Caring for a loved one with Alzheimer’s disease during the pandemic brings about challenges, especially given the social distancing measures put in place.
“There’s no perfect solution for anybody these days, but if you are a caregiver for someone with dementia in your home or in a facility, you are facing uncharted territory,” Tom Meuser, PhD, director of the Center for Excellence in Aging & Health at the University of New England, shared.
Experts offer the following 5 simple tips on how to navigate the complex and quickly changing environment.
1. Focus on safe hygiene
Because those with Alzheimer’s and other types of dementia may forget to wash their hands, Beth Kallmyer, vice president of care and support at the Alzheimer’s Association, encourages caregivers to be extra vigilant in helping individuals practice safe hygiene.
“In some situations, caregivers [can] help them do that either by setting up a schedule to do hand washing on a regular basis or having signs in the bathroom or by the kitchen sink to remind them to wash their hands for 20 seconds,” Kallmyer shared.
Repetition can help encourage behavior changes in those with moderate dementia.
“Physical demonstration of the behavior can be helpful where you guide the person by modeling good hygiene yourself,” Meuser said.
However, if your loved one isn’t leaving the home and isn’t exposed to other people, he says to consider their risk.
“On one hand you can go crazy about educating your loved one on hygiene and what’s going on to the point where you may cause them unnecessary stress because they’re not capable of learning and remembering. Do the best you can, given the situation,” he said.
2. Plan for gaps in caregiving
As adult day care programs shut down and health services become less available due to public health containment strategies for COVID-19, families should anticipate that less help and support may be available for their loved one.
“In the event any facility does close… our clients can be transferred to a similar level of care,” Barlowe said.
If you care for a loved one in your home, Kallmyer said to think about who will step in if you become ill.
“This is critical for family caregivers to think about now before there is a problem. If you do have to make a different decision about who’s providing care, it’s really hard to do that in the middle of a crisis. If you are a spousal caregiver or family caregiver… we want families to have hard discussions and come together to figure out how they are going to fill the gap if someone gets sick,” she said.
Meuser said reach out to family, friends, and neighbors to assess the potential support you have.
“You might assume that someone in your close network wouldn’t help, but you don’t know until you ask. Have a little humility and allow yourself to ask, which is hard for some caregivers, especially if you’ve been burned in the past,” he said.
Avoid judging yourself by the standards you held as a caregiver a few months ago, he added.
“Recognize that the playing field is different and you’re going to do the best thing that you can as a caregiver,” said Meuser.
If you’re forced to bring a loved one home from a facility, Barlowe said that aging life care professionals can help with the transition and put you in touch with local resources, such as durable medical supply companies and home health companies, as well as explain the regulations of these industries.
“The loved one may need to be quarantined for a period of time to ensure they are not bringing the virus into the home and/or infecting their caregiver(s). If this is impossible due to dementia or physical complications requiring regular contact, attempt to limit the amount of caregivers caring for the person. I would even consider a ‘live-in’ caregiver if continuous care is needed to avoid several caregivers coming in and out to do shift type work,” Barlowe said.
To find home agencies and companies in your area, visit the Alzheimer’s Association Community Resource Finder.
You can also call the association’s free 24/7 Helpline at 800-272-3900.
When it comes to managing regular doctor’s appointments, Barlowe recommends contacting the doctor’s office and discussing the risks of having to transport your loved one to the office.
Most offices are postponing nonessential appointments and scheduling telehealth sessions when possible.
“This pandemic is extremely challenging for someone with Alzheimer’s disease as they cannot grasp the magnitude of the situation. I recommend for their caregiver’s safety, as well as their safety, that they remain at home and avoid medical appointments if at all possible until the situation is safer,” Barlowe said.
3. Ask care facilities about communication policies
In order to protect the health of their residents, many facilities are restricting access to outside visitors.
“We get lots of calls of family members who are distressed because they typically go to a residence to visit a person they are caring for on a regular basis and it’s been really hard not to be able to do that,” Kallmyer said.
She says to call and ask how best to coordinate calls with your loved one.
