Understanding the Progression of Dementia: What to Expect

A diagnosis of dementia can bring a range of emotions to both the individual diagnosed and their family- fear, anger, possibly reassurance, but almost always, uncertainty. It can be difficult to understand what dementia is and what it means for the future in regards to life, care and life expectancy. With no cure and fluidity in symptoms, it is a particularly difficult diagnosis and often brings more questions than answers.

 

Top Takeaways

• Dementia is an umbrella term for a group of Neurocognitive diseases, including Alzheimer’s, Vascular Dementia, and more. 
• Dementia has rough stages that can help guide a family in long term planning
• Overall, dementia is unpredictable and impacts each individual differently. There is no standard life expectancy. This uncertainty can take a toll on everyone involved. 

 

Dementia: An Umbrella Term

Dementia is an umbrella term used to describe a group of Neurocognitive diseases. At this time, there is no cure or vaccination for any of these diseases, unfortunately. These diseases include:

• Alzheimer’s Disease: Alzheimer’s disease is the most common form of dementia and specifically targets memory, causing forgetfulness early on. 
• Vascular Dementia: Vascular dementia causes changes in brain functioning due to impaired blood flow to the brain. People with heart disease are at a high risk for this type of dementia.
• Lewy Bodies Dementia or Dementia with Lewy Bodies: LBD is caused by the build up of lewy bodies in the brain and is commonly known to cause hallucinations. 
• Frontotemporal Dementia: FTD impacts the front lobe of the brain. It often causes changes in emotional regulation and safety awareness. 
• Mixed Dementia: Mixed dementia can be a combination of different types of dementia- often vascular and Alzheimer’s. 
• Parkinson’s Disease: At times, Parkinson’s disease can develop dementia symptoms. Oftentimes these symptoms are similar to LBD symptoms when they appear.

 

Other diagnoses that you might hear are mild cognitive impairment, major Neurocognitive impairment, or Young Onset (or early onset) Dementia.

What these diseases have in common is their impact on the brain and how these changes impact an individual's cognitive function. A few things to keep in mind are:

• They each have different symptoms that appear at different times.
• Symptoms often include things such as:
• Memory changes
• Word finding issues
• Difficulty with safety awareness
• Changes in emotions. 

 

There is so much that is unknown, even by researchers and physicians. According to the Alzheimer’s Association, Researchers believe there is no single cause. Dementia can impact any person, at any age, and with any background.

Predictors and risk factors may or may not be avoidable. Some unavoidable risk factors include:

• Age: The prevalence of dementia increases as age increases
• Gender: More women are apt to be diagnosed with dementia at some point in their lives
• Family History: There is some connection between family history, and probabilty of future generations being diagnosed.

 

Some protective measures include:

• Eating a healthy diet to manage BMI and potential heart issues,
• Physical Activity
• Cognitive stimulation
• Socialization

 

Luckily, more attention is being given to dementia as a public health issue and clinical trials are regularly being done to find answers. 

 

Stages of Dementia

While there are unknowns, there is information that can help guide families impacted by a dementia diagnosis. Oftentimes, we hear of dementia being grouped into stages. However, it is important to keep in mind that cognitive decline looks different for everyone. Any given individual may experience a symptom that someone else does not experience or experiences at a different time within the disease process. 

 

While stages can be difficult to specify, there are ways to group symptoms and offer guidelines as to what to expect. 

 

Early Stages: In the early stages, an individual will experience mild symptoms. They may be so mild that not everyone notices the changes.  

• Memory loss 
• Changes in judgment
• Word finding issues
• Difficulty with reasoning

 

They may also experience changes in mental health such as anxiety or depression. In the early stages, many people are able to utilize coping strategies such as reminders and maintaining routine. People are able to manage most activities of daily living and instrumental activities of daily living, perhaps with some additional support. 

 

It’s in the early stages that caregivers should begin to pay attention to safety concerns. Because of the unpredictability of dementia, you don’t know when someone may forget to turn the stove off or become lost while driving. 

 

Middle Stages: People with middle stages of dementia will experience the symptoms of the early stages with more frequency and intensity. Symptoms generally begin to impact an individual’s ability to manage day to day tasks. Symptoms may begin to include:

• Challenges with making and executing plans
• Difficulty with decision making- even simple decisions
• Communication can be impaired

 

Caregivers may begin to notice changes in their loved one’s ability to manage their personal care as well. Family or other supports tend to become more involved due to lapses in their loved one’s ability to manage independently. 

 

Late Stages: Late stages are generally when symptoms continue to progress and begin to turn into more physical symptoms. These include:

• Forgetting important names
• Disorientation to place and time
• Physical challenges such as incontinence, changes in gait, swallowing
• Difficulty following directions

 

In the later stages of dementia, a provider may recommend care providers such as nursing home care or home care. (It’s important to note that even individuals with advanced dementia can age in place if they have the right support.) They may also suggest hospice care to offer support to both the individual and the family members through the end of life.

 

It can feel overwhelming to see such an extensive list of symptoms- many of which are scary or unnerving. It’s important to remember that not everyone will experience each symptom. Documenting your loved one’s symptoms may help their provider understand how the disease is impacting them and manage symptoms as the disease progresses. Some specialists that you might consider adding to the medical team in addition to a primary care physician to help manage symptoms include neurology, psychiatry, or a geriatric doctor.

 

No matter where a person falls within the stages of the disease, it’s important to keep quality of life at the forefront. Consider ways to support independence and dignity, no matter the level of support someone may require. 

 

How Soon will these Symptoms of Dementia Occur? 

Unfortunately, there is no clear cut answer to know when each symptom will appear and there is no cure. Often, when a person is diagnosed, the disease has already begun making changes in the brain, and there is no way to determine for how long those changes have been occurring. The life expectancy of someone with dementia is anywhere from 2-20 years.

 

Different types of dementia, progress in different ways. For example:

• Alzheimer’s disease progresses in a steady slope. If someone’s symptoms come on quickly, they will likely continue with a quick progression, and same if they begin slowly.
• Vascular Dementia, tends to progress in “steps”. A person’s abilities may drop quickly, but then plateau, and then repeat.

 

Pay attention to quick changes in your loved one’s cognition. Consider keeping a log of your loved one’s symptoms. This can help detect changes and understand triggers for changes.

• Sometimes, symptoms are expedited by significant changes in an individual’s environment or health. For example, the coronavirus pandemic also accelerated some dementia patient’s symptoms through isolation and change in routine, according to a study from the National Institute on Aging.
• If you as a caregiver ever notice a quick, acute, change in symptoms it is important to discuss with your loved one’s health care team. Acute changes may be a sign of an underlying medical issue, causing an exacerbation of symptoms, rather than a progression.

 

Some families struggle with not knowing the prognosis, or survival rate. It’s normal to feel fear in times of uncertainty. Caregivers may struggle to make long term plans for the future and may struggle with their caregiver endurance. Caregivers are in a position of being in a long bereavement period as they see the changes slowly occur in their loved one.  They may also experience feelings of wanting their loved one to be at peace. 

 

Unfortunately, there is no clear cut road map to understanding dementia. However, there is much that can be learned about the disease and support options. When it comes to uncertainty, knowledge is power. The more you know about dementia, the more you can be in control of what to expect.