Support for Families on the Front Lines of Dementia Care

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THE ALZHEIMER’S ASSOCIATION has said for every one person affected by Alzheimer’s disease or dementia in the United States, three family members are also affected.

These individuals are often spouses or adult children, the latter often having additional care responsibilities in addition to helping a parent with memory loss.

When signing on to care for a family member with dementia, spouses and children are often signing onto a memory care commitment that can last between three and twenty-two-years.

Those years provide no insignificant challenge for one common type of caregiver: an adult child of a parent with dementia (picture a fifty-year-old mother taking care of her parent and own children simultaneously).

In an effort to help reduce some of the challenges and stress that caregivers can face, a recent study led by Joseph Gaugler, Ph.D., an associate professor and McKnight Presidential Fellow in the University of Minnesota’s School of Nursing, investigated better care for Minnesota’s unpaid caregivers.

“In these situations families provide the assistance and assume much of the psychological, health, social and financial burdens that come with caregiving,” said Gaugler.

Simply put, “Families are the frontline of dementia care.”

Investigating a better way

The study found that after adult child caregivers participated in a program providing them with counseling, caregiving support groups and access to 24-hour, ongoing counseling (offered in-person, over the telephone, or through email contact), the number of adult children who put their parents with memory loss in nursing homes or other residential care settings fell by 29 percent.

The decrease was observed at various locations in and around the Minneapolis/St. Paul metro area over a two to three-and-a-half year period.

The research findings present a potential opportunity for family caregivers to keep mom and dad out of the nursing home longer, while saving money for families, Medicare and Medicaid as well.

“Families often spend down their assets in assisted living and nursing homes,” said Gaugler. “With assisted lived costs estimated at $42,000 annually, there’s a huge potential cost savings if residential care can be postponed for even a few years.”

The cost savings is the result of a much less expensive preventative care program that included counseling sessions for the caregiver and his or her family six times over a period of four to eight months.

At these sessions the study counselor Mark Reese, M.A., a community program specialist with the School of Nursing, provided emotional support to adult children to help them cope with the changes related to a parent’s memory loss.

This support enabled adult children to understand that their parents’ behaviors were due to an underlying disease and that these behaviors should not be taken personally. The counseling sessions also offered caregivers an opportunity to explore emotionally challenging issues and develop solutions to alleviate the stress they caused.

New York Study 

A 2002 study by New York University researchers found a similar care plan to work for spouse caregivers in the New York City area. Founder of the NYU program, Mary Mittelman, D.P.H., collaborated with U of M researchers for the adult children finding.

“Our study bolsters the evidence that supports this kind of care plan as effective,” said Gaugler. “Care for caregivers and their families not only helps manage and improve the caregiver’s quality of life, but it also, in the end, improves the quality of life of the person with dementia. This kind of preventative care might merit widespread coverage by insurers.”

U of M study findings were published in the journal The Gerontologist. Funding was provided by the National Institutes for Health grant no. R01AG022066 and the U of M’s Clinical and Translational Science Institute.

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