Dementia Care 101: Understanding the Stages

The Alzheimer's Association estimates that more than 6.2 million Americans aged 65 and older have Alzheimer's dementia. Alzheimer's is a progressive neurodegenerative disease that causes brain cells and their connections to degenerate and die, resulting in cognitive decline.

What many new caregivers don't realize, is that dementia develops in stages. Instead of symptoms occurring suddenly or all at once, they develop slowly over an extended period. To better assist caregivers in managing the effects of worsening symptoms of their family members, we've developed a guide to the stages of dementia.

Before we look at the stages of dementia, it's important to understand the difference between Alzheimer's disease and dementia. While the two conditions are often mentioned together, they aren't the same thing.

Alzheimer's disease

Alzheimer's is a progressive disease that affects the brain. It causes protein deposits to form in the neural pathways, resulting in cell death. As more cells die, the brain begins to shrink, causing memory loss, depression, and confusion.

Dementia

Dementia isn't a disease. It's a medical term that refers to a group of symptoms that affect cognitive functions like thinking and decision-making. Dementia occurs for a variety of reasons, but the most common cause is Alzheimer's disease.

There are several types of dementia, but most experts breakdown their progression into seven steps:

1. No impairment. At this early stage of the disease, there are no obvious symptoms. Even so, certain medical tests could reveal the early signs of mental deterioration.

2. Very mild decline. You might notice that your loved one is more forgetful. They can still drive, get dressed, and eat on their own, but they might leave important items at home, like their wallet, purse, or cellphone.

3. Mild decline. In this stage, your loved one might repeat themselves or have difficulty remembering recent events, like a trip you took to the movies or the zoo.

4. Moderate decline. Routine activities like counting money, following directions, or running errands become increasingly difficult. Your care recipient might start asking more questions.

5. Moderate to severe decline. People in this stage begin forgetting names and faces. You might also notice that your senior needs help with basic activities like tying their shoes or brushing their teeth.

6. Severe decline. In the severe stage of dementia, people forget the names of their friends and family members. They need help with activities of daily living like eating, bathing, and going to the toilet. Many people in this stage also experience personality changes

7. Very severe decline. At this stage, people have difficulty speaking and expressing themselves. Symptoms are so severe, routine activities like standing up or walking around the house are nearly impossible.

Alzheimer's disease is different from dementia in that occurs in three stages:

1. Early-stage Alzheimer's (mild). In the early stage of Alzheimer's, many people are still independent and able to drive. Common symptoms include difficulty coming up with the right word, losing or misplacing valuable items, or trouble remembering new names.

2. Middle-stage Alzheimer's (moderate). The middle stage of Alzheimer's typically lasts for several years and presents the most noticeable symptoms. Telltale signs include loss of bladder or bowel control (incontinence), an increased tendency to wander or get lost, and behavioral changes.

3. Late-stage Alzheimer's (severe). At this stage, a person is unable to interact with their environment or perform daily activities. Most care recipients can't communicate verbally and require round-the-clock care.

You can access a more detailed description of each stage by clicking here.

Anyone diagnosed with Alzheimer's or another type of dementia experiences the different stages, but symptoms often vary.

Michael Tobin, Ph.D., a clinical psychologist and author of Riding the Edge: A Love Song to Deborah, serves as the primary caretaker for his beloved wife of 40+ years. Deborah has Alzheimer's, so Tobin understands the challenges firsthand. 

"The rate of degeneration varies from patient to patient, but no one escapes the ravages of the disease," said Tobin. "It generally takes four to 10 years to reach late-stage or severe. The brain slowly relinquishes functions beginning with short-term and long-term memory, reasoning, social interaction, emotional intelligence, and control over bodily functions until the disease impacts the brain stem which regulates breathing, swallowing, and other life functions."

To provide supportive and loving care to someone with Alzheimer's or dementia, Tobin recommends the following:

1. Understand the illness and how it impacts your loved one.

2. Know that dementia will dramatically alter your loved one's personality. They will experience memory loss, withdraw into their own world, and become less communicative. They might even display unusual behavior like aggression or passivity.

3. Join your care recipient in their world, even if it's very different from reality.

4. Build a strong support system. Regularly take breaks so you can get away and take care of yourself. If you don't, it's only a matter of time before you burn out.

5. Don't be afraid to ask for outside help. There are many government and community resources for people with Alzheimer's and dementia. The Alzheimer's Association has some excellent resources you can access here.

As Alzheimer's or dementia progresses, you may need to rely on outside support. When that occurs, "the only consideration is what's best. for your loved one," said Tobin. "It may necessitate finding a proper facility to adequately care for them in the final stage."

If you haven't already, make sure to check out the other blog posts in this series:

Bathroom Safety for Alzheimer's & Dementia

What to Know About Alzheimer's Wandering

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