What to do next as your person's medical decision-maker.

Quiz Questions

• 1.
  If/when a medical situation comes up, what does that look like for you? (Choose the best fit)

  • A.
    I've been making the decisions — and lately I've questioned whether continuing to do “more” medically is actually still helping my person.
  • B.
    My person is still capable of making their own medical decisions, and I’m mostly there as another set of eyes and ears — or someone to talk things through with.
  • C.
    I've been stepping in because my person can’t reliably make their own medical decisions anymore.
• 2.
  Which of these thoughts is closest to your own lately?

  • A.
    “I’m already making medical decisions, and I keep second-guessing myself because I don’t feel prepared.”
  • B.
    “I can tell things are changing, and I really don’t want to be figuring out how to speak up for my person for the first time under pressure.”
  • C.
    “I’m not sure what we’ve been doing is actually helping, and I’m worried my person is being put through medical care that might be doing more harm than good.”
• 3.
  During new medical situations or conversations with healthcare providers, what feels most challenging?

  • A.
    Making sense of the options. Things move fast and I don’t feel I have much time to think them through.
  • B.
    Deciding when to ask more questions or how to say "no" when something feels like it's too much for my person — even if it’s technically an option.
  • C.
    Bringing up what could be coming down the road so I can talk about it with my person — before it turns into a decision I have to make for them.
• 4.
  Which feels most true?

  • A.
    I’m a decision-maker trying to slow things down. I don't want to feel rushed or unsure afterward.
  • B.
    I’m questioning whether continuing certain care still fits who they are. Protecting their comfort and quality of life is becoming the priority.
  • C.
    I want to use this time wisely because they are still able to weigh in. I’m paying attention and trying to stay a step or two ahead.
• 5.
  Which of these would help you feel more settled?

  • A.
    Knowing I won't freeze up or second-guess myself when I need to speak up or make a medical decision.
  • B.
    Feeling sure the choices we’re making reflect who my person is and what matters most to them.
  • C.
    Not worrying I'm missing something important we could be doing now — and knowing I'm putting my energy into the right things.

Quiz Outcomes

• 1.
  The Proactive Partner

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  What your answers suggest about where you are right nowYou’re a care partner. Your person is aware that things are changing — and even if they don’t always want to talk about it — they’re still capable of sharing their thoughts, preferences, and making their own decisions. You know you’ll be a go-to person for medical decisions  — and you’re wondering what you should be doing now while there is still time. Many in your shoes worry that thinking ahead may be seen as too soon, or worse, as overstepping. Trust your instincts here — preparing now is how you protect both of you. This is the time for must-have conversations, building a support system, and uncovering what you’ll need to be a confident advocate.What’s holding you back, and it’s not your faultAfter a dementia diagnosis, no one is handed a roadmap for what to do next, what to focus on accomplishing now versus what can truly wait. Doctors will usually say something generic like “go get your affairs in order” and make sure to “talk about your wishes.” Most won’t talk directly to you or spell out what you need to do next as your person’s medical advocate. Let me be clear: the time you have now matters, and there’s a path other than ‘wait and see.’ You just can’t rely on the healthcare system as it exists today to guide you down it.⭐ Here’s what to focus on nextThere are a few things that matter most right now as a care partner — because they are time sensitive. Taking care of them sooner rather than later means future medical decisions can be less stressful. The best care options become clearer and in line with your person’s values. 1. A basic understanding of one term: “Capacity.” Think of capacity as the ability to do something in an informed way. It’s about more than the ability to remember things. When it comes to medical decisions, we’re looking at whether someone can:Understand what medical issue is happening right nowConnect it to their own health historyConsider the available optionsWeigh the risks and benefitsExplain their reasoning for the choice they’re makingThis matters because many people living with dementia can still appear capable on the surface. In short encounters (think the ER or a hospital setting), it’s easy for struggles with these steps to be missed. And too often, care partners aren’t clearly told when it’s time to start stepping in. This is a setup for your person receiving care that isn’t in line with their values. The truth is: you know your person far better than any healthcare professional ever will, and it’s likely you’ll realize their lack of ability to make medical decisions first. If this section is giving you pause…In case you’re thinking:“I’m not sure they can actually do these steps,” or“They don’t really understand their medical situation anymore,”— That’s important. If this feels more true to you, there’s another quiz result — focused on people who are already acting as their person’s medical decision-maker — that will likely feel like a better fit.👉 You can read that section by clicking here.Keep reading here if you’d like, but trust your instincts. 2. Next up, these 2 time-sensitive tasks. Issue is: once capacity is lost, it’s much harder, or even impossible, to take action here.1 . Talk about what “quality of life” means to them. Document their answers.What you learn during these conversations will shape how you make day-to-day care decisions as well as their medical decisions. It may sound simple, but a person’s value of quality of life and what “living well” means to them is the key to making every medical decision on their behalf, no matter the setting — an office, the ER, or hospital. 2 . Make sure a medical decision-maker is discussed and clearly named.Check in and ask your person:Do you have an advance directive naming who you want to make your medical decisions?Is this the “right” person?Did you name a backup person in case something happens to the first person chosen? Keep in mind, advance directives are just pieces of paper. They are commonly asked about inside the healthcare system and can serve as important tools, but they are no replacement for conversations with your person. You’ll often hear advice to ‘talk about their wishes.’ That matters — but it’s not the first place to start. Getting clear on these pieces is the start of making those conversations far more useful later.⭐ When you’re ready for clear support to organize yourself and take advantage of the time you have nowMedical Decision Making 101 for dementia caregivers teaches the foundational concepts and actions that matter as your person’s medical advocate.Inside MDM 101, you’ll learn:What your role inside the healthcare system actually is (both legally and practically speaking)What to prioritize talking to your person about sooner rather than later when it comes to their medical careHow to talk about your person’s capacity for medical decision-making with healthcare professionalsWhat to do to feel organized and prepared before anything becomes urgentMDM 101 is short, practical, and designed to help you make the most of this window while your person can still participate.Learn about Medical Decision Making 101A short, physician-created course to help you get clear, get organized, and protect your future self.Take a breath. It’s not too early to become prepared.
• 2.
  Caregiver In the Thick of It

