sharon l. lewis rn, phd, faan denise miner-williams rn, phd, chpn grecc audie l. murphy va hospital...
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Sharon L. Lewis RN, PhD, FAANDenise Miner-Williams RN, PhD, CHPN
GRECCAudie L. Murphy VA Hospital
May 28, 2009
Caring for the Caregiver is Caring for Your Patient
1. Describe the experience of family caregivers.
2. Describe how the stress of caregiving impacts family caregivers.
3. Describe outcomes of Stress-Busting Program for caregivers.
4. Identify ways for health care professionals to help family caregivers.
80% of all long-term care is provided in the home by Spouses Parents Children
Agency for Healthcare Research and Quality, 2000
Approximately 44 million Americans now provide care to a family member 22% of the U.S. population
30%
70%
Men
Women
National Alliance for Caregiving and AARP, 2004
Today 50% of people > 85 yr have a form of dementia
Aging baby boomers
Longer life spans
More chronic, debilitating diseases
Who is going to provide care?
Elderly CG with history of chronic illness: 63% higher mortality 1999 JAMA 282(23)
61% of ‘intense’ family CG have suffered depression
National Family Caregivers Assoc 1998 (Caregiving Across the Life Cycle)
¾ of spousal CG are ‘going it alone’
National Family Caregivers Assoc 1998 (Caregiving Across the Life Cycle)
VA recognizes role of caregivers in care of veterans
Focus for HSR&D research
Love and devotion
Sense of dutyConcerns about
finances
GuiltProvide
meaningPromises made
in the past‘Merge’ into it
Caregiving is stressful
Caregiving is stressful
Change in living situation to accommodate family member
Who is going to move?Economic hardships
Multiple roles and responsibilities
Juggling Day-to day activities
Decisions Caregiving
Family conflicts Who makes decisions? Families often communicate very
little about important issues
Inability to meet personal self-care needs Sleeping, eating, exercise, rest Socialization - eventually become isolated
Changing Roles and Relationships Original roles of patient•Can no longer be managed by that individual
Caregivers do not have relief or respite from their responsibilities
Continuous losses and changes
Feelings that one has unwittingly become captive of an unwanted role
Do I look stressed??
PerceptionAbility to copeDemands (stressors)
Effects of Stress
Elevated heart rate Dry mouth Muscle tremors Sweating Nausea, upset stomach Difficulty breathing
AnxietyDepressionAnger Frustration Fear
Hopelessness
Irritability Denial Guilt
Being very quiet Withdrawal Being unusually talkative Increased drinking Change in eating habits Interpersonal conflicts
• Increased colds, flu• Increased other infections• Cancer?• Premature death
Short-term memory problemsPoor concentration and rational
thought (accident prone) Increased fatigue and angerSleep disturbances
HypertensionHeart attacksStrokesIncreased blood cholesterol
levels
HeadachesChronic pain may increase
Muscle tension Migraines
Back pain
Dyspepsia Irritable bowel syndromeDiarrheaConstipation
State of emotional and physical exhaustion
Caused by excessive and prolonged stress
Occurs when you feel overwhelmed and unable to meet demands
Do not want to be a burden
Fear of being rejectedDo not know how to
ask for help
May not want helpMay be in a state of
denialFeel family and
friends are busy with their own lives
They may believe it is their duty to be a single provider of care
Some caregivers have an “I’ll do it myself” attitude.
They may be embarrassed by having a sick person in the family
Hidden Heroes in Need of HelpHidden Heroes in Need of Help
Stress-Busting Program for caregivers of persons
with Alzheimer’s and Parkinson’s diseases
Psychoeducational support groups
9 weeks1 ½
hours/week
Stress and RelaxationCoping SkillsGrief, Loss, and DepressionDealing with Challenging
BehaviorsPositive ThinkingTaking Time for YourselfChoosing a Path of Wellness
Stress Management Techniques:•Relaxation
breathing•Guided imagery•Meditation•Art therapy•Music therapy• Journaling
Quality of life (Questionnaires)
Relaxation response (Biofeedback)
Immune (natural killer cells)Audio-taped interviews
Stress-Busting Program for Family Caregivers:
The Results
Decreases in Improvements in
• Stress• Depression• Anger/Hostility• Anxiety
• Quality of life• Sense of control
Stress-Busting Program for Family Caregivers:
The ResultsGave them permission to take care of themselves
"I was at a very low point in my life.
The program saved me from going into
a deep depression….it saved my life."
First step – identify them They are hidden patients
Assess the caregiver Assessment guide attached
Listen to their stories
Ask if they need helpBe supportive and
encouragingEncourage them to care for
themselves
Have resources available: Offer them! Area Agency on Aging Family Support Program
Professional organizations (e.g., Alzheimer’s Association)
Social Work or counselor referral www.caregiver.org• Family Caregiver Alliance
Summary
