The Stages of Dementia Explained for New Jersey Families

A female doctor holding the hand of a senior man while discussing his medical condition over a cup of coffee and a bottle of medicine on the table.

There are many different types of dementia, and some progress more rapidly than others. Additionally, individual patients may have different experiences even with the same kind of dementia.

However, dementia typically has three broad stages: Early, middle, and late. In this article, we’ll discuss these stages and guide you on how to prepare for them.

Regardless of what stage of dementia you or a loved one is in, you could have legal concerns for the future. Estate planning, paying for care, healthcare directives, and power-of-attorney forms are just a few of the legal topics you need to consider.

If you need help with Alzheimer’s and dementia planning, the Van Dyck Law Group is always available for a consultation to explain your options.

Stages of Dementia

Dementia usually progresses through three broad stages. These are based on the stages of Alzheimer’s disease, which is the most common form of dementia.

Keep in mind that people with other forms of this illness may have additional symptoms in some stages and a different course of progression.

Early Stage

In the early stages of Alzheimer’s, symptoms are often mild, and many people remain mostly self-sufficient and require only minimal support with everyday tasks. It’s helpful to establish routines, create reminder notes or prompts, and incorporate technology into daily life.

Alzheimer’s progression is typically gradual, and the early stage can last for a few years. It includes the preclinical sub-stage, in which patients often have no noticeable symptoms, and a sub-stage called Mild Cognitive Impairment (MCI).

MCI includes memory or language symptoms that are more significant than typical signs of aging, but are not considered full dementia.

Common symptoms of early-stage Alzheimer’s include:

Struggling to recall the correct word or name in conversation.
Difficulty remembering the names of newly introduced individuals.
Challenges completing familiar tasks in work or social situations.
Forgetting information shortly after reading it.
Misplacing essential items more frequently.
Finding it more challenging to plan ahead or stay organized.

The early stage, when symptoms are minimal, is the best time to begin making decisions for the future. If you or a family member has recently been diagnosed with early-stage symptoms, you should sit down and discuss the following future concerns:

Treatment. If you or a relative has Alzheimer’s,your doctor will likely prescribe medications to help slow the progression of the disease and improve symptoms. Certain cognitive therapies can also help improve functioning. With non-Alzheimer’s forms of the disease, treatments vary and frequently focus on relieving symptoms if slowing progression isn’t possible.
Continued care. As the disease progresses, you or your loved one will likely reach a point when you need assistance. (We’ll discuss this further in the next section.) It’s a good idea to consider options like assisted living, in-home care, or nursing homes.
Finances. With rising costs for long-term care, it’s essential to obtain multiple quotes for all the types of care you might need and review your financial situation. If you worry that you won’t be able to afford all the care you require, make a note to learn more about Medicaid, Medicare, Social Security, and other options to help with costs.
Power of attorney. Unfortunately, most people with dementia eventually reach a point where they are unable to continue making their own decisions. You can plan for this situation by assigning power of attorney to a trusted family member or friend. Several options exist for power of attorney documents, and your lawyer can help you understand the differences.
Future medical decisions. While you can assign a power of attorney to make healthcare decisions for you in the future, it’s also possible to state your wishes about certain kinds of treatment you do or don’t want using a healthcare directive.

Middle Stage

In this stage, memory loss progression and other symptoms often become more challenging as the MCI transitions into mild-to-moderate dementia. Worsening issues with disorientation, speech, and recognizing friends and family are common.

Patients may need frequent reminders for essential tasks, such as remembering to take medication or eat meals at the correct times.

During moderate-stage Alzheimer’s, you or your loved one may have the following symptoms:

Being withdrawn or moody, particularly in social situations
Having a hard time remembering events or information about themselves, like their phone number or the school they attended
Confusion, such as not knowing where they are or the day of the week
Choosing inappropriate clothing for the season, such as shorts and a tank top in winter
Sleep issues, including sleeping during the day but being awake most of the night
Getting lost more easily and sometimes wandering
Personality or behavioral changes, which can include anxiety, paranoia, delusions, or repetitive behaviors

Your family member’s doctor might prescribe medication to help alleviate some of these symptoms. Even with treatment, this stage is often when the patient transitions to more extensive care, such as hiring a home health aide or moving to an assisted living facility.

If your family member lives at home and relies on you for care, options such as respite care or a part-time health aide may be beneficial.

People in the middle stage of this illness often struggle with the cost of long-term care. It’s helpful to understand that the middle stage might last for years, and even assisted living—which is typically less costly than a nursing home—can quickly exhaust retirement savings.

For many people, a combination of assistance programs, such as Medicaid, Medicare, Supplemental Security Income (SSI), and Social Security Disability Insurance (SSDI), can help cover the cost of long-term care. These programs have fairly low income and asset thresholds, and some patients find they don’t qualify or need to “spend down” assets.

If you have concerns about qualifying for Medicaid or how to transfer assets while remaining eligible, a New Jersey estate planning attorney can assist you.

Late Stage

By this point, symptoms are usually severe and have a substantial impact on the patient’s life. Most people with late-stage dementia will need some form of assistance.

Many will require a nursing home or round-the-clock home care.

