Where to Get Help After a Dementia Diagnosis (4 Places to Start)

If someone you love was just diagnosed with dementia, there is something I want you to hear before anything else. You are not behind. You are not doing this wrong. And you do not have to have it figured out yet.

I was recently a guest on a podcast, and they asked me all kinds of questions about dementia. Two of them were so good that I wanted to answer them here too, because they are the exact questions I hear from families in those first weeks.

The first was: where should somebody turn for help early on, in the first 30, 60, 90 days after a diagnosis?

The second was: the day after the diagnosis, what is the very first thing somebody should be thinking about doing?

Underneath both of those questions is something I see over and over again, and it is the thing I most want to talk you out of.

Why “I Do Not Need Help Yet” Is the Wrong Test

Here is the mistake I watch families make, and it is completely understandable.

They wait.

Things are still manageable. Your loved one is still doing well. You are handling it. So you tell yourself you will make the calls when things get harder, when you actually need something.

Please remember this. You do not need the help right now in order to receive the help, or at least to ask about the help. I think one of the biggest mistakes that we make is waiting until we need something to go get something, when we can absolutely get help and information right now that will help us later, even if we do not necessarily need it today.

Every one of the resources I am about to walk you through takes one phone call. Not a commitment. Not an application. Not a decision. A phone call where you find out what exists in your area, so that six months from now, when something changes at two in the afternoon on a Tuesday, you already know who to call.

That is the whole point. You are not solving anything today. You are shortening the distance between a hard moment and the help that fixes it.

And there is one item on this list that will not wait, so let me start there.

The One Thing That Actually Has a Deadline

When they asked me what somebody should be thinking about the day after a diagnosis, my answer was not emotional support. It was not education. It was paperwork.

Not because paperwork matters more than your loved one’s wellbeing. It does not. But because everything else on this list will still be available to you in a year, and this one may not be.

At some point, the person with dementia will no longer be able to participate in this kind of planning and decision making. And if we do not have this paperwork in place before that point, they may never be able to put it into place, and then we end up with a legal mess. A mess that is expensive, slow, and happening at the exact moment you have the least energy to deal with it.

So while your loved one can still participate, here is where to start.

Make Sure You Can Actually Get to the Financial Information

Not eventually. Now.

Do you know where the accounts are? Do you know how to log in? Do you have the passwords, or at least know where they are written down? Do you know where the important paperwork lives, the deed, the insurance policies, the tax records, the pension information?

Many caregivers discover months in that one person in the household always handled the money, and that person is the one with dementia. Sorting that out while they can still tell you where things are is a completely different experience than sorting it out after.

If you have noticed money getting confusing before anything else did, you are not imagining that either. Financial changes are often one of the earliest signs families notice, sometimes well before memory loss.

Talk to an Elder Law Attorney Sooner Rather Than Later

This is the one I push hardest on, and I know it is the one that feels the most intimidating.

Many elder law attorneys will do a first consultation just to see whether this is something they can help you with, and whether it is really needed in your situation. So you are not signing up for a huge legal process by making the call. You are finding out whether you need one.

An elder law attorney can help you arrange your assets so that if you ever really did need to pay for care, things are structured to protect as much as possible. They also handle the paperwork that matters most: powers of attorney, medical power of attorney, financial power of attorney.

If the words power of attorney make your stomach drop a little, you are in good company. There is a lot of confusion around what it actually does and when it takes effect, and it is worth understanding how power of attorney really works in dementia before you sit down with anyone.

The reason I keep repeating sooner rather than later is not to scare you. It is because this is genuinely the one door on this entire list that closes.

Where to Turn for Help in the First 30, 60, and 90 Days

Now for the other question. When you are newly in this and you do not know what exists, where do you actually go?

There are four places I would point any Careblazer toward in the beginning.

1. The Social Worker at Your Loved One’s Clinic

If your loved one receives primary care at a clinic or a hospital, ask the primary care provider a very simple question: is there a social worker on staff?

