Why caregivers for people with dementia often die before the patient themselves



This piece originally was published July 11, 2015, on Healthline Contributors. That site no longer is live, and the article is reprinted with permission here.

By David Heitz

Half of all family members who care for people with dementia die before the patient does, statistics show, or they become seriously ill due to self-neglect. The study was published in 1999 in the Journal of the American Medical Association.

Why? Because caring for someone with dementia is hard work. Due to their illness, people with dementia can be almost impossible to communicate with without the proper training. They need to be watched constantly, like children. And they can become violent.

It’s why so many places that call themselves “memory care” assisted-living communities handle the situation by encouraging family members to ask doctors to heavily sedate the patient. That can be cruel, but sometimes it is necessary in places that are not properly staffed.

Diane Carbo wants to know why developing guidelines for true, standardized dementia care— and financial and respite support for family members who try to care for people with dementia in their homes — isn’t on the agenda for the White House Conference on Aging Monday.

“This is the conference where big public policy changes occur. This is the conference that Social Security and Medicare came out of,” Carbo said. “Paying the family caregiver some kind of stipend to provide care, or at least respite care … we have no funding for respite care in this country at all. The family caregiver is the invisible patient. They are so busy monitoring someone else for 24 hours that they neglect themselves.”

Carbo is a registered nurse with four decades of experience and the founder of Caregiver Relief. She is also the founder of My Vital Alert. My Vital Alert stores all kinds of vital records — medical, dental, even power of attorney and will information — on a pendant, bracelet or card. A provider can tap any of those items with his smartphone and have a patient’s vital information pop right up.

Many families choose to put their loved ones in assisted-living facilities that label themselves “memory care.” What that usually means is locked doors. Period. At best, it means the staff attended a two-week seminar on caring for people with dementia.

There are some true “memory care” communities, but they are few and far between.

“If it’s truly a dementia care unit, the staff would have training that would allow them to handle behaviors,” Carbo said. “You also need behavioral specialists and neuropsychiatrists on staff.”

Instead, they sedate the patient so they won’t become a problem. The patient essentially becomes mentally vegetative.

“There needs to be a totally different approach to handling dementia,” Carbo said. “There are no regulations, no standardized dementia care.”

The plus-90 group is the largest growing demographic by age in the U.S. As that group grows, so do the number of people in the U.S. with dementia.

“Everybody is so worried about a cure … I know that we want a cure, I get that,” Carbo said. “But the issues that are more serious are the caregivers, the lack of continuity of care, and caregiver support.”

Social isolation is the classic hallmark of a family caregiver. “I tell my caregivers, you are the most single important part of the equation. Without you, it all falls apart.”

She said caregivers need respect as well as financial support in some form or another for providing care.

“At the end of life, when this is all over, most (caregivers) end up financially devastated,” Carbo said. “They have lost their job, they were negatively impacted financially as a defenseless individual.”

Caregivers provide billions of dollars in free care every year, as I reported two years ago in this Healthline news story.

“So many of them become ill or die,” Carbo said. “Those are the issues that I see we are not addressing.”

(Photo Courtesy Diane Carbo)

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