Legal Priorities for Persons with Dementia

Legal Priorities for Persons with Dementia

INTRODUCTION

Often, when a person is diagnosed with dementia, the focus tends to be on the illness itself, treatments to slow down the inevitable progression of the disease, and even the everyday difficulties faced by both the person with dementia and their close family and friends. There is another aspect that needs to be given just as much importance as the illness itself. And that is the legal priorities for the person with dementia.

At first, to deal with the legalities associated with dementia, might seem rather a trivial matter in comparison to the weight and consequence of the illness. But when you take a deeper look, disregarding the need to handle such things can have a serious impact on both the patient and their loved ones throughout the progress of the dementia.

There are different options available. Everything from who and how to handle a dementia patient’s healthcare and assets to when and how long a legal statement can be held valid. Here, you can find information to help you sort through and get started on the legal options available for persons with dementia.

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ADVANCE HEALTH CARE DIRECTIVES

An Advance Health Care Directive (AHCD) is a legal document in which a person specifies what actions should be taken with regards to their health if they are no longer able to make those decisions for themselves due to illness or incapacity. In the United States, it has a legal status in itself.

The advance care planning process involves a series of discussions and recordings. It may take place over several weeks or months as there needs to be adequate communication between you, your doctor, and family members before putting your wishes on paper.

It only becomes effective under the circumstances delineated in the document, and allows you to do either or both of the following:

  • Appoint A Health Care Agent: The AHCD allows you to appoint a health care agent (also known as ‘Durable Power of Attorney for Health Care’, ‘Health Care Proxy’, or ‘attorney-in-fact’, who will have the legal authority to make health care decisions for you should you no longer be capable of speaking for yourself. Very often this role is given to the spouse, but it can also be given to another family member, a close friend, or anyone else who you feel will see that your wishes and expectations are met to their best of their abilities. The individual appointed will have the authority to make decisions regarding artificial nutrition and hydration and any other measures that prolong life—or not.
  • Prepare Instructions For Health Care: The AHCD allows you to prepare specific written instructions for your future health care decisions in the event that you can no longer speak for yourself. Also known as a ‘Living Will’, the document outlines for example, your wishes regarding life-sustaining medical treatment if you are terminally ill or permanently unconscious.

The Advance Health Care Directive provides a clear statement of wishes regarding your choice to prolong your life or to withhold or withdraw treatment. You can also choose to request relief from pain even if doing so hastens death. A standard advance directive form provides room to state additional wishes and directions. It also allows you to leave instructions concerning organ donations.

Most states do not require a particular form but do require the presence of witnesses or other specific signing formalities. Some official state forms may be worded to generally or include multiple choice options that may be too broad to guide decisions regarding the particular medical situation you may find yourself in, while other official state forms may be simpler and contain blank spaces for you to provide instructions. Anything that you write by yourself or with a computer software package should follow your state laws as well. So, it’s essential for you to know what the laws are in your state.Even if your state requires a specific form, doctors still have a legal obligation to respect your treatment wishes, regardless of the form you use.

Naming a health care proxy or agent does not take away any of your authority. You will always have the right, while you are still competent, to override the decision of your proxy or revoke the directive. However, it should be noted that if you do not name a proxy or agent, the likelihood of needing a court-appointed guardian grows greater, especially if there is disagreement regarding your treatment among your family members and doctors.

The content can be complex and should be thought through very carefully. It can also be short, simple statements about what you want or don’t want in case you are unable to speak for yourself. Regardless of how extensive the final document becomes, it is important to discuss your wishes with you family members, legal, health and other relevant professionals when preparing such a document. It is particularly important to talk with everyone who might be involved with your wishes because, in times of stress, some may confuse their own wishes with your wishes.

While you are not required to seek legal advice whenpreparing an advance health care directive, it may be a good idea to do so in order to ensure that the actual instructions for your wishes are stated as accurately as possible. It has to be absolutely clear in order to be enforceable.

Advance Health Care Directive forms

Advance Health Care Directive forms for your state are available via:

  • State healthcare association websites
  • Community and senior services organizations
  • Attorneys handling wills, estates, probate, and Elderlaw matters
  • Geriatric care managers
  • Hospitals or hospice programs

It is imperative to plan for a person’s eventual incompetence that comes with advanced dementia via appropriate legal documents, which may vary according to the state in which the person lives. The most common ones include:

  • Advance Directives: includes oral and written instructions regardinga person’s future medical care, including the naming of a healthcare agent and acceptable life-sustaining procedures, in the case where the person is unable to speak for themselves. It can be done in place of two separate documents: the living will and the durable power of attorney for healthcare (also referred to as healthcare power of attorney, healthcareproxy, and appointment of a healthcare agent).
  • Living Will: establishes a person’s wishes concerning end-of-life care, the use of life-support systems, and the treatments they do and do not want prescribed.
  • Durable Power of Attorney for Healthcare: assigns decision-making authority on medical matters to a particular person if a person is no longer competent to make those decisions.
  • Estate Will: Describes how a person’s assets and properties will be dealt with after their death.
  • Research Directives: establishes one’s participation in research studies and any conditions related to it.

In the last several years, a new advance directive has been developed specifically for individuals coping with Alzheimer’s or any other dementia. It allows them to document what their lives will be like when they are no longer competent. Known as the ‘Alzheimer’s Disease and Dementia Mental Health Advance Directive,’ it is legal in some states.

Its value, however, is not in its legality, but in its comprehensive look at life with dementia. Issues include where you will live, how to finance your care, changes in an intimate relationship, when to stop driving and how pets will be cared for. Filling it out can clearly outline your wishes and not have it substituted by another’s judgements and decisions. Even if it is not considered legal in your state, it can be used as a guideline for your loved ones to.

