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Caregiving for the Seriously Ill: Overview and Impacts

This overview by Richard Schulz, PhD, highlights the complexity of caregiving for seriously ill individuals and the impact on caregivers’ physical, emotional, and financial well-being. It discusses the challenges, role demands, and individual variations in the caregiving experience, emphasizing the financial risks and health effects associated with caring for high-need patients. The data presented shed light on the critical role of family caregivers in providing long-term services and support.

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Caregiving for the Seriously Ill: Overview and Impacts

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  1. Caregiving for the Seriously Ill: Overview and Impacts Richard Schulz, PhD Distinguished Service Professor of PsychiatrySchool of MedicineUniversity of Pittsburgh

  2. Family Caregiving is an Important Public Health Issue • 18 million caregivers of older adults • Economic value of family caregivers' unpaid contributions was at least $234 billion in 2011 • Growing gap between need/desire for family care and availability • Adverse impacts on caregiver: economic, psychiatric and physical morbidity, quality of life

  3. Caregiver Role is Complex and Demanding • Family caregivers have always been the primary providers of older adults’ long-term services and supports such as: • Household tasks and self-care (getting in and out of bed, bathing, dressing, eating, or toileting) • Tasked with managing difficult medical procedures and equipment in older adults’ homes, overseeing medications, and monitoring symptoms and side effects, and navigating complex health and LTSS systems • Including health care services that, in the past, were delivered only by licensed health care personnel (injections, IVs) • And, often, without training, needed information, or supportive services

  4. Impact of Caregiving is Highly Individual and Dependent on Personal and Family Circumstances • For some, caregiving instills confidence, provides meaning and purpose, enhances skills, and brings the caregiver closer to the older adult • For many, it leads to emotional distress, depression, anxiety, and impaired physical well-being • Intensity and duration of caregiving and the older adult’s level of impairment are consistent predictors of depression or anxiety • Other risk factors for adverse effects: • low socioeconomic status • high levels of perceived suffering of the care recipient • living with the care recipient • lack of choice in taking on the caregiving role, poor physical health of the caregiver • lack of social support • physical home environment that makes care tasks difficult

  5. Financial Risks of Caregiving • Loss of income, Social Security and other retirement benefits, and career opportunities if they have to cut back on work hours or leave the workforce • Substantial out-of-pocket expenses that undermine their own future financial security • Most vulnerable are women, those with low income, persons who live with or far from care recipient, those with limited work flexibility

  6. Care Trajectory: Tasks and Health Effects Placement SporadicCare Initiate IADL Care Expand toADL Care Death

  7. High Need/High Cost Patients and Their Caregivers Figure 1. Three Overlapping Patient Populations and Proportion w/at Least One Unpaid Caregiver (CG)* CHRONIC CONDS = at least 3 chronic conditions and 1ADL/IADL limitation; dementia excluded as chronic condition END OF LIFE = died within 1 year of baseline assessment DEMENTIA = diagnosis of probable dementia NONE OF THE ABOVE24.1 million, 67% w/CG CHRONIC CONDS 6.7 million 78% w/CG END OF LIFE 440,000 75% w/CG 433,000 83% w/CG 290,000 97% w/CG 1.35 million 89% w/CG 190,000 89% w/CG DEMENTIA 1.7 million 83% w/CG Source: National Health and Aging Trends Study (NHATS, 2011, N=7609); non-institutionalized U.S. older adults aged 65 and over, 35.3 million, weighted population estimates.

  8. High Need/High Cost Patient Caregiver Impacts* *Compared to caregivers of low need patients; Schulz et al., J. of Palliative Medicine, 2018 More hours of care (1/3 report >100 hours per month) Provide help with more types of tasks Increased caregiver psychological and physical morbidity Increased financial strain (e.g., out-of-pocket expenditures, labor force participation)

  9. Percent with Unmet Needs: Low and High Need Patients Beach et al., JAGS,2017

  10. High Need/High Cost Patient Unmet Needs • Multiple Chronic Conditions (MCC): • Wet or soiled clothing; go without bathing, getting dressed, having to say in bed, stay inside, have limited mobility in home, and go without hot meals • Persons with Dementia (DEM): • Wet or soiled clothing; bed bound, limited mobility in home • End of Life (EOL): • Limited mobility in home; went without clean laundry

  11. Contact: schulz@pitt.edu Work supported by: NIH (NIA, NINR) Stern Family Foundation Pittsburgh Foundation

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