Caregiving for Older Caregiving for Older AdultsAdults

Peter A. Lichtenberg, Ph.D.Institute of Gerontology & Merrill Palmer

Skillman Institute87 E. Ferry StreetDetroit, MI 48202

p.lichtenberg@wayne.edu

Overview of Caregiving Overview of Caregiving SessionSession

•Basic Caregiver facts•Caregiving as a chronic

stressor•Caregiver Transitions•Caregiver Assessment

Caregiver FactsCaregiver Facts

• 69 million people in 23 million households provided care for ill member

• 80% care recipients over 50 years old

• 65% recipients women• 42% widowed• Billions lost in work productivity

Caregiving as a source of Caregiving as a source of chronic stress: Richard chronic stress: Richard

SchulzSchulz• Psychological strain for long

periods• High vigilance• High unpredictability and

uncontrollability• Transitions make caregiver

vulnerable to depression

Caregiving as New Caregiving as New Identity: Rhonda Identity: Rhonda

MontgomeryMontgomery• Caregiver role emerges from existing role• Social roles, cultural values influence who is

caregiver (e.g. daughters or daughters in-law)• As care recipient needs increase caregiver

behavior& View of role change• Role identity changes (i.e view self as

caregiver) and for care recipient (view as changed)

Major themes Major themes embedded in Caregivingembedded in Caregiving•Changes in Reciprocity•Grief and Loss•Types of Disruption•Methods of Coping

Caregiving careerCaregiving career

•Caregiving history must be assessed

•Multiple experiences as a caregiver

•Often poor at attending to own needs

Who are the caregivers?Who are the caregivers?

•Spouse•Child•Friends•Formal help

Caregiver Statistics: CDC Caregiver Statistics: CDC 20102010

Typical Caregiver46 year old woman provides 20+ hours of

care to motherAverage out of pocket expenses $5,000+30% report trouble managing physical and/or

emotional stress53% report decline in health50+% say don’t go to doctor (time and

fatigue

Caregiving facts cont.Caregiving facts cont.

•Greater burden when care recipient demented.

•Caregivers rarely used community services.

•More burden for those with a relative at home vs. institution.

When the caregiver is a When the caregiver is a spousespouse

• Typically live in same household and thus hands on care is higher

• Typically do not utilize available services/supports

• Older, thus health problems more likely

• 5 year f/u study 63% higher risk of death than non caregivers

Types of Caregiving: Types of Caregiving: Burton et al. 2003, vol 43, Burton et al. 2003, vol 43,

230-241230-241• 5 year study: 3 groups• Noncaregivers• Moderate Caregivers (IADL help

only—driving, meds, finances)• Heavy Caregivers (ADL help as

well– bathing, dressing, grooming, toileting, transferring)

Health and Caregiving Health and Caregiving TransitionsTransitions

• Health risk doubled during transition to heavy caregiving

Experience of Adult Experience of Adult ChildrenChildren

• Less hands on caregiving, but multiple demands—own family, work, older parents

• High levels of coordinating care• High stress—loss of parental relationship

difficult• Past relationship tensions can make

caregiving more ambivalent• Life disruption: work, financial strain,

moving parent into own home or new setting

The Greatest Cost is The Greatest Cost is SocialSocial

At the office, “I was physically present, but I was really preoccupied... It really did dominate my life for a couple years.”

Michele OchsnerRutgers University Professor and

long distance caregiver. Author: The toughest thing I ever did

Still dealing with both Still dealing with both parentsparents

One year before my mother died of Alzheimer’s, my dad was diagnosed with cancer. He ignored the symptoms for months because he was too busy caring for my mom and looking after his own mother as well. I am convinced Alzheimer’s caused my dad’s death as well as my mother’s.

NFCA SurveyNFCA SurveyHow has caregiving affected How has caregiving affected

spouses and childrenspouses and children

Frustration 67%Anxiety 35%Sadness 37%

NFCA SurveyNFCA SurveySubjective OutcomesSubjective OutcomesPositivePositive

NegativeNegative• Headache27%• Stomach ache 24%• Back ache 41%• Sleeplessness 51%

• Depression 61%

Closer relationship 36%

Proactive skills 34%

Inner strength 70%

NFCA SurveyNFCA SurveyCaregiving difficultiesCaregiving difficulties

• Sense of isolation 43%• Making major life decisions

33%• Loss of personal/leisure time 36%• No consistent help from others 76%

Stages of CaregivingStages of CaregivingStage I. DetectionStage I. Detection

• Most commonly recalled symptoms:

Memory loss and confusion62%

Work related problems/personality change (apathy, anger, depression) 20%

Problems related to driving 13%

What happens when What happens when Diagnosis is sharedDiagnosis is shared

• Carpenter et al. 2008• Studied 90 pairs: caregivers were

spouses (61%) and children (22%)• Diagnostic disclosure preferences: Patients and caregivers wanted to know;

