Coronavirus (COVID-19): Tips for Dementia Caregivers in Long-Term or Community-Based Settings

Emergency situations, such as the COVID-19 pandemic, present special challenges to the delivery of Alzheimer’s and dementia care in long-term and community-based care settings, including nursing homes, assisted living, home health, home care and adult day care. People receiving care or utilizing services in these settings are particularly vulnerable to complications due to their age and other concurrent medical conditions.

Employees can also be affected in emergencies. Maintaining operations with the expected staffing shortages during any pandemic, epidemic or disaster can be very difficult. During this time, non-clinical staff may be needed to assist with care.

Caregivers in long-term or community-based care settings should consider the emergency preparedness guidelines from the Centers for Disease Control (CDC), in addition to the following suggestions for meeting the needs of persons living with dementia during a major disease outbreak or disaster.

Download the Association’s emergency preparedness guidelines for Alzheimer’s and dementia caregivers in long-term or community-based care settings. 

Prevent illness during an emergency

Most likely, dementia does not increase risk for COVID-19, just like dementia does not increase risk for flu. However, dementia-related behaviors, increased age and common health conditions that often accompany dementia may increase risk.

Persons living with dementia may need reminders regarding:

• Hand-washing and moisturizing. Caregivers should consider implementing a supervised hand-washing schedule.
• Covering nose and mouth during a sneeze or cough.
• Refraining from placing things in the mouth.
• Staying in a particular area.
• Taking medications appropriately.
• Adopting social distancing practices and refraining from sharing items.
• Following any other procedures that would require memory and judgment.

Provide person-centered care

As stated in the Alzheimer’s Association Dementia Care Practice Recommendations, one of the most important steps in providing quality dementia care is to know the person. In the event of a major disease outbreak or disaster, this may be more difficult for temporary staff members or those working in a new department or other health care setting.

It is recommended that a nurse, or social worker or staff under the supervision of licensed clinicians completes a HIPAA-compliant personal information form for each resident and keeps it in an easily accessible place, such as inside a closet door in a folder attached to the back of a door.

Information on the form can include:

• Individual’s preferred name (and pronouns); cultural background; religious or spiritual practices; and past hobbies and interests.
• Names of family and friends.
• What upsets the person and what calms him or her down.
• Sleep habits; eating and drinking patterns and abilities; typical patterns of behavior; and normal daily structure and routines.
• Remaining abilities, motor skills, verbal processing and communication abilities and methods.

Sharing information about a person living with dementia with the care team is very important in terms of providing quality, consistent and effective care. Given the care team may change frequently during a pandemic or disaster, briefing meetings at the start of the shift will allow the staff to share pertinent information about those receiving care.

Advance planning

Planning for the future is an important part of person-centered care, as it helps ensure that an individual’s wishes regarding treatment and care options are fulfilled.

• Be aware of a person’s advance directives and ensure they follow the person if a transfer is necessary.
• Ensuring individuals’ advance directives, Provider Orders for Life-Sustaining Treatment (POLST), and other documents are all up to date with current documented wishes, and physician orders are consistent with these wishes.

Help keep families and friends connected

Individuals living in long-term care and community-based dementia care settings may need help communicating with their families and loved ones during a crisis. Caregivers can help keep families and friends connected through a variety of methods, including:

• Scheduling telephone or video calls to keep connected and/or encouraging families and friends to send notes and photos.
• Developing a “What You Should Know” fact sheet to explain what families, friends and staff need to know in the event of an emergency.
• Providing information about how families can receive updates or talk to a care provider about the person living with dementia.
• Ensuring that adaptive devices are available to the individual where appropriate, e.g., hearing aids and eyeglasses.

Remember that each family is unique. For some people, their closest supporters may not be biological or legal family members, but friends or community members.

Assist with eating and drinking

Especially when there is risk of contracting a virus, it is important for persons living with dementia to maintain their strength. Strategies to assist individuals with eating and drinking include:

• Staff should familiarize themselves with the person’s eating and drinking patterns and abilities. He or she may need to be reminded or prompted to drink and eat as they might not be able to recognize hunger or thirst.
• Verbal, visual or tactile cues such as high contrast dinnerware, adaptive utensils, graded approaches and modeling behavior may encourage individuals to eat and drink.
• Sitting and talking with the person with dementia during meal times may improve intake.

Any evidence of difficulty in swallowing should be assessed by appropriately licensed clinical staff. Licensed or trained personnel should assist and monitor all persons with dementia who have been identified as having a choking risk or a history of swallowing difficulties.

Monitor walking and unsafe wandering

Walking is a purposeful motor activity that promotes mobility and strength building. Unsafe wandering occurs when a person living with dementia gets lost, intrudes into inappropriate places or leaves a safe environment. The risk for unsafe wandering may increase when the person becomes upset, agitated or faces stressful situations, which may become more common in emergency situations.

Possible interventions include:

• Provide persons with dementia safe spaces to walk about.
• Secure the perimeter of areas, if possible.
• Ensure that persons with dementia get regular exercise.
• Provide structured activities throughout the day.
• Spending time outdoors in a safe environment.

Observe and respond to dementia-related behaviors

Nonverbal dementia-related behaviors may be an option or response for a person living with dementia to communicate a feeling, unmet need or intention. These behaviors are triggered by the interaction between the individual and his or her social and physical environment. A response may include striking out, screaming, or becoming very agitated or emotional. The dementia care provider’s role is to observe and attempt to understand what the person living with dementia is trying to communicate.

