The friends and family of the 4.5 million Americans living with Alzheimer's disease often essentially lose their loved one before the patient dies. That's because people with this form of dementia gradually slip away, into a fog of memory loss and confusion. Not only is the Alzheimer's experience emotionally wrenching for caregivers, it can also be frustrating.
As the ability to reason abandons them, people with Alzheimer's disease can develop annoying and sometimes aggressive behaviors. While some caregivers have found their grandfather stuffing items from drugstore shelves into his pockets and angrily refusing to put them back, others have tales of their mother calling them at work 35 times a day, or of a husband kicking and yelling in order to avoid brushing his teeth. These situations can try the patience of the calmest caregiver, but not taking such behavior personally and employing certain strategies can help.
Causes of Behavioral Changes
If a caregiver notices significant behavioral changes, experts say they should first have the person with Alzheimer's assessed by a healthcare professional to make sure that they don't have underlying pain or discomfort. "A patient with severe dementia may not be able to tell you they're having abdominal pain, so it may just manifest as agitation," says Marc L. Gordon, MD, chief of neuroscience at North Shore Long Island Jewish Health System in Great Neck, New York.
Kathleen O'Brien, senior vice president of programming and community services at the Alzheimer's Association, says that "being a good caregiver is about being a good detective." Besides agitated behavior, other clues that someone might be in pain include a grimacing facial expression or squirming. Agitated behavior may also mean that someone has a urinary tract infection, that they are having a reaction to their medication, or simply that they're hungry or thirsty.
An over-stimulating environment, a change in living arrangements or in caregivers, or frustration with not being able to handle a simple task can also provoke an episode. That's why intimate personal care issues such as bathing can turn into nightly stand-offs. "If the person feels like their self-esteem or dignity is being compromised, that can create volatile situation," O'Brien says.
Validate and Distract
While it's tempting for caregivers to correct someone with Alzheimer's disease, experts say that trying to reason with someone about why they need to bathe will get you nowhere fast. Instead, caregivers can often diffuse a difficult situation by adopting a soothing tone and redirecting the person's attention. For example, if bathing is a problem, O'Brien suggests using a lavender- or rose-scented bubble bath. Such relaxing fragrances may even help trigger memories or distract the person by engaging their senses. If the person enjoyed music before their illness, a caregiver might play jazz, classical or oldies during a bath to reduce the stress associated with bathing.
Health
Alan Dengiz, MD, director of geriatric medicine at St. Joseph Mercy Hospital in Ann Arbor, Michigan, offers another common challenging scenario and possible solution. "One of the things that happens, especially as the day progresses, is that the individual with Alzheimer's disease will say, 'I want to go home' when they're in their home. What they're thinking about oftentimes is a home from their past because that's what's still alive in their brain, whereas the current home is not as familiar to them because they've lost the more recent memories."
"What I recommend is that you go along with that rather than trying to correct them and getting them angry," Dr. Dengiz continues. "You can say, 'Well, let's go home later on, but why don't we go into the kitchen and have a nice cup of tea and just sit down and relax?' Sometimes that's enough to do it."
Meaningful Activities
Creating structure by developing a schedule that includes meaningful activities can also reduce stress and the resulting agitated behavior. For people in the early stages of the disease, local chapters of the Alzheimer's Association, for example, offer outings to the symphony, baseball games or social dances. Physical activity such as tai chi may also relax people with Alzheimer's disease, and help them sleep better.
People with more advanced dementia may benefit from art or music therapy, which can help them tap their memories and express their feelings and creativity. "Art therapy gets people to think and do things that they might not ordinarily do," Dr. Dengiz says. "That helps to stimulate the more artistic side of the brain. It also gives those individuals something to be very proud of." Dr. Dengiz adds that, in his experience, Alzheimer's impact on the dominant, logical side of the brain may allow people to view things in a less preconceived way so that they can create colorful and abstract art work similar to children's art.
For some people with Alzheimer's, distractions and activities may not be enough to control challenging behavior. These people may require medication to treat their agitation and allow them to function better, especially if they have underlying psychosis, depression or anxiety. Medication options include antidepressants, anti-anxiety drugs and anti-psychotics. When patients take such drugs, it can be very helpful not only to the patient but also to a fatigued caregiver.
To avoid burnout caregivers need to remember to give themselves a break, whether that means taking advantage of respite care so they can have a few days or weeks to themselves, or joining a support group.
Still, caregivers and people with Alzheimer's will have their good days and their bad days. "One of the important things for caregivers to understand is that frustrating or challenging behavior is a result of the disease and brain cells dying, and it's not reflective of the person," O'Brien says. "If families recognize that, it's easier to find a way to manage."
