1. Courtney Harold Van Houtven, PhD, MSc
Spillovers of Family Caregiving for Persons with Serious Illness: Considerations for Policy
Courtney Harold Van Houtven, PhD, MSc
Professor, Department of Population Health Sciences, Duke University
Research Scientist, Health Services Research and Development, Durham VAMC

2. “Informal care” the primary source of help in the home for persons with serious illness
Families rarely plan for future long-term care (LTC) needs even though it is the biggest risk older adults face
LTC typically found in an emergency, w/ little understanding about how to select high quality care.
Nearly 90% of older adults w/ serious illness receive help exclusively from family and friends
Caregivers provide high and low skilled care and the majority report unmet needs for training (~50%)
We estimate only 5% are directly supported by policies
Replacement value in 2018 =$470 billion (AARP)
$21k -164k per caregiver depending on method to value time
Value varies by method of valuing a caregiver’s time
$21k replacement cost (Feinberg et al, 2011)
$54k per caregiver opportunity cost (Hurd et al, 2013)
$164k per caregiver total welfare cost (Skira, 2014)
Direct benefits and direct costs to caregivers and care recipients of our system of LTC, e.g. family caregiving
main benefit is that caregivers help care recipients remain in their own homes, preferred setting of care

3. Spillover “Benefits” of Family Caregiving
Informal care leads to . . .
Care recipient utilization
↓ Nursing home entry
↓ Home health care
↓ Medicaid inpatient use
Care recipient health care costs
↓ Medicare inpatient costs
↓ Medicaid inpatient costs
↓ Medicare long-term care costs (SNF, HHA)
Care recipient health outcomes
↑ Self-rated health. Less likely “poor”
Other dollar spillovers.
*protecting economic wellbeing for surviving spouse or next generation
Of course there are many other benefits not quantifiable in dollars:
*job well done
*satisfaction of fulfilling filial duty
*closer relationship*
*new skills.

4. Spillover “Costs” of Family Caregiving
Informal care leads to . . .
Care recipient utilization
↑Medicare emergency room use, if poor CG well-being
Care recipient health care costs
↑ Medicare expenditures, if poor CG well-being
Care recipient health outcomes
Other dollar spillovers.
*protecting economic wellbeing for surviving spouse or next generation
Of course there are many other benefits not quantifiable in dollars:
*job well done
*satisfaction of fulfilling filial duty
*closer relationship*
*new skills.

5. Spillover “Costs” of Family Caregiving
Informal care leads to . . .
Caregiver utilization
↑ Drug utilization for intensive CG
Caregiver (CG) health status
↑ Depressive symptoms
↑ Worse self-rated health
Caregiver (CG) economic status
↑ Quit work
↑ Retire early
↑ Out-of-pocket costs
↑ Debt
↓ Assets
↑ Missed work days, if CG depressed
↓ Hours of work, if remain working
↓ Wages for female caregivers
Varies and most of the effects in research studies show that the work effects are modest.
Lots of other spillovers like
*getting fired
*lost retirement savings
lost income due to losses in productivity
Not available in the data
(e.g. interrupted education for younger millennial military caregivers)
Non-dollar ‘spillover costs’
*divorce, family disruption
*loss of free time.
Not all has to do with money values

6. Expected Effects of Caregiver Policies
Help the quality of the care…communication

7. Optimal policy will enhance positive and minimize negative spillovers of caregiving in serious illness
Consider CG policy in light of different economic sector goals
Labor: Keep women working as long as possible  increase tax revenue
Health: Keep adults w/ serious illness at home  reduce Medicaid costs
Does not show up in the pie. Smaller families; geo dispersion; dual workers; increased divorce; delayed fertility
Graph from Skira, 2015, w/ permission

8. Optimal policy will enhance positive and minimize negative spillovers of caregiving in serious illness
Consider effects of LTC policies more broadly on caregivers and frame against the net benefits of a given CG policy
E.g. a policy that increases private LTC insurance coverage reduces informal care and this has spillovers to next generation: LTC insurance increases work activity of the children in next generation (Coe, Goda, Van Houtven, 2018)
E.g. a policy that expands formal home care benefits may or may not reduce informal care but may increase caregiver well-being and care recipient outcomes
Consider all spillovers to understand net welfare gains of a caregiver support policy or other LTC policy
Does not show up in the pie. Smaller families; geo dispersion; dual workers; increased divorce; delayed fertility
paid vs unpaid leave for caregivers
And stipend

9. Thank you! courtney.vanhoutven@duke.edu @chvanhoutven
Funding Disclosures
VA HSR&D/QUERI & VA Operations (CSP)
NIH (NIA, NINR)
Robert Wood Johnson Foundation
Elizabeth Dole Foundation