In my clinical experience, social workers have been the absolute best type of person to figure out what resources are in your area that can help. They know the local landscape in a way that almost nobody else does. They know which programs have waiting lists, which ones are actually good, which ones your loved one may qualify for.

This one costs you nothing but a question at an appointment you are already attending.

2. Your Local Area Agency on Aging

This one is specifically for those of you in the United States.

Open up Google and type in “local area agency on aging.” It will route you to the agency serving your county. There will be a phone number. You can also start from the government’s Eldercare Locator, which connects you to the same network of local agencies.

Call that number, explain a little bit about your situation, and ask: what resources are available to me?

At the very least, you will get an idea of things you did not know about in your community. Adult day health care. Respite services. Meal delivery. Transportation. Caregiver support programs. Whatever your county has to offer, you will learn what it is.

I want to be honest with you here. What is available varies a lot depending on where you live. Some counties have a great deal. Some have very little. But you cannot know which one you are living in until you make the call, and the families who make it early are almost always surprised by at least one thing on the list.

3. The Alzheimer’s Association Helpline

There is a 24 hour, 7 day a week phone number you can call, staffed by the Alzheimer’s Association helpline. That number is 1-800-272-3900.

I want to clear something up about this one, because it stops people from calling.

Even if your loved one does not have Alzheimer’s disease type dementia. Even if they have a different type of dementia. Even if you are not sure yet, or they do not have a formal diagnosis. That is still a phone number you can call.

Tell them a little bit about what you are going through. See what resources they have for you.

Two in the morning counts. That is what 24 hours a day means, and I do not think enough caregivers know it.

What to Actually Say When You Call

I know that for some of you, the barrier is not knowing that these numbers exist. It is the call itself. What do you even say?

You do not need a script or a diagnosis code or a list of symptoms. Say some version of this:

“My husband was recently diagnosed with dementia. I am trying to understand what support exists in our area. What resources are available to me?”

That is it. That one sentence works at the clinic, at the Area Agency on Aging, and on the helpline.

You are allowed to call and not know what you are asking for. That is literally what these people do all day.

4. Somewhere to Keep Learning, Week After Week

The fourth one is a shameless plug, and I am going to make it anyway, because it is the one families tell me made the biggest difference in the early months.

The Dementia Careblazers YouTube channel. I share something every single week that I think can help you, and I have been doing that for years now. There are hundreds of videos at this point.

Here is the part most people do not know about. There is a search feature on the channel itself. You can type in bathing. Dressing. Family. Aggression. Delusions. Hallucinations. Sleep. Testing. Diagnosis. Whatever the thing is that is happening in your house this week, type that keyword into the search on my channel, and every video I have ever made on it will come up.

So on the night when something new happens and you are sitting there at eleven o’clock wondering whether this is normal, you have somewhere to go that is not a panicked internet search.

What You Are Really Building in These First Months

If you make all four of those calls and get the paperwork started, you will not feel dramatically different tomorrow. Nothing visible will have changed.

But something real has.

You will know who to call. You will know what your county offers. You will know whether your loved one’s clinic has a social worker. You will have a number that answers at any hour. And your legal and financial footing will be set while your loved one could still be part of setting it.

Caregiving does not get easier because you got tougher. It gets easier because you stopped carrying it by yourself, and because you built the scaffolding before the weight showed up.

You Do Not Have to Figure This Out Alone

Careblazer, if you are in the first weeks or months of this, I know how much information is coming at you and how little of it feels like it is actually for you.

Inside the Care Collective, we talk about exactly these kinds of situations. Not just what to do first, but how to make these calls when you are exhausted, how to handle the family members who disagree with you, how to cope with the emotional weight of planning for something you do not want to think about, and how to take care of yourself while you are doing all of it. There are weekly live support rooms with other caregivers who have already made the calls you are about to make. You can learn more here.