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