Barlowe suggests identifying one staff member at the facility that you have a relationship with and asking them to be your point of contact.
“Attempt to get that employee’s cell number and communicate directly via text/video calls with them to see your loved one,” she said. “Book the next appointment before you get off the phone with them so you don’t have to call to schedule each time.”
Purchasing a tablet and loading it with contact information for family members and friends, photos, social media sites, and games is a great way to keep your loved one connected.
“Make facility staff aware of how easy you have made it for them to help your loved one engage without their constant assistance, they may just need to help turn it on,” Barlowe said.
Dan Odomirok, technology expert and head of IT at the digital platform Fello, says to find creative ways to engage your loved one with technology based on their cognitive abilities.
“Video chatting is one thing, but be sure to introduce your loved one to group video chats that include other friends and family. Host a virtual dinner, commemorate someone’s birthday, graduation, or anniversary. Challenge them to an online game like Words with Friends or Mahjong. Challenge them on Instagram to create a story of the average day,” Odomirok shared.
Rather than news, he said to try to get them to watch something more positive by streaming a show simultaneously so you can watch it together.
He adds that it’s particularly important to turn to technology to connect with older adults who may be feeling lonelier than ever.
“Seniors living in assisted-care and nursing homes have loss of critical social activities such as off-site trips, game nights, communal dining, and fitness classes. Confined to their rooms or apartments, these seniors are left with little to no social contact at all,” said Odomirok.
“Technology offers several ways for the isolated to still stay connected with the outside world,” he said.
4. Explain the pandemic in relatable terms
Talk to your loved one about the pandemic in a way they can understand.
“Depending on where they are in the course of the disease, put it in a context that they can understand and don’t over explain if they are not able to grasp it,” Kallmyer said.
Stay calm and reassuring, too, she adds.
She recommends saying something like, “We have to stay inside because that’s most safe for us, but we’ll do it together. I’ll be with you and we’ll be okay.”
Meuser agreed, noting that you most likely know your loved one’s emotional and cognitive state best.
“You know if small things set that person off and cause great distress or if they are calm and generally agreeable and don’t get riled up about normal life. You have to weigh whether it’s worth sharing much detail of anything if it might make things harder,” he said.
Because memories fade in reverse with Alzheimer’s, Meuser said a person with moderate dementia may still remember their youth clearly. Drawing on early memories to explain and contextualize the present may help explain the pandemic.
“WW2 brought rationing, shortages, doing without, etc. It was a time of national unity and shared purpose. While today is not exactly like this, there are parallels,” he said.
“Social distancing is something most Americans agree with and accept readily for the common good. If you were born in the 30s, you still remember what it was like in WW2 from your childhood or parents talking about it, so appealing to those memories of that time may be one way to frame the current crisis in a way the person can understand,” Meuser said.
5. Practice self-care
Because many people are feeling anxious, Kallmyer said it’s important for caregivers to practice self-care.
“We don’t know how long this is going to go on or what’s going to happen, and one of the things we are telling family caregivers is to be aware of their own anxiety and stress level because the person with dementia can pick up on that, especially if they can’t really understand the context of what’s going on,” she said.
The Alzheimer’s Association suggests the following ways to reduce anxiety about the pandemic:
- Pay attention to your own level of stress.
- Stay present by engaging in activities in your home with the person you’re caring for, such as folding clothes or cooking.
- Stay off social media if it makes you anxious.
- Keep news to a minimum.
Meuser recommends using online capabilities, such as Zoom, Google Hangouts, or Skype, and the telephone for respite during social distancing.
“Engage other family members with your older adult if they are willing to sit by the computer and listen to a story or engage in conversation or a simple game. If your siblings live halfway across the country, say, ‘I need you to sit and talk to dad for 30 minutes,’ so you can get rest or do what you need to do,” he said.
If your loved one is in a facility, Meuser says self-care is still important during the pandemic.
“Caring for yourself now is actually caring for your loved one with dementia in the long-term because you want to be in a good place emotionally and physically when you can reinitiate your full care responsibilities,” he said.