What should I do after I’ve been diagnosed with Alzheimer’s dementia?

If you’ve recently learned you are showing early symptoms of Alzheimer’s disease, that’s undoubtedly what you’re asking yourself.

This is a scary time for you. We feel for you and for your family. Alzheimer’s and dementia aren’t easy diagnoses to deal with, and the future must seem very uncertain to you.

You’re probably experiencing a range of strong emotions right now. Anger. Sadness. Shock. Maybe even relief, because at least you finally have an answer that explains the symptoms you and your loved ones have been noticing.

That’s ok. Those are all normal, valid feelings. Talking about them with your spouse or partner, with a trusted confidante or a grief counselor, or writing about them in your journal can help you work through them.

So, that said, let’s talk about next steps.

Here’s what you should know.

The first thing you need to know is that you’re not alone in this. Your family, your friends, your church, our memory care experts here at Episcopal Church Home — we’re all here to support you. You’ll have help.

The second thing you need to know is that even though there is no cure for Alzheimer’s dementia, there are steps you can take to slow its progress. They seem to work for some folks. For others, they don’t. But there are ways you can fight back. And we can show you how.

Today, though, the most important task before you is to get organized. This is going to be the toughest battle you’ve ever faced. And you and your loved ones will need a plan going in.

Here are the first things you should do after you’ve been diagnosed with Alzheimer’s or another dementia disorder.

1. Figure Out Whom You Need to Tell About Your Diagnosis

Many of us here in the Louisville area tend to be fairly private, reserved people. Call it a Southern thing or a Midwestern thing.

But you won’t be able to handle this one all on your own. People — especially those closest to you — will want and need to know.

Some people who have been diagnosed with Alzheimer’s disease or dementia want to keep things in the family. If you have a family that is large enough and supportive enough to carry you through, that’s OK.

You might want to tell your neighbors. You might want to tell members of your church, temple, or other faith organization. If a specialist diagnosed you, you’ll need to make sure that the information was relayed to your family doctor, too.

It can be difficult, for some folks, to work up the courage to tell others about their Alzheimer’s diagnosis. There is nothing to fear or to be embarrassed about.

Tell others when you’re ready. But don’t wait too long to do it. Sometimes, Alzheimer’s progresses rapidly.

2. Arrange Your Support Network

Will your spouse or partner be caring for you at home in the early stages? Will your adult children, other relatives or friends be pitching in to help?

Will you need community-based services, like senior transportation or Meals on Wheels deliveries? Would enrolling in a daily memory care program help you to slow your memory loss and help your caregiver to have more time to work, run errands, and decompress?

Would joining an early-stage Alzheimer’s support group or an online Alzheimer’s message board give you advice and helpful tips, teach you coping skills, and give you a safe environment to vent?

3. Determine Your Care Plan

As your dementia progresses, it’s likely that a move to residential memory care will eventually become a necessity. You should figure out now who you’d entrust with your care.

Arrange to tour Louisville memory care centers like Episcopal Church Home. Figure out which fulfill your lifestyle needs. Research which ones deliver the safe, dignified, person-centered care you deserve. Find out which communities meet your budget and / or are covered under your insurance plan.

Then, share your preferences with your caregivers and family members. Make out an advanced directive and living will, and designate your medical and financial powers of attorney so that, should the time come when you are no longer able to express your wishes, they will be known and followed.

4. Attend to Your Financial Needs

Alzheimer’s can move quickly or slowly. There’s really no predicting it so, again, don’t wait around.

Consult with your financial planner. Make sure that your assets and income sources are optimized to carry you through your care needs. Make sure that you and your caregivers will have access to liquidity, should the need arise.

If you were already thinking about moving into a single-floor home, apartment or continuing care retirement community, you should begin that process, if your condition allows.

Finally, consult with your lawyer. Make out your financial will. If you want to set up a trust for yourself, your spouse, or your descendants, now’s the time to do so. Make sure your attorney is well-versed in estate planning and tax law; you don’t want any surprises on the back end.

Remember you’re not alone.

Yes, it’s going to be a trying time for you and your family. But many people with Alzheimer’s and other dementia disorders continue to live enriched, fulfilling lives long after their initial diagnosis.

Arrange your care team and determine your care plan. Get in touch with the Greater Kentucky/Southern Indiana chapter of the Alzheimer’s Association, which is an excellent, local resource for families dealing with a dementia diagnosis.

Don’t be afraid to reach out to your family, friends, neighbors, community and faith-based organizations for help. And don’t hesitate to talk with our memory care experts about the cutting edge memory loss therapies we offer here at Episcopal Church Home.

We’re here for you. And we want to help.