Caregiver Burnout Presentation, Epilepsy Education Exchange 2014
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Transcript of Caregiver Burnout Presentation, Epilepsy Education Exchange 2014
CAREGIVER STRESS
IN EPILEPSY
Jaime Spinell Zuckerman, Psy.D.
Licensed Clinical Psychologist November 1, 2014
“The passage through the states of
caregiving tends to permanently alter
the trajectory of the life-course,
detouring caregivers towards alternate
routes and destinations.”
Caregivers
There are only four kinds of people in
this world:
Those who have been caregivers,
Those who currently are caregivers,
Those who will be caregivers, and
Those who will need caregivers.“
Rosalynn Carter
What is caregiving?
care·giv·er
Pronunciation: \-ˌgi-vər\
Function: noun
: a person who provides direct care
(as for children, elderly people, or the
chronically ill)
— care·giv·ing \-ˌgi-viŋ\ noun
What is stress?
Any change that necessitates
adaptation.
The response to this change
determines the impact stress can have
on your life
Caregiving: What it really
means
Love
Sacrifice
Sorrow
Reward
Resentment
Loss
Transition
Guilt
Anger
Empowerment
Family
Revising our definition of
“caregiving”
“When one becomes a caregiver, one frequently
finds that the entirety of one’s life has been
restructured, both its social exterior and its
psychological consequences.”
How epilepsy is unique?
AD:
Relatively known course of illness
Predictability
Age of onset
More resources available
Seizure Disorder:
Course uncertain
Waiting for “when.”
Caregivers’ roles constantly vary
Age of onset
This can be a full time job
Routinely making special
arrangements with the “team,”,
therapists, and so on.
Structured, safe household
Foods
Places
Some quick facts related to
caregiving
Family caregivers who provide care
36 or more hours weekly are more
likely than noncaregivers to
experience symptoms of depression
or anxiety. For spouses the rate is six
times higher; for children caring for
the parent the rate is twice as high.
Cannuscio, C.C., Jones, C., Kawachi, I., Colditz, G.A., Berkman, L., & Rimm, E. (2002). Reverberation of family illness: A longitudinal assessment of informal caregiver and mental health status in the nurses’ health study. American Journal of Public Health (92), 305-1311.
Caregiving as a Career
“The caregiving career, therefore, is not
static: In addition to the present, each
phase embodies a history and
foreshadows a future”
Aneschensel et al. Profiles in caregiving (1995).
You don’t get to leave your
office
You can’t just “turn it off”
Huge emotional cost. Over time, this
can lead to a form of caretaker
"burnout." For many, having respite --
a chance to get away from home
even for a few hours a week -- can
help reduce the effects of stress.
BUT……….
Often, caretakers continue to worry
about day-to-day responsibilities even
during their brief hours of respite.
When this happens, they can
experience a drain on emotional well-
being that may impact them for some
time to come.
Are you stressed?
THE ZARIT BURDEN INTERVIEW
22 items; 0,1,2,3,4 (total of 88 points)
Never, Rarely, Sometimes, Quite Frequently,
Nearly Always
Interpretation of Score:
0 – 21 little or no burden
21 – 40 mild to moderate burden
41 – 60 moderate to severe burden
61 – 88 severe burden
© 1983 Steven Zarit
SO what do we do?
Limit this emotional cost.
Admit that you will be affected.
Admit you MAY need help
Know what to look for
Components of Stress
1. Physiological
Based on central nervous system arousal
2. Cognitive
Thoughts, self-statements, images
associated with perceived danger and
uncontrollability
3. Behavioral
Escape, avoidance or disruption of
performance
*The way these three components interact
account for spiraling effects of panic and
anxiety
Craske, Meadows & Barlow (1994)
Here is what we look for
Physical
Feeling exhausted or lacking energy
Having problems breathing or chest
pains
Increasing or high blood pressure
Racing heart rate
Grinding teeth during the day or at night
Here is what we look for
Thinking
Looking to blame situations or others
Having problems making decisions
Feeling out-of-control
Feeling confused
Having memory problems, confusion or
poor attention
Changing alertness
Here is what we look for
Emotional
Feeling anxious or guilt and/or grief
“I can’t do this on my own”
“I am not a good wife/mother/sister/brother.”
