Dementia Caregiving and COVID-19

Before COVID-19, people living with dementia, and their caregivers, often reported feeling isolated and alone. The physical distancing, lockdown and routine changes caused by the coronavirus have only amplified this isolation for many families. Caregivers who previously relied on day programs and support from friends and family, are now navigating full-time responsibilities. If you are struggling to keep a loved one with dementia safe, engaged and comfortable—while maintaining your own health and wellness—here are some tips that may help:

Find structure. Changes in routine can be confusing and worrisome for someone living with dementia. Although isolation has changed your daily life, a new routine will provide a safer and more predictable environment. Do your best to stick to a schedule that includes wake and sleep times, meals, grooming, physical activity and interests—but allows for flexibility if things don’t go as planned. Organizations like The Alzheimer Society have moved many of their recreational programs online to help you frame your day.

Less is more. Depending on the stage of your loved one’s disease, talk about the pandemic in a way they can understand. It may be a good idea to have a general discussion about what’s going on and what we are all doing to stay safe. If you are getting repetitive questions about why you can’t see family or go to programs, try to remain calm and reassuring and keep your responses short. “We need to stay inside to be safe, we’re all in this together and it will be okay.” Avoid watching the news when your loved one is in the room to prevent unnecessary anxiety. Memory loss can make the details of the virus new and scary every time they hear it.

Make adjustments. Physical distancing is a difficult concept and can be especially challenging for someone with dementia to understand. You may notice an increase in agitation around this, so create physical barriers for any in-person visits and choose quiet times or low-traffic routes for your walks. Your loved one may also need extra reminders to practice good hand hygiene. Try posting signs in the bathrooms and regularly demonstrate the right technique. If you receive home care support services, talk to your providers about what they are doing to protect your loved one. Home care services can help the person you are caring for stay safe and out of  hospital.

Have a plan. While the disease itself does not increase the risk of COVID-19, many people living with dementia are older adults and have underlying medical conditions that can weaken their immune system. Staying home is the best way to keep you and your loved one safe. Contact your local pharmacy to see if they can deliver prescriptions, coordinate curbside grocery pickups and look into organizations that offer volunteer deliveries. Take time to clearly document all medications, health care providers and care details, so just in case you do get sick from COVID-19, a friend or family member can step in.

Stay busy. We are all facing boredom and loneliness in quarantine as we work together to contain COVID-19. However, for dementia patients, boredom increases “responsive” or challenging behaviours as our loved ones struggle to communicate their thoughts and needs. Finding engaging activities can help your loved one to feel more confident, productive and useful during this difficult time. Keep things simple by preparing meals together, looking at photo albums, taking on gardening projects or organizing video chats with friends. Go online for reminiscent activities like The Alzheimer’s Society Music Project and RetroSparX that use music, history and culture to unlock personal connections, or visit Experiencing Canada Virtually for an easy escape. Other online ideas include: chair yoga, virtual paint nights, puzzles, origami planes and adult colouring pages. Activities can be adapted depending on the stage of your loved one’s dementia.

Take care of yourself. Caregiving is a difficult task on a normal day and the heightened stress, anxiety and uncertainty of the coronavirus can start to take its toll. Regularly check-in with yourself and acknowledge what you need—or you won’t be in a position to help others. Even in short intervals, find ways to safely engage your loved one so you can do something restorative. Make a phone call, grab a snack, meditate, read a book or pick up an activity you enjoy. Online caregiving support groups and teletherapy with a counsellor can also offer you strength, connection and coping strategies.

Although this is a particularly challenging time for dementia caregivers, the community is pulling together in wonderful ways. Focus on the positive, know that this won’t last forever and make your health a priority.

Visit VHA Home HealthCare’s Dementia Care resource if you need in-home support or for more ways to keep your loved one engaged, healthy and active. Here’s how we are protecting our clients and families during this crisis.