The COVID-19 pandemic presents additional challenges for the more than 5 million Americans living with Alzheimer’s and their 16 million caregivers. People living with Alzheimer’s and other dementia are at increased risk of having serious complications relating to COVID-19 due to their age and likelihood of coexisting conditions. According to the Centers for Disease Control and Prevention (CDC), older adults and those with serious chronic medical conditions like heart disease, diabetes, and lung disease are at higher risk of getting very sick from the coronavirus. More than 95% of people living with Alzheimer’s have one or more other chronic conditions. This includes 38% of people with Alzheimer’s that also have heart disease and 37% that also have diabetes. More must be done to meet the urgent needs of this vulnerable population.

Our Call to Policymakers

AIM and the Alzheimer’s Association are sounding the alarm and urging policymakers to act to protect our nation’s most vulnerable. In May, we released a comprehensive set of recommendations for state and federal lawmakers to implement new policy solutions which will address the immediate and long-term issues impacting care facilities during the COVID-19 pandemic Learn More.

Our Call to Congress

As Congress continues to develop and enact legislation to respond to the COVID-19 pandemic, AIM and the Alzheimer’s Association continue to support legislation and policy priorities that can have a meaningful impact on the millions of families affected by Alzheimer’s and all dementia, and the Alzheimer’s Association’s ability to serve them during this crisis and beyond. We encourage Congress to incorporate the following bipartisan priorities into forthcoming relief packages:

• Promoting Alzheimer’s Awareness to Prevent Elder Abuse Act (S.3703/H.R.6813) Unfortunately, people living with Alzheimer’s and other dementia are at heightened risk for experiencing elder abuse. Yet, often the professionals — including police, firefighters, emergency personnel and more — who deal with elder abuse have little knowledge about working with people who have dementia. The bipartisan initiative would require the Department of Justice (DOJ) to develop training materials to assist professionals supporting victims of abuse living with Alzheimer’s and other dementias. Materials would be designed to assist law enforcement officers, firefighters, prosecutors, judges, medical personnel, social workers, and others as they increasingly encounter these vulnerable individuals amidst the current pandemic. Working with these individuals can be fundamentally different from working with other older victims of abuse or exploitation, making the inclusion of this effort crucial to their protection.
• Improving HOPE for Alzheimer’s Act (S.880/H.R.1873) The COVID-19 pandemic is challenging health systems worldwide and raising many important issues, including care planning in the presence of acute life-threatening illness, especially for patients with chronic diseases like Alzheimer’s and other dementia. Robust care planning is the first step to learning about long-term care options and selecting the preferred, most appropriate services for persons with dementia, families, and caregivers. This bipartisan bill would educate clinicians on existing Alzheimer’s and dementia care planning services available through Medicare in upcoming legislation to combat the pandemic.
• Relief for Nonprofit Health Charities As a leading voluntary health charity, the Alzheimer’s Association is committed to quality care, support, and research that will benefit people living with Alzheimer’s disease and other dementia, caregivers, and families, especially in the face of the COVID-19 pandemic. We are urging Congress to establish an exclusive fund to support nonprofit employers with between 500 and 10,000 employees, including loan forgiveness and other provisions to enable the Alzheimer’s Association and other large health charities to continue to effectively serve the communities that depend on our resources now and in the future.

Our Call to State Governments

While state governments are at the forefront of the COVID-19 response, the response to the crisis in nursing homes and assisted living communities has not been sufficiently prioritized by state officials. Across the country, AIM and the Alzheimer's Association are engaging Governors, state agency officials, long-term care (LTC) providers and other stakeholders to identify the most pressing issues and related solutions so that they are better equipped to address the crisis in LTC settings.

Recent state advocacy efforts have led state governments to:

• Require testing of all residents and workers in LTC settings and reporting to public health officials. (New York)
• Require each LTC facility to develop a written testing plan and response strategy for COVID-19 infection control which must conform to CDC guidance and standards, including (but not limited to) identifying a specific laboratory contracted to provide testing services. (Illinois)
• Require long-term care facilities to report the number of known COVID-19 cases and mortalities among residents and employees to the state Department of Public Health on a daily basis; require the department to update this data every day and make it available to the public; and require the facility to report the known number of COVID-19 positive cases and deaths to each resident’s health care proxy or emergency contact. (Massachusetts)
• Establish a state administered program that oversees regional response health collaboratives, public-private partnerships with health care systems and academic medical centers to support long-term care facilities to ensure they have appropriate infection prevention procedures in place and to increase the testing of staff and residents (including those who may be asymptomatic), and to implement best practices regarding infection control including remote monitoring and other forms of advanced clinical care. (Pennsylvania)
• Launch a multi-agency support team to help LTC facilities experiencing an increase in COVID-19 cases with support that includes development of infection control assessments, help with staffing agencies to meet care and operational needs, access to adequate PPE, and assistance developing alternative placement and/or quarantine plans for residents who have COVID-19. (Oregon)
• Establish person-centered care transition policies. (North Dakota)
• Administer $500 stipends for licensed vocational nurses (LVNs) and certified nurse assistants (CNAs) that are working in a skilled nursing facility, in recognition of their work during the COVID-19 pandemic. (California)
• Curb social isolation and enable the ongoing communication between LTC residents and their loved ones. (Florida)
• Amend hospital visitation restrictions to permit a support person (e.g. family member) at the patient bedside for patients for whom a support person has been determined to be essential to the care of the patient (medically necessary) including patients with intellectual and/or developmental disabilities and patients with cognitive impairments including dementia. (New York)

Once the immediate crisis in long-term care settings is curbed, critical work will need to continue to ensure that people with dementia receive high quality care as the fall-out from the pandemic evolves. AIM and the Alzheimer’s Association calls on state governments to:

• Bolster the direct care workforce and implement dementia-specific protocols to better sustain the long-term care system.
• Ensure that the voices of vulnerable and older adults, including those living with dementia, are represented in statewide task forces, commissions and work groups established to address the current and future needs of long-term care in every state.

Resources

Dementia-Specific Public Health Resources

• In homes and the community
• Emergency departments and hospitals
• Long-term care setting

Dementia-Specific Resources for Professional and Family Care Providers

• COVID-19 and Dementia: Tips for Professionals in Long-Term Care Facilities
• Coronavirus (COVID-19): Tips for Dementia Caregivers

Fact Sheet: COVID-19 and Individuals with Alzheimer’s

COVID-19, Alzheimer’s and Dementia: What You Need to Know

Alzheimer's Association 24/7 Helpline

Letter Sent to Capitol Hill

The following letters have been sent to Capitol Hill regarding policy provisions that would impact the Alzheimer’s and dementia community.