Caregiving for Older Adults

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Caregiving for Older Adults

• Peter A. Lichtenberg, Ph.D.
• Institute of Gerontology Merrill Palmer
  Skillman Institute
• 87 E. Ferry Street
• Detroit, MI 48202
• p.lichtenberg_at_wayne.edu

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Overview of Caregiving Session

• Basic Caregiver facts
• Caregiving as a chronic stressor
• Caregiver Transitions
• Caregiver Assessment

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Caregiver 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

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Caregiving as a source of chronic stress Richard
Schulz

• Psychological strain for long periods
• High vigilance
• High unpredictability and uncontrollability
• Transitions make caregiver vulnerable to
  depression

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Caregiving as New Identity Rhonda Montgomery

• 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)

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Major themes embedded in Caregiving

• Changes in Reciprocity
• Grief and Loss
• Types of Disruption
• Methods of Coping

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Caregiving career

• Caregiving history must be assessed
• Multiple experiences as a caregiver
• Often poor at attending to own needs

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Who are the caregivers?

• Spouse
• Child
• Friends
• Formal help

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Caregiver Statistics CDC 2010

• Typical Caregiver
• 46 year old woman provides 20 hours of care to
  mother
• Average out of pocket expenses 5,000
• 30 report trouble managing physical and/or
  emotional stress
• 53 report decline in health
• 50 say dont go to doctor (time and fatigue

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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.

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When the caregiver is a spouse

• 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

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Types of Caregiving Burton et al. 2003, vol 43,
230-241

• 5 year study 3 groups
• Noncaregivers
• Moderate Caregivers (IADL help onlydriving,
  meds, finances)
• Heavy Caregivers (ADL help as well bathing,
  dressing, grooming, toileting, transferring)

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Health and Caregiving Transitions

• Health risk doubled during transition to heavy
  caregiving

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Experience of Adult Children

• Less hands on caregiving, but multiple
  demandsown family, work, older parents
• High levels of coordinating care
• High stressloss 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

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The Greatest Cost is Social

• At the office, I was physically present, but I
  was really preoccupied... It really did dominate
  my life for a couple years.
• Michele Ochsner
• Rutgers University Professor and long distance
  caregiver. Author The toughest thing I ever did

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Still dealing with both parents

• One year before my mother died of Alzheimers,
  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 Alzheimers caused
  my dads death as well as my mothers.

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NFCA SurveyHow has caregiving affected spouses
and children

• Frustration 67
• Anxiety 35
• Sadness 37

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NFCA SurveySubjective OutcomesPositive Negati
ve

• Headache 27
• Stomach ache 24
• Back ache 41
• Sleeplessness 51
• Depression 61

• Closer relationship 36
• Proactive skills 34
• Inner strength 70

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NFCA SurveyCaregiving difficulties

• Sense of isolation 43
• Making major life decisions 33
• Loss of personal/leisure time 36
• No consistent help from others 76

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Stages of CaregivingStage I. Detection

• Most commonly recalled symptoms
• Memory loss and confusion 62
• Work related problems/personality change (apathy,
  anger, depression) 20
• Problems related to driving 13

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What happens when Diagnosis 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

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Anticipated Changes and Worries

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

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What actually happened

• Depression and anxiety remained stable or
  decreased after feedback
• 1/3 patients mis-remember what physician says
  (taped session)

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Further experiences of the 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

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When reaction is more severe

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

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For Caregivers

• Elicit preferences of care recipient who should
  help, what type of help
• Reassurance
• Redirection

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Importance of Self Identifying as caregiver

• Recognition that relationship reciprocity has
  changed dramatically
• Gradually taking charge of another persons life

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Stage II Current caregiving

• 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

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Common Care Giver Reactions

• 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.

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Stage II Interventions

• Multi Modal Approach may be best
• Support
• Respite
• Intervention to Caregiver health (stress
  management, mood)
• Specific techniques to manage unwanted behaviors

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Agitation Jiska Cohen 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

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Analysis of Agitation is based 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

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Subtypes of Agitation

• Physically Aggressive (pushing, sexual advances)
• Verbally Aggressive (cursing, sexual statements)
• Physically non-Aggressive (hoarding, disrobing)
• Verbally non-aggressive (complaining, constant
  unwarranted requests)

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Assessment Item Examples

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

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

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General Model for Treatment

• 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

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Examples of Meaning of Agitated Behaviors

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

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Guiding Principles for Agitation 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

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Stage III Transitional Caregiving

• 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

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Stage III Transitional Caregiving

• Reported reactions
• Guilt and failure
• Loneliness
• Identity

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Post transition experience

• Depressive problems continue at highest levels
  for spouses, those who visit most often
• Caregivers satisfaction with support from family
  and friends is protective

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Learning a New Organization

• Long Term Careoften a dysfunctional system
• High isolation among levels of staff and high
  conflict
• Often an unwelcoming attitude toward family
  caregivers

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Stage III Transitional Caregiving Possible
interventions

• Emotional support
• Obtain a sense of control
• Acceptability of long term care facility
• Acceptance of the situation
• Receiving permission

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Stage IV Post caregiving

• 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