A message to Alzheimer’s caregivers
COVID-19 has created abrupt changes in the lives of people across the world with a major impact on elderly people, particularly those with dementia and their caregivers. Changes to daily routine are very difficult for people with Alzheimer’s and related dementias, especially with the added stress it creates for them and their caregivers.
Researchers in China have been tracking the impact of COVID-19 on people with Alzheimer’s and those who care for them. Not surprisingly, the Chinese researchers’ report shows increases in feelings of anxiety, worry, agitation, irritability and anger among both groups.
Changes in at-home care arrangements have also led to mood problems, wandering, delusions and aggression among people with Alzheimer’s. Those living in assisted care facilities are facing reduced interaction with their caregivers and suspension of group activities that gave their days structure. These patients exhibited more apathy, restlessness and withdrawal.
My 40 years of treating patients with Alzheimer’s has taught me how intertwined the health of the caregiver and the patient are. That has never been truer than today. My number one prescription to help caregivers and patients alike is to reduce stress and maintain their health during this unprecedented time. Here is some helpful advice.
Tips to avoid coronavirus infection.
You’ve heard a lot about how to avoid coronavirus infection — wash your hands often and keep them away from your face, stay six feet from others and disinfect surfaces frequently. It’s important to recognize that a person with Alzheimer’s may find all of this challenging.
Those with mild cognitive impairment may only need gentle support, like verbal reminders or signs in the bathroom and kitchen prompting them to wash their hands. A timer could also help both them and you make sure you’re washing for the full 20 seconds. Those with more advanced cognitive decline will need more active support from caregivers—for example, washing hands together.
Social distancing can also be a challenge, and caregivers need to take charge of this both outside and inside the house. Home care aides or other friends and family may provide vital breaks that caregivers need. Maintaining this routine is essential for caregiver health, but to minimize the risk of coronavirus transmission, follow CDC’s recommend precautions for caregivers at home. These precautions are good for anyone entering your home.
Make your day as normal as possible.
COVID-19 is an unprecedented situation, so don’t expect perfection, but try for as much routine as possible. Control what you can. Create a schedule, get up and go to sleep at the same time each day, and minimize disruptions (for example, limit how much news you watch). Play soothing music, sing, watch old movies and take walks, even if it’s just around your yard, to get fresh air. If day care was a part of your routine until recently, try to reproduce the activities your loved one did there in the home. Small, achievable activities and tasks like arts and crafts, folding laundry, or making simple recipes together may work well.
Clear and refresh your mind, get exercise, and eat right.
Walks are not only good exercise, but a way to relax, clear your mind and minimize social isolation by greeting neighbors (from a safe distance, of course). Meditation is another easy and inexpensive way to reduce stress and anxiety, and it may also help improve sleep. Yoga can also reduce stress and enhance brain function.
You can look for ways to exercise inside the house. Even small amounts of exercise can be beneficial. One study showed that young people who hurried up and down stairs for just 20 seconds three times a week increased their fitness. Many fitness professionals are offering free or discounted fitness classes and there are also websites that provide exercise classes.
Current restrictions on when and how we can leave the house have very practical implications, like our ability to grocery shop. Do your best to maintain a balanced diet—including whole foods such as fish, nuts and vegetables and remember to drink enough water.
Have a plan in place in case one of you shows COVID-19 symptoms.
Advance planning will help reduce stress if one of you gets sick. People with dementia often cannot express themselves or explain symptoms clearly, so it’s important to watch for any changes in their behavior that indicate they are not feeling well.
An acute change in mental status is a primary indicator of infection for two reasons. First, whenever a dementia patient develops an infection, they are prone to delirium, a deterioration or change in mental status, including behavior disorders like agitation. Second, neurological complications of coronavirus infection have been reported including hallucinations and a decline in cognitive function.
Unless symptoms are life threatening, call before going to your doctor’s office, urgent care or hospital. Facilities have strict protocols in place to reduce transmission of the coronavirus and that usually includes limiting entry. It is also much better to keep someone with Alzheimer’s in an environment they already know—so caring for them at home if possible is highly preferred.
Now is also the time to think about what happens if you get sick. Who will take over if you can’t provide daily care? Where will you isolate yourself to reduce the risk of passing the illness to others?
It’s a good idea to write out the care information for the person with dementia. What medications does he or she take, and when? What is calming and what triggers anxiety? This information should go in a package along with copies of legal documents, including living wills and healthcare proxies, and anything else healthcare providers will need if you’re not there. Consider how you will communicate—can the person with Alzheimer’s use a smartphone? If so, have it ready to add to the package along with a charger.
What to expect if your loved one goes to (or is already in) a medical facility.
COVID-19 isolation procedures make if highly unlikely you’ll be able to visit. Talk to the institution about how you can stay in touch—calls, video chats, or perhaps emails. If your loved one can’t manage these types of communications, can the facility provide a point person who will be your link to them?
Finally, stay connected and share your feelings with others.
Social connection improves physical and mental health and can even strengthen the immune system. Make a list of people you can reach out to on a regular basis—whether by phone, text, email or one of the many video options that can connect us to others hunkering down in their homes, like FaceTime, Zoom and Skype. Make it a point to check in with at least one person daily to provide and get support.
“Social distance” is today’s catchphrase, but I encourage you to think of it differently. We need physical distance, but social closeness is more important than ever