“I am angry at my father/mother”
Resentment
Feeling fatigue and agitated at the same
time
Struggling with hopelessness or
helplessness
Increasing irritability, fear, or intense anger
Here is what we look for
Behavioral
Withdrawing from others
Unable to partake in daily tasks/chores
Laundry
Cooking
Self-care
Finances
Decisions put on hold
Eating more or less than usual
Increasing use of alcohol
Sleeping problems including insomnia and
nightmares
Common Psychological Symptoms
Associated with Caregiver Stress
Depression
Helplessness
Hopelessness
Anxiety
Additional Symptoms Associated
with Caregiver Stress
Conflict with
spouse/children/extended family
Family gatherings become
strained
Abuse
Shame
Substance Abuse
Physical Illness
Caregiving and Depression
Common in response to constant
demands of being a caregiver
Caregiving does not cause
depression BUT caregivers often
sacrifice their own physical and
emotional need
Can manifest in various ways
Caregiving and Depression
Person who provides care for
someone with a physical
illness may be more likely to
suffer from depression.
Women experience
depression at a higher rate
than men
Caregivers and Depression:
More on Warning Signs!
Sadness and crying that won’t go away
Increased irritability
Ongoing fights with family members and
friends
Physical sickness
Ongoing headaches, digestive problems,
chronic pain
Change in sleep and eating patterns
Loss of interest in people/activities you
once enjoyed
Caregivers and Depression:
Look for Warning Signs!
Feel need to hurt/yell at the person
you care for
Depend too much on alcohol or drugs
Prescribed pills
Increased inability to properly care
for self
ADLs
Shopping, bill paying, cleaning, f/u
appointments
Caregivers and Depression:
Look for Warning Signs!
Important to consider
manifestation of depressive
symptoms based on gender
Male caregivers deal with
depression differently
Less likely to admit and get
diagnosed
More likely to self-treat
Fewer support people
Coping Mechanisms to Deal with
Depressive or Anxious Symptoms:
PMR
Breathing Retraining
Guided Imagery
Proper nutrition
Exercise
Scheduling of pleasurable events
Interpersonal Psychotherapy
Medication
Coping Mechanisms to Deal with
Depressive or Anxious Symptoms:
Cognitive Behavior Therapy
Play detective or scientist
Daily Mood/Activity Records
Thought-Tracking Forms
Overcome negative self-talk: “both/and” thinking
Dichotomous thinking
Ask for the help you need
Accept help that is offered
What does it mean to you as a person to need to ask
for help?
You can’t ‘fix’ this!
Recognize and accept that you have the RIGHT to
time off
Practical Strategies to
Reduce Caregiver Stress:
Check in on your physical health
Sleep changes
Appetite changes
Aches/pains
Headaches
Stomach
Joints
Fatigue
Communicate with your physician
Ask questions, record important
information, bring family members with
you to appointments or sit in on phone
calls
Practical Strategies to
Reduce Caregiver Stress:
Make a list of all individual caregiving-
related tasks for the purpose of
delegating
Utilize all aspects of your social support
network!
Identify tasks that are easier to ask for
help with than others:
Running Errands
Household Chores
Providing occasional meals
Carpooling/babysitting
Practical Strategies to
Reduce Caregiver Stress:
Gather information from your HR office
(Family and Medical Leave Act)
Keep an emergency contact list with
you at work of information, doctors
and resources
Practical Strategies to
Reduce Caregiver Stress:
Continue (but revise) family holidays,
celebrations and cultural/family
rituals
Need for ongoing human connections
and support!
predictability rather than ambiguity.
Importance of planning for the future,
as this leads to new things to hope
for
From a TV show you enjoy every Friday
to a scheduled outing once per month
with a friend
Areas of Consideration
within the Family Unit
Revision of family roles
Traditional roles/unspoken rules
Across generations
Awareness of family rules
“We will always take care of our
family.”
Are certain family members
‘excused’ from caregiving and
why?
Not a “One Size Fits All
Approach”
We must take into consideration caregivers’
unique characteristics when implementing or
offering caregiver programs with the goal of
reducing burden:
Cultural/Personal Factors
Who is caretaker? (adult child vs. spouses)
Resiliency of caretaker
Education of disease process
Race, sex, gender, level of acculturation
Needs differ based on
Financial situation
Employment situation
Education
Existing support network
Culture
Ask For Help!!!
Take steps before you reach a crisis point.
The Catch-Up game
Asking for help does NOT make you WEAK
..
Build
yourself
a safety
net…
Overview of Various Types of
Caregiver Support and Interventions:
Workshops
Support Groups
Psychoeducational Groups
Psychologist
Psychiatrist
Problem Solving Skills Groups Individual
Counseling and Behavioral Training
Family Therapy
Care coordination/management
Technological support (Teleconference,
internet)
The past is in our memories, the future
in our dreams, the present is our only
reality.
Don’t let stress steal from you the
present moment.
LET IT GO, LET IT GO, RELAX, RELEASE
AND REVIVE