If you have read any of my previous blogs, you know I have mentioned many times that caregiving can be a hazardous profession, due to the complications and challenges that come along with caring for a person with dementia, such as memory loss, inability to function, agitation and/or aggression. Unfortunately, the task has become even more difficult in these days when we are facing the challenges posed by COVID-19. What I would like to do in this blog, is to try and help caregivers who are in isolation with a person with dementia, with practical advice for managing on a daily basis.
The task of caregiving has been called the “36 Hour Day” even at the best of times, when help from family, friends, professional services and day programs can be accessed. During this pandemic — when stuck at home, in isolation, for days, weeks or possibly longer, it is simply unimaginable how stressful this must be!
I have no play-book, best-practice manual, or evidence-based guidelines to help you with this task, but I have had the honour of working with hundreds of smart, creative and empathic caregivers over the years who have shared with me, some of their experience and advice in similar circumstances, that might be of help.
- Keep to a daily schedule
For the person with dementia, keeping to a fairly strict daily schedule with regular times for waking, grooming, dressing, activities, meals, and bedtime, is essential. While in isolation, this schedule will obviously differ from your regular life, but adapting it to the new circumstances and sticking with the same new daily routine helps both you and the person with dementia. A regular schedule helps physically with the person’s “biological clock” and provides an environment that is predictable and feels safe. For the caregiver, the daily schedule provides small goals and objectives for every hour of the day that can be planned and mastered.
- Avoid lengthy napping
While allowing the person with dementia to have long naps might seem like a great way to “keep them busy” and provide you with a break during the day, this could disrupt their nighttime sleep patterns, potentially leading to insomnia. Every person with dementia is an individual with their own sleep-wake cycle, and some may be able to nap at length during the day without disturbing their nighttime sleep, but most people should try to avoid napping at all, or have no more than a 15-20 minute nap.
- Enjoy your backyard or balcony
Part of the daily schedule should include spending some time getting outside. Getting dressed and going out to the backyard or even spending time on the balcony of your apartment is a great way to get real daylight and help with the “biological clock.” It also reduces the sense of being locked-in and isolated. If you can add some exercise while outside that is a bonus.
Exercise for the caregiver and the person with dementia is essential for physical health, acts as an antidepressant, and has been shown in some studies to improve cognition, and delay cognitive decline. Exercise can be incorporated in your daily time outdoors (even walking around your balcony!) and added to specific scheduled activities during the day. There are excellent online videos for seniors including chair exercise routines, that make exercise accessible to most people. Try to make the sessions fun, and remember — everything counts as long as you are moving and expending energy!
- Meals and food preparation
While paying attention to nutrition is always important, this becomes even more important in times of potential virus infection, in order to optimize the immune system. But preparing meals can also be another activity to be included as part of daily schedule. Try to ensure the person with dementia is given some tasks to help with food preparation. Consider “comfort foods” and culture-specific foods that may provoke memories for the person with dementia. Smells and aromas can be very powerful memory aids! Try preparing meals in different ways — a BBQ can be prepared and eaten outside on a balcony or in the backyard, making it more enjoyable. I don’t recommend alcoholic beverages for anyone with dementia but adding a “happy hour” with non-alcoholic cocktails and/or non-alcoholic beer is another way to add some fun and novelty to the daily schedule.
- Activities for isolation
Filling those periods on the daily schedule with activities will be the biggest challenge. Fortunately, videos and music are more accessible than ever. Consider really old movies that were favourites for the person with dementia, and especially musicals. Music has consistently been shown to improve behaviour in people with dementia including depression, anxiety and agitation.In terms of music, think about what the person with dementia really liked in the past, and try to pick music that you can dance to. Not only can this be fun, but it is good exercise, and there is even evidence that activity like ball-room dancing can slow the progression of dementia! Pull out some of the old board games you might still have and choose some that may be easier for the person with dementia.Finally, think of ways to remotely connect to your support network. Try to schedule daily video chats with friends and family, even if it is for short periods. As you know, most people with dementia will unfortunately have a short attention span and will benefit from briefer more frequent contacts. It is also equally important for you as the caregiver to remain connected to your support network, so be sure to call them back later, and let them know how you are coping.
I know that we are all scared and worried about our health and the health of our loved ones. I also recognize that for caregivers in particular, the task ahead is a difficult one, but for your health and the health of the person with dementia, it’s important to remain positive and hopeful in order to continue supporting yourself and the person you are caring for. As we wait for the pandemic to end, keep checking out reliable sources of information and support like the Alzheimer’s Society of Canada, Alzheimer’s Association, Alzheimer’s Disease International, and Sunnybrook.ca/COVID19.
This blog post was reviewed and updated in January 2021