How does caregiving change when Alzheimer's disease progresses?

Caregiving becomes tougher as the disease progresses. Many more areas of the patient’s functioning are now affected. Patients may now experience not only short-term but long-term memory loss as well.

Just in case it is not clear what is meant by long-term memory, let me give you a couple of illustrations. The person with long-term memory problems, when asked what their job had been, might reply that they had a very good job, or that they worked very hard, rather than being able to name their specific position or occupation. When asked where they went to college, they might reply that they went to college “up North,” or that they went to a very good college.

Patients in the middle stages of Alzheimer’s disease will now require more assistance with everyday activities: they may not be able to use the TV remote, or set the thermostat properly, or use a microwave oven or perform other complex tasks. They certainly should no longer be operating a motor vehicle. Behavior problems may also become more severe, requiring increasingly more creative responses on the part of the caregiver.

Irritability and hostility may crop up with greater frequency. There may be lapses of tact, such as calling a fat person fat to their face, or making inappropriate sexual overtures to acquaintances. Even though symptoms and deficits may be much more apparent now, a certain degree of denial will continue.

Patients will tend to minimize or downplay their problems. Occasionally, however, the gravity of the problem may sink in and patients may become seriously depressed. Some of the same caregiver strategies used in the mild stages of the disease still apply, perhaps in somewhat altered form.

You still have to be so gentle! The need for structure and routine continues or has, if anything, increased. You still need to engage the patient in at least one pleasurable activity every day, although the nature of that activity may have to change.

Overall, caregivers can expect to spend many more hours each day and each week doing something for or with the patient. Increasingly, there is a need for the caregiver to share the burden of care with someone else, or to “outsource” some of the caregiving.

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