. Sharon L. Lewis RN, PhD, FAAN Denise Miner-Williams RN, PhD, CHPN GRECC Audie L. Murphy VA Hospital May 28, 2009 Caring for the Caregiver is Caring for.

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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

Denise [email protected]

Sharon [email protected]

210-949-3696