Title picture showing essential estate planning documentsYour loved one has received a dementia diagnosis. Does he/she have his/her essential documents in place?

Not sure your loved one has a will? Do you know how he/she wants to be treated when it comes to end-of-life decisions so that you know what to do when that happens?

Who has your loved one designated to handle their financial affairs when they become unable to handle themselves?

In this post, I’m going to tell you the 4 documents that your loved one should have in place after a diagnosis of dementia.

What to do after a Dementia Diagnosis

The first suggestion that I have for you as a caregiver is to make sure all the important essential documents of your loved one are CURRENT.

As soon as you have any inkling, and I mean ANY thought, that your loved one’s cognitive abilities are failing, I would strongly suggest you make appointments with the proper people. Now, ASAP, Pronto, Vamanos, Skiddadle, Git, Go!

If your loved one doesn’t even have them set up – NO TIME LIKE THE PRESENT!

Ideally, in a perfect world, this would already be done and we wouldn’t have anything to worry about. However, we all know that we aren’t perfect! In fact, we tend to put off things that have to do with our own death and dying. The statistics on the infographic show that not many people are prepared.

In a Caring.com 2020 study, 47.9% of the respondents, age 55 and up, indicated they have a will. And in a study by Merrill Lynch/New Age, 18% of that same age group respondents have a will, an advance healthcare directive and a durable power of attorney set up. You can refer to that study using the link below.

how to approach the topic of estate planning

So, okay….if your loved one is one of those who doesn’t have an estate plan in place, how do you bring up the subject so you can get this process going? With empathy and understanding.

Rather than being direct and asking your loved one straight out about death and dying decisions, approach it in a roundabout way and be creative. For example, you could say, “Remember how we heard that Aretha Franklin and Prince died without having wills?” Then you could say that you’ve been thinking about setting one up and casually add in something like – “What about you, (insert your loved one’s name), what would you like us (me) to do with your things?” Hopefully, they’ll take the bait and run with it. If not, subtly probe again or try it a different day.

If you would like more guidance on this, you can check out this book, The Complete Eldercare Planner by Joy Loverde or this one, The Parent Care Conversation by Dan Taylor. Both books are dated but you can still use them to figure out how to approach the subject matter with your loved one.  

If your loved one isn’t one to talk about such personal things, suggest they jot down some notes on paper.

infographic showing the findings of an estate planning and wills survey

Who They Should Meet With

You want to get your loved one’s wishes formalized with an estate planning attorney. Take those notes and share with the attorney.

While you’re at it, your loved one should meet with a few other people too, like a financial planner and the insurance agent to update plans and beneficiary information. If there’s a business involved, then a visit to an accountant is wise, as well.

Do you know if your loved one is already registered as an organ donor? Some states have organ donor labels right on the driver’s license. If not, has your loved one thought about being an organ donor? That may necessitate other forms. You should check with your state whether forms are needed. Something else to keep in the back of your mind – you can start at this site if there’s any mention of donating the brain towards furthering Alzheimer’s research.

It’s a good thing that my brothers and I had my mom (you can read her story here) meet with an attorney. Her essential documents needed to be updated. She had to change the beneficiary information and name a new executor since my dad had passed away by that point. 

Pin image showing a living will with the title what to do after a demential diagnosis

suggested documents

They may go by different names but these are the most commonly suggested essential documents to have in place:

  • Will

  • Living Will/Advance Health Care Directive/Advance Medical Directive

  • Durable Power of Attorney for Health Care/Health Care POA

  • Durable Financial Power of Attorney

Another document that may or may not be needed is a Do Not Resuscitate Order document. This one is for whether or not CPR should be initiated if heart beat or breathing stops.

(Disclaimer: I am not a lawyer. The information included here provides general information and is intended for informational purposes only. This information is not meant to substitute any professional law, tax or financial advice. Always consult your own legal counsel for any such matters related to yourself.)


If/When your loved one goes into assisted living or memory care unit they will ask you what the DNR code your loved one has decided upon. I got hit with that question when I moved my mom into the memory care unit. Not sure of her decision I had to go home and check her documents. Then I relayed the info to the nursing home.

Hospitals will want to know this as well. Let me tell you from experience – the first time Mom ended up in the hospital with a broken bone, I had to give them the information. The 2nd time she broke another bone, they didn’t have to ask, it was already on file, because I had taken the paperwork out to the hospital to have them copy it.

I would highly suggest that once the legal paperwork is complete, you take the paperwork to the hospital. Go to whatever office you need to and have them copy the necessary papers for their file. That is one less worry during a time that is already stressful.

Another suggestion – in my community we have a building that is a gathering place for people age 50 and up. This facility often has hour long sessions regarding many different topics. If they have sessions on planning your estate, go to those. Learn as much as you can. Usually they have packets of information you can take with you for reference.

Law offices that specialize in estate planning will often have evening informational sessions. Search for those online or check with your local library. Often they will host those sessions.

If your loved one with dementia is the sole titleholder to a vehicle you may want to consider making some changes, sooner rather than later. Down the road if, or when, it becomes time to take away the keys, it may be easier to make other arrangements if another name is added to the car title. Please check with an attorney regarding whether or not this would be necessary or whether a POA would suffice.

Safe Keeping

The original documents will be kept at the law office. You will get copies. I would scan them into a secure file for yourself if you are the authorized representative or named as the POA. The hard copies I would keep in a fire-proof safe or some secure location that you have ready access to. These are not documents that you want in a safe deposit box at a bank as there may be difficulty getting ready access to them.

One More Time

Again, to reiterate strongly, do not delay in getting your loved one’s essential documents created or updated after a diagnosis of dementia. When the time comes that those are needed, you will have peace of mind knowing that all the difficult decisions at that point in life have been addressed. There will be much less stress, worry and concern on your end and you will be glad that time was taken to get them in place.

Oh yeah, one more thing …..

While you’re working on your loved one’s documents – set up yours as well. No time like the present!!

Reply and let me know in the comment section below what other suggestions you think someone should take after a diagnosis of dementia.