When a family member becomes ill, the initial response may be to divide up responsibilities and address them as a family unit. Unfortunately, family members forget to calculate the direct and indirect monetary, health, and social costs. These costs are assumed by themselves, their families, and the care recipient.
Last year approximately 673,000 Pennsylvanians provided unpaid caregiving services. On average, unpaid caregivers spend almost 22 hours per week providing this service[1].
The Alzheimer’s Association estimates that it costs the average unpaid Pennsylvanian caregiver $13,952.45 in direct income per year. This estimate is conservative. Unpaid caregivers often fail to maintain perfect bookkeeping practices, which leads to an understatement of the financial burden. Costs for utilities, transportation, groceries, and medications are often forgotten as caregivers raise their own families and manage jobs. As the diseases progress, costs also increase.
Unpaid caregivers begin to make decisions that impact their own employment and retirement security. Sometimes unpaid caregivers work less hours and eventually leaving their jobs altogether. This decision has an immediate impact on the unpaid caregiver’s finances, but it also has long-term implications. Social security and pension payments can decrease as a result of the years spent outside the labor market. Promotions based on workplace experience can be postponed or never obtained. Professional networks weaken or disappear, inhibiting their ability to reenter the workforce. The sacrifice is great for the unpaid caregiver, but the consequences are not always realized until many years in the future.
6 in 10 caregivers report having experienced at least one impact or change to their employment situation as a result of caregiving, such as cutting back on their working hours, taking a leave of absence, receiving a warning about performance or attendance, or other such impact[2] (p. 60).
Other indirect costs can arise as caregiver health problems are exacerbated. This can occur by increased stress levels and instances of depression.
23% of family caregivers caring for loved ones for 5 years or more report their health is fair or poor[3].
Stress of family caregiving for persons with dementia has been shown to impact a person’s immune system for up to three years after their caregiving ends thus increasing their chances of developing a chronic illness themselves[4].
Instead of remembering the good times spent with the care recipient, the unpaid caregiver gradually replaces these memories with a new reality. Their daily mission becomes ensuring that the care recipient completes the activities of daily living. Emotional and financial stress can sour the relationship just when it should nurtured most.
Finally, as the disease progresses, the care recipient becomes unable to communicate their needs. Meeting these unmet needs requires expertise. The unpaid caregiver must subject themselves to a learning curve in order to provide effective caregiving. How will you know if you are truly connecting? How many workshops will you have to attend? How many professionals will you need to consult? The learning curve for providing adequate care implies a steep cost of entry for both the unpaid caregiver and the one receiving care.
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[1] 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s Association. Alzheimer’s & Dementia 2016;12(4). http://alz.org/documents_custom/2016-facts-and-figures.pdf.
[2] 2015 Research Report: Caregiving in the U.S. June 2015. National Alliance for Caregiving and the AARP Public Policy Institute. Pages 60 and 62. http://www.caregiving.org/wp-content/uploads/2015/05/2015_CaregivingintheUS_Final-Report-June-4_WEB.pdf.
[3] Caregiving in the U.S. 2009. National Alliance for Caregiving in collaboration with AARP. November 2009. http://www.caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf.
[4] “Chronic stress and age-related increased in proinflammatory cytokine IL-6”. Glaser, Janine et al. Proceedings of the National Academy of Sciences of the United States. 2 April 2003. http://www.pnas.org/content/100/15/9090.full.pdf.