Estelle Kearon, who is in her 90s and suffers from Alzheimer's disease, was insisting that she had to hurry out of her New York City apartment to catch a No. 2 subway train -- something she had done decades ago. Unable to dissuade her from leaving or to coax her back into today's reality, Mrs. Kearon's longtime home health aide went along with her wishes.
"I finally said, 'Okay, let's go,'" said the aide, Wilma, who has been with her client for four years. "We walked down the hallway to the elevator and got on. When the elevator doors closed, I pushed the button to her floor. The doors opened again, and we got out. 'Here we are,' I said, and we walked happily back to the apartment. She had already forgotten about the 2 train."
Wilma, who has cared for a number of clients with dementia over her 21 years as a home health aide and has received many hours of specialty training focused on the disease, said the foremost skill she employs day in and day out is patience. It helps, too, she says, to expect the unexpected in the course of everyday care for those with dementia.
Activities of Daily Living: Barometers of Health
When a client or a loved one has dementia, all activities of daily living (ADL) -- such as bathing, dressing, eating and sleeping -- need to be understood through the lens of the progressive brain disorder. This is where skilled home health aides play a vital role. Often hired to provide assistance with the activities of daily living, home health aides know that these seemingly-mundane activities are really the front lines of health and well-being. Forgetting to drink enough water can lead to dehydration; difficulty eating can lead to weight loss, which can exacerbate dementia.
At my agency, Partners in Care, we train aides to look for signs of change in the activities of daily living. Guided by a formal plan of care, good home health aides understand what is usual for the person they care for, so they can make note of any changes. One of the agency's goals for caring for people with dementia is to be as consistent as possible when assigning home health aides, both so the aide is familiar with the client's habits and so the client can take comfort being with a familiar aide.
"Noting even slight changes with a client takes skill," says my colleague Mark Andaya, director of education and quality assurance at Partners in Care. The aide notifies a nurse, because, as Mark explains, "aides know that the change may or may not be because of the dementia. Maybe it's a urinary infection, for example, that's causing them to behave differently."
Caring for an Epidemic
According to the March 2012 report from the Alzheimer's Association, an estimated 5.4 million Americans suffer from the disease -- which includes one in eight Americans age 65 or older and nearly half of people age 85 and older. As America ages, the annual incidence of dementia is projected to double by 2050. More than 15 million Americans, according to the report, provide unpaid care for a person with Alzheimer's and other dementias.
The vast majority of care provided at home is delivered by family caregivers, with less than 10 percent of adults receiving all their care from paid workers. Since people with dementia, especially when it is severe, can require round-the-clock care, a network of caregivers is sometimes required and can include a combination of professional and family caregivers. For more on determining when a loved one might need more help than you alone can provide, see the Alzheimer's Associations primer of when and how to ask for help.
Specialized care is central to today's home health care landscape, and I have been following it over several posts (including caring for someone with multiple sclerosis and with diabetes). Home health care, after all, is not a one-size-fits-all profession. When you or a loved one choose certified home care from a licensed agency, you have the advantage of matching a caregiver's experience, expertise or training to your loved one's specific care needs, including dementia. In addition, certified home health aides are often part of a larger team, responsible for day-to-day implementation of doctor's orders and a nurse's plan of care.
Training aides to care for clients with dementia begins with safety, emphasizes Gale Storm, who is manager of education where I work. "That's the No. 1 concern," she says, enumerating the many aspects of daily life that need monitoring, such as use of the stove, care around hot water, and preventing dangerous wandering. Some tips on safely caring for people with memory loss include:
Some families and caregivers add alarms or extra locks on doors and windows or remove doorknobs on interior doors to prevent wandering. By hanging artwork or a mirror on an exterior door to the outside, you can help disguise it as a wall.
Those with dementia should never use the stove, as they may well injure themselves on a hot burner or present a fire hazard by forgetting to turn off burner or oven. Remove knobs from the stove and unplug small appliances when not in use.
Take care at mealtime. Make sure the person is sitting upright and not overly agitated, and that the food is not too hot or difficult to swallow. If eating becomes difficult, caregivers should contact a medical professional (home health aides are trained to call the supervising home care nurse), because poor nutrition and weight loss can exacerbate dementia.
Medication should be out of reach, and monitor bottles and pillboxes frequently to make sure medication is being taken exactly as prescribed.
Install grab bars or a shower chair in the shower or tub and monitor carefully to avoid falls and burns from hot water.
Remove clutter from pathways to avoid falls and to ensure that your loved one has a clear exit in case of emergency. Also, check for good, safe shoes and make sure a walker or cane, if needed, is always used, even from one room to the next.
Please check back for the second of this two-part series on caring for someone with dementia, including expecting the unexpected, keeping the mind engaged and connecting with community resources.
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