Public health agencies are engaged in — and often in charge of — the community’s disaster and emergency preparedness and response. People living with dementia and their caregivers have unique needs that must be addressed and planned for in a variety of disaster and emergency situations.
COVID-19, dementia and public health
During the COVID-19 pandemic, people living with Alzheimer's and other dementia and their caregivers are experiencing unique challenges that increase risk for infection, preventable hospitalizations and admission to long-term care. Public health professionals play a critical role in minimizing these negative impacts. Addressing the special vulnerabilities of people living with dementia and caregivers during the pandemic can help save lives, while also protecting the larger community, and may reduce strain on health care systems.
The impact of the COVID-19 pandemic on people living with dementia is clear. Over one-third of Medicare beneficiaries hospitalized with COVID-19 have had a dementia diagnosis. Additionally, in 2020-2021, there were approximately 57,000 more deaths than expected due to Alzheimer's or another dementia. While these deaths may not be directly attributed to COVID-19, factors associated with the pandemic — including overburdened health care systems, increased social isolation, missed COVID-19 diagnoses, and lapses in long-term care — may all contribute to this increase.
Learn more: COVID-19 and Individuals with Alzheimer's (PDF) fact sheet.
Vaccines are an important step in protecting the health and safety of all people, including people living with dementia and their caregivers, as well their family, friends, colleagues and community members. Public health departments across the country continue to organize, promote and provide COVID-19 vaccinations to their communities. See answers to questions about COVID-19 vaccinations specific for people living with dementia and their caregivers.
Tips for public health response to COVID
People living with dementia may find it difficult to understand questions about recent contacts for contact tracing, describe symptoms, adhere to self-isolation or quarantines, wear a mask, remember to wash their hands frequently, or take other measures to protect themselves and others. They may also experience social isolation more than other populations. Public health practitioners can help alleviate these challenges by incorporating the guidance below into COVID-19 protocol and procedure.
Communications and coordination
- Set a standard of involving caregivers when working with a person living with dementia. Engage caregivers in communications, planning and supporting adherence.
- Ensure contact tracers are well-trained to identify signs of cognitive impairment, adapt questioning for these individuals and ask if anyone helps them (e.g., family, friends and care professionals). The Alzheimer's Association's Communication and Alzheimer's page has tips based on stages of dementia. Training should build awareness of different cultural views of dementia and caregiving.
- Distribute the Alzheimer's Association 24/7 Helpline (800.272.3900) to community members, health care and community service professionals, and first responders to access the latest expert guidance. The Helpline also can direct callers to a wide array of local programs and services, including virtual support groups.
- Coordinate with law enforcement to review, and update as needed, protocols for individuals living with dementia who wander, to minimize potential COVID-19 exposures.
- Promote use of the Alzheimer's Association's guidance for long-term care professionals, including provisional workers hired due to workforce shortages or members of strike/bridge teams aiding with infection control.
- Provide quarantine and self-isolation support for the unique challenges related to dementia. Case management, instructions or printed prompts, daily phone calls, rides for testing, and care packages with food, medications and supplies are ways to support adherence to plans.
- Educate professionals who support quarantine and self-isolation to address social isolation as well as dementia-related complications such as disorientation.
Support for caregivers
- Caregivers may experience even higher levels of stress and a sense of social isolation. Provide support and resources, such as referrals to respite care.
- Help caregivers to identify what support they themselves need to assist the person living with dementia and also to develop back-up plans, such as for short-term 24-hour care, if caregivers become unable to provide support.
- Ensure caregivers have plans in place for longer-term support if they become unable to provide care for an extended period of time, including situations in which the caregiver has an unplanned hospitalization.
- Help caregivers with access to virtual delivery of services such as non-urgent primary care, case management, support groups, community education and behavioral health.
To help ensure that local and state preparedness and response plans address the particular vulnerabilities of people living with dementia, public health agencies must elicit insights from people living with dementia, caregivers, and experts on cognitive impairment. Further, emergency responders and shelter staff benefit from specific training about the signs and symptoms of dementia and other cognitive impairments.
Emergencies, disasters and crises can result in difficult care transitions — moving from one location of care to another — for people living with dementia, especially due to evacuations or hospitalizations. Supporting Care Transitions for People Living with Dementia as Part of Emergency Preparedness provides guidance for public health agencies to consider the needs of people living with dementia in emergency planning. The guidance offers strategies to avoid or minimize challenging transitions by anticipating and addressing barriers to care that frequently arise during crises.
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