A ‘Perfect Storm’ for Families Grappling with Dementia
As the COVID-19 pandemic engulfs the globe, it puts extraordinary strain on at-risk groups—very much including people with neurodegenerative disease and their carers. Not only do most people with neurodegenerative diseases fall into the age groups susceptible to severe complications from the new coronavirus, they also depend on health support services that are crumbling in the virus’s wake—and they do not necessarily understand why routines important to them are changing. Caregivers have fewer resources at home. Understaffed nursing homes and assisted living facilities have closed their doors to visitors and no longer accept new residents. Primary care physicians and neurologists are attempting to evaluate patients online or over the phone. But against these headwinds, the community is showing resilience, creating safe ways to maintain connection, care, and health in a time of crisis.
- People with neurodegenerative disease are among those most vulnerable to COVID-19.
- Loss of in-home health aids, adult day care, and nursing home spots burden carers even more.
- People are moving support services online.
“It’s a surreal situation where you go from A to Z and everything is different,” said Marsel Mesulam of Northwestern University in Chicago. The pandemic is an incredible stressor for most people, he said, let alone those with neurodegenerative disease and their caregivers.
Though having Alzheimer’s or a related disease does not by itself render a person susceptible to COVID-19, some behavior symptoms stemming from cognitive impairment or dementia increase the possibility of infection. The challenges vary by dementia type: While people with AD need consistent reminders, or help, to wash their hands, people with frontotemporal dementia struggle with social distancing, and those with primary progressive aphasia—which affects the ability to find words or decode them—have trouble understanding the pandemic or communicating their concerns to caregivers. “With social isolation on one hand, and difficulty communicating on the other, people with PPA are hit with a double whammy,” Mesulam said.
“This pandemic is particularly damaging for patients with all chronic conditions, especially those with dementia or cognitive impairment,” noted Costantino Iadecola of Weill Cornell Medical School in New York City. Besides age, these patients tend to have other comorbidities that put them at risk for COVID-19 complications, he said. For example, cardiovascular disease is near-ubiquitous in people with vascular dementia; it also worsens COVID-19.
The task of shielding this vulnerable population from the risk of COVID-19 falls squarely on the shoulders of caregivers. In the home, many carers, such as spouses, are elderly and thus vulnerable themselves. Social-distancing measures, put in place to “flatten the curve” of the pandemic, mean these carers are taking on even more work themselves. While many previously relied on visits from family members or friends or neighbors for temporarily relief, those visits are now discouraged, so primary caregivers get no breaks.
Others rely on regular visits from in-home health aides, such as nurses or other workers who come into the home to provide care, administer medication, and give family members some respite. These workers are considered essential even in areas where shelter-in-place orders have gone into effect. However, in-home aides may need to stop work for the same reasons others do—because they are sick themselves, or need to care for their own family members, including children housebound by school closures, Iadecola said. For patients who rely on these aides' help, the home may become unsafe. In one, when an aide could no longer come, an elderly man with mild dementia left alone with his wife fell and broke his neck, Iadecola told Alzforum.
Home health aides tend to have at best limited access to personal protective equipment, whether they are self-employed or hired by the state or other health agencies. As they travel from home to home, they may unwittingly spread the virus despite their best efforts to follow hygiene protocols, Iadecola said.
This puts people who rely on them in a tough spot, said Beth Kallmyer, vice president of Care and Support for the Alzheimer’s Association in Chicago. She suggested that concerned family members contact homecare agencies to ensure employees are healthy and adhering to strict hygiene practices. Ultimately, however, families may have to prepare to stop in-home visits in order to mitigate risk to their loved ones, or compensate for a lack of available workers, Kallmyer said.
If recent calls to the Alzheimer’s Association’s 24/7 helpline are any indication, caregivers are already grappling with rising stress levels caused by the pandemic, Kallmyer said. Besides their growing workload, the relentless news cycle about COVID-19 acts as its own stressor, Kallmyer noted. When caregivers get stressed, people with dementia pick up and mirror their feelings, but are not able to process them effectively. For care to work well, it is imperative that caregivers find ways to manage their own stress, such as by limiting television and social media news feeds, and through practices such as meditation and exercise where possible.
Mounting caregiver stress, and its transfer to people with dementia, tends to create a vicious cycle in which difficult behaviors—aggression, anxiety, confusion—can overwhelm caregivers, said Meryl Comer of UsAgainstAlzheimer’s. “Continuity is the most important thing you can have if you’re going to keep a loved one with dementia at home,” Comer said. “If you disrupt continuity, it triggers behaviors that you have to deal with, and many times those behaviors end up putting a person in a facility.” UsAgainstAlzheimer’s is surveying its listserv for detail on how the pandemic is affecting their lives and caregiving ability.
Right now, many nursing homes and assisted living facilities may be reluctant to accept new residents for fear of spreading the virus to current inhabitants, Comer said. In some areas, new admissions are blocked altogether. Taking institutionalization off the table could create a surge in home accidents, said Iadecola. “People in failing home situations, who were scheduled to move into assisted living facilities, are now being told to stay put,” he said.
