When your parent, grandparent or partner receives an Alzheimer’s diagnosis, it’s natural to wonder what to expect over the coming months and years. What will be the first outward signs of the disease? How soon will your loved one require daily care? Will they start losing memories right away, or will that process happen more gradually?
Although Alzheimer’s affects the brains of different people in different ways, caregivers often divide the disease’s progress into three general phases: early-stage, middle-stage, and late-stage. However, many medical professionals use the more precise Global Deterioration Scale (GDS) developed by Dr. Barry Reisberg at New York University — which divides Alzheimer’s-related cognitive decline into seven stages (or “levels”).
Some of these levels can overlap — but even so, a clearer understanding of the GDS as a whole will help you adapt your care to your loved one’s changing needs, and prepare for the stages to come. So let’s take a closer look at Reisberg’s system.
Stage 1: Normal (no cognitive decline)
The first signs of Alzheimer’s can be tough to spot, because they begin deep inside the brain, and may not immediately affect memory or behavior. The disease’s early signs can show up on a PET scan, which detects changes in blood flow within the brain. However, since PET scans are far more expensive and time-consuming than an office visit, many doctors prefer to test for Alzheimer’s using verbal and visual exams — which a person in stage 1 may pass with flying colors. That means many people with Alzheimer’s only receive an accurate diagnosis after their loved ones start to notice forgetfulness and behavior changes — and by that point, the disease has already progressed into its second stage.
Stage 2: Very mild cognitive decline (age-associated memory impairment)
At this stage, it can be tricky to distinguish Alzheimer’s from normal age-related forgetfulness. You may notice that your loved one misplaces objects more than usual, occasionally draws a blank on people’s names, and sometimes forgets whether they’ve completed certain errands or chores. Still, they’ll likely perform well on a verbal memory exam, and may try to downplay any concerns about a more serious problem. But while Alzheimer’s can be a scary diagnosis to face up to, now’s the time to open a dialogue about that possibility, and start putting together a plan.
Stage 3: Mild cognitive decline (mild cognitive impairment)
People with Alzheimer’s often experience difficulties with concentration before they experience significant memory loss. In stage 3, you may notice that your loved one has trouble tuning out distractions and staying focused on conversations. They may struggle to follow the plots of movies and TV shows, and forget information they’ve just heard or read. These issues can be embarrassing for your loved one, who may try to cover up the problem with saving appearance responses (SARs) like, “Right, of course; I knew that.” This is a crucial time to reassure your loved one that nothing’s going to change your love and respect for them.
Stage 4: Moderate cognitive decline (mild dementia)
While some people use the words “Alzheimer’s” and “dementia” interchangeably, it’s important to understand the distinction between the two. In the early stages of Alzheimer’s disease, many people experience only mild cognitive impairment. Dementia, on the other hand, is a loss of mental function severe enough to interfere with a person’s daily life — and it only occurs in the later stages of Alzheimer’s. Stage 4 is defined by mild symptoms of dementia; for example, your loved one may have trouble remembering what month or season it is, and struggle with cooking, cleaning, and using the phone. Their denial about these issues will likely intensify, and may even erupt in aggressive outbursts that seem very out-of-character. Don’t take this anger personally — but recognize that your top priority is to keep your loved one safe.
Stage 5: Moderately severe cognitive decline (moderate dementia)
From this point onward, your loved one will need assistance with tasks like choosing outfits and keeping appointments. In stage 5, they’ll still be able to eat, bathe and use the restroom on their own, and they’ll remember the names of familiar people. However, they may struggle to recall their address, phone number, and other personal details; and they may become confused when asked to make a choice or answer a question. You can help by laying out clothes, preparing meals, and writing helpful information on a whiteboard — then stepping back to let your loved one follow a fairly independent daily routine.
Stage 6: Severe cognitive decline (moderately severe dementia)
By this stage, your loved one will likely need assistance with bathing, getting dressed, and using the restroom. They’ll be unable to remember most recent events — though they may enjoy telling stories from their childhood. However, they’ll sometimes become confused about the identities of familiar people (thinking their children are their siblings, for example), and may even have trouble remembering who you are. In some cases, they may experience delusions, paranoia, and hallucinations. As heartbreaking as this can be, it’s crucial to remember that it’s even more upsetting for your loved one. One of the best ways to calm their anxiety is to revisit happy memories of the past, by looking through old photos, playing familiar music, and reading from their favorite books.
Stage 7: Very severe cognitive decline (severe dementia)
When your loved one reaches stage 7, they’ll need significant help with basic actions like walking, eating, swallowing and sitting up. Most of their communication will be non-verbal, and they may not be able to recognize when they’re hungry or thirsty. Sometimes, it may be hard to tell whether they’re aware of your presence at all. As much as you may want to continue taking care of your loved one, it may become increasingly clear that full-time professional help is necessary. However, this doesn’t have to mean moving your loved one out of the home. Many families choose to hire in-home nurses and/or hospice caregivers, who specialize in keeping people with late-stage Alzheimer’s as comfortable as possible.
Although these seven stages might sound like an inevitable progression, the truth is that each case of Alzheimer’s is unique. Some people remain in the early stages for years, and continue to enjoy a rich, active lifestyle — especially with the help of a healthy diet, regular exercise, and mental stimulation. Even well into the middle stages, your loved one may remember familiar faces, and tell vivid stories of their younger days.
Throughout all seven stages, you can help your loved one by supporting them in areas where they struggle, giving them as much independence as is practical, and discussing each new challenge with fellow caregivers who can offer useful advice and emotional support. Remember, your loved one doesn’t have to go through this alone — and neither do you.