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Keeping the environment predictable, buying helpful devices, and ruling out other memory-impairing conditions go only so far in reducing the strain of dealing with a person with this disease. The real effort lies in coping with a loved one turned alien, where the tools used in normal human encounters no longer apply.

Dave (who usually cared for his wife with dementia) had gone out of town the previous week and left his wife with their daughter. After [they went] to a restaurant . . . Dave’s wife refused to get in the car to go back home. . . . She began accusing her daughter of trying to hurt her and insisted on seeing Dave. They argued for some time but nothing calmed her down. Instead, she got more and more agitated until she collapsed and the paramedics were called. . . . When Dave arrived home, she continued making accusations against their daughter. Dave tried to reason with her but reported to the group that he had no success. In fact, she denied having done anything wrong and insisted that it was her daughter’s fault that she had gotten upset.

This incident, reported at a family support group session, illustrates how emotionally difficult caring for someone with dementia can be. It can take every ounce of forbearance to cope full time with a person literally “out of his mind,” as many caregivers do.

For instance, in a 1986 study of caregivers, Duke University researchers found that their subjects averaged three times as many stress symptoms as a comparison group; they were much more apt to use tranquilizers; they had low morale. Hobbies, visits with their families and friends, and especially just relaxing by themselves were all casualties to the burden of dealing with this devastating disease. The one glimmer was that physically these caregivers were holding up, no more likely to visit their doctors than the control group – people dealing with the normal stresses of daily life.

It comes as no shock that care-giving causes emotional distress. The surprise is that the severity of the patient’s illness itself is not the primary determinant of that strain. Rather than the victim’s objective symptoms, three more external aspects of the situation seem to make caring for a person with dementia feel impossibly burdensome: not having the support of family and friends; having had an unloving or ambivalent relationship with the person before the disease struck; and feeling out of control, unable to handle problems that do arise.

Having a negative legacy from the past is hard to change. But if you are caring for a victim of Alzheimer’s disease you can take action to draw on the other two resources that researchers find so critical to not feeling overwhelmed: support from family and friends and the right problem-solving tools.

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Eliminate illnesses compounding the problem. Although it is incurable in itself, dementia often coexists with conditions that can be treated – depression, other illnesses and memory impairment from medications. These problems exacerbate the mental confusion. When they are ferreted out and eliminated, thinking often improves.

Judiciously consider using tranquilizers. Although tranquilizers have the potential to make mental cloudiness worse, they can help with the emotional and behavioral symptoms of the disease. If a person with Alzheimer’s disease wakes up at night to wander and scream, is physically abusive, is flooded with anxiety, or hears voices that are not there, antipsychotic medications, the same type of tranquilizer used to treat severe emotional disorders such as schizophrenia, may be worth a try. If your doctor does prescribe this type of medication, monitor your relative’s symptoms carefully to see whether the net effect is genuinely better or worse.

Provide a simple, predictable environment. The environment also can have a marked effect on how well the person feels and functions. For instance, a man with Alzheimer’s disease in its early stages may find work very threatening but have no trouble handling life comfortably if he retires and his mental requirements are less. Trips or moves are likely to be hard, because being in new territory puts extra stress on a mind struggling to make sense of a life already flowing by too fast. True, the pace is more relaxed in Arizona, but Chicago is “where your wife has lived all her life. The neighborhood is too noisy, the house is too big; but the contours of each are imprinted on her brain. People with dementia function best on the most familiar ground.

My father used just the wrong approach with my mother during the years her memory was failing. He took her to every new restaurant, forced her to travel. He was trying to make her last years happy by offering her the best. He also believed that piling on more experiences was better – that it would strengthen the brain cells that remained. I wanted him to keep her life simple, not continually confront her with the terror of new things. It hurt me to see her humiliated, when she was forced to do things that were beyond her capacities, where all she could do was fail.

When a person’s memory is dulled by an unstimulating life, new experiences may be the antidote. But dementia is totally different from the type of forgetting caused by looking at four walls. The advice to search out fulfillment or do memory exercises falls flat with dementia. No memory workout can retard the brain-cell loss of Alzheimer’s disease. In fact, because it may flood the person with anxiety, forcing memory-stimulating exercises on an Alzheimer’s victim is likely to boomerang.

Use external aids. On the other hand, using external memory props can be very effective, particularly when the illness is in its earlier stages. One standard prop is notes. Fasten a note to the stove reminding your mother to turn it off; pin one to the front door reminding your husband to take his coat. People with dementia tend to be more confused in the evening, in part because in the dark less information about the world comes in (and they also may be less alert). Simple strategies such as leaving a bathroom light on can reduce the terror of waking up with a full bladder and forgetting where the toilet is. In helping more information to penetrate, be creative! Use your ingenuity to turn up the volume of those things that must be remembered.

In the middle stages of the illness other devices may be very helpful – those that make living safer and assist the person with jobs such as bathing and dressing. If you are afraid your father will wander out of the house and get lost, install double locks, the kind that must be unlocked from the inside; sew identification labels in his clothing; there is even a homing device on the market that signals a caregiver when the patient wanders off.

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GENERAL HEALTH