A two-page ‘Values Worksheet’ at the end of the six-page AD helps people think through their options. It can be filled out and shared with family, serve as a springboard for discussions, or work literally as a worksheet.

Once you have completed your advance directive, it may be necessary to have it notarized depending on who witnesses your signature—follow the instructions on the document in accordance with your state laws. Providing trusted individuals with copies of your advance directive will ensure that your health care wishes are met when in the situation where you eventually cannot express them yourself.

It’s best to think of Advance Health Care Directives as a work in progress. Circumstances can change, as can your values and opinions about how you would best like your future health care needs to be met. Directives can be revoked or replaced at any time as long as you are capable of making your own decisions. It is recommended that you review your documents every few years or after important life changes and revise your directives accordingly to ensure that they continue to accurately reflect your situation and wishes.

Re-examine your health care wishes every few years or whenever any of the following occur:

  • Decade – when you start each new decade of your life.
  • Death – whenever you experience the death of a loved one.
  • Divorce – when you experience a divorce or other major family change.
  • Diagnosis – when you are diagnosed with a serious health condition.
  • Decline – when you experience a significant decline or deterioration of an existing health condition, especially when it diminishes your ability to live independently.

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POWER OF ATTORNEY (POA)

A power of attorney document allows a person with dementia (called the principal) to name another individual (called an attorney-in-fact or agent), who is usually a trusted family member, domestic partner or friend, to make financial and other decisions on their behalf when they are no longer able to. The agent should be chosen carefully. It is recommended that this individual has a thorough conversation with the principal regarding what the responsibility entails. In addition, a successor agent or agents should be named in the event the original agent is unavailable or unwilling to serve.

With regards to individuals with dementia, power of attorney documents should be written so that they are ‘durable’. It means to have them valid even after the principal is incapacitated and can no longer make decisions.Since most power of attorney documents are written concerning this type of circumstance, most people elect to make their document durable.

A durable power of attorney is a type of advance directive, which is a written legal document that spells out a person’s wishes in a situation where they are unable to make decisions. Durable power of attorney allows another individual, usually a close friend or family member of the person with dementia, to make decisions on their behalf. This person may act in the best interests of the individual, making decisions about his finances, properties, and estate. Power of attorney must be established while the person is still of sound mind to make informed decisions. It must also be a durable power of attorney in order for the arrangement to be valid once the person no longer has sound mental capacity. The power of attorney may or may not include a right to make decisions on health care, as outlined in the agreement. Sometimes this document is also called a durable power of attorney for healthcare.

A power of attorney does not give the appointed person (agent) the authority to override the decisions made by the person with dementia (principal). The person with dementia maintains the right to make their own decisions—as long as they have the legal capacity to— even if the decisions are not what others may believe are good decisions.

The agent is authorized to manage and make decisions concerning the income and assets of the principal. This agent is responsible for acting according to the instructions, and in the best interests, of the principal.

One crucial thing to note is that the person who is the grantor of the power of attorney—in this case, the person with dementia—must be able to understand what they’re signing. This is to protect from instances of elder abuse, graft, and other crimes.

Sometimes, the power of attorney form is made to be ‘springing’, meaning it only goes into effect when the grantor can no longer demonstrate the ability to make these decisions. This means that the agent will only act on behalf of the grantor when their ability to make key financial and/or health care decisions is in question. A letter from a physician may be required stating that the person with dementia is still of sound mind and can understand the contents of the power of attorney at the time of signing in order to be considered valid.

If the person with dementia is no longer able to make their own decisions, they are considered legal unable to sign a power of attorney. In such a case, a close family member or loved one can choose to become a conservator. Conservators can act like a power of attorney agent, with the capability to make certain medical and financial decisions. However, to become a conservator takes time and sometimes involves costly court procedures. That said, if you’re looking to aid a person who cannot make decisions for themselves, this court procedure is likely worth the effort. It should be noted that this procedure can take up precious time and should be avoided if at all possible. Instead preparing ahead of time is less costly and probably agreeable to all parties.

In a situation where the dementia patient passes away, then the durable power of attorney is no longer considered valid and other estate planning documents such as a ‘Last Will and Testament, will take precedence.

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POWER OF ATTORNEY FOR HEALTH CARE – HEALTH CARE PROXY

A power of attorney for health care allows a person with dementia to name a health care agent to make decisions relating to their healthcare when they are no longer able to. This type of legal document is also called an ‘advance directive’.

Health decisions covered by such a power of attorney include:

  • Doctors and other health care providers
  • Types of treatments
  • Care facilities

For a person in the later stages of dementia, the health care agent also may make end-of-life decisions, such as providing nutrition through a feeding tube or giving ‘do not resuscitate’ (DNR) instructions to health care providers.

Therefore, it is important for the person with dementia to talk through their wishes regarding their health care with the chosen agent early on to make sure that the agent understands those wishes and is willing and able to act on their behalf. Once the legal documents are filled out, the individual with dementia, the agent, the caregiver or a trusted family member, the attorney, and the doctor should all have copies.

A living will is also a type of ‘advance directive’ that expresses how a physically or mentally incapacitated person wishes to be treated in certain medical situations. It is generally something that an individual prepares and signs prior to their deterioration. In a living will, the person with dementia may state, among other things, their wishes regarding artificial life support. It generally comes into effect once a doctor determines that a patient lacks the ability—often called the ‘capacity’—to make their own health care decisions. This can include situations where the patient is unable to:

