A woman whose husband has dementia shares the challenges they face during the coronavirus pandemic
- Pat McHenry Sullivan's husband has dementia and she talks about how the two of them are handling new everyday challenges that come with social isolation during the coronavirus pandemic.
- Patients with dementia may need help keeping up with personal hygiene and avoiding going outside and interacting with others — it's important for caregivers to remember to be patient.
- Home health aides should have gloves, masks, and disinfectants and be careful discussing the news around dementia patients as they can sense anxiety even if they don't fully understand the cause.
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Pat McHenry Sullivan is an Oakland, California-based woman whose husband has dementia. She's found that, in the midst of the coronavirus pandemic, everyday challenges are more intense because they are both stuck at home.
For help, she relies on the kindness of strangers, as well as on help from friends, family members, and Next Door, a social-media platform that connects neighbors.
"It took us seven tries to get toilet paper and we got that through Next Door," Sullivan said. Friends bring groceries to their house, handing them off through a window or left at the bottom of the stairs for Sullivan to bring up.
Sullivan and her husband are just one of many potential cases across America. According to the American Speech-Language-Hearing Association (ASHA), there are around 5.7 million people living in the US with dementia.
Dementia care is difficult without the constraints of the coronavirus pandemic, but self-quarantine and social isolation makes it that much more arduous. Here are some challenges and helpful tools, both for people with dementia and their home health aides.
Social Distancing
While social distancing plays a major role in stopping the spread of coronavirus, it can be difficult for dementia patients to practice.
Josh Klein, the CEO of Royal Care NYC, a home-health-aide service with more than 5,000 caregivers in homes throughout New York City, explained that dementia patients can be very stubborn. "You have to be assertive and make sure that they stay indoors." But sometimes staying indoors isn't an option.
Sullivan's husband has a serious immune deficiency and in a couple of weeks, he will need to go to a clinic to receive his monthly infusion of gamma globulins. Instead of taking the local senior taxi service, he will take the bus and practice the necessary precautions by wearing surgical gloves and a mask and trying to avoid close proximity to fellow passengers.
Protection against COVID-19
For those suffering from dementia, long-term memory may be intact, but short-term memory is not. Lenny Cohen of Chicago Neurological Services, who's father suffered from dementia, told Business Insider via email that the most important thing right now is to limit their potential exposure to the novel coronavirus.
"Dementia impacts [daily activities] and those patients need constant reminders about hygiene. It is even more difficult now as coronavirus pandemic requires frequent hand washing," he wrote.
Cohen said that patience and having a positive attitude around someone with dementia is key because they could easily forget something. "Their understanding of any pandemic might be limited if they have a severe case of dementia. Nevertheless, they can sense anxiety around them and their caregivers should be conscious about discussing news," he said, adding that many patients with dementia may need assistance "with simple hygienic tasks like washing hands for the appropriate period of time."
Home health aides should have personal protective equipment including gloves, masks, and disinfectants, which can be an issue as hospital supplies dwindle, Klein said. Adding that they also need to feel supported. That's why each Royal Care aide receives a personal phone call from a team member to check in on their wellbeing.
"They work the hardest and get paid the least," Klein said. "They are like heroes."
Entertainment and connection
While social distancing is the norm and many non-essential businesses are closed, there are still plenty of entertainment options for someone with dementia.
The Alzheimer's Foundation of America (AFA) recommends activities like creating collages, listening to music, arranging fake flowers, and adult-appropriate stuffed animal therapy, which involves giving a patient a stuffed dog or cat to play with. There are also virtual tours to places like The San Diego Zoo, Australia, Africa, and Antarctica — all people need is an internet connection.
For people with dementia, reminiscing is also important, Cohen wrote. It helps with memory recall and can improve mental awareness, sleep quality, and mood. Whether it's looking through family albums, talking about a happy experience, or watching old home movies, it can be a way to connect with each other and reduce stress.
For Sullivan, she finds helpful advice from the Dementia Action Alliance (DAA), a non-profit advocacy and educational organization that provides tools for caregivers, family members, and people living with dementia.
In addition, Sullivan's husband, who she calls "a jazz nut," has been taking a children's class on how to compose music. He also enjoys Ken Burns documentaries and has started catching up with old friends through Zoom video chats.
Even though caring for her husband can be trying at times, Sullivan says, "I'm also getting care from John, which sounds insane." She added: "He's openly grateful. He's got great patience with me. He has great empathy. He never stops lighting up when he sees me."
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