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Taking on New Roles

by Ken Hepburn

Family caregivers of persons with dementing disorders take on a new life role.  In this new role, the savvy caregiver learns to think and act like a nurse or doctor – or a detective or scientist.  He or she learns to step back and look at the scene coolly, figure it out, take charge, and decide what’s best to do in the situation.  S/he will see that, over time, the person with dementia will contribute less and less to solving everyday problems.

Having caregiving strategies is important. Developing these strategies takes three things. First, see what the disease is doing to the person – what’s being lost.  Second, have a realistic goal in mind - keeping the person content and doing things is more realistic than trying to help the person to regain what’s being lost to the disease. Third, with this goal in mind, try out ways to work around the damage the disease is creating.

Consider what Alzheimer’s disease does to thinking powers (like memory, reasoning, perception, language, judgment, etc.). Or abstraction – We don’t usually think about our ability to think abstractly – to think in terms of past and future or in terms of relationships.  Ideas like Thursday and Sunday or 8:00 pm or brother and sister are just taken for granted in “normal” life. But all thinking powers decline and become less reliable with Alzheimer’s.

So, given these declines, strategies are needed to keep the person content and to keep the caregiver from becoming frustrated. For example, caregivers soon understand that telling a person with Alzheimer’s disease on a Monday that “We’re going to dinner at your brother’s on Thursday” can lead to problems. The person may no longer be able to organize the days of the week into any meaningful order; s/he may no longer understand “brother.” Confusion and repeated questions may follow, questions that can frustrate even the most patient caregiver.

The savvy caregiver will recognize that expecting the person to be able to make sense of a future event might be unrealistic. So s/he makes an adjustment, based on an assessment about what the person will likely understand. In this case, it might be best to say nothing about the dinner until Thursday when it is time to go – and then say, “We’ve been invited to Bob’s for dinner tonight; let’s get ready so we can be on time.”

The starting place in savvy caregiving is to step back and look. Think through whether the situation went in a way that was different from expectation. Look at that expectation and see if it might be changed (and lowered) by taking the person’s losses more fully into account.  If so, see if you can think of a way you would act differently, the next time the situation arises both to control the situation and to use the person’s remaining strengths.