What to Do After a Dementia Diagnosis
If you just received some hard news, please remember that you are not alone. Things might feel messy but there are people to help and you do not have to have all the answers right now. If you’ve made your way to this page, its clear you’re someone curious, caring, and diligent. You’ve got this.
Step One: Give Yourself Permission to Feel It
Before you do anything else, let yourself absorb what just happened. While you’re not losing a life, you are losing a version of the future you’d imagined. That is real grief and it deserves to be felt and recognized. There is no deadline for having all the answers and if there were, none of us would make the cut. Its okay to leave things unresolved for a minute (its hard for me too, I know) and just experience this moment in time.
If some direction is comforting, there is one thing worth doing from the jump that has nothing to do with logistics. Talk to the person who was just diagnosed. Ask them what matters most to them. Hear their stories. What was their mother like? What is the best meal they ever had? What happened on that one wild night out with your aunt? What are they are afraid of? What do they want you to remember when they aren’t able to? It’s hard to know right now what these conversations will look like in the future, so connect while you can.
Step Two: Get the Legal Documents in Order
This is your most urgent practical step and the one most families wait too long to confront. While your loved one still has the legal capacity to sign documents, establish a durable power of attorney, a healthcare proxy, and an advance directive at minimum.
These documents start out with challenging, emotional, and sometimes uncomfortable conversations. It makes sense why so many people think, “we can do that later.” However, if you can get through that initial hump, the benefits to having these documents prepared prior to needing them cannot be understated.
Step Three: Organize the Medical Information
Pull together everything in one place. You’re going to be asked for a lot of information and frequently. That includes a complete medication list with doses and prescribing physicians. (What actually is the name of the blue pill?) Contact information for every provider. (Who is that heart doctor he went to back in January?) Insurance cards and policy numbers. (You put your card where?) And of course, a summary of the diagnosis including type of dementia and any cognitive assessment scores.
This information will be needed constantly in the months and years ahead. You’ll be asked for these details at appointments, hospitalizations, family meetings, and care transitions. Having it all organized now saves you enormous time and stress later. Its also safer for your loved one because the professionals you need will have all the information they need too.
Step Four: Build Your Team
You cannot do this alone, nor should you have to. It’s a lot. Trying to teach yourself not only the medical information, but also how the system works, who to call, how to know if they can be trusted, what it will cost. The list goes on for miles.
Start identifying who is in your corner. Which family members can take on specific responsibilities based on where they live, the time they have, and their skills as well. If someone is great at budgeting but cannot be present for bathing, divvying those tasks up helps everyone. Additionally, you might find that a home health aide, caregiver consultant, or grief therapist could be helpful to put in motion now.
The families who navigate dementia or illness best are not the ones who have the most resources. They are the ones that have their available resources in their toolbelt and ready ahead of time.
Last Thing
You are not behind. You are not getting this wrong. You are doing something extraordinarily hard inside of a system that was not designed to help you. Healthcare often forgets the caregiver. Somehow we are always thinking of the patient, the nurse, the doctor, but forget the people keeping them all connected. And its wildly important work.
If you would like help getting your plan in place and finding some support during this time, that is exactly what I do. Please feel free to reach out and we can talk about where you are in the journey and what you need taken off your plate.