Root causes of dementia-related behaviors may include:

• Pain.
• Hunger.
• Fear, depression, frustration.
• Loneliness, helplessness, boredom.
• Hallucinations and/or overstimulation.
• Changes in environment or routine.
• Difficulty understanding or misinterpreting the environment.
• Difficulty expressing thoughts or feelings.
• Unfamiliarity with personal protective equipment or clothing, such as gowns or masks.

Strategies to observe and respond to dementia-related behaviors include:

• Rule out pain, thirst, hunger or the need to use the bathroom as a source of agitation.
• Speak in a calm low-pitched voice.
• Try to reduce excess stimulation.
• Ask others what works for them.
• Validate the individual's emotions. Focus on the feelings, not necessarily the content of what the person is saying. Sometimes the emotions are more important than what is said.
• Understand that the individual may be expressing thoughts and feelings from their own reality, which may differ from generally acknowledged reality. Offer reassurance and understanding, without challenging their words, can be effective.
• Through behavioral observation and attempted interventions, try to determine what helps meet the person’s needs and include the information in the individualized plan of care.
• Be aware of past traumas (veterans, abuse survivors, survivors of large-scale disasters).
• Never physically force the person to do something.

For more strategies and interventions, download the Alzheimer’s Association emergency preparedness guidelines for Alzheimer’s and dementia caregivers in long-term and community-based care settings.

Assessing the need for pharmacological treatment

If non-pharmacological practices are not effective after they have been used consistently, then medications may be appropriate when individuals living with dementia have severe symptoms or have the potential to harm themselves or others. Continued need for pharmacological treatment should be reassessed as required by the medication regimen or upon a change in the person’s condition.

Proactive strategies for addressing dementia-related behaviors

It can be difficult to anticipate and respond to dementia-related behaviors in a changing environment — especially in emergency situations. However, applying some of the following strategies may help:

• Provide a consistent routine.
• Use person-centered care approaches for all individuals living with dementia during activities of daily living — every interaction or task is an opportunity for engagement.
• Promote sharing of person-centered information across the care team.
• Encourage all staff to treat individuals living with dementia with dignity and respect.
• Put the person before the task.

Allow expanded visitation when safe 

Recent guidelines from the Centers for Medicare & Medicaid Services (CMS) and CDC have expanded visitation options in light of increasing vaccination rates across the country. Reuniting residents with their families can reduce the harmful impact social isolation has had on these individuals.

Facilities that are able to support visitation are encouraged to do so while following these important CMS guidelines:

• Ensure facilities, residents, and families adhere to the core principles of COVID-19 infection control, including maintaining physical distancing and conducting visits outdoors whenever possible. This continues to be the safest way to prevent the spread of COVID-19, particularly if either party has not been fully vaccinated.
• If residents are fully vaccinated, the new CMS guidelines do allow for close contact, including touch. In these situations, visitors must still wear a well-fitted mask while also physically distancing themselves from other residents and staff in the facility.
• Adhere to CMS guidance that limits or restricts visitation when less than 70% of the residents in the facility are fully vaccinated, or visitation to residents who are in quarantine including those with a confirmed COVID-19 infection.

Encourage visitors to follow safety precautions

Given the vulnerability of individuals living with Alzheimer’s and other dementia, you should encourage visitors to make appropriate considerations and take additional safety precautions when visiting care communities, including:

• Unvaccinated individuals should consider getting tested prior to visiting. The facility should also limit the number of unvaccinated individuals who visit at any one time.
• Visitor access should be limited to approved areas only, and avoid allowing them to enter other parts of the community. Visitors should also keep their distance from other residents as much as possible.
• Visits should be conducted outdoors when feasible to minimize risk of transmission. 
• Visitors should inform staff immediately if they develop a fever or symptoms consistent with COVID-19 within 14 days of their visit.
• Visitors should bring their own face mask, put it on before entering the facility and wear it at all times. Masks should be well-fitted and be secured over the mouth and nose.
• Give visitors access to a handwashing sink if possible. If soap and water are not available, provide and encourage use of an alcohol-based hand sanitizer with at least 60% alcohol.

Get vaccinated to protect yourself and others

We believe vaccines are an important step in protecting the health and safety of long-term care residents and staff, and we strongly encourage their use. 

As of April 19, all states have made the vaccine available to the general public, which includes anyone age 16 or over. The CDC recommends that you receive the vaccine as soon as you are eligible. Consult the CDC’s How Do I Find a COVID-19 Vaccine for information on how to find a vaccine provider in your state.

Even as vaccines are used, however, other protocols including PPE, rapid point of care testing and other safety measures must continue to be implemented to ensure a secure and safe environment.

For more information, see COVID-19 Vaccine: Answers for Dementia Caregivers and People Living with Alzheimer's.

COVID-19 resources from the CDC

• Guidance for Retirement Communities and Independent Living
• Preventing the Spread of COVID-19 in Retirement Communities and Independent Living Facilities (Interim Guidance)
• Coronavirus disease 2019 (COVID-19) Checklist: Older Persons

Crises can be challenging, especially for individuals living with Alzheimer’s and all other dementia. With some careful planning and attention to the unique needs of those receiving care, professionals may feel more empowered to respond quickly and appropriately to support individuals living with dementia.

Caring for People Living with Dementia During an Emergency

The Dementia Care Provider Roundtable has developed a video, Caring for People Living with Dementia During an Emergency, which provides tips and guidance for professionals in long-term and community-based care settings facing COVID-19 challenges. The video walks you through recommendations to provide person-centered care, prevent illness, help family and friends stay connected, assist with eating and drinking, monitor walking and unsafe wandering, and observe and respond to dementia-related behavior.

Presented in collaboration with: