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More Family Engagement, Support Needed for Family Caregivers

About 70 percent of family caregivers feel ill-prepared for the job, underscoring a need for family engagement and support.

family caregiver engagement

Source: Thinkstock

By Sara Heath

- As patients continue to age into retirement, the healthcare industry will see increased need to support family caregivers and drive family engagement, recent data shows.

Specifically, family caregivers feel like they aren’t necessarily qualified or able to deliver the quality of care their loved ones need in a long-term care or end-of-life situation, according to one survey from Lincoln Financial Group. Although 75 percent of the surveyed say they anticipate being a caregiver for a family member, about 70 percent feel like they don’t have the expertise or the ability to provide quality care.

Respondents are right in expecting they will one day serve as a family caregiver, the survey administrators added. Over 50 percent of adults over 65 will one day need long-term care, and this usually starts at home with a family caregiver.

But those who have already served as a family caregiver said the job is demanding. Sixty percent of caregivers said they did not anticipate how intense the job would be and that a care management tool would have been useful while they took care of a loved one. High emotional tolls were the most oft-cited challenges for caregivers.

These results highlight the importance of care planning, the survey authors said. Care planning, especially as individuals age into the Medicare or retirement population, can help family members understand what their loved ones truly want. It will also help family caregivers understand what will soon be expected of them.

“A long-term care event is a difficult time for a family, including the person in need of care, as well as the children or spouse making care decisions and often providing the care,” said Karen L. DeRose, CFP, CRPC, president and managing partner of DeRose Financial Planning Group and registered representative of Lincoln Financial Advisors.

“Planning before care is needed is the best way to ease those stresses,” DeRose added. “Think about the type of care you’d want, and discuss your preferences with your family and advisor; then, together, you can determine strategies on how to make those preferences a reality if the need arises.”

Another recent survey, this one conducted by Genworth, found similar trends among family caregivers.

The Genworth Beyond Dollars Study of 2018 found that the plight of the family caregiver is becoming increasingly demanding.

For one, individuals are having to assume the role of caregiver at a younger and younger age. Fifty-eight percent of family caregivers are between the ages of 25 and 54, with 47 being the current average. In 2010, the average age of a caregiver was 53 percent.

Those receiving care are also getting younger. In 2010, 62 percent of caregiving recipients were older than 75. In 2018, the average age of a care recipient was 66.

The demands of caring for a sick or aging family member are taking an emotional toll, the report continued. Although 82 percent of family caregivers said they associate positive feelings with looking after a family member, they nonetheless reported some misgivings.

Fifty-three percent of family caregivers said they have high levels of stress. Forty-one percent said they have experienced feelings of depression and resentment toward family members.

Fifty-two percent of family caregivers said they did not feel qualified to be giving care.

Family caregivers also report a financial toll, the Genworth researchers added. Seventy percent of caregivers said they buy everyday items for their loved ones. Sixty-one percent of families have helped to cover a loved one’s healthcare services. Forty-eight percent of respondents said these expenses have resulted in poorer quality of life.

This survey also revealed that most caregivers and care recipients could prepare better for long-term or end-of-life care.

“As difficult as it is to talk about the potential for needing care, it is incredibly important for families to start having those conversations with loved ones and making plans for the future,” said Janice Luvera, Genworth's Chief Marketing Officer. “Planning well now helps ensure that people will receive the care they need, how and where they wish to receive it, and reduces the stress of caregiving for those who love them.”

Advance care planning is not just beneficial for the caregiver. It is also key to ensuring a patient’s care needs are met. In doing so, patients, family members, and providers alike can ensure they stick to patient preferences and respect a patient’s rights when they are seriously ill.

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