Miami University

"Picking Up the Tab": Families Discuss the Financial Impact of Caregiving

L.D. Murdoch

2003

Full Report   (PDF, 29 pages)

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This qualitative study analyzed the stories and circumstances of family caregivers to older adults with an emphasis on understanding the financial implications of caregiving. Themes included: the timing of the caregiving episode, planning for long-term care needs, relationships within the family, the process and effects of decisions and choices, legal issues, work issues, caregiving and non-caregiving expenses, and non-financial costs related to caregiving.

Key Findings:

• Families most often experience caregiving during a time of competing financial obligations, such as when children are entering college or starting families of their own.
• Some care recipients planned well financially for their long-term care needs. Low wage employment and limited retirement income restricted the planning ability of others.
• Caregivers sacrifice their own financial well-being, including retirement and long-term care savings, for the benefit of the care recipient and other family members.
• Caregivers postpone employment, quit jobs, retire, or make work adjustments such as calling in sick or cutting back on hours to fulfill caregiving obligations.
• Prescription drugs, incontinent supplies, medical equipment, and home modifications are expenses often paid for by family caregivers.
• Financial impact can continue long after caregiving ends. Caregiving can result in health problems, debt, and limited retirement and long-term care planning for family caregivers.

Policy & Program Implications:

• Caregiver assistance programs should include financial management education to help caregivers conserve limited financial resources.
• Expanding family and medical leave policies will assist caregivers to better manage caregiving duties and employment without removing the caregiver from the workforce.
• A prescription drug benefit under Medicare would reduce out-of-pocket expenses for care recipients and caregivers.
• Tax incentives to encourage the purchase of long-term care insurance could result in better planning for the future long-term care needs of care recipients and caregivers.
• Encouraging the use of reverse mortgages to pay for long-term care expenses or long-term care insurance premiums would be particularly helpful for those whose only asset is their home.
• Expansion of consumer-directed care programs to allow care recipients to hire and pay family members as caregivers would help families replace income lost when a caregiver quits working or reduces the number of hours worked to provide care.

Conclusions:

This study revealed that caregiving can have a significant negative financial effect on caregiving families and can continue after caregiving ends. Families do what is necessary to care for their loved ones, even at the expense of their own financial futures. Legislative and policy reform should seek to assist the most important providers in the long-term care system � informal caregivers. This research was funded as part of a grant from the Ohio General Assembly, through the Ohio Board of Regents to the Ohio Long-Term Care Research Project.

Full Report (PDF, 29 pages)

To obtain information concerning the cost or to order printed copies of the full report, contact Scripps Gerontology Center at: 513/529-2914 or scripps@muohio.edu

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