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The Journal Gazette

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  • Connie Benton Wolfe

Sunday, November 05, 2017 1:00 am

The many costs of caregiving

Looking after loved ones pushes emotional and economic limits- let us count the ways

Connie Benton Wolfe

The header across the foam board at the event entrance read “There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers. – Rosalynn Carter.” The event, the 42nd anniversary of Aging & in-Home Services of Northeast Indiana, was a celebration of the family caregiver, and attendees were asked to share what caregiving means to them. “Love” was a frequent message, as were “caring,” “giving,” “compassion” and “strength.” Others expressed sentiments such as “tears and laughter,” “circle of life” and “taking care of someone who took care of you.”

One quote struck me for its pragmatic approach: “The best of humanity pushed to its limits.” That rang true, as most caregivers are not prepared for their role and provide care with little or no support. The strain of caregiving reverberates across the physical, mental, emotional and financial spectrum.

Supporting the family caregiver is an essential part of Aging & in-Home Services' mission. But warm and fuzzy messages are not why support for caregivers is important to this community. Having a strong system of community-based support for caregivers, and their care recipients, is a significant economic development issue as six in 10 family caregivers are employed.

To attract and retain businesses, we need a skilled and reliable workforce: While the “average” caregiver is a woman, 49 years old, employed at least 20 hours a week and providing care for children, men now make up 40 percent of caregivers. About a fourth of caregivers are millennials, spending an average of 21 hours a week on caregiving while working an average of 35 hours. A number of millennials are caring for military veterans with post-traumatic stress disorder or traumatic brain injuries.

Those and other chronic conditions increase the stress of caregiving and the time spent in caregiving. As we live longer, we learn to live with multiple chronic conditions that can be maintained at home, most often arthritis, diabetes, hypertension/heart disease and dementia/Alzheimer's disease. Many caregivers go beyond helping with activities of daily living to provide complex care using meters/monitors, managing medications/injections and wound/ostomy care, often complicated by a loved one's declining cognitive ability.

We also need a financially stable workforce to attract and retain businesses: As care recipients live longer, time spent in the caregiving role increases: 36 percent of caregivers provide care for one to four years, 17 percent for five to nine years, 12 percent for 10 or more, and military caregivers often spend 30 years or more in the role.

The increase in time is reflected in money spent caregiving. The average family caregiver spends $5,531 a year on out-of-pocket expenses. Forty-seven percent of working caregivers indicate an increase in caregiving expenses has caused them to use up all or most of their savings. Many caregivers resign or accept reduced work hours to provide care despite loss of future Social Security or retirement income.

We need a healthy workforce: Caregivers are less likely to practice preventive health behaviors, visit a health care provider or fill a prescribed medication for themselves. It has been estimated that between 40 percent and 70 percent of caregivers suffer from depression and may also suffer from coexisting anxiety disorders, substance abuse and chronic conditions.

Supportive services for caregivers and care recipients can reduce caregiver stress and extend the length of caregiving, and correspondingly defer nursing home placement, by two years or more. Typically, those services are part of programs known as Family Caregiver Support and Case Management. Both provide a person-centered approach to care planning based on an individual's desires and abilities.

The bottom line: The benefits of family caregiving to state budgets is also apparent, as the average cost per month of a nursing home placement in Indiana is $6,150 – compared to less than $500 a month for support to a family caregiver provided by a community-based organization.

November is National Family Caregivers Month. Celebrate your family caregivers with a hug and an offer to help.

Connie Benton Wolfe is CEO for Aging & in-Home Services of Northeast Indiana, Inc.