Additional COVID-19 Guidance for Caregivers of People Living with Dementia in Community Settings

Caring for People Living with Dementia in Long-term Care Facilities (LTCFs): For information on how to care for people living with dementia in LTCFs including nursing homes, skilled nursing facilities, and assisted living facilities with memory care units/wings, please see CDC guidance for preparing these facilities for COVID-19.

Older adults and people with serious underlying medical conditions are at higher risk for severe illness from COVID-19, according to public health and clinical experts.1–2 Among adults with confirmed COVID-19, those aged 65 years and older are more likely to be hospitalized, to be admitted for intensive care, and to die. In fact, 8 out of 10 deaths associated with COVID-19 in the United States have been among adults aged 65 years and older.1–2

Older adults also have the highest rates of dementia. An estimated six million adults have some form of dementia, including Alzheimer’s disease, the most common type of dementia.3

Given the risks that older adults face from both COVID-19 and dementia, CDC is providing this additional guidance to caregivers of adults with Alzheimer’s disease and other types of dementia to reduce the spread of COVID-19 and to help them manage their patients’ physical and mental wellbeing as well as their own wellbeing. Not all people living with dementia require caregivers. Therefore, the degree of assistance a person needs will depend on the extent that their dementia has progressed. For people living with dementia, changes in behavior or worsening symptoms of dementia should be evaluated because they can be an indication of worsening stress and anxiety as well as COVID-19 or other infections.

If you care for someone living with dementia, it’s important that you know what you can do to protect yourself and others during the COVID-19 pandemic and what additional steps you can take to protect your loved one:

Know when you need to seek medical attention for your loved one.
- Call a healthcare provider if your loved one has symptoms of COVID-19.4
- Be aware that older adults with COVID-19 may not always have typical symptoms5 such as a fever or cough.
- Use CDC’s Self-Checker1 guide to help make decisions about your loved one and know when to seek appropriate medical care.
If your loved one has advanced dementia and needs to be hospitalized for COVID-19, make sure hospital staff know that your in-person assistance might be required to communicate important health information and emergency support. Here are several important issues to consider:
- Be prepared to be in a healthcare setting with your loved one. Be prepared to use personal protective measures as recommended by the hospital staff if you are in the room with your loved one.
- Be aware that you and healthcare providers may face difficulties caring for your loved one because he or she:
  - May not cooperate with care and may not follow personal protective measures such as wearing a cloth face covering or practicing social distancing
  - May refuse diagnostic procedures

In this case, do as much as you can, or as much as you are allowed to, to help the person living with advanced dementia to follow CDC guidance.6

If you get sick, follow CDC guidance7 and have a backup caregiver for your loved one.

Incorporate CDC guidance into your daily routine and the daily routine of your loved one:
- Wear cloth face coverings8 and make sure that others wear them.
  - Do NOT place a cloth face covering on anyone who has trouble breathing, is unconscious, is incapacitated, or is unable to remove the mask without assistance.
- Wash hands often.
- Cover coughs and sneezes with a tissue.
- Avoid touching eyes, nose, and mouth with unwashed hands.
- Clean and disinfect frequently touched surfaces.

Caregivers: Be Aware of the Symptoms for COVID-19

The first step in caring for people living with dementia in any setting is to understand that changes in behavior or worsening symptoms of dementia should be evaluated because they can be an indication of COVID-19 infection or worsening stress and anxiety. Not everyone with COVID-19 has symptoms, but when people with dementia do have COVID-19 symptoms,4 they can include the following:

Increased agitation
Increased confusion
Sudden sadness
Coughing
Difficulty breathing
Fever
Chills
Repeated shaking with chills
Muscle pain
Headache
Sore throat
New loss of taste or smell

Caregivers Can Be First Responders Under Stress: Know How to Take Care of Yourself

As a caregiver,9 you provide care to people who need some degree of ongoing assistance with everyday tasks on a regular basis. During this pandemic, you may also be a first responder, providing the first line of response and defense to your loved one living with dementia. First responders often experience stress due to heavy workloads, fatigue, and other situations that come with an emergency. There are important steps you should take during and after an emergency event to help manage and cope with stress.10 To take care of others, you must be feeling well and thinking clearly. Here are some tips on how to take care of yourself:

Eat a healthy diet, avoid using drugs and alcohol, and get plenty of sleep and regular exercise to help reduce stress and anxiety. Activities as simple as taking a walk, stretching, and deep breathing can help relieve stress.
Establish and maintain a routine. Try to eat meals at regular times, and put yourself on a sleep schedule to ensure you get enough rest. Include a positive or fun activity in your schedule that you can look forward to each day or week. If possible, schedule exercise into your daily routine.
Take breaks from watching, reading, or listening to news stories, including social media. Hearing about the pandemic repeatedly can be upsetting. If you want to stay up-to-date on the pandemic, visit CDC’s website for the latest recommendations on what you can do to protect yourself and those you care for.
Make time to unwind. Try to do activities you enjoy.
Connect with others. Reach out to family and friends. Talking to someone you trust about your concerns and feelings can help.
Call your healthcare provider if stress gets in the way of your daily activities for several days in a row.
Find a local support group. Support groups provide a safe place for you to find comfort in knowing you are not alone.
Have a backup caregiver. In case you become sick with COVID-19, a backup caregiver will ensure that your loved one continues to receive care. You can focus on caring for yourself.7

More Information

References

Razzaghi, et al. Severe Outcomes Among Patients with Coronavirus Disease 2019 (COVID-19) — United States, February 12–March 16, 2020. MMWR Early Release. 2020; 69
Centers for Disease Control and Prevention. Coronavirus Disease 2019: Older Adults. 2020. https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/older-adults.html
Centers for Disease Control and Prevention. Alzheimer’s Disease. 2019. https://www.cdc.gov/aging/aginginfo/alzheimers.htm
Centers for Disease Control and Prevention. Coronavirus Disease 2019: Symptoms of Coronavirus. 2020. https://www.cdc.gov/coronavirus/2019-ncov/symptoms-testing/symptoms.html
Centers for Disease Control and Prevention. Coronavirus Disease 2019: Preparing for COVID-19: Long-Term Care Facilities, Nursing Homes. 2020. https://www.cdc.gov/coronavirus/2019-ncov/hcp/long-term-care.html
Centers for Disease Control and Prevention. Coronavirus Disease 2019: How to Protect Yourself & Others. 2020. https://www.cdc.gov//coronavirus/2019-ncov/prevent-getting-sick/prevention.html
Centers for Disease Control and Prevention. What to Do If You Are Sick. 2020. https://www.cdc.gov/coronavirus/2019-ncov/if-you-are-sick/steps-when-sick.html
Centers for Disease Control and Prevention. Use of Cloth Face Coverings to Help Slow the Spread of COVID-19. 2020. https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick/diy-cloth-face-coverings.html
Centers for Disease Control and Prevention. Caregiving: Who are caregivers? 2019. https://www.cdc.gov/aging/caregiving/index.htm
Centers for Disease Control and Prevention. Coronavirus Disease 2019: Stress and Coping. 2020. https://www.cdc.gov/coronavirus/2019-ncov/daily-life-coping/managing-stress-anxiety.html