Here are some ideas on how to prepare for conversations with your doctor about a new early-onset Alzheimer’s diagnosis.

Asking key questions can help you feel less overwhelmed, better understand your stage, symptoms, and treatment options, and also navigate any feelings of uncertainty and potential challenges.

We compiled a list of important questions and talking points to discuss with your doctor to determine the best path forward.

What stage is the Alzheimer’s disease currently in?

One of the first questions for your healthcare professional should be about which of the seven stages of Alzheimer’s disease you’re experiencing.

An early diagnosis, commonly referred to as early-onset Alzheimer’s, is when the condition is detected before the age of 65. Generally, early-onset diagnoses are seen in people in their 50s.

Though no one wants to hear that they’re navigating this overwhelming condition at any stage, the earlier it’s detected, the better for planning for the future, including certain medications and other therapies for improving symptoms.

Research suggests that early diagnosis also helps caregivers in a handful of ways.

For example, it gives them time to adjust to any mood or personality changes in the person they’re caring for, explain the changes to other family members, and allows them more time to create the most comprehensive care plan.

Emotionally processing the diagnosis early and having time to plan accordingly also has a significant impact on mental health. Early diagnosis has been shown to decrease depression and anxiety in caregivers.

What are the key symptoms I should expect to see in the near future?

Understanding more about your stage can help you prepare for symptoms commonly seen in that stage.

For example, the hallmark of early Alzheimer’s is lapses in memory, like forgetting recent experiences or conversations.

Other early symptoms include:

  • losing track of objects
  • difficulty finding the right words
  • asking repetitive questions
  • becoming resistant to trying new things
  • mood changes like anxiety or depression

Asking your doctor about your stage’s symptoms allows everyone involved to understand what to expect, which can also help you give yourself some grace.

How is this diagnosis confirmed and are there any other tests needed?

Unlike some other health conditions, Alzheimer’s is not confirmed with a stand-alone test.

Instead, healthcare providers rely on a slew of diagnostic tools to detect it, which can include:

  • neurological exams (like testing reflexes, balance and coordination, and more)
  • cognitive and functional assessments
  • brain scans (MRI, CT, PET)
  • biomarker tests like cerebrospinal fluid testing

Your doctor will also take a close look at your medical history, taking certain factors into account, including:

Ask your doctor which tests and tools helped detect your diagnosis and if additional tests, like those listed above, may be helpful.

What treatment options are available at this stage?

Talking with your doctor about treatment options is crucial for managing the condition. Though no treatment can stop the condition, certain medications can lower symptoms or delay progression, making coping and daily life activities easier.

Here are some Alzheimer’s medication options to discuss with your doctor:

Are there any lifestyle changes or interventions that could help manage symptoms?

Certain lifestyle adjustments may also improve symptoms. Talk with your doctor about other therapies you can consider alongside medications, including:

How will we monitor the progression of the disease and the effectiveness of treatment?

Discussing how well your treatment plan is working should be an ongoing conversation with your doctor during follow-up appointments. You can discuss any side effects and symptom improvement and decide if a different treatment plan may be necessary.

When someone living with Alzheimer’s has progressed from one stage to another, it may be time to discuss different options, as certain medications are approved only for specific stages.

Have a plan with your doctor for checking in regularly, which is usually done by scheduling routine appointments weeks in advance.

What strategies can help maintain my quality of life as the disease progresses?

Quality of life should also be discussed during follow-up appointments. Your doctor can discuss coping strategies and help ensure that you and your caregivers maximize joy whenever possible.

For example, adding fun, social, and creative activities into your schedule can be cognitively stimulating and also create opportunities to relax and deepen relationships. Some examples include painting, card or board games, puzzles, coloring, and more.

It’s also important to keep meaningful activities present, including any spiritual practices you may have.

Remember that rest is just as important as socializing and other activities, especially for those with Alzheimer’s, so plan breaks into your schedule, too.

How can I prepare for potential changes in my ability to function?

There’s no perfect way to prepare for changes, but it is important to stay flexible, take breaks when needed, and be open with your doctor about recent function changes. Check in with your doctor about which tasks are becoming more difficult and which are still very manageable.

Keeping lists and Post-it reminders handy, including daily tasks and schedules, can help you stay on track. Your doctor can discuss when it may be time to turn certain tasks over to your caregivers, like driving.

How can my family and caregivers best support me through this journey?

During each stage, your caregivers will have a lot to think about and manage. Counseling or other therapies may be helpful for their well-being.

But overall, when they’re not checking in with your doctor, planning for the future, and helping with certain daily tasks, remind them to stay present and not force activities you have no interest in.

For example, if you’re feeling tired one evening but a caregiver has a movie night planned, remind them it’s OK for you to take a rain check.

Spending time together is important, whether it’s sharing meals or memories.

If you’re up for it, looking over photographs or home movies may be helpful for stirring up shared past experiences. This is referred to as reminiscence therapy, and it’s been shown to improve quality of life for older adults.

If this type of activity is too heavy for either of you to process, you can skip it. The idea isn’t to connect dots to recall specific memories but to spend time enjoying each other’s company while thinking about shared positive experiences.

You and your caregivers can also call The Alzheimer’s Association 24/7 Helpline at 800-272-3900.

This free resource offers support through information, local resources, crisis assistance, and emotional support.

What should my caregivers know about managing my condition?

Though caregivers may feel overwhelmed or stressed, a few things are never OK, including:

  • constant correcting or controlling
  • rushing
  • forcing
  • laughing at mistakes
  • condescending remarks or suggestions

Your caregivers will need some advice and maybe training for activities they might have to perform during later stages, such as feeding, bathing, and changing.

It’s also crucial to ensure that the home is a safe, comfortable, and easy-to-navigate environment.

You can ask your doctor for other important things for your caregivers to keep in mind. They can offer tip sheets and additional resources.

You can also consider trained attendants for care at home if they’re available to you.

What should I know about planning for future financial and legal matters?

Locking financial and legal matters into place as soon as possible can make you feel more confident about the future. Ask your doctor to guide you to any resources that may help you map these matters out.

For example, the first step is to document your choice of who has power of attorney. Similarly, making a plan for bills to be paid at the same time every month through automatic withdrawal can help relieve some stress and cross one thing off your to-do list.

Additionally, some living facilities offer plans that include rent and all other expenses, like utilities, cable, etc., into one monthly bill, so there’s no need to keep track of a long list of monthly due dates.

How can I ensure that my wishes regarding care and treatment are respected?

This is another area where documentation comes in handy. You can document your preferences across a wide range of areas of your life, including your preferred activities, people to socialize with, favorite and least favorite foods, etc.

It’s important to check in with your caregivers and healthcare providers about whether your care feels right for you. Maintaining open communication with your healthcare providers and being honest if you feel unsafe at home is also important.

It’s important to be proactive and informed in managing early-onset Alzheimer’s.

A strong first step is maintaining open communication with your healthcare providers and asking key questions. Gathering the right information can help you cope and plan for a smoother, more comfortable future.

From there, finding the right support team, whether friends, family, or caregivers, is the next best step to feeling more confident as you moving forward.

Remember that you’re not alone — help and companionship are often just a phone call away.