There’s no getting around it: A dementia diagnosis can devastate an entire family. Dementia care is rife with uncertainty, and no one knows what the future holds.
Your parent may wonder what will happen to them, how they’ll maintain their relationships, or whether a good quality of life with dementia is possible. You may fear watching a beloved elder slip away. Maybe you wonder how you can give your loved one the best possible life. Should you head out on a family excursion with all the cousins and grandkids in tow? Make them their favorite food every day?
The answers to living well with dementia are as varied as the people with dementia, but one ingredient in the recipe for success is true for everyone: routine.
Even if your loved one was a chaos-loving agent of spontaneity before their diagnosis, routine is critical for their well-being now. Routines offer predictability, making life feel less uncertain to people already living with the anxiety of dementia. They also help you better manage the many demands of dementia care, so that you can tend to your loved one without neglecting your own needs.
Here’s what you need to know about developing a dementia care routine, so you can support your loved one to live a better and more fulfilling life, while preserving your own well-being and sense of purpose.
Media depictions of dementia often suggest it involves only memory loss. If you’re caring for a loved one with moderate to advanced dementia, or if you’ve done your research, you know that it’s much more.
Dementia affects virtually every aspect of brain function. That means it can lead to a number of really difficult behaviors, including:
It’s easy to frame these challenges as stressors for caregivers. Consider them from the perspective of a loved one living with dementia, though: Your loved one is acting out because they are in distress. Sudden changes in routine are a major source of distress for people with dementia.
When a person’s environment is unstable, their behavior tends to get worse. This is true for everyone. Consider how children going on vacation often trot out their worst behavior because they’re tired and overstimulated, or how couples often fight around the holidays because their coping skills are depleted.
Your loved one is already struggling mightily as their cognitive abilities decline. A change in routine is a new challenge that taxes their ability to cope. In fact, changes in routine or setting—such as a hospital stay, travel, a new caregiver, or even just the stress of bathing—are among the most common triggers of delirium. Delirium is a sudden worsening of mental state common in people living with dementia.
You are not powerless against dementia. You can’t change the disease, but you can set up your parent’s environment to reduce their distress. A routine is key.
There’s no right or wrong way to construct a dementia care routine. What’s most important is that you have one that supports your family’s lifestyle and values while ensuring your loved one knows what to expect. A well-designed dementia care routine provides many benefits.
People with dementia struggle to learn new things and adapt to new challenges. A consistent daily routine helps them know what to expect. This can decrease anxiety, stress, and difficult behaviors.
There's a lot to do in a day, especially if you’re trying to incorporate enrichment, social interaction, and exercise into your parent’s routine. A daily schedule ensures you can get it all done.
Dementia care involves more than just tending to your loved one’s needs. You’ll have to carve out space for time with your kids, chores, self-care, work responsibilities, and more. Once you develop a routine, it may feel easier to juggle it all.
Caring for a loved one with dementia can seem chaotic. You may feel like the demands are endless or worry that you can't keep up. The right routine makes you more efficient. This may help you make more time to just be together and enjoy your relationship.
A good dementia routine carves out time for the most important tasks of the day and ensures they occur in a predictable order. Ideally, there are lots of cues built into the day, too. For example, your loved one should know what always happens before and after mealtime—perhaps a favorite show or a family walk.
Let’s discuss the hallmarks of a good daily routine.
Dementia is a life-limiting condition. You and your loved one should spend as much time together as you can. Even just 15 minutes a day sitting together may make a meaningful difference in both of your lives.
Your loved one will probably need some help with activities of daily living like grooming, eating, and bathing. Incorporate this into your routine, but remember that your loved one’s needs can and will shift with time. If they fear the shower or are resistant to grooming, there’s no reason they need to bathe every day.
Self-care isn’t a luxury; it’s vital to your well-being as a caregiver. Spend some time each day doing something you enjoy, that makes you feel better, and that reinvigorates your spirit for another day of caregiving.
You may still have to work, pick up the kids at school, and get Fido to the vet. Ensure your daily schedule includes time for each, as well as the support to accomplish these tasks. You may need to use adult day care or a home health aide. Be sure to build transition time into these tasks, because transitions can be challenging for people living with dementia.
People with dementia may need help to find meaningful ways to pass the time. Schedule exercise such as a walk outside, opportunities for socialization, and simple family fun into each day.
It’s easiest to develop a daily routine at a time when you’re relaxed and have some space to yourself. Consider asking a loved one to spend time with your parent and your kids. Then put on a favorite show or movie and contemplate your routine. The process is simple; it’s the implementation that can be tricky
Make a list of all the tasks you want to complete, and how frequently you hope to complete them—daily, weekly, monthly, and so on.
Each list item might occur with a different frequency or at a different length of time. For example, you’ll go to work every day, but may grocery shop every Thursday.
Determine how long each task takes, and then make a daily time budget. This helps you see how you’re using your time and identify trouble spots where you may be overcommitted.
Leave extra time in each day for transitions, unexpected demands (like taking your kids to the doctor for a sudden ear infection), and for non-daily occasional tasks.
Consider looking for support for taxing, frustrating, or time-consuming tasks, such as bathing your loved one or training your dog. Everyone needs help. Make good use of your time by outsourcing what you can.
Life is full of interruptions and sudden changes. You can make these shifts in the routine less stressful by developing a strategy for warning your loved one of a change and slowly shifting the schedule. For example, you might play a favorite song and bring out a favorite snack.
Avoid these common pitfalls when constructing a daily routine.
You cannot fix dementia. Don’t waste time trying to force your loved one to do things they hate because you think it might improve their health or slow the course of the disease. Instead, focus on enjoying life together every day.
Respect your loved one’s autonomy. Dementia does not mean they should lose the right to make basic decisions. Give them as much control as possible, and don’t force them to do something unless there is a compelling, urgent reason to do it.
Your loved one doesn’t need to learn lessons or skills, and honoring their needs will not encourage harmful behavior. Recognize that you may need to give up on some aspects of the routine, such as a daily walk, as dementia progresses.
Don’t forget that your loved one’s brain is constantly changing. The strategy that worked well last month may prove difficult in a year. Pay attention to your loved one’s evolving needs, and adapt the routine accordingly. Look to experts for guidance and advice on how to meet your loved one where they are, cognitively speaking, such as this guide from an occupational therapist on how to bathe a person with dementia.
A MEMORY CARE community can radically improve your entire family’s life, offering relief from caregiver burnout as well as a nurturing environment that provides a level of care it’s difficult to provide on your own.
How do you know it’s time for your loved one to make the move to a memory care community? Here are some telltale signs:
People who step up to care for a loved one with dementia are doing incredibly selfless work, often without much gratitude in return. Your willingness to care for your loved one shows a profound and meaningful commitment to their well-being. It’s normal to worry that transitioning them to a memory care community means you’re giving up or abandoning them.
The opposite is true. Memory care can improve everyone’s quality of life. It may improve your relationship and reduce your stress. It may also mean your loved one gets the sort of professional, 24/7 care you could never afford to provide them at home.
You and your loved one deserve the best. There is hope and joy to be found, even in advanced dementia. The right senior living community steps in to help, offering compassionate support to your entire family. Learn what to look for as you tour memory care communities.