¾ wanted other children to know; less than ½ wanted other family to know

Anticipated Changes Anticipated Changes and Worriesand Worries

• Driving (40%)• Work (12%)• Relocation (31%)• Firearms (50%)• Being treated differently (40%)• Social limitations (31%)• Needing care 50%

What actually happenedWhat actually happened

•Depression and anxiety remained stable or decreased after feedback

•1/3 patients mis-remember what physician says (taped session)

Further experiences of Further experiences of the person with early ADthe person with early AD• Not disagree about symptoms but

underestimate severity of these• Variability of mood can be intense• Trying to cope with “being valued vs.

being worthless”• Uncertainty/greater loss of sense of

control and ideas about future self

When reaction is more When reaction is more severesevere

•Internal states: mood, hopelessness/despair, suicidal thoughts more likely during early dementia

For CaregiversFor Caregivers•Elicit preferences of care

recipient: who should help, what type of help

•Reassurance•Redirection

Importance of Self Importance of Self Identifying as caregiverIdentifying as caregiver

•Recognition that relationship reciprocity has changed dramatically

•Gradually taking charge of another persons life

Stage II: Current Stage II: Current caregivingcaregiving

• Behaviors reported as stressful• Increased dependency• Declining Memory• Changes in sleep wake cycle• Hiding things• Suspiciousness toward caregiver• Apathy• Verbal and Physical violence• Incontinence• Depression• Wandering

Common Care Giver Common Care Giver ReactionsReactions

• Anger• Guilt• Fatigue• Depression• Conflict with family• Loss of friends or hobbies• Isolation• Decline in own health• Agony over deciding to place in nursing home.

Stage II: InterventionsStage II: Interventions

• Multi Modal Approach may be best• Support• Respite• Intervention to Caregiver health

(stress management, mood)• Specific techniques to manage

unwanted behaviors

Agitation: Jiska Cohen Agitation: Jiska Cohen Mansfield, Ph.D.Mansfield, Ph.D.

Cohen-Mansfield, J. & Martin, L.S. (1999) Assessment of Agitation in Older Adults in P.A. Lichtenberg Handbook of Assessment in Clinical Gerontology. John Wiley and Sons

Analysis of Agitation is Analysis of Agitation is based on the followingbased on the following

Who determines if this is a problem behavior

Behavior not necessarily disruptive (withdraw)

Behavior is not necessarily dementia related

Problem is an observable behavior and not assume any underlying state

Subtypes of AgitationSubtypes of Agitation

Physically Aggressive (pushing, sexual advances)

Verbally Aggressive (cursing, sexual statements)

Physically non-Aggressive (hoarding, disrobing)

Verbally non-aggressive (complaining, constant unwarranted requests)

Assessment Item Assessment Item ExamplesExamples

• Aimless wandering• Disrobing• Spitting• Cursing• Constant request• Repetition• Hitting• Kicking

• Grabbing• Pushing• Throwing things• Strange Noises• Screaming• Biting• Falling• Hiding things

General Model for General Model for TreatmentTreatment

• Agitation in is conceptualized as resulting from unmet needs

• Imbalance in interaction of lifelong habits and personality, physical and mental states and less than optimal environmental conditions

Examples of Meaning of Examples of Meaning of Agitated BehaviorsAgitated Behaviors

•Expression of Frustration•Unmet need (e.g. Pain)•Instrumental (soliciting

help)

Guiding Principles for Guiding Principles for Agitation TreatmentAgitation Treatment

• Must know the person– history• Assess and emphasize relevant

strengths• Interdisciplinary communication• Individualized strategies focused on

reducing behavioral disturbance• Solutions do not always last forever

Stage III: Transitional Stage III: Transitional CaregivingCaregiving

• Predictors of long term placement Physical care needed (e.g. Incontinence). Severe sleep disturbance and health decline. Dangerous behaviors – aggression, wandering. Caregivers own health

• Caregiver adjustment Depression 60% Intense grief reaction Health problems

Stage III: Transitional Stage III: Transitional CaregivingCaregiving

•Reported reactionsGuilt and failureLonelinessIdentity

Post transition Post transition experienceexperience

•Depressive problems continue at highest levels for spouses, those who visit most often

•Caregiver’s satisfaction with support from family and friends is protective

Learning a New Learning a New OrganizationOrganization

•Long Term Care—often a dysfunctional system

•High isolation among levels of staff and high conflict

•Often an unwelcoming attitude toward family caregivers

Stage III: Transitional Stage III: Transitional Caregiving Possible Caregiving Possible

interventionsinterventions• Emotional support• Obtain a sense of control• Acceptability of long term care

facility• Acceptance of the situation• Receiving permission

Stage IV: Post Stage IV: Post caregivingcaregiving

• 76% death was a relief to care recipient

• 72% death was relief to caregiver• 31% not at all prepared for the death• Chance to rest• Recuperate health• Reduction in depression• Caregiving strain relates to

bereavement