Caregiving for Older Adults Peter A. Lichtenberg, Ph.D.

Institute of Gerontology & Merrill Palmer Skillman Institute 87 E. Ferry Street Detroit, MI 48202 [email protected]

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

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

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

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)

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

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

Who are the caregivers?

• Spouse • Child • Friends • Formal help

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

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 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

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)

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

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

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

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.

NFCA Survey How has caregiving affected spouses and children  Frustration  Anxiety  Sadness 67% 35% 37%

NFCA Survey Subjective Outcomes Positive Negative Closer relationship 36% Proactive skills 34% Inner strength 70% • • • • Headache Stomach ache 24% Back ache 27% 41% Sleeplessness 51% • Depression 61%

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

Stages of Caregiving Stage 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%

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

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

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

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

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

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

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

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

• • • • • • • • • Common Care Giver Anger Reactions 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: 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 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 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

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)

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

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

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

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

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

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

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

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

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

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