13 Essential Dementia Questions Every Family Should Ask

Receiving an Alzheimer’s disease or dementia diagnosis for yourself or a loved one is devastating. Understanding and navigating this complex and progressive disease requires time, education, and support.

For many, their doctor or healthcare team plays a vital role in helping to understand the diagnosis and receive the best treatment and care. Having answers to important questions is essential for comprehending the disease and making informed decisions for the future. A thorough conversation with your physician, healthcare team, or dementia specialist is crucial.

To help you prepare for this discussion, we’ve compiled a list of important questions that every individual and family should ask.

Understanding Alzheimer’s Disease and Dementia

Dementia is a general term for a progressive disease affecting memory, thinking, and behavior. Although the exact cause of dementia is unknown, it involves abnormal protein deposits in the brain that damage neurons.

Alzheimer’s disease is the most common form of dementia, and early signs and symptoms include memory loss, confusion about time and place, difficulty completing familiar tasks, and changes in mood or personality.

Alzheimer's disease is diagnosed with cognitive testing, neurological exams, CT, MRI, PET scans, and blood tests.

The risk factors for developing Alzheimer’s disease include:

• People aged 65 and older are more likely to develop dementia
• Genetics
• Head trauma
• Lifestyle factors, such as poor diet, obesity, and lack of physical activity

There are 3 stages of progression, including:

• Mild/Early: Memory lapse, trouble with complex tasks, mood changes
• Moderate/Middle: Increased memory loss, confusion, difficulty recognizing people, behavioral changes
• Severe/ Late Stage: Total loss of ability to communicate, an inability to perform activities of daily living, such as bathing, dressing, toileting, or eating. This is the last stage of life.

Although there is no cure for Alzheimer’s disease or dementia, there are ways to minimize your risk, including:

• Regular exercise
• A heart-healthy diet including plenty of fruits and vegetables, and limiting sugar and saturated fats
• Cognitive and mental stimulation
• Socialization
• Managing chronic conditions such as diabetes, high blood pressure

13 Essential Dementia Questions

Don’t be afraid to ask questions. There are important questions every family should ask their doctor, specialist, or healthcare team. The answers to these questions provide opportunities for you to better understand the disease and make critical decisions for your loved one’s health.

1. What is the Type of Dementia?

Ask your doctor to explain what testing was done to determine the type of dementia. There are over 100 types of dementia that vary in causes, symptoms, and progression. Understanding the specific type of dementia is important for managing symptoms and getting the best available treatment.

2. What is the Stage of Dementia?

Understanding the stage of dementia can help you know what your diagnosis means for your prognosis and current and future quality of life.

3. What Symptoms Can I Expect?

Dementia symptoms vary depending on the type of dementia. Consult with your doctor about the possible symptoms associated with your specific diagnosis. Ask about types of symptoms, when they may occur, and how quickly they can progress. This will help you know what to expect and can help with short and long-term planning.

4. Could Other Conditions be Contributing to My Symptoms?

Sometimes, other conditions, such as unstable or untreated diabetes, a stroke, obesity, or heart disease, can impact the blood flow to your brain. Knowing this information can help you get an accurate diagnosis.

5. What Are Treatment Options?

It’s crucial to explore various treatments for your specific type of dementia with your doctor. Although there is no cure for dementia, treatment options, such as cognitive and physical therapies, may help manage symptoms, slow down progression, or improve quality of life.

6. Available Medications?

There are effective dementia medications to manage symptoms, especially during the early stages. Ask your doctor about potential medications for your type of dementia.

7. Are There Any Non-Medical Treatments?

Non-medical treatments, such as cognitive stimulation, maintaining a routine, and music and art therapy, have been proven to help dementia patients manage symptoms and improve their quality of life.

8. Can You Recommend Local Resources?

Local resources or Alzheimer’s support groups can answer questions, help with care, and provide support for individuals and their families. These groups are invaluable for providing helpful advice, referrals, or having someone who can relate to what you’re going through.

9. How Often Should I Have Check-ups?

Many dementia patients and their families don’t get clear and defined information on when and how often they should see their doctor. Ask your doctor or healthcare team how often you should be seen and what symptoms need a phone call or an appointment. These appointments provide opportunities to ask questions, discuss concerns, and check progress.

10. How Can I Ensure My Wishes Are Respected?

As Alzheimer’s disease and other forms of dementia progress, they can impact an individual’s ability to speak and communicate. It’s important to talk with your doctor and family during the early stages of the disease bout making critical decisions regarding care, who will have access to medical records, and finances.

12. What Are Long-term Care Options?

As the disease progresses, individuals with dementia will need 24/7 care for activities of daily living (ADLs), such as bathing, dressing, toileting, and eating.

Ask your doctor for recommendations for help finding and coordinating care with memory care communities or in-home care providers.

13. How Can Clinical Trials Help?

There are always new treatment advancements for Alzheimer’s disease and other forms of dementia. Participating in clinical trials may offer access to new therapies. In addition, clinical trials are essential for understanding the disease, advancing research, and finding a cure.

12. How Do I Manage Challenging Behaviors?

Individuals with dementia may experience challenging behaviors such as aggression and wandering. Your doctor or specialist can recommend techniques such as creating a calm environment, using simple communication, or establishing a routine for managing troublesome behaviors.

13. When Should I Limit Responsibilities?

Family caregivers frequently have to make difficult decisions to ensure the safety of their loved ones. Individuals with dementia may begin to exhibit signs indicating they need to stop driving or managing their finances. Warning signs can include getting lost, overpaying or not paying bills, or falling victim to scams. It’s important to speak with your doctor for guidance and advice in these situations.

Wrap-up

A dementia diagnosis is overwhelming. Discussing concerns with your doctor or healthcare team before the disease progresses is essential. These experts can provide valuable information about symptoms and treatment options, in addition to recommending long-term care options, resources, and supportive services.

Before meeting with your doctor, speak with your loved ones to create a list of any questions or concerns.

To learn more, listen to the “Essential Dementia Questions Every Family Should Ask” episode of The Disappearing Mind, an award-winning podcast hosted by National Dementia Coach Dawn Platt that helps listeners navigate along their personal journey with dementia through exclusive and direct perspectives of people diagnosed with the disease, their caregivers and experts in the field.