Addressing COVID-19 for dementia & Alzheimer’s caregivers

By Pamela J. Myers
MAOM, BSN, RN
Alzheimer’s Association
NW and Central Ohio
        The Food and Drug Administration (FDA) approval of multiple COVID-19 vaccines brings hope to many, especially those living with Alzheimer’s and dementia and their caregivers who have been critically impacted by the pandemic.
        The Alzheimer’s Association offers this guidance about what you can expect once a COVID-19 vaccine becomes available to you:
        • Should people living with Alzheimer’s and other dementias get the COVID-19 vaccine?
        Vaccines are an important step in protecting the health and safety of long-term care residents and staff, and the Alzheimer’s Association strongly encourages their use. However, it is important that individuals and families consult with health care providers about any questions related to an individual and the vaccine.
        • Are the vaccines safe for people living with Alzheimer’s and other dementias? 
        Based on information from the FDA, the COVID-19 vaccines were tested in large clinical trials to make sure they meet safety standards. Many people were recruited to participate in these trials to see how the vaccines offer protection to people of different ages, races and ethnicities, as well as those with different medical conditions. If you are concerned about the safety of these vaccines, it is important to talk to your health care provider. 
        • My family member or friend has dementia but doesn’t live in a long-term care setting. When will they have access to the vaccine and how will they get it?
        At this time, the CDC recommends that front-line health workers and residents and staff in long-term care settings
be the first groups to receive the vaccine. High-risk populations and individuals living with multiple diseases or medical conditions (including Alzheimer’s and other dementias) are expected to be in the second group of distribution.
        • What if the person living with dementia is unable to provide consent for vaccination?  
        Consent for the coronavirus vaccine should be considered in the same manner as other vaccines and health care decisions. If a resident cannot consent, health care providers will talk to the individual’s dedicated power of attorney or other determined family member. 
 
        COVID-19 vaccine information for dementia caregivers
        • As a caregiver in close contact with the person living with dementia, should I get vaccinated even though I am not in the priority group?
        Currently, the vaccine is only being given to high-risk groups, so you may not have the option to be vaccinated. However, we would encourage caregivers to get vaccinated as soon as they are able to do so.
        • My loved one in long-term care has been vaccinated. Is it safe for me to visit? 
        Visitation is appropriate when it is safe, and that determination of safety must ultimately be made by public health infectious disease experts. The Association recognizes that ending social isolation and reuniting families is of the utmost importance and we now have the tools and resources to make this possible.
        We believe vaccinations are a very important step in protecting the health and safety of long-term care residents and staff. Even as vaccines are used, 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 visitation.
        • What if someone elects not to take the vaccine? 
        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. Forced vaccinations are extremely rare in any situation for any disease. If vaccines are not used, other protocols including PPE, rapid point of care testing and other safety measures must be implemented to ensure a secure and safe environment for visitation.
 
Keeping loved ones safe
        Even with widespread vaccination on the horizon, it is important to consider the risks and take additional safety precautions for people living with dementia. Here are some additional tips for promoting your loved one’s safety during the COVID-19 pandemic:
        Tips for dementia caregivers at home
        Caregivers of individuals living with Alzheimer’s and all other dementia should follow guidelines from the CDC, and consider the following tips:
        For people living with dementia, increased confusion is often the first symptom of any illness. If a person living with dementia shows rapidly increased confusion, contact your health care provider for advice. Unless the person is having difficulty breathing or a very high fever, it is recommended that you call your health care provider instead of going directly to an emergency room. Your doctor may be able to treat the person without a visit to the hospital. 
        People living with dementia may need extra and/or written reminders and support to remember important hygienic practices from one day to the next.
        • Consider placing signs in the bathroom and elsewhere to remind people with dementia to wash their hands with soap for 20 seconds. 
        • Demonstrate thorough hand-washing. 
        • Alcohol-based hand sanitizer with at least 60% alcohol can be a quick alternative to handwashing if the person with dementia cannot get to a sink or wash his/her hands easily.
        • Ask your pharmacist or doctor about filling prescriptions for a greater number of days to reduce trips to the pharmacy. 
        • Think ahead and make alternative plans for the person with dementia should adult day care, respite, etc. be modified or canceled in response to COVID-19.
        • Plan ahead and make alternative plans for care management if the primary caregiver should become sick. 
        Supporting dementia patients in care settings:
        • Check with the facility regarding their procedures for managing COVID-19 risk. Ensure they have your emergency contact information and the information of another family member or friend as a backup.
        • Do not visit your family member if you have any signs or symptoms of illness. 
        • Depending on the situation in your local area, facilities may limit or not allow visitors. This is to protect the residents but it can be difficult if you are unable to see your family member. 
        If visitation is not allowed, ask the facility how you can have contact with your family member. Options include telephone calls, video chats or even emails to check in. 
        If your family member is unable to engage in calls or video chats, ask the facility how you can keep in touch with facility staff in order to get updates. ​
        For additional questions or information, contact the Northwest Ohio Chapter of the Alzheimer’s Association for support 419-537-1999 or pjmyers@alz.org