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Crisis Care for Adults With Cognitive Impairment

In any crisis, older adults are among the most vulnerable to health risks (PDF, 56 KB). The global pandemic is no exception.

Adults with mild cognitive impairment are living at the intersection of two serious dangers: the increased fatality risks of contracting coronavirus and the ageist discrimination of older adults whose health care concerns are often overlooked or ignored in clinical settings.

“That just begins to show how we don’t value an older adult’s life as much as others’ [lives]. But really, we’re all equally valuable,” said Iris Aguilar, assistant director at the USC Edward R. Roybal Institute on Aging at the USC Suzanne Dworak-Peck School of Social Work.

Prioritizing person-centered care is an opportunity to provide high-quality, effective care during the pandemic and charts a path toward a future where person-centered care is the norm for people of all ages.

Understanding Cognitive Impairment for Older Adults

The Centers for Disease Control defines cognitive impairment  (PDF, 426 KB) as when “a person has trouble remembering, learning new things, concentrating or making decisions that affect their everyday life.” Cognitive impairment can take many forms and is often defined within a range of mild to severe. It depends on an individual’s ability and level of independent function.

Adults may progress from one stage to another as they age or notice changes as they receive diagnoses based on other conditions or comorbidities.

Types of Cognitive Impairment

Mild Cognitive Impairment: noticeable change in cognitive functions such as memory, but still able to independently conduct everyday activities

Severe Cognitive Impairment: losing the ability to process the meaning or significance of a conversation, event or activity and no longer able to live independently

Memory Loss: inability to recall short- or long-term memories that can result from a traumatic brain injury or the development of an underlying condition

Dementia: a general term to describe a loss of ability to remember, think or make decisions at a level more significant than what is considered normal signs of aging

Alzheimer’s Disease: the most common cause of dementia that is a progressive decline of both short- and long-term memory with personality changes and difficulty talking

Depending on their level of independence, people with cognitive impairment need assistance with everyday tasks, called “activities of daily living (ADLs),” which can prove difficult to do during a stay-at-home order.

Steve Meehan, a former admissions director working in skilled nursing in Spartanburg, South Carolina, says that most of these activities are still being done with the help of a care provider but residents are being isolated from each other. 

For example, someone who needs help preparing and eating meals may have enjoyed the socializing provided by a cafeteria in a nursing facility, but now they have food brought to their room by a caregiver because of social distancing regulations. 

“It takes a toll on them because of the depression they go through from not seeing their families, from not having physical touch,” said Meehan, who has 25 years of experience working in assisted living. “It really hurts them when they don’t have someone to be there for them.” 

According to the CDC, the risk of depression for older adults is between 1% and 5% but climbs to 13.5% for those who require home health care and 11.5% in older hospital patients.

Older adults have a high risk of depression, which can be compounded by social isolation for long periods of time. According to the CDC, the risk of depression for older adults is between 1% and 5% but climbs to 13.5% for those who require home health care and 11.5% in older hospital patients. 

Both depression and dementia are highly under-treated and misdiagnosed for older people (PDF, 411 KB) and can have fatal outcomes when care providers fail to intervene and validate a patient’s needs.

Because of the stay-at-home orders, Aguilar said the coronavirus pandemic has caused people to voluntarily delay medical visits that they deem nonessential. But the unseen effects of those delays — especially for those sheltering in isolation — could include a person’s condition progressing and missing crucial professional attention.

Aguilar stressed the importance of getting evaluated as early as possible so that interventions can take place at the right time and increase the likelihood of effective, quality care.

Person-Centered Care for Adults With Cognitive Impairment

Ageism in American culture and the broader health care system during the global pandemic can lead people to place less value on the lives of older adults, inflicting serious harm on the community and resulting in poorer health care outcomes. Taking a person-centered approach to health care can be a sensitive, effective way to mitigate the risks posed by ageism.

Person-centered care means focusing on both the physical and emotional needs of a care-recipient, valuing and affirming their lifestyle, and treating them with respect.

According to the Alzheimer’s Association, four core principles of person-centered care (PDF, 212 KB) include:

  • Respecting and valuing the individual as a full member of society
  • Providing individualized emotional and physical spaces for care that are in tune with people’s changing needs
  • Understanding the perspective of the person in all care and activities
  • Providing supportive opportunities for social engagement to help people live their lives and experience well-being 

Social workers in particular can apply person-centered care to the person-in-environment framework, which guides providers to think holistically about a person’s social, structural and cultural environment when developing a plan of care that maintains quality of life.

For families who move their loved ones to a nursing facility or hospital, that includes being involved in the creation and implementation of a treatment plan. And, when possible, involving the patients themselves. 

“Usually [high-functioning patients] have no say in their own caregiving,” Meehan said.

Aguilar and Meehan said professional providers and family caregivers can use a person-centered approach when engaging with and caring for adults with any type of cognitive impairment. They recommended the following strategies:

Tips for Person-Centered Care for People with Cognitive Impairment

See the person, not just the diagnosis. Beyond addressing physical or cognitive ability, focus on the person’s emotional and mental health needs, their interests and lifestyle preferences.