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  What your answers suggest about where you are right nowYou’re a medical decision-maker in the thick of it, carrying the responsibility of speaking up and making decisions for your person.You’re doing a lot of invisible work — staying vigilant, scanning ahead, and trying to be ready for what’s coming next. You’ve had to weigh decisions about medications, testing, hospital stays, or surgery — sometimes with little warning.You may have been overlooked or excluded from conversations, even when it’s clear your person can’t fully decide for themselves.You want to do right by them — and part of you wants to avoid looking back and wondering whether a different choice, or more preparation, could have changed how things unfolded.What’s holding you back from feeling prepared — and it’s not your faultMost people assume that once they’re the medical decision-maker, they’ll naturally be brought into conversations and guided through decisions as they come up.But that’s not consistently how things work inside the healthcare system — particularly in the ER or hospital.Loss of decision-making ability isn’t always clearly recognized. And unless you’re visibly present or actively speaking up, teams may default to asking your person questions — even when they can’t fully comprehend or weigh their options.At the same time, the system quietly expects you to be ready — to absorb complex information, manage your emotions, and answer questions like, “What do you want us to do?” with little warning or preparation.There’s a mismatch — between what’s expected of you and what preparation you’re actually given — it’s the source of so much stress.You’re not missing anything obvious. No one has shown you how to approach your role and feel ready for it. The way forward starts with focusing your energy on the right things.Here’s what to get clear on nextTo feel prepared, you need reference points in place that help you think ahead and make decisions as they come up. Here are two I recommend you start with. 1. Being clear on your person’s one overall goal of careYour person’s goal of care shouldn’t be figured out in the middle of a medical decision. When things feel urgent and emotions are high, it’s much harder to step back and think clearly about what your person would actually want.Because most decision-makers aren’t given time or guidance to sort this out ahead of time, they end up evaluating each test, treatment, or hospital stay in isolation — without a clear way to judge whether it truly fits their person.A clear goal of care is the reference point for every medical decision. It’s what helps you step back, weigh tradeoffs, and come back to what matters most when more than one option is on the table.A goal of care is not a single decision like “they’re a DNR” or “we’re trying to stay out of the hospital.” Those are important choices — but they’re not the same thing as a goal.Your person’s goal of care is the underlying priority that guides decisions as situations change.At a high level, most medical decisions fall under one of a few broad goals:prioritizing comfortprioritizing quality of life and functionprioritizing length of lifeWithout clarity on which of these matters most — and when that priority might need to change — many decision-makers struggle to trust their instincts or feel confident they’re choosing what their person would want.2. Realizing your person’s medical history is a key to feeling preparedBelieving medical situations for someone living with dementia are too unpredictable to prepare for — that you more or less have to wait and see what happens — is a common misconception.That belief comes from system failure and the fact that most healthcare professionals won’t have time to explain your person’s medical risks or help you think through the decisions that are most likely to come up ahead of time. But they aren’t random. The medical decisions you’ll make for your person will be shaped by a combination of their medical conditions, age, physical function, and their cognitive abilities. Whichever disease is causing their dementia symptoms will affect these factors — and how they interact.Which is why taking ownership of your person’s medical history becomes essential. Understanding your person’s biggest risks — is what allows you to anticipate, learn, and prepare for common medical situations. Rather than feeling caught off guard or replaying decisions afterward, having an idea of what to expect means walking into appointments, hospital stays, or ER conversations feeling steadier and more grounded — even when the situations themselves may feel stressful.When you’re ready for clear, organized support If you want help putting all of this together — without guessing or trying to figure it out on your own — that’s exactly what Medical Decision Making 101 was created for.Inside MDM 101, I walk you through:what your role as a medical decision-maker actually looks like in real life,how to choose a goal of care that truly guides decisions (there are only 3 to choose from),how to gather and use medical history in a practical, manageable way,and a repeatable process you can lean on every time a decision comes up.It’s a short, practical course (about 90 minutes) and it’s designed to prevent stress and regret for people who are already in the thick of being their person’s medical decision-maker. Take a breath. You don’t have to figure everything out today. But the preparation you build now will make the next decision — and the ones after it — feel far less heavy.
• 3.
  Navigating end stage/end of life decision-making

