7 Stages of Dementia

Dementia is often described as having three main stages: early, mid-stage, and late-stage. While that still holds true, they are also a bit too generalized to support those with dementia - and their caregivers, to understand what their experience will be like and how to create a long-term care plan proactively.

Fortunately, Dr. Barry Reisberg, Clinical Director of the NYU Aging and Dementia Research Center and Director of the Zachary and Elizabeth M. Fisher Alzheimer's Disease Education and Resources Program at NYU, has created a more detailed 7-stage model to represent a typical dementia or Alzheimer's progression.

These 7 stages are determined via assessment using the Global Deterioration Scale (GDS), which correlates brain changes with a person's progressive decline. The 7 stages are:

1. No impairment. While physiological brain changes are underway, they won't be detectable in a physician's or neurologist's assessment.
2. Very mild cognitive decline. While small memory lapses occur, it's still virtually impossible to make a diagnosis via typical clinical exams or cognitive screenings.
3. Mild cognitive decline. At Stage 3, loved ones, friends, and colleagues notice the early signs of greater-than-normal memory lapses, such as frequently forgetting names, losing words mid-sentence, or forgetting something you just read.
4. Moderate cognitive decline. Memory lapses now affect daily functioning in ways that feel unsafe, such as being unable to troubleshoot or problem-solve or forgetting to turn off the stovetop. They may also be more moody or irritable and no longer recall important parts of their personal/family history.
5. Moderately severe cognitive decline. You may no longer remember where you are or how to get home. When asked, they may not remember their address or phone number, or may provide information from the long-ago past rather than the current information. Recognizing people, especially more recent acquaintances, may be more difficult.
6. Severe cognitive decline. By Stage 6, brain changes may lead to more significant personality shifts. Now they can no longer keep track of the day, dates, or time. Daily tasks are very challenging to maintain on their own.
7. Very severe cognitive decline. In this last stage of dementia, they require care with virtually every aspect of daily life. They may no longer recognize anyone, including their spouse/partner or closest family members.

As a Bay Area nurse-owned and operated home caregiving agency with 25+ years of experience, we find Dr. Reisberg's 7-stage model to be far more helpful when educating clients and their families about dementia progression, and what to expect. That includes assessing where their special person is now and then looking ahead to the signs or markers that indicate it's time to plan for the next level of compassionate dementia care.

What is the Global Deterioration Scale (GDS)?

Also known as the Reisberg Scale (named after its founder), the GDS breaks down the stages of dementia or Alzheimer's progression into smaller chunks. This can help to provide earlier diagnosis while also offering more accurate information about what to expect as well as the specific types of care that will support a client and family depending on the client's living situation.

Compared to the historical "three-stage" model, the GDS stages align as follows:

• Early-Stage Dementia: GDS Stages 1-4 (and most people won't even suspect dementia until their special person is in Stage 3 or 4).
• Mid-stage Dementia: GDS Stages 5 & 6. Some level of daily assistance and care is required.
• Late-Stage Dementia: GDS Stages 6 & 7. Individuals need full-time care at home or in an assisted living or memory care community.

It's worth noting that some types of dementia don't play by these same rules, and the scale may differ. If your loved one has a dementia diagnosis, their clinician will also perform a Functional Assessment Staging Test (FAST) to measure their functional status.

Stages 1 - 3: Before a Formal Diagnosis

A person can move through Stages 1 - 3 over the course of many years. However, Stage 3 is when you or others notice that cognitive decline exceeds what can be explained by normal forgetfulness or typical age-related changes. While individuals with Stage 1 (no impairment) through Stage 3 (mild impairment, noticeable to family) dementia don't typically require much assistance, memory care professionals consider this the "start planning" phase.

By knowing the warning signs of dementia, we are better able to notice the red flags as they arise. There's much to consider, research, and discuss. By doing so earlier in the diagnostic process, the person with dementia has a more active say in their care preferences, which makes it easier to execute decisions when they are no longer able to decide for themselves. This puts tremendous pressure on their spouse/family and primary caregivers.

After its onset, most of these stages progress for approximately two years or so, although physical health, stress, lack of adequate care, and other factors can lead to a faster progression.

Stage 4: Early Dementia, When Families Start to Notice

In the first 3 stages, spouses and those who interact with the person daily are likely to notice red flags. By Stage 4, they're impossible to ignore:

• An inability to manage finances.
• Struggles to follow directions or keep track of recipe steps.
• Forgetting recent events.
• Social withdrawal (sometimes due to dementia/Alzheimer's-related depression or anxiety, but most often because they are still aware of their memory loss and that causes embarrassment or shame).

At Stage 4, you've probably been given an official dementia diagnosis, and it's time to enlist part-time home care. This may look like companion care, transportation assistance, medication reminders, and appointment escorts (especially for medical appointments where another set of ears helps confirm the clinician's information is accurately understood and relayed to the family).

If a spouse or family caregiver is doing this work, we recommend starting to schedule respite care to protect them from caregiver stress and burnout. Regardless of whether or not you want to enlist professional home care aides at this time, we recommend calling a home care agency to learn what services are available so you have someone on standby when the needs become more urgent in Stages 5 - 7.

