What Caregivers Need to Know About Estate Planning for a Loved One with Dementia

Author

Entrusted Legacy Law

For more information about the author, click to view their website: Entrusted Legacy Law

Posted on

Jan 11, 2024

Book/Edition

Pennsylvania - Greater Pittsburgh Area

Caring for a loved one with dementia is a challenge that millions of families undertake each year. As a caregiver, understanding how a dementia diagnosis affects your loved one’s legal decision-making is crucial to ensuring their wishes are honored and that you are providing them with the best possible care.

In this blog, we'll explore the importance of estate planning, even after a dementia diagnosis, as the best method to ensure the wishes and rights of your loved one are protected.


Understanding Incapacity

Dementia is a progressive condition that affects memory, cognition, and daily functioning. As dementia causes your loved one's cognitive abilities to decline, there may come a time when they are no longer able to make sound decisions about their finances, healthcare, and overall well-being. 

When the effects of dementia make it difficult for a person to understand information and make sound decisions, that person is considered to be incapacitated, which means they can no longer legally make healthcare or financial decisions for themselves. This change in their memory and cognition can be emotionally overwhelming for both your loved one and your whole family, and without proper planning, can require court involvement.

But, there’s still some good news. Thoughtful estate planning can ensure that your loved one is cared for by the people they know and trust if they can no longer care for themselves, and even if you’re loved one has already been diagnosed with dementia, it is still possible for them to create a legally-binding estate plan during the early stages of the disease.


Estate Planning In The Early Stages of Dementia

Every adult should create certain legal documents to protect their rights and wishes, and this is no different for a loved one with a dementia diagnosis. What is important to remember is that in order to create a legal document, you need to have mental capacity – meaning you need to be fully aware of what you are doing and what the consequences of your choices will be.

Thankfully, a person does not need to constantly be in a state of capacity to create an estate plan. As long as your loved one has the mental capacity at the moment they sign their estate plan documents, the documents will be valid, even if they regress into a state of incapacity afterward.

In the early stages of dementia, and ideally long before any health problems surface, your loved one should create the following estate planning documents:

General Durable Power of Attorney

A General Durable Power of Attorney (POA) is a legal tool that allows your loved one to appoint someone to make financial and legal decisions on their behalf. Their POA can write checks, pay bills, maintain their home, and manage their financial assets. 

This document becomes especially significant as dementia progresses. Encourage your loved one to designate a trusted individual as their Power of Attorney while they are still able to make such decisions. 

A Revocable Living Trust

A General Durable Power of Attorney is an important tool, but many financial institutions place constraints on the use of a POA or don’t acknowledge their authority at all. To make sure your loved one has complete protection of their financial wishes, encourage them to establish a Revocable Living Trust and move their assets into the name of the Trust. 

As part of creating a Trust, your loved one will name the person they want to manage their assets, called the Trustee. The Trustee and Power of Attorney are usually the same person, but not always. By having these two estate planning tools in place, you can rest assured that the people your loved one knows and loves will be able to manage their assets for them as their dementia progresses. 

Power of Attorney for Healthcare

Similar to a General Durable POA, a Power of Attorney for Healthcare (HPOA) appoints someone to make medical decisions on behalf of your loved one when they are unable to do so for themselves. Discussing and establishing a Healthcare Power of Attorney early on allows your loved one to express their medical preferences and ensures their wishes are honored. 

Their Power of Attorney for Healthcare should also include a Declaration to Physicians, also called a Living Will, that outlines their desires regarding medical treatment, life support, and end-of-life care. Creating a Declaration to Physicians and discussing their wishes with you ensures that their preferences regarding life-sustaining treatment, resuscitation, and other medical interventions are documented and respected.

Plan As Early As Possible

One of the most crucial steps in preparing for the challenges of dementia is to help your loved one complete their estate planning while they still have the capacity to do so. Waiting until the later stages of the disease can limit their options and increase stress for everyone involved. 

By addressing legal matters early on, you can ensure that your loved one's wishes are respected, and their affairs are managed.



As dementia progresses, estate planning must become more proactive and strategic than ever to avoid court and conflict over your loved one’s wishes in the future. If dementia becomes too advanced before planning is complete, the question of who will manage your loved one’s assets and care will be left to a judge who doesn’t know your loved one or their wishes.  Keep reading to learn what steps need to be considered when estate planning for someone with more advanced dementia.

Seek a Cognitive Evaluation

If your loved one’s cognitive capacity is in question, seeking a professional evaluation is a prudent and proactive step in the estate planning process. Schedule an appointment with your loved one's primary care physician or a specialist in dementia care to assess their mental state and make a recommendation on your loved one’s ability to make estate planning decisions.

During this evaluation, the medical professional will talk to your loved one and ask them questions about their everyday life, how aware they are of their circumstances, and what they would do in certain situations, such as if a stranger came to the door or if a pipe burst in their home. 

Your loved one doesn’t need to remember every detail about their life for the evaluation to be beneficial. The professional will be most concerned with your loved one’s ability to analyze a scenario and make a thoughtful decision on how to respond. For example, your loved one may not remember what day of the week it is but may remember they shouldn’t open the door for a stranger.

