Regardless of age or cognitive ability, establishing and sticking to a daily routine can go a long way towards keeping people on track and giving them a sense of purpose.
“We all laugh about wanting to retire because we won’t have to get up in the morning and follow a routine, but the majority of retirees end up wanting to establish some type of a schedule, even if it’s not quite so stringent as working folks," points out Liz Barlowe, an aging life care manager in Florida.
While creating and sticking to a schedule is child’s play for many older adults, that’s not true for seniors who are frail or ill. And creating a routine, let alone sticking to one, is nearly impossible for people who live with moderate or advanced dementia, who often lose the ability to organize themselves.
Although reminders may be enough for those in the early stages of dementia, Dr. Marc Agronin, a geriatric psychiatrist who recently published his sixth book, "The End of Old Age: Living a Longer, More Purposeful Life," says people with moderate and late-stage dementia need a simple and straightforward routine that includes the basics -- like when to get up, when to rest and when to go outside.
People with dementia often struggle without enough structure in their lives--in some cases, they’re so disoriented that they forget when to eat or get ready for bed. “They don’t really know what to do and when to do it, and when no one is telling them, some people…just curl up and stay in bed,” Agronin says.
Think about how disconcerting it would be to land in a strange place, where you don’t know what activity to do or where to go. “That’s what some people go through, they’re in a very confused and muddled [state] … and it’s nerve-wracking,” he says.
In contrast, Agronin asks caregivers to imagine how they’d feel if they arrived in a foreign country where they were greeted with a tour guide who tells them what sites to visit and how to get there.
“It’s reassuring, it’s easier--you don’t have to focus on who, what and where and when,” he says. “You can focus on enjoying [yourself] and just relaxing -- to some extent that’s the whole point of putting in structures,” says Agronin,
1. Reset your expectations
Planning activities for a person with dementia works best when you continually explore, experiment and adjust, according to the Alzheimer’s Association. Barlowe concurs. “Some days pushing them is important, some days letting them have a nap instead of going off to the next entertainment that’s being offered is better," she says.
For his part, Agronin encourages dementia caregivers to reset their expectations. As the illness progresses, patients often develop apathy as the damage to their brain affects their motivation. “When families try to push them to do things or act in ways that they’re not capable of, that can create friction,” he says. “Caregivers can be in a state of denial as well. They want the person to do and be exactly as they were before, and they’re just not capable of it. A lot of friction and resistance can come out of those excessive expectations.”
2. Choose familiar activities
In addition to being flexible and knowing when to back off, make sure you have a good sense of your loved one’s physical and mental abilities so you can include engaging activities that are not frustratingly difficult. It’s also a good idea to include pastimes that are familiar to your loved one.
If they have always enjoyed physical activity, consider activities like walking, swimming and yoga; and if they’ve always gravitated towards intellectual activities, they may find puzzles stimulating. Also, make sure you have a handle on the ebb and flow of your loved one’s energy levels so you can schedule exercise, shopping or medical appointments when their energy is at its peak.
Don’t forget to allow ample time for meals, bathing and dressing and avoid overwhelming your loved one by filling every spare minute with activities. Another tip: follow the same steps within certain activities. For example, your loved one may find it soothing to follow a bedtime routine of washing up, then changing into pajamas, then listening to music before going to sleep, says Jerome Bagaporo, chief nursing officer at United Hebrew of New Rochelle’s skilled nursing facility, where he oversees a secure dementia unit.
A routine can work even if your loved one values creativity and spontaneity, adds Barlowe. For example, you could set up art materials in their room so they can spontaneously work on art during the day, but make it clear that they need to take a break for lunch. “You don’t want to necessarily make a big deal out of it, because it’s not their frame of reference," she says. "But if you put some parameters around their day I think you will see a difference, even in people who are spontaneous types.”
3. Keep agitation and anxiety in check
A routine can also curb the agitation that some people with dementia experience. If your loved one has sundowning syndrome, schedule calming activities like a nap or listening to music in the latter part of the day, advises Barlowe.
Barlowe, who previously ran an assisted living community designed for people with dementia, recalls one resident who would become severely agitated between 4 and 6 p.m. After staff members noticed that the woman calmed down considerably after spending time with her beloved cat, they made sure to schedule in cat grooming and feeding for her in the late afternoon. “During those hours, everything was hyper-focused on the cat. It totally changed and dissipated the sundowning syndrome,” says Barlowe.
Along with creating a routine, Agronin recommends that dementia caregivers streamline their loved one’s environment, since clutter can be a big problem for people with dementia. “They don’t need to be overwhelmed with a closet full of clothes to choose from,” he says.
He also notes that people with cognitive impairment function better when their caregiving team is consistent. “Some people think having a routine is just a matter of keeping time, but it also involves the appropriate coordination of people, places and schedules,” says Agronin.