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Navigating the Paperwork for Dementia

Last updated: October 2022

Your loved one is starting to have symptoms of dementia or maybe just received a diagnosis. What do you do now? Caregivers are often tasked with getting the legal and financial jumble of paperwork in order for their loved one.

It is painful but important to be reminded that dementia is a terminal illness. And because this is a degenerative disease, time is of the essence when preparing for some of your loved one's affairs.

Having end-of-life conversations now will allow your loved one to express their wishes, preventing many headaches down the road. There is a lot of peace in knowing that your loved one's wishes will be clearly spelled out and protected.

Note: I am not a legal expert, and laws vary by state. Make sure to consult a licensed attorney in your area.

Navigating the paperwork for dementia

Get started as early as possible.

A few years before Mom's diagnosis, we lost my dad suddenly and unexpectedly. Paperwork-wise, we hadn't been ready, and it was a logistical nightmare. When my mom was diagnosed with mild cognitive impairment, I knew this time I'd make sure all the I's were dotted, and T's were crossed.

It was not easy. Many times I found myself banging my head against the proverbial wall, saying to myself, "I have a college degree and still cannot understand this." Where was the step-by-step guide for dummies?

We pushed through and got it done. Later, when the Alzheimer's was progressing, we were so relieved we hadn't waited.

Let’s talk about capacity

Getting your loved one's paperwork in order early can have legal benefits as well. If your loved one signs a document after a diagnosis, it may hold less weight in court. This is because a judge must consider capacity and competency in such situations.

Legal capacity means a person can understand the consequences of their actions and can make rational decisions. The Alzheimer's Association says if a person with dementia can understand the meaning and importance of a legal document, then in most cases, they have the legal capacity to sign it.1

Legal capacity and Alzheimer's

A person with Alzheimer's or related dementias can have the legal capacity even into the moderate stages of the disease.

Patients with dementia cannot be assumed to have impaired capacity. Even a patient with moderate or severe dementia, with obviously impaired capacity, may still be able to indicate a choice and show some understanding.2

For example, the authors suggest a person with dementia can still have the capacity to manage finances, give informed consent, and/or have the ability to drive.2

Capacity and competency

As a caregiver, I want my mom to be a part of all the decisions related to her care and affairs. By doing paperwork early on, you can avoid the pitfalls that might arise in court.

Competency is a legal determination made by a judge in court. If someone is declared "legally incompetent" by a judge, that means the judge determines the person isn't able to understand the consequences of their decisions. They lack legal capacity.2

Decision-making ability can then be removed from the person with dementia. If there is no durable power of attorney in place, the person can be placed in the care of a guardian. (More on the power of attorney and guardianship in a future article.)

If your loved one has already been diagnosed and the paperwork is not yet in order, don't panic. It can be more complicated to set up paperwork later in the disease, but it's not always a deal-breaker. Consult an elder care attorney.

You can do this

It is never easy to talk about these kinds of decisions. And it's even more difficult to attend to all the details - navigating the paperwork for dementia.

Even so, I am grateful my mom got to be a part of the decision-making for her care. You can do this too! Hang in there, and you'll get through it.

This is the first part of a series. Stay tuned for Part II about putting together a team of professionals to help you with the paperwork. 

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AlzheimersDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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