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  What your answers suggest about where you are right now  You’re no longer just navigating new medical situations. You’re starting to question whether the care your person is receiving is actually helping them — or putting them through more.You may be seeing repeated hospitalizations, complications adding up, or “recovery” that doesn’t feel as meaningful anymore. And you find yourself asking questions like: Would they want this? What are we actually trying to do here?You know your person values their quality of life, comfort, and dignity — and you’re trying to protect those values.At the same time, part of you worries: What if stopping something causes suffering? What if there’s still something that could help?That tension — between protecting their comfort and fearing regret — is a sign that you care deeply.What’s holding you back — and isn’t your fault  Our healthcare system is fast-paced and often reactionary. Even when it starts becoming harder to see a clear benefit from traditional, protocol-driven medical care, the system doesn’t reliably slow down to help you adjust how decisions are made. Very little time is spent helping you step back and ask whether care options are more focused on improving quality of life or prolonging life, how to think through tradeoffs, or how different options fit your person’s values.So if you feel stuck or conflicted, it’s not because you’re doing anything wrong. It’s because no one has shown you how to navigate this stage in a way that keeps your person at the center of medical decisions — without pressure or judgment.Here’s what to get clear on nextBefore you say “yes,” “no,” or “let’s try and see how they do,” there are two things I want you to focus on first. These two things can help you pause, speak up for your person, and keep their values at the center of decisions — especially when the system doesn’t slow down or ask.1. Your person’s overall goal of careYou don’t want to figure this out in the middle of a medical decision. When things feel urgent, it’s harder to step back and think objectively about what direction their care should be moving in.Most decision-makers end up evaluating each test or treatment on its own — without a consistent way to judge whether it fits the bigger picture for their person.Having one set goal of care provides a strong reference point to weigh options against. At a high level, most medical decisions fall under one of a few broad goals:prioritizing comfortprioritizing quality of life and functionor prioritizing length of lifeBeing clear on which of these is the priority now — and knowing when it may need to shift — makes it much easier for you to speak up, ask questions, and make decisions with less guilt knowing they’re in line with what your person would want. 2. Learn what matters once prolonging life isn’t the main priorityWhen quality of life or comfort is the priority, it becomes more important to understand which decisions, documents, and services will help you protect your person.You (and your person) will benefit from your understanding:How decisions about CPR, hospitalization, and life-prolonging care don’t have to wait until you’re in the middle of themWhy medical order forms (like POLST or DNR) are worth considering to protect your person’s valuesHow support like palliative care or hospice can support you to choose care that aligns with what your person would want If you’re like most decision-makers, you’re not being explained these things with enough time to process them. Knowing how and when to ask for them will help you be better able to protect your person inside our healthcare system. When you’re ready for support that helps you feel more prepared for what’s ahead.If you’re navigating the later stages of dementia, repeated hospitalizations, or a shift toward comfort-focused care, Medical Decision Making 101 can help you protect what matters most to your person.Inside MDM 101, I explain:How to get clear on your person’s goal of care and use it as a guide when prolonging life is no longer the first priorityThe difference between palliative care and hospice and when to consider eachHow to approach decisions like CPR, DNR, and filling out POLST forms,How to show up for your person feeling less worried, guilty, and uncertainIt’s a short, practical course (about 90 minutes) designed to help you use the right tools to protect your person and yourself. Take a breath. You’re here, paying attention. There’s a lot to learn, and you don’t have to figure everything out today. Gaining clarity now can help you feel calmer and steadier about what comes next.