What Does a Dementia Diagnosis Really Mean?

“I have dementia.”

How many times have we heard someone say that? Families, care partners, and even doctors often use the word dementia as if it’s a specific diagnosis—but it’s not.

Dementia is not a disease. It’s a word—an umbrella term—that describes a collection of symptoms caused by changes in the brain. These symptoms can include memory loss, confusion, difficulty with language, and changes in problem-solving, behavior, or movement. But saying someone “has dementia” is like saying someone “has cancer” without knowing what type.

Just like cancer has many forms—breast cancer, lung cancer, leukemia—dementia includes over 120 known types of progressive brain diseases, including Alzheimer’s disease, Lewy body dementia, vascular dementia, and frontotemporal dementia.

Why This Matters

Understanding what’s happening in the brain isn’t just about labels—it’s about providing the right support, treatment, and care.

1. Different types of dementia affect the brain in unique ways.

Each type of dementia has distinct patterns of brain change that impact symptoms differently.

• Alzheimer’s disease often starts with short-term memory loss and gradually affects reasoning and language.

• Lewy body dementia can cause vivid hallucinations, sleep disturbances, and movement changes.

• Vascular dementia is often linked to strokes or poor circulation and can lead to sudden declines in thinking skills.

• Frontotemporal dementia (FTD) may cause significant personality, and behavior changes long before memory is affected.

  
  

Without knowing which type of dementia is present, it’s hard to anticipate challenges or tailor care appropriately.

2. Accurate diagnosis is critical for the best care and support.

Imagine if a doctor told you, “You have cancer,” but didn’t tell you what type. Wouldn’t that make it harder to find the right treatment?

The same is true for dementia. A specific diagnosis helps families and care teams:

• Understand what to expect – Different types of dementia progress in different ways.

• Find the right support – Resources, medications, and therapies vary based on the diagnosis.

• Explore appropriate treatment options – While there’s no cure, some medications may help slow symptoms, but they’re often specific to certain types of dementia.

  
  

3. We can address risk factors and focus on prevention.

While we can’t control everything, some types of dementia have known risk factors that can be managed.

• Vascular dementia is linked to heart health—so managing blood pressure, cholesterol, and diabetes may reduce the risk.

• Head injuries increase dementia risk—so wearing helmets, preventing falls, and practicing brain safety matters.

• Lifestyle factors like exercise, nutrition, and social engagement can help keep the brain healthier for longer.

  
  

Knowing what type of dementia someone has gives families a roadmap—helping them focus on what they can do to support brain health.

Moving Beyond the General Label

When someone is diagnosed with “dementia,” it’s often the beginning of a much deeper conversation.

• What changes are happening in the brain?

• What can we expect in the coming months or years?

• How can we best support this person to live well?

  
  

Getting a clear and accurate diagnosis allows families to plan, prepare, and provide the best possible care. It also ensures that people living with brain changes receive the most compassionate, informed, and effective support available.

You Are Not Alone

If you or a loved one has been told, “You have dementia,” know that there’s more to the story—and you deserve answers.

At Rise Dementia Care, we help families understand the journey ahead, offering guidance, education, and support. If you need help navigating a new diagnosis, finding resources, or understanding what comes next, reach out. Let’s navigate this together.