An Alzheimer’s diagnosis raises countless questions about driving, decision-making, finances, and how to keep living a full life. Kaitlin Seibert, MD is a Behavioral Neurologist at Cleveland Clinic. She offers practical, compassionate guidance for individuals and families walking this path.
Read the interview with Dr. Seibert below.
WAM: When someone first receives an Alzheimer’s diagnosis, what are the most important conversations that need to take place between them and their support systems?
Dr. Seibert: Communication is key. With Alzheimer’s disease, the person living with the condition is often not the first to notice symptoms. Instead, partners, children, or close friends frequently recognize changes and raise concerns out of love, and often fear. Ironically, forgetfulness can be somewhat protective. Individuals may forget that they forgot something or naturally develop strategies to compensate, allowing them to maintain independence for quite some time. At the same time, they may minimize changes in function, not because they are in denial, but because they simply don’t remember those changes occurring.
One of the most important things families can learn is to redirect rather than correct. Repeatedly pointing out mistakes can lead to frustration for everyone involved. Instead, approaching conversations with patience, grace, and empathy helps preserve dignity while supporting the person living with Alzheimer’s disease.
An Alzheimer’s diagnosis also affects the entire family. Loved ones often experience anticipatory grief while adjusting to new caregiving roles. During this season, it is essential to turn toward one another rather than against one another. Alzheimer’s disease is best navigated as a team.
WAM: What legal and financial planning should happen, and who should be part of those conversations?
Dr. Seibert: Trust becomes especially important after an Alzheimer’s diagnosis. Because memory loss can lead to confusion, anxiety, and sometimes suspicion, discussing future wishes early helps ensure that the person’s own values continue to guide decisions throughout the course of the disease.
Shortly after diagnosis, I encourage patients to identify whom they would like to make healthcare and financial decisions on their behalf should they become unable to do so. Completing durable powers of attorney and advance directives early protects the individual’s autonomy by documenting their wishes while they are still able to express them clearly.
These conversations should begin with the person living with Alzheimer’s disease, with trusted family members or loved ones included as appropriate. The goal is not to take away independence but to preserve the person’s authentic voice throughout every stage of the disease.
WAM: Many people diagnosed with Alzheimer’s disease, especially those with earlier onset AD, want to—and are still able to—engage in life. How can the support systems around them encourage their independence and not inadvertently overstep by making decisions for them?
Dr. Seibert: Living with Alzheimer’s disease is exactly that: living. We encourage people to continue participating in activities that bring meaning, purpose, and joy for as long as it is safe to do so.
Often, the goal is not to replace independence but to support it. Small accommodations can make a tremendous difference. For example, creating a dedicated “memory station” with a calendar, medications, and commonly used items like keys, a wallet, and a phone can help maintain independence while reducing frustration.
From an ethics perspective, we strive for supported decision-making whenever possible. Rather than making decisions for someone, we provide the support they need to continue making their own choices safely. The goal is not to live in fear of Alzheimer’s disease, but to continue living well despite it.
WAM: Driving is often one of the earliest and most emotionally charged independence questions. How do you recommend families and doctors navigate that conversation?
Dr. Seibert: Driving often represents much more than transportation. For many people, it is closely tied to their sense of autonomy and independence, which is why conversations about driving can be so emotionally challenging.
I encourage patients and families to begin discussing driving with their care team early, before safety becomes an urgent concern. We evaluate the cognitive skills involved in driving, including attention, processing speed, visuospatial abilities, judgment, and executive functioning. Because physicians cannot observe someone behind the wheel, referrals to occupational therapists who perform comprehensive driving evaluations are often extremely helpful.
In the meantime, practical strategies such as sharing your location with loved ones or driving with another person in the car can provide additional peace of mind without challenging the individual living with Alzheimer’s disease. If driving becomes unsafe, our goal is not simply to stop someone from driving; it is to ensure they can still get where they need to go through transportation planning and community resources. Preserving mobility remains an important part of preserving quality of life.
WAM: How do you judge when a person diagnosed can no longer make decisions about their own treatment and care plans? At what point, and in what ways, does that capacity typically begin to shift, and how do families best navigate that?
Dr. Seibert: Decision-making capacity is more nuanced than many people realize. It is not an all-or-nothing concept, nor is it determined simply by a diagnosis of Alzheimer’s disease. Capacity is decision-specific and may change over time.
When we evaluate decision-making capacity, we consider whether an individual can understand the relevant information, appreciate how it applies to their own situation, reason through the available options, and communicate a consistent choice. These are the core elements of decision-making capacity and help us determine whether someone can make a particular decision at a particular point in time.
For example, someone may still be able to decide where they would like to live or which activities they enjoy while needing assistance understanding the risks and benefits of a complex medical procedure. Similarly, if an individual is unable to consistently retain information during a discussion or repeatedly falls victim to financial scams, their capacity for certain medical or financial decisions may be diminished.
Our role is to balance autonomy with safety. Whenever possible, we support individuals in expressing their preferences and participating in decisions about their care. As Alzheimer’s disease progresses, trusted family members and designated decision-makers may gradually assume a larger role, not by substituting their own wishes, but by advocating for the values and preferences the person expressed when they had decision-making capacity.
From an ethical perspective, our goal is not simply to protect people from harm. It is to preserve each person’s dignity, personhood, and authentic wishes throughout the course of the disease. That is why early conversations and advance care planning are so important.