Receiving a report from your loved one’s doctor stating they have the cognitive ability to make estate planning decisions (at least when they are in a lucid state) protects their ability to make decisions for their finances and healthcare, and dissuades any future debate from third parties as to whether your loved one had the ability to make a plan in the first place.

Encourage Private Meetings Between Your Loved One and Their Lawyer

It may be second nature to help your loved one with appointments, especially if hearing and memory troubles make it difficult for your loved one to follow along. But as much as possible, allow your loved one to meet with their lawyer independently. A private meeting between your loved one and their lawyer will provide them with the opportunity to express their wishes without external influence. 

Even if you have your loved one’s best intentions at heart and they would prefer to have you present during the meetings, encouraging your loved one to have private conversations with their lawyer when possible helps avoid questions about whether or not you influenced their estate planning decisions.

If it isn’t feasible for your loved one to have an entire meeting with their lawyer alone, make sure they at least have opportunities to talk to their attorney in private by leaving the room while your attorney confirms their wishes.

Be sure to document every time your loved one meets alone with their lawyer and ask their lawyer to document it as well. 

Make Sure Their Estate Plan Is Executed Carefully

Unfortunately, errors that occur at the time an estate plan is signed are common. Every state has different laws for how estate planning documents are executed, how they can be signed, and what witnesses or notaries are required to make the document binding. 

If your loved one’s plan isn’t executed properly, it can result in your family needing to involve a judge to determine whether the estate plan is still valid. This also creates an opportunity for family members to question whether your loved one had the mental capacity to create the plan at all.

It’s also essential to document your loved one’s capacity at the time the estate plan documents are signed. Make sure that their lawyer reviews the documents carefully with your loved one before they sign them, that the documents reflect your loved one’s wishes, and that your loved one is creating the plan of their own free will.

If you have any concerns about other family members questioning your loved one’s estate planning decisions or mental state at the time, ask your loved one and their attorney if they could record the signing meeting to dispel any claims that your loved one was coerced into planning or didn’t know what they were signing. 

Conclusion

If your loved one received a dementia diagnosis and hasn’t addressed their legal matters, don't despair - but act fast. Even in the advanced stages of dementia, individuals may have moments when they can participate in decision-making and estate planning. But, due to the progressive nature of dementia, time is of the essence for your loved one to create an estate plan, and the sooner they plan, the easier it will be for them to get the help they need as their condition progresses.

In cases where your loved one’s capacity is severely diminished and estate planning hasn’t been completed, your family will need to pursue a court guardianship. This legal arrangement involves a court appointing a legal guardian who assumes responsibility for making decisions on behalf of the person with dementia. This process can be stressful, and it’s possible the court will appoint someone your loved one never would have wanted to manage their assets or healthcare decisions. 


Contact Entrusted Legacy Law at 412-347-1731 to schedule a complimentary 15-Minute call.

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Entrusted Legacy Law

Special Needs Trusts 100 Pinewood Lane Suite #303, Warrendale, Pennsylvania, 15086

Comprehensive Special Needs Estate Planning & Special Needs Trusts in PennsylvaniaEstate planning for families with special needs children presents a unique set of financial, legal, and healthcare challenges that require the expertise of a special needs planning attorney. Not all estate planning lawyers understand the intricacies involved, but the experienced special needs estate planning attorneys at Entrusted Legacy Law are dedicated to ensuring your child with special needs is fully protected when you are no longer able to serve as their primary caregiver.We provide a full range of estate planning services tailored to families with special needs children in Pennsylvania. Our goal is to help you preserve assets for your childs future care while ensuring they remain eligible for essential government benefits like Medicaid and Supplemental Security Income (SSI). We assist in setting up special needs trusts (SNTs) to safeguard financial resources, appointing legal guardians and trustees, and identifying long-term care options to ensure your child receives the best possible support and housing solutions.Special Needs Trusts & Asset ProtectionOne of the most significant challenges in special needs financial planning is ensuring that your child has adequate resources without jeopardizing their eligibility for public assistance programs. Many families unknowingly risk disqualifying their child from essential benefits by leaving them a direct financial inheritance. Instead, the best strategy is to establish a special needs trust to provide financial security while preserving their access to Medicaid, SSI, and other government assistance programs.A properly structured special needs trust allows funds to be used for supplemental expensessuch as medical care, therapy, education, and personal carewithout affecting eligibility for disability benefits. However, the regulations governing these trusts are complex. Funds must be managed by a designated trustee and cannot be distributed directly to the beneficiary, as this could trigger disqualification from public benefits. Additionally, a child's needs evolve over time, making it critical to have a trust that can adapt to changing circumstances and legal requirements.By working with an experienced Pennsylvania special needs attorney, you can ensure that your childs special needs trust is legally sound, structured correctly, and customized to their specific requirements.Special Needs Planning for Families in PennsylvaniaAt Entrusted Legacy Law, we specialize in estate planning for children with disabilities, including Down syndrome, autism, cerebral palsy, and other developmental or intellectual disabilities. Our firm helps families create a comprehensive life care plan that provides financial security while safeguarding access to government benefits and essential support services.Whether you need help establishing a special needs trust, securing a legal guardian, or planning for long-term care and housing, our Pennsylvania special needs planning attorneys are here to guide you through every step of the process.Contact Entrusted Legacy Law today to start creating a sustainable, secure future for your child with special needs.