Symptoms in this stage include:

Needing help with daily activities and self-care 24/7
Forgetting recent experiences and being unaware of surroundings
Difficulties with physical tasks like speaking, walking, and swallowing
Struggling to communicate
Vulnerability to infections, especially pneumonia

In the late stage of this illness, patients who are in assisted living or receiving in-home care might need to transition to a nursing home. At this point, care costs could become even more expensive.

If your loved one didn’t qualify for programs like Medicaid or Medicare before, they may be eligible now. Income and assets often dwindle during the middle stage as the patient pays for care. When this occurs, your attorney can review the situation to determine what programs you or your family member could receive.

How Can Medicaid or Medicare Help With the Costs of Late-Stage Dementia Care?

In New Jersey, the Medicaid program is known as NJ FamilyCare. To qualify, applicants must meet specific income thresholds, which are periodically updated.

Adults aged 19 to 64 may be eligible if their income does not exceed a certain percentage of the Federal Poverty Level (FPL), which is subject to change annually. For individuals over 65 or those with certain disabilities, a separate program called NJ FamilyCare Aged, Blind, and Disabled is available.

Many people with advanced memory loss will qualify for one of these programs.

In late-stage illness, the patient usually requires round-the-clock, ongoing care, such as placement in a nursing facility or hospice. Qualifying for Medicaid in these cases involves stricter criteria. In addition to income restrictions, applicants must use most of their non-exempt assets to pay for care before Medicaid will begin to cover costs.

This financial process is commonly referred to as “spending down” assets.

If you or a loved one exhausted most assets during the middle stage of the illness, spending down might not be necessary. However, if you still have financial assets, your attorney may be able to help you place them in a special kind of trust to protect them.

People who experience early-onset forms of the disease, before they are ready to retire, may also qualify for Social Security Disability Insurance, or SSDI. You will need to have earned a certain number of work credits in previous years, while also meeting other requirements.

If you haven’t reached the requisite number of work credits, you might be eligible for Supplemental Security Income, or SSI, a different assistance program unrelated to your work history. Your lawyer can help you determine which programs are best suited to your situation.

If approved for Medicaid, you or your family member will need to choose a Medicaid-approved facility or one that accepts payments from Medicaid.

What Is the Dementia Timeline for Other Forms of the Disease?

Non-Alzheimer’s forms of dementia vary widely in their progression, but like Alzheimer’s, they usually begin with mild symptoms, before entering a moderate stage, and eventually, a late-stage disease.

Here are some other forms of the disease and how they compare to the Alzheimer’s stages timeline:

Creutzfeldt-Jakob Disease, or CJD, is a relatively rare neurodegenerative illness that’s known for progressing very swiftly. You or your loved one could have much less time to plan for the future after receiving a CJD diagnosis.
Down Syndrome and other learning disabilities increase the risk of dementia, and people with this condition often experience a faster progression of symptoms.
Vascular dementia, usually caused by one or more strokes or blood vessel disease, frequently moves faster than Alzheimer’s, with new symptoms appearing in a step-like manner. When caused by a single stroke, significant symptoms can occur almost immediately, skipping over the early stage. In the case of multiple smaller strokes or blood vessel disease, progression may be somewhat slower, but still faster than Alzheimer’s.
Normal Pressure Hydrocephalus, or NPH, occurs when cerebrospinal fluid builds up in the brain. It can sometimes be misdiagnosed as Alzheimer’s or other neurodegenerative diseases, but it can progress much more slowly. In some cases, shunt surgery to remove excess fluid can further slow or stop the progression of the illness.
Posterior cortical atrophy (PCA) is a neurological disorder characterized by the gradual deterioration of the brain’s outer layer, particularly in the posterior (back) part of the brain. This region often shows the presence of amyloid plaques and neurofibrillary tangles—abnormal protein accumulations typically linked to Alzheimer’s disease. However, they appear in a different part of the brain in PCA cases. Like Alzheimer’s, it usually progresses slowly, and there is some overlap in symptoms.
Huntington’s Disease is a rare genetic disorder that often affects patients at a younger age than Alzheimer’s. However, progression is highly variable and usually slow.
Dementia with Lewy Bodies is another form that frequently progresses faster than Alzheimer’s. It shares some features with Parkinsonian dementia, but the form associated with the movement disorder, Parkinson’s disease, is slower-moving.
Characterized by a loss of nerve cells in the frontal or temporal lobes, Frontotemporal dementia, or FTD, typically has an accelerated progression compared to Alzheimer’s.

No matter what form your family takes, you should not assume you have extensive time to plan for the future. Every patient is different, and some people may experience a faster decline for various reasons.

As soon as you receive an Alzheimer’s or dementia diagnosis, we recommend seeking legal help to create a power of attorney, apply for assistance programs if necessary, manage assets, and make other decisions while you still can.

Find Out More About Legal Planning for the Stages of Dementia With Van Dyck Law Group

If you or a loved one requires help with estate planning in New Jersey, the Van Dyck Law Group is ready to assist. Our experienced elder law attorneys are committed to helping you explore your legal options, answer your questions, and create documents tailored to your specific needs and wishes.

We recognize the emotional and practical challenges that often come with a life-changing diagnosis, and we’re here to offer knowledgeable, compassionate guidance throughout the entire process. To learn more, please contact us at (609) 293-2621.