An important overview to managing life as a caregiver for someone with epilepsy.

1. Caregiver Stress in
Epilepsy
Jaime Spinell Zuckerman, Psy.D.
Licensed Clinical Psychologist November 1, 2014

2. “The passage through the states of
caregiving tends to permanently alter
the trajectory of the life-course,
detouring caregivers towards alternate
routes and destinations.”

3. 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

4. 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

5. What is stress?
Any change that necessitates
adaptation.
The response to this change
determines the impact stress can have
on your life

6. Caregiving: What it really
means
 Love
 Sacrifice
 Sorrow
 Reward
 Resentment
 Loss
 Transition
 Guilt
 Anger
 Empowerment
 Family

7. 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.”

8. 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

9. This can be a full
time job
 Routinely making special arrangements with
the “team,”, therapists, and so on.
 Structured, safe household
 Foods
 Places

10. 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.

11. 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).

12. 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……….

13.  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.

14. 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

15. 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

16. 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)

17. 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

18. 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

19. 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

20. 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

21. Common Psychological
Symptoms Associated with
Caregiver Stress
Depression
Helplessness
Hopelessness
Anxiety

22. Additional Symptoms
Associated with Caregiver
Stress
Conflict with
spouse/children/extended family
Family gatherings become
strained
Abuse
Shame
Substance Abuse
Physical Illness

23. 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

24. 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

25. 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

26. 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

27. 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

28. Coping Mechanisms to Deal
with Depressive or Anxious
Symptoms:
 PMR
 Breathing Retraining
 Guided Imagery
 Proper nutrition
 Exercise
 Scheduling of pleasurable events
 Interpersonal Psychotherapy
 Medication

29. 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

30. 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

31. 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

32. 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

33. 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

34. 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?

35. 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

36. Ask For Help!!!
 Take steps before you reach a
crisis point.
 The Catch-Up game
 Asking for help does NOT make
you WEAK

37. ..
Build
yourself
a safety
net…

38. 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)

39. 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