
Involuntary Hospitalization
 Family members may be asked to testify
(but will not be subpoenaed).
 The hospital may ask a family member to explain
what happened at home or why family is unwilling to
have someone return home.
 The public defender may ask a family member to
talk about why they feel the person should be able to
return home
Hospitalization
 Whether it was a voluntary hospitalization
or an involuntary one, family involvement
in discharge planning is essential.
 This may be a good time for establishing
rules and expectations which have been
hard to discuss or maintain as well as for
setting up short- and long-term plans
After the Crisis
YOU AND YOUR FAMILY
MEMBER DAY TO DAY
One day to the next
 Caring for your family member day to day
 Be as consistent as possible
 Set household expectations and help your family
member to maintain them (e.g. attending to basic
hygiene)
 Be clear about any consequences or rewards
 Maintain a schedule and be consistent (especially
important when family member has dementia)
 Keep family member informed about any variations
in usual routine (e.g. today we have a doctor’s
appointment)
Things to think about
 What rewards are motivating to my family
member?
 Who can I turn to for help?
 Can I incorporate this help into our usual
routine?
 How can I connect with/form a team with
my family member’s treatment providers?
(and, if possible, with my family member)
Legal issues to consider
 Is my family member dealing with legal
issues?
 Does my family member have psychiatric
advance directives?
 Do I need a medical power of attorney for my
family member?
 Does my family member need a guardian of
person or of property?
 Consider Family and Medical Leave ACT
(FMLA)
Some specific examples
 Family with a young person with new
onset psychosis
 Family with a spouse with a relapsing and
remitting illness
 Family with an elderly person with
dementia
A family with a young adult with
schizophrenia
 Example: Robert is 19 years old. He did pretty well in
school and was a good football player. He received a
scholarship to a small college. Over the first semester
his mother noticed he was not returning her calls and
when she did speak with him the conversation was
sometimes odd. When he came home for
Thanksgiving he had lost considerable weight,
isolated himself in his room and was noted to be
talking to himself. He was extremely concerned about
a new security system the family had installed and
asked repeated questions about whether it was being
used to spy on him. He also announced that he was
quitting football.
 What can Robert’s parents do now?
 What can they expect? What does this
diagnosis mean for his future?
 What do they need to know?
 Where can they go to for help?
 What sort of approaches will help Robert
to have the sort of life that he wants and
that his parents want for him?
A spouse with recurring
psychiatric symptoms
 Mrs. Jones is a 42 year old married woman who is
diagnosed with bipolar disorder, which developed
when she was 23, around the time of the birth of her
first child. She has had several subsequent
hospitalizations (mostly for severe depressions) but
has generally done well, been employed and active
in her community. She has taken lithium
consistently but has begun to develop some
medication-related kidney problems and has been
switched to another medication. Her husband
notices that she is not sleeping much at night, is
talking quickly, has rearranged all of the furniture in
the house twice this week, and has overdrawn their
checking account.
 What might be happening? And how can
this be addressed?
 How can her husband help her? What
might better enable him to help her?
 What might they have planned in
advance to make things easier?
Person caring for a parent
with dementia
 Mrs. Smith has had memory difficulties
for several years and was recently
diagnosed with Alzheimer’s dementia.
She is no longer able to drive and is not
safe in the kitchen as she leaves the
stove on. She sometimes has difficulty
putting her clothing on correctly, forgets
whether she has eaten lunch and often
misplaces her telephone.
 What decisions do she and her family
need to make?
 If she goes to live with a family member,
what sort of care might she need?
 What interventions might help make
things easier?
 If Ms. Smith suddenly seems much more
confused and disorganized, what might
be the cause?
What about you?
Stress and burnout
 There are few things more draining or
stressful than caring for a family member with
mental illness
 Family caregivers may experience burnout,
emotional exhaustion and compassion fatigue
 Causes of emotional exhaustion include
excessive work, time pressures, uncertainty
as to what to do, inadequate resources,
challenges in working with family member
and the system
Stress-related problems in
caregiver
 Health problems
 Decreased self esteem
 Decreased effectiveness
 Social isolation
 Lack of a sense of meaning or purpose
 Anger, frustration, irritability
 Lack of pleasurable activities
Stress
 How would other people know when you
are stressed?
 How do you deal with stress? What
works? What does not work?
 How do you know when you are
becoming overwhelmed?
Approaches to stress
 Talk with someone
 Get additional education about the illness
with which your relative is diagnosed or
about ways to deal with stress
 Relaxation and mindfulness
 Physical exercise
 Importance of the narrative - telling the
story
Approaches to stress
 Hobbies and things we enjoy
 Incorporating spiritual practices into daily
living
 Focusing on positive qualities, strengths
and abilities (in yourself as well as in your
family member)
 Reminders of meaning and purpose
Final Point
 There are many studies which make it clear
that for people with serious mental illness one
of the most important factors for good
prognosis is family involvement
 Even though you may sometimes feel
frustrated or unappreciated, if you are caring
for a family member with mental illness, you
are doing very important work.
 And your family member is likely to have a
better life because of you.
Your Thoughts?
 Comments
 Questions
 Additions
 Things you want to share
Some sources for more
information
 National Institute of Mental Health
 www.nimh.nih.gov/health
 Alzheimer’s Association
 www.alz.org/maryland
 1850 York Rd Ste D Timonium, MD
 Helpline 1-800- 272-3900
 National Alliance on Mental Illness
 www.nami.md.org
 5210 York Rd. Baltimore, MD
 410-435-2600
 Al-Anon Baltimore
 www.alanon-maryland.org
 P.O. Box 28259 Baltimore, MD
 410-832-7094