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Monday, February 23, 2009

Patterns of progression in Alzheimer’s disease, Part 2

One of the questions I am frequently asked by families and staff caring for people with Alzheimer’s disease is how to better understand the patterns of progression during the slow deterioration of the brain. This blog entry is a continuation of excerpts from my book, Alzheimer’s Basic Caregiving – an ABC Guide, as guidance on that topic. To order the book, click here.

Early stage patterns, continued

Math deficits appear in Stage 3. As a family caregiver, you may notice this when your spouse asks you to take over the balancing of the checkbook, pay the cashier at the grocery store or figure the tip at a restaurant. You may also notice that your loved one is unsure of the day of the week or the date. By Stage 4, he misses the date by a week or more, and especially near transition months, may not remember the year. It is common for people in Stages 3 and 4 to have trouble telling time, especially when asked at any point that is not the hour or half hour. (Digital watches may make things easier, but I don't know of research proving that.)

Nevertheless, people in Stages 3 and 4 are "oriented to time and person", that is, they are living in the present, know who they are and recognize familiar faces, even if they can’t always remember names. They may have forgotten some things in their personal past, but in Stage 3, they are usually able to recall at least one childhood teacher or friend. In Stage 4, the memories become more fragmented and fall out of chronological sequence, so that they may remember the schools they attended, but not their order. Their spouse – having heard the stories many times – is likely to recall more than they can.

In Stage 3, people can recall recent major events, but become flummoxed trying to answer detailed questions about these events. By Stage 4, they often can't recall even major events of the previous week or weekend, may not be able to recall what transpired the previous evening on their favorite televisions shows and are likely to have only vague knowledge of current events. They may read the newspaper but quickly forget what they’ve read.

Note of caution: The fact that they forget what they read or watch, does not mean they no longer enjoy the reading and watching!

People who are still working are likely to lose their jobs at this point, but if you and your spouse are retired, you are more likely to notice deficits in household chores. Your wife is no longer able to follow a recipe and begins to avoid cooking. She no longer wants to do the grocery shopping because the massive aisles of products and the decisions to be made are too confusing. Your husband doesn't remember how to mow the lawn or use his power tools, and may have an accident or destroy equipment trying. However, jobs that require repetitive actions may still be able to be done with alacrity: hanging clothes on a line (as opposed to operating the controls on a dryer), ironing, sanding wood, (sometimes) painting.

Social events may begin to be avoided because they are too confusing. Your loved one may have forgotten the rules to playing cards or bingo, or may no longer be able to add up his golf score. She may make excuses to avoid going to church or synagogue where she is expected to greet and recognize people whom she has forgotten. You will notice a withdrawal from situations perceived as intimidating, but the reasons given are likely to be a “cover up”: I’ve lost interest or I don’t feel like it today. If you press her, she may become angry.

This is where the Alzheimer’s Association tends to identify a personality change, but I disagree. It’s a coping mechanism; if I’m afraid I can’t do something or – even more frightening – afraid that I am losing my mind, it’s quite logical to do my best to pretend I don’t want to do that thing and hope you won’t notice my deficit.

This early stage is often a strain on marriages when one spouse has AD because the way a couple has done things for 50 years suddenly isn’t working anymore and change is hard, especially if the person with dementia is perceived as “just being stubborn,” or “just trying to irritate me.” A person with AD may indeed be willfully resistant to a request, but the resistance is based on the person’s underlying fear or confusion or simple fatigue (concentrating takes too much energy). The person is not deliberately trying to upset his or her spouse or other family caregiver. This situation tends to be aggravated by the fact that the well family member doesn’t want to believe something serious is wrong.

Next up: A brief summary of communication changes in early stage AD

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