Shutting down visitation in nursing homes and assisted living facilities helps prevent the spread of infection to vulnerable inhabitants, but also increases strain on staff, who in many facilities are already stretched thin. Comer noted that many understaffed nursing homes rely on regular visits from their residents’ relatives to supplement care, including feeding and entertaining them.
To plug staffing gaps, facility workers who don’t normally provide direct care may be asked to step up, Kallmyer said. The Alzheimer’s Association is working with dementia facilities to put together a resource tool kit to help guide untrained staff, such as hospitality workers, in how to care for people with dementia.
Family members who are physically separated from loved ones in elder care homes can connect in other ways, said Claire Day of the Northern California and Nevada chapter of the Alzheimer’s Association. For people with dementia, phone calls can be difficult and video conference technology hard to navigate, but staff at many facilities can step in to help residents use these tools. “People are finding inspiring ways to make life continue in these unprecedented times,” Day said.
Adult day care services are being shut down. While senior centers let older people come together to socialize, share meals, and engage in activities, adult day cares offer a wide range of health services; some include dementia care. These centers also provide critical relief to family caregivers who are unable to adequately care for people with dementia now in their homes full-time, or who may need to work during the day. Because their clientele gather in groups outside the home, these centers are closing in regions with shelter-in-place orders.
For example, the Peg Taylor Center in Chico, California, closed its doors last week. This adult daytime healthcare provider recently celebrated its 34th anniversary, and is the only center of its kind in the region, said director Diane Puckett. At the time of its closing, the center was serving 62 people and their families, including 45 people with cognitive impairment, dementia, or other neurodegenerative diseases. In addition, 70 people were in various stages of enrollment. Puckett told Alzforum that adult day healthcare is more affordable than assisted living facilities, and offers a way for people with dementia to remain at home while receiving critical services. Besides participating in activities that keep them healthy and socially connected, patients receive meals, help with medications, physical therapy, and medical care at the center. This means that when they go home each day, they are better able to spend quality time with family, Puckett said.
This center, too, is trying to maintain services remotely in what Puckett called “a center without walls.” Center nurses and therapists will do wellness checks over the phone and deliver meals and self-care supplies to homes. Importantly, they will also help family members continue activities that their loved ones enjoyed doing at the center, to keep them engaged at home. For one couple, this meant that a therapist used the phone to guide the wife to a website featuring pictures of Sweden, where her husband had been born. He had enjoyed looking at the website during his visits to the center, and the therapist chatted with him over the phone as he reacted to the photos. “Even over the phone, there’s a fair distance we can go,” Puckett said.
Beyond the Peg Taylor Center, adult day healthcare services across California are working with departments of aging and public health to coordinate continuity of care during the pandemic. Puckett’s center is not charging participants for remote services. She is trying to obtain coverage by Medi-Cal, a healthcare program for low-income people, and to amplify calls for donations. The center has always supplemented its budget that way; “Community support is more important now than ever,” Puckett said.
With people having to stay at home, how will those with neurodegenerative disease visit their doctors, or see neurologists for diagnosis and care? Russell Swerdlow is at the Alzheimer’s Disease Research Center at Kansas University Medical Center in Kansas City. He said that while the clinic is still open, doctors are asking patients not to come in unless absolutely necessary. Instead, they are transitioning to telemedicine via video call.
“Using this technology is tricky for this older population with memory issues, many of whom live in rural areas,” Swerdlow said. “What’s going on in their lives is anxiety-provoking enough, and now we ask, ‘Would you like us to send you a Zoom link?’ Some are fine with that, others prefer a phone call, and some insist on coming in.” Swerdlow said that while telehealth may suffice for regular check-ups of enrolled patients who already have diagnoses and treatment plans, making an initial diagnosis remotely is more challenging. However, Swerdlow said that patients already have to wait six to 12 months for their first visit, so rescheduling entirely is not a great option, either.
In New York City, a current center of the coronavirus outbreak in the United States, the situation is dire. “Everything that can be moved to a video call has been moved to a video call,” Iadecola said. Patients are communicating with their primary care doctors by phone or video, and those doctors then interface with specialists, including dementia care neurologists, remotely as well. While some situations merit an in-person visit to a primary care doctor, every effort is being made to keep patients out of hospitals, which are rapidly filling with COVID-19 cases. Particularly for people with cognitive impairment or dementia, coordinating care remotely can be difficult, Iadecola said, and caregivers play an essential role in communicating with doctors.
Patients are not the only ones who need help to adapt to telemedicine. Some neurologists do, too. The American Academy of Neurologists just hosted a webinar to help their members integrate telemedicine into their practices, covering basics from setting up the technology to privacy, consent, and health insurance issues to creative ways for conducting neurology exams remotely. Karima Benameur, a neurologist at Emory University School of Medicine in Atlanta, has been practicing telemedicine for two years. She showed participants, including most of the Montreal Cognitive Assessment (MoCA), how to conduct neurology exams by video. “You can get a pretty reasonable cognitive assessment,” she said. “You’d be surprised at how much information you can obtain remotely.”—Jessica Shugart
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