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
Monday, February 23, 2009
Friday, February 13, 2009
Patterns of progression in Alzheimer’s disease, Part 1
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. Over the next few weeks I am will be providing excerpts from my book, Alzheimer’s Basic Caregiving – an ABC Guide, as guidance on that topic. To order the book, click here.
Dr. Barry Reisberg of New York University has been studying Alzheimer’s disease for decades, and one of the ways he gained notoriety early on was in developing what he called a Global Deterioration Scale (GDS) which outlines the order in which people with Alzheimer’s disease tend to lose specific skills. He came up with seven stages, although stage one is basically any normal adult, and stage two is any normally aging adult, so concern only arises if people enter stage three. The later stages also have subsets: 7a, 7b, 7c and so on.
For a long time his work was somewhat controversial. Opponents felt that categorizing people with dementia – even into early, middle and late stage categories – was subjecting them to labels that limited expectations of them. The number one tenet to remember in this field is: If you’ve met one person with Alzheimer’s disease, you’ve met one person with Alzheimer’s disease. In other words, everyone with AD remains a unique individual and deserves to be treated as that individual, not as a “disease.”
The National Alzheimer’s Association now uses Reisberg’s stages to help identify common patterns of progression, but always with this caveat: [I]t is important to note that all stages are artificial benchmarks in a continuous process that can vary greatly from one person to another.
Early stage patterns
Using Dr. Barry Reisberg’s Global Deterioration Scale, early stage dementia is equivalent to his Stages 3 and 4, middle stage is equivalent to his Stages 5 and 6, and late stage is equivalent to his Stage 7, but there is tremendous variation within each of those stages. For example:
In Stage 3, a person with AD may be unable to follow a map and consequently get lost driving to a new location. By Stage 4, he may still be able to find familiar locations, but he may misjudge the distance of an approaching car or be unable to interpret the meaning of a traffic signal, so that his impaired judgment makes him an unsafe driver. (Some would say he is an unsafe driver even in Stage 3.)
In Stage 3, a person with AD may have gone from misplacing her glasses (Stage 2 = all of us!) to misplacing an object of real value, often wedding rings or other jewelry. By Stage 4, she may start to hoard or hide objects for safekeeping, particularly if she is under the delusion that "people are stealing things." Sometimes, however, it may not be a matter of "hiding" as much as simply randomly "putting away" with no memory for where. People who want to try to preserve order usually find that labeling drawers and leaving notes works pretty well in these early stages.
We all lose our train of thought from time to time, particularly if we are under stress or there is a lot going on around us, but by Stage 3 you will have begun to notice in the person word-finding difficulties, particularly for names, that go beyond the expected. By Stage 4, the give and take of normal conversations may be slowed, but if you allow the person with AD to set the pace and scope of the conversation, many can still do quite well.
Next up: More on early stage patterns of progression in AD.
Dr. Barry Reisberg of New York University has been studying Alzheimer’s disease for decades, and one of the ways he gained notoriety early on was in developing what he called a Global Deterioration Scale (GDS) which outlines the order in which people with Alzheimer’s disease tend to lose specific skills. He came up with seven stages, although stage one is basically any normal adult, and stage two is any normally aging adult, so concern only arises if people enter stage three. The later stages also have subsets: 7a, 7b, 7c and so on.
For a long time his work was somewhat controversial. Opponents felt that categorizing people with dementia – even into early, middle and late stage categories – was subjecting them to labels that limited expectations of them. The number one tenet to remember in this field is: If you’ve met one person with Alzheimer’s disease, you’ve met one person with Alzheimer’s disease. In other words, everyone with AD remains a unique individual and deserves to be treated as that individual, not as a “disease.”
The National Alzheimer’s Association now uses Reisberg’s stages to help identify common patterns of progression, but always with this caveat: [I]t is important to note that all stages are artificial benchmarks in a continuous process that can vary greatly from one person to another.
Early stage patterns
Using Dr. Barry Reisberg’s Global Deterioration Scale, early stage dementia is equivalent to his Stages 3 and 4, middle stage is equivalent to his Stages 5 and 6, and late stage is equivalent to his Stage 7, but there is tremendous variation within each of those stages. For example:
In Stage 3, a person with AD may be unable to follow a map and consequently get lost driving to a new location. By Stage 4, he may still be able to find familiar locations, but he may misjudge the distance of an approaching car or be unable to interpret the meaning of a traffic signal, so that his impaired judgment makes him an unsafe driver. (Some would say he is an unsafe driver even in Stage 3.)
In Stage 3, a person with AD may have gone from misplacing her glasses (Stage 2 = all of us!) to misplacing an object of real value, often wedding rings or other jewelry. By Stage 4, she may start to hoard or hide objects for safekeeping, particularly if she is under the delusion that "people are stealing things." Sometimes, however, it may not be a matter of "hiding" as much as simply randomly "putting away" with no memory for where. People who want to try to preserve order usually find that labeling drawers and leaving notes works pretty well in these early stages.
We all lose our train of thought from time to time, particularly if we are under stress or there is a lot going on around us, but by Stage 3 you will have begun to notice in the person word-finding difficulties, particularly for names, that go beyond the expected. By Stage 4, the give and take of normal conversations may be slowed, but if you allow the person with AD to set the pace and scope of the conversation, many can still do quite well.
Next up: More on early stage patterns of progression in AD.
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