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One of the few constants with dementia is change. Levels of memory loss and general awareness can fluctuate greatly. Sometimes, a person will not remember names, faces, or how to get from the bedroom to the bathroom. Other times, the dementia can be much less apparent.
Wilma, a longtime home health aide, says of her client Estelle Kearon, "The brain comes and goes. Some days, Mrs. Kearon will speak as if nothing is wrong. The next day, she doesn't know who I am and she's packing her clothes to move to the Bronx, where she grew up. I know to expect anything."
Along with the memory loss, confusion and erosion of communication brought on by Alzheimer's and other dementias, your loved one well may act frustrated, aggressive, anxious or otherwise agitated. (The Alzheimer's Association provides a comprehensive look at what behaviors to expect and suggestions on how to navigate these difficult behaviors.)
To begin, pay close attention to episodes of agitation and anxiety, and try to learn what triggers them. If it is boredom or feeling an acute loss of independence, try to keep your loved one engaged, socially active and as independent as possible, while being realistic about limitations.
Agitation and anxiety might also come when familiar routines or ingrained habits are changed. My colleague Gale Storm, who is manager of education at Partners in Care, encourages aides to dig deeper when a client becomes agitated around mealtime, for example. "Find out what and where she wants to eat," says Gale. "Maybe she doesn't like what you're serving or it's unfamiliar to her. Maybe she's not used to eating in the kitchen or in her bedroom -- she's always eaten in the dining room." Once caregivers understand the source of the anxiety, they can better address it. If she doesn't like to eat in the kitchen, take meals in the dining room, even if it involves a little extra work and time (as long as it's safe).
Nan, who cares for a woman in her 70s, finds that briefly changing course from a distressing situation can help -- like when her client needs to take a shower. "If she is getting very agitated, I'll say, 'Let's take a little break.' I'll leave her for a minute, once I'm sure she's safe. Then when I come back in, it's often easier," says Nan (whose name, as with those of other aides and clients here, we have changed to protect privacy).
Wilma says she has learned through experience to pick her battles. If a client really wants to leave the apartment, Wilma will try to accommodate a walk up and down the hall. "With the disease, someone could argue with you to the end," Wilma says. "So when I can, I let go and agree. 'Okay, let's go,' I say. 'Yes, I have the key.' We walk in the corridor a little, and that often changes everything."
"You want to keep them safe, but you don't want to stop them from living," says Gale, adding that aides' actions must always follow the prescribed plan of care. "It's a balancing act."
Engage the Mind
One of the most challenging tasks for caregivers is to engage the loved one's mind even as the disease grinds down its familiar powers -- memory, reason, focus, conversation, communication skills. Still, engaging the mind can help slow the decline and forestall debilitating behaviors such as frustration, anxiety and depression.
"Oh, how I hate to see her sitting there staring into space," says Wilma, which she readily adds that her client would do if Wilma did not make it a point to engage her. The week before Mother's Day, Wilma got out a notebook and pen, and suggested Mrs. Kearon write to her son who lives overseas. "What should I say?" asked Mrs. Kearon, pen gamely in hand.
"Tell him you love him," answered Wilma. "Tell him you miss him. Tell him Mother's Day is coming up, in case he forgot."
Each day, Wilma engages Mrs. Kearon in activities to keep her mind working. Wilma reads her the paper, asks her to count their shopping money, or takes her through family photographs at hand.
Other simple activities to do with people with dementia include:
- Looking at photographs and asking questions to stimulate memory (although be prepared to change tacks if the memories cannot be summoned)
- Listening to music, especially of your loved one's or client's favorite era
- Exercising, such as dancing to the music or walking along an apartment corridor or front sidewalk.
- Engaging in simple craft projects
- Arranging flowers
I recently heard a wonderful story on NPR about using photographs -- not family photographs but ones from books or magazines -- to engage people with dementia in of-the-moment storytelling. This storytelling opens up a portal of conversation that is not dependent on memory or on getting the details right or wrong.
Since a client or loved one with dementia often grows disoriented in time, we also recommend strategies to make time more "visible," such as:
- Writing out the day and date in big, bold letters on an erasable board or piece of paper
- Keeping a big clock visible
- Reading a daily newspaper, as Wilma does.
Reach Out
While providing care to someone with dementia can be an enormously lonely, isolating and frustrating experience, you are most certainly not alone. Find a local support group, inquire about caregiver respite services, or learn more about professional home care.
There are a number of Alzheimer's organizations that disseminate the latest information -- including symptoms, facts and figures, and research -- educate and support caregivers, and connect you with local resources, both online and in person. Below are a few good places to start:
- The Alzheimer's Association, 1-800-272-3900
- Alzheimer's Disease Education and Referral Center National Institute on Aging, 1-800-438-4380
- Alzheimer's Foundation of America, 1-866-232-8484
- National Family Caregivers Association, 1-800-896-3650
- American Dietetic Association, 1-800-877-1600
- National Institute of Neurological Disorders and Stroke, 1-800-352-9424
In addition, our affiliate organization, the Visiting Nurse Service of New York, helps you navigate the many steps, including legal and financial, involved in caring for an aging parent.
For more on safety and monitoring the activities of daily living when caring for someone with dementia, read the first part of this two-part series.
For more by Marki Flannery, click here.
For more on caregiving, click here.