Take a holistic approach. Consider the social and environmental factors that affect the person, including where they live, who they live with, how they spend their day and other factors.

Value time with the care recipient. Because older adults may be nearing the end of their lives, it’s important to make them feel their presence and quality time is valuable.

Use person-first language. Language that prioritizes a diagnosis can be dehumanizing. Use “person with dementia” instead of “dementia patient” to focus on their personhood and identity first.

Focus on the person’s reality, not the world’s reality. Trying to explain a crisis repeatedly may be lost on someone whose memory loss is severe. Instead of reminding them — which may lead to agitation and confusion — focus on their reality.

Redirect attention to positive, pleasant conversations. Seeing or hearing stressful information is unavoidable. When it happens, quickly direct attention to something more positive to minimize feelings of agitation or stress.

Use calm, reassuring tones when speaking. People with cognitive impairments may get easily agitated or confused because of memory loss. Calm, warm language can help them feel safe and secure.

Refrain from questions that require memory recall. Many adults are used to small talk including, “How has your day been?” or “What did you eat for breakfast?” These can cause feelings of disorientation, frustration or insecurity if the person cannot recall the answers.

Encourage and accept the presence of an advocate during a health care visit. Memory loss may severely affect a person’s ability to understand and follow a treatment plan. An advocate’s presence is pivotal to health outcomes and safety.

While COVID-19 regulations often prohibit additional personnel from being present in a health care visit, Aguilar said that accompaniment for people with cognitive impairment is essential.

“You would not allow a minor to go into a visit without the adult present,” Aguilar said. “So why would you allow someone who has any type of diagnosis that involves cognitive impairment to go into a doctor’s visit alone? Can they really be their best advocate, especially under these stressful situations?”

Crisis Care for Adults With Cognitive Impairment

Though crises are unpredictable, they are often inevitable. The CDC encourages having a plan to care for older adults as a key factor in minimizing harm. Making a conscious effort to maintain quality of care for adults with cognitive impairment can significantly improve the outcomes of any crisis. 

In a webinar hosted by UsAgainstAlzheimer’s about caregiving during the COVID-19 pandemic, Aguilar, who served as a panelist, said that it can be challenging to reach patients who lack internet or technology to access health information during a crisis — which is all the more reason to push for more equitable access to health care and even experiment with ways to reach vulnerable populations. 

“If you can’t reach people through telehealth, you have to find other ways,” Aguilar said. Because many older adults — especially those living in low-income communities — have less access and familiarity with using telehealth services, Aguilar suggested trying to reach their younger family members through social media platforms or other mediums to indirectly spread information about resources. 

Still, there are many opportunities for providers to use their unique skill sets and positions to implement and advocate health equity for people with cognitive impairment and their families.

Strategies for Health Care Providers

Use a holistic approach to caring for patients. Ask care recipients about their emotional and mental health, their environment at home, their socialization and other factors that contribute to their overall well-being to identify areas of concern or opportunities for better care.

Be patient and gentle when speaking to people with cognitive impairment. “It’s never ‘same stuff, different day,’” Meehan said. “They’re going to forget things from one minute to the next. That’s what makes the redirection so important.”

Talk to family members about their plans for crisis care. “Ask them where they’re getting their news from,” Aguilar said. Offer resources with accurate information and ask about their ideas for care when developing a treatment plan together.

Maintain and encourage the use of virtual or socially distanced visits. “Visibly seeing a loved one enhances their quality of life and helps them heal better. We’re recommending this be a requirement for all facilities,” Aguilar said.

Expand the distribution of virtual care resources. People get information from many different mediums. In addition being disseminated through the Internet, emergency and crisis information needs to be shared through public service announcements over radio and telephone, as well as in print ads and posters in public.

Make sure patients know their rights. Communities of color are less likely to pursue treatment because of fear of discrimination from providers, especially those who face a risk of detention or deportation. Spreading information about rights to privacy and treatment can help people feel safe when seeking care.

Participate in public service announcements. “Providers are still a trusted resource of information. Being active in community efforts to spread information can improve outcomes,” Aguilar said. “There really needs to be a closer collaboration with news outlets about how information is being communicated out there.”

While providing care during a crisis can feel immensely challenging, Meehan says people receiving dementia care likely feel the same way.

“Think about someone who is losing their ability to talk and remember basic things,” he said. “They’re overwhelmed by their environments and they’re frustrated, too.” 

Ultimately, Meehan and Aguilar both say they hope for more providers to approach people with cognitive impairment with the same humanity and sensitivity that they would anyone else. 

“Their life is still valuable,” Aguilar said.

Additional Resources About Cognitive Impairment and Caregiving During a Crisis

Citation for this content: The MSW@USC, the online Master of Social Work program at the University of Southern California.