Stages 5 and 6: Moderate to Severe Decline

At this stage in dementia or Alzheimer's disease progression, activities of daily living (ADLs) are impaired. ADLs are the things we do every day to take functional care of ourselves. This includes dressing, bathing, going to the bathroom, remembering to eat meals, maintaining a clean home, and so on. This stage also tends to span the course of about two years.

By this point, your special person is probably incontinent or struggling with intermittent accidents (and the inability to clean properly when accidents happen). They are very prone to wandering and may not recognize family members, close friends, or regular caregivers. Because brain changes affect a person's balance and walking mechanics (gait), fall risks are more acute at this phase.

If you haven't implemented full-time home care, now's the time to do it. Our compassionate caregivers provide primary spouse/family caregivers with tremendous support when it comes to:

• Personal/hygiene care.
• Scheduled routines to prevent agitation.
• Creative and stimulating activities to keep loved ones as active as possible in mind/body/spirit.
• Implementing fall prevention and other safety protocols.
• Meal planning and preparation.
• And so on.

Families also appreciate our ability to facilitate their access to Medicare's GUIDE program. The life-altering brain changes during Stages 5 & 6 are significant enough to qualify for GUIDE program eligibility, depending on a few other qualifying factors.

HomeAide Homecare facilitates the application process and the resulting GUIDE Program benefits for qualifying clients. This can make a significant difference in your loved one's dementia care costs.

Stage 7: Late-Stage Dementia & Full-Time Care

Most clients with Sage 7, Late-stage dementia, can no longer walk. They are largely chair and bed-bound. They may have little to no ability to speak coherently or at all. They may seem to live in a world of their own, with fewer and fewer moments of lucidity.

This stage requires 24-hour care. If you prefer your loved one to remain at home, professional caregiving is essential. It's not that family caregivers aren't capable, but no one person can provide the level of care required. You need sleep, time off (respite care), and help with the quite literal heavy lifting and transfers necessary during this stage.

When to Call a Home Care Agency

Most people wait too long to call a home care agency, which means they have to make big decisions in times of crisis. We recommend contacting a home care agency sooner rather than later. In a perfect world, this would be soon after a diagnosis (Stage 3 to 4), as that gives agency to the individual with the diagnosis to ask questions and make decisions about their future care.

Otherwise, the next best window is when you begin to notice significant differences in their ability to make decisions or care for themselves. Three significant signals your loved one (and you) need professional support include:

• Inability to manage medications and doses on their own.
• Family caregivers are showing signs of fatigue or burnout.
• The physician recommends home support.

In addition to supporting you through the ins and outs of daily dementia care, we can also help you with financial support options like the GUIDE Program and how to take advantage of VA benefits.

Our agency provides high-quality home care to dementia clients throughout the Bay Area, including Hayward, Fremont, Castro Valley, San Leandro, Union City, Newark, Dublin, and Pleasanton.

Frequently Asked Questions (FAQs)

Do all types of dementia follow the 7-Stage model?

No. Dr. Reisberg's 7-stage model was initially designed to explain the typical progression of a person diagnosed with Alzheimer's. However, there is a direct correlation with the most common types of dementia.

That said, some forms of dementia may not follow the same linear progression, such as Lewy Body Dementia (LBD) or other rare forms of the disease. Your special person's physician or neurologist can confirm whether the Reisberg Scale is relevant to your diagnosis.

Can Someone Stay at Home Through All 7 Stages?

Yes, with the right support network, it is possible. The key is having professional caregiving support in place when the person moves into Stages 6 and 7 of the disease. Without professional care, it may be impossible to provide adequate care 24/7.

What is the Medicare GUIDE Program, and who qualifies?

The GUIDE (Guiding an Improved Dementia Experience) Program was created over the course of nearly a decade as part of an initiative by CMS. This pilot program is designed to provide no-cost support for individuals with Alzheimer's and dementia, depending on certain qualifying factors.

For example, qualifying participants must:

• Have a diagnosis of Alzheimer's disease or another form of dementia.
• Be enrolled in Original Medicare (Parts A and B).
• Not be residing in a long-term care nursing facility.
• Not be enrolled in Medicare Hospice or a PACE program.
• Be a patient of a participating GUIDE health care provider.

HomeAide Home Care is enrolled as a Medicare GUIDE participant.

How Long Does Each Stage of Dementia Last?

There is no hard and fast rule for how long it will take for someone to move through the 7 stages. Research shows that managing existing health conditions, proactive dementia care, a healthy diet, routines, and minimizing stress/anxiety can help to slow the progression.

In most cases, each stage from Stage 4 onward tends to last for about 1.5 to 2 years. But again, this varies from person to person.

DISCLAIMER: While Home Aide Home Care has more than 25+ years of experience providing expert home care to clients with dementia, we are not medical professionals. This 7-Stage Dementia Guide is designed to provide research-backed information. However, medical and clinical particulars can only be provided by a licensed physician, psychiatrist, or neurologist with dementia-specific expertise.