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Caregiving for Older Adults

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@wayne.edu. Overview of Caregiving Session. Basic Caregiver facts Caregiving as a chronic stressor Caregiver Transitions

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Caregiving for Older Adults

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  1. 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@wayne.edu

  2. Overview of Caregiving Session • Basic Caregiver facts • Caregiving as a chronic stressor • Caregiver Transitions • Caregiver Assessment

  3. 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

  4. 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

  5. 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)

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

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

  8. Who are the caregivers? • Spouse • Child • Friends • Formal help

  9. 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 don’t go to doctor (time and fatigue

  10. 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.

  11. 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

  12. Types of Caregiving: Burton et al. 2003, vol 43, 230-241 • 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)

  13. Health and Caregiving Transitions • Health risk doubled during transition to heavy caregiving

  14. Experience of Adult Children • 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

  15. 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

  16. Still dealing with both parents 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.

  17. NFCA SurveyHow has caregiving affected spouses and children • Frustration 67% • Anxiety 35% • Sadness 37%

  18. Headache 27% Stomach ache 24% Back ache 41% Sleeplessness 51% Depression61% Closer relationship 36% Proactive skills 34% Inner strength 70% NFCA SurveySubjective OutcomesPositive Negative

  19. NFCA SurveyCaregiving difficulties • Sense of isolation 43% • Making major life decisions 33% • Loss of personal/leisure time 36% • No consistent help from others 76%

  20. 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%

  21. 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

  22. Anticipated Changes and Worries • Driving (40%) • Work (12%) • Relocation (31%) • Firearms (50%) • Being treated differently (40%) • Social limitations (31%) • Needing care 50%

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

  24. 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

  25. When reaction is more severe • Internal states: mood, hopelessness/despair, suicidal thoughts more likely during early dementia

  26. For Caregivers • Elicit preferences of care recipient: who should help, what type of help • Reassurance • Redirection

  27. Importance of Self Identifying as caregiver • Recognition that relationship reciprocity has changed dramatically • Gradually taking charge of another persons life

  28. 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

  29. 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.

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

  31. 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

  32. 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

  33. 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)

  34. Aimless wandering Disrobing Spitting Cursing Constant request Repetition Hitting Kicking Grabbing Pushing Throwing things Strange Noises Screaming Biting Falling Hiding things Assessment Item Examples

  35. 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

  36. Examples of Meaning of Agitated Behaviors • Expression of Frustration • Unmet need (e.g. Pain) • Instrumental (soliciting help)

  37. 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

  38. 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

  39. Stage III: Transitional Caregiving • Reported reactions • Guilt and failure • Loneliness • Identity

  40. Post transition experience • Depressive problems continue at highest levels for spouses, those who visit most often • Caregiver’s satisfaction with support from family and friends is protective

  41. Learning a New Organization • Long Term Care—often a dysfunctional system • High isolation among levels of staff and high conflict • Often an unwelcoming attitude toward family caregivers

  42. 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

  43. 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

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