COVID-19 could worsen dementia health crisis |

“Lifesaving procedures in the ICU and social distancing measures are vitally important, but they may lead to long-term consequences for our older population: specifically, a rising wave of dementia in the wake of the current COVID-19 pandemic … Delirium affects up to half of hospitalized older adults and increases the risk for dementia in the long term.”

Those are among the conclusions by Shannon Halloway, Ph.D., R.N., an assistant professor at Rush University College of Nursing and a former Public Voices Fellow, and Bryan D. James, Ph.D., an epidemiologist and associate professor at the Rush University Medical Center Alzheimer’s Disease Center, in their May 19 Scientific American research article: “A Tsunami of Dementia Could Be on the Way.” This May 19 article is an excellent prelude to “Alzheimer’s And Brain Awareness Month” in June to help raise awareness about the disease and to show support for the millions of people worldwide living with Alzheimer’s or another form of dementia.

Even before the COVID-19 crisis, the statistics about dementia were grim: one in three older adults dies with Alzheimer’s or another dementia, killing more people than breast cancer and prostate cancer combined. In addition, deaths from Alzheimer’s disease, the most common form of dementia among older adults, have increased by 145% over the last 20 years.

Dementia is a progressive condition with no cure. People may live 8 to 10 years after diagnosis, with some living as long as 20 years. For Alzheimer’s disease specifically, 40% of this time is spent in the advanced stages of the condition. During these advanced stages, most people endure an irreversible loss of mental and bodily function in which they:

• Cannot recognize loved ones
• Cannot recognize surroundings
• Cannot speak or make oneself understood
• Experience personality
• changes
• Cannot respond to the environment, speak or control movement

Given these facts, you can understand why many people (45%) regard being confused all the time as a fate worse than death.

Advanced dementia is untreatable: there is no hope of recovery of mental function. Quality of life may be so poor with advanced dementia that treatment for other underlying conditions will not improve quality of life. It may, however, cause unnecessary suffering.

People with advanced dementia no longer communicate clearly so they cannot advocate for their care preferences. That is why planning for end-of-life care with dementia should happen now, before a dementia diagnosis, or at the early stages of a diagnosis, before thinking and speaking abilities fail.

Advance planning involves making thoughtful decisions, putting them into a written advance directive, and discussing those decisions with your loved ones and healthcare proxy, someone you trust to advise your healthcare providers about your care preferences if you are unconscious or mentally incapable of speaking for yourself.

Unfortunately, traditional advance directives are not enough to guide a dementia caregiver. They only outline whether a person wants the most invasive and aggressive end-of-life treatments, like resuscitation. However, the decisions about the kind of treatments that a person would or would not want if they were to get dementia starts far earlier than that.

My non-profit organization, Compassion & Choices, developed our Dementia Values & Priorities Tool, to address this reality. Through a series of questions, this free online resource helps you identify and document your care preferences in advance of a dementia diagnosis. It then creates a dementia health care directive, which you attach to your advance directive, so your health care proxy can carry out your personalized care plan. Creating a dementia-specific advance care plan lifts the burden off of loved ones to make difficult decisions when you can no longer speak for yourself. Remember: The actions you take now can preserve autonomy and dignity later.

Kim Callinan holds a master’s degree in public policy from Georgetown University. She is president & CEO of Compassion & Choices, the nation’s oldest and largest end-of-life care non-profit advocacy organization.