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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
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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.
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80% of all long-term care is provided in the home by Spouses Parents Children
Agency for Healthcare Research and Quality, 2000
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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
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Today 50% of people > 85 yr have a form of dementia
Aging baby boomers
Longer life spans
More chronic, debilitating diseases
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Who is going to provide care?
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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)
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VA recognizes role of caregivers in care of veterans
Focus for HSR&D research
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Love and devotion
Sense of dutyConcerns about
finances
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GuiltProvide
meaningPromises made
in the past‘Merge’ into it
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Caregiving is stressful
Caregiving is stressful
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Change in living situation to accommodate family member
Who is going to move?Economic hardships
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Multiple roles and responsibilities
Juggling Day-to day activities
Decisions Caregiving
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Family conflicts Who makes decisions? Families often communicate very
little about important issues
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Inability to meet personal self-care needs Sleeping, eating, exercise, rest Socialization - eventually become isolated
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Changing Roles and Relationships Original roles of patient•Can no longer be managed by that individual
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Caregivers do not have relief or respite from their responsibilities
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Continuous losses and changes
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Feelings that one has unwittingly become captive of an unwanted role
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Do I look stressed??
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PerceptionAbility to copeDemands (stressors)
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Effects of Stress
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Elevated heart rate Dry mouth Muscle tremors Sweating Nausea, upset stomach Difficulty breathing
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AnxietyDepressionAnger Frustration Fear
Hopelessness
Irritability Denial Guilt
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Being very quiet Withdrawal Being unusually talkative Increased drinking Change in eating habits Interpersonal conflicts
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• Increased colds, flu• Increased other infections• Cancer?• Premature death
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Short-term memory problemsPoor concentration and rational
thought (accident prone) Increased fatigue and angerSleep disturbances
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HypertensionHeart attacksStrokesIncreased blood cholesterol
levels
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HeadachesChronic pain may increase
Muscle tension Migraines
Back pain
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Dyspepsia Irritable bowel syndromeDiarrheaConstipation
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State of emotional and physical exhaustion
Caused by excessive and prolonged stress
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Occurs when you feel overwhelmed and unable to meet demands
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Do not want to be a burden
Fear of being rejectedDo not know how to
ask for help
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May not want helpMay be in a state of
denialFeel family and
friends are busy with their own lives
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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
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Hidden Heroes in Need of HelpHidden Heroes in Need of Help
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Stress-Busting Program for caregivers of persons
with Alzheimer’s and Parkinson’s diseases
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Psychoeducational support groups
9 weeks1 ½
hours/week
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Stress and RelaxationCoping SkillsGrief, Loss, and DepressionDealing with Challenging
BehaviorsPositive ThinkingTaking Time for YourselfChoosing a Path of Wellness
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Stress Management Techniques:•Relaxation
breathing•Guided imagery•Meditation•Art therapy•Music therapy• Journaling
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Quality of life (Questionnaires)
Relaxation response (Biofeedback)
Immune (natural killer cells)Audio-taped interviews
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Stress-Busting Program for Family Caregivers:
The Results
Decreases in Improvements in
• Stress• Depression• Anger/Hostility• Anxiety
• Quality of life• Sense of control
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Stress-Busting Program for Family Caregivers:
The ResultsGave them permission to take care of themselves
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"I was at a very low point in my life.
The program saved me from going into
a deep depression….it saved my life."
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First step – identify them They are hidden patients
Assess the caregiver Assessment guide attached
Listen to their stories
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Ask if they need helpBe supportive and
encouragingEncourage them to care for
themselves
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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
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Summary