Giving Compass' Take:
- Surveys indicate the lack of support for caregivers of individuals living with dementia. There is a national approach to supporting them.
- How can donors help support dementia research to help the care system?
- Read about the dementia care system and its issues.
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You’ve probably heard about a new class of drugs for MCI. The Food and Drug Administration’s recent approval of the first made front-page news. But the medication, called Leqembi and produced by Eisai, Inc., does nothing to halt the slide of those with dementia. At best, the new drugs slow the decline by a few months, an improvement that may pass FDA muster but one most experts deem clinically insignificant.
Month by month, year by year, Gaines’ symptoms grew worse. He couldn’t remember 911, the number to call if there was an emergency, and he was alone when Sandra went shopping. Called “Cookman” by his children and grandchildren because of his culinary skills, Jimmie began putting Styrofoam containers in the microwave despite being repeatedly told not to do so.
Sandra’s frustration grew, and she began calling her daughter, Catrece Strickland, now 50, who lives nearby, more frequently. “I need you to come help with your father,” the daughter recalls her mother beginning their many conversations. After a long day at work, the certified public accountant would rush to give her mother relief. Occasionally, Catrece recruited one of her teenage children to take grandma shopping. “She gets frustrated by herself,” Catrece said of her mother. “It’s human nature. You can only deal with the same issues for so long.”
The caregivers in Gaines’ extended family face the same dilemma confronting the 4-5 million American families whose loved ones with dementia live at home. The government provides almost no support. The same can be said for the nearly 50 million people providing unpaid care for loved ones with intellectual and developmental disabilities, physical disabilities, and crippling diseases like cancer, diabetes, heart disease, and other disorders.
That number, over a fifth of all households, rose 22% between 2015 and 2020, according to a survey conducted every five years by the AARP and the National Alliance for Caregiving. It is expected to soar over the next decade as the population ages and its chronic disease burden rises.
The burden of providing at-home care takes its toll on caregivers, who often become socially isolated, emotionally depleted, and ignore their own needs while helping loved ones. The share of caregivers reporting their health was only fair or poor rose from 17% to 21% over the latest five-year span. Every expert I spoke with for this story conveyed anecdotes about caregivers who physically collapsed under the strain and died—leaving their loved ones with advanced dementia and any remaining family scrambling to find other care. It happened in my own extended family.
Washington is slowly inching toward addressing this mounting burden on Americans and the economy, which loses hundreds of billions of dollars a year as caregivers—three-fifths of whom are women—drop out of the workforce or reduce their employment to support family members. In 2017, Congress created an advisory council to prepare a national strategy report for helping family caregivers, and it finally offered its report last year. In April, President Joe Biden followed up by issuing an executive order with 50 recommendations, including ordering the Health and Human Services Department to develop a plan for helping family caregivers provide dementia care.
Read the full article about dementia caregivers by Merrill Goozner at Washington Monthly.