SPRINGFIELD, Mo. (KY3) – Dementia-related deaths increased by 20% in Missouri during the pandemic. The Alzheimer’s Association’s annual report shows the challenges caregivers face while helping loved ones living with the disease.
“It changes everything, for sure. Your role completely changes,” said Mark Applegate.
Applegate’s mother was diagnosed with dementia more than a decade ago. Several years later, the signs became undeniable.
“She knew who I was, I mean I’m her son, but she didn’t know my name anymore,” he said.
Her husband was her full-time caregiver, while the rest of the family helped. Then it became necessary to bring in respite care and eventually transition her to a nursing home.
“She started having more trouble with memory, more trouble with decision-making and with various parts of daily living,” Applegate said.
Since last year, Applegate and his family have had to adapt, visiting his mother through technology and getting updates from nursing staff, instead of seeing her in-person.
Sarah Lovegreen is the Vice President of Programs for the Alzheimer’s Association, Greater Missouri chapter. She said dementia is still the 6th leading cause of death. She said it is the only top ten cause of death without a treatment, prevention or cure.
Lovegreen said results of the pandemic have brought on added stress for patients and the people who care for them, including isolation.
“We may see the person living with the disease having changes in how they communicate or exhibiting more dementia-related behaviors because they’re out of their routine,” she said.
According to new figures from the Alzheimer’s Association, dementia care could cost the nation $355 billion this year. Lovegreen said last year, families fought to provide and pay for help.
“We saw caregivers struggle with just maintaining healthcare for themselves and for their loved ones, right, with various shutdowns and limitations to receiving that care,” she said.
Lovegreen said people of color face additional barriers when it comes to healthcare. The Alzheimer’s Association reports two-thirds of Black Americans believe it’s harder for them to get excellent care for dementia, while 2 in 5 Hispanic Americans believe their own race or ethnicity makes it harder to get care, as do one-third of Asian Americans.
“Our community is saying, we need a culturally competent healthcare workforce that can understand my my ethnic background, my cultural background, my racial experiences,” she said.
Lovegreen said non-white populations believe memory loss is a normal part of aging. That, combined with the fact that two-thirds of Black Americans believe that medical research is biased against people of color, leads to a lack of involvement in clinical trials. She said that can affect how inclusive the outcomes are.
“We need individuals from different backgrounds to participate in research so that we can one, learn how the disease progresses in individuals from various backgrounds, but also to see what about these treatments? Does a treatment work the same in a white person, native american, African American? Does the treatment have the same effectiveness across the board,” she said.
Lovegreen and Applegate said raising awareness about Alzheimer’s could make all the difference.
Applegate said he encourages caregivers to reach out to local support groups for a community who understands their challenges. He leads one though Senior Age in Springfield.
“While it is that everyone has an individual experience, there’s a lot of common threads in it and the more you can hear from other people that you’re not alone, it really does help,” he said.
Applegate’s advises caregivers to remember to comfort instead of correct a loved one who cannot remember the details of a life event. He also said, “focus on what is left, not what is lost.” He writes about his journey as a caregiver on his blog.
Applegate said the decision to find a nursing home or assisted living facility is a difficult one, especially so during a global pandemic. He said the Alzheimer’s Association helped him find an affordable, acceptable option when he was considering it for his mother. The Alzheimer’s Association’s helpline is: 1 (800) 272-3900.
For more on the annual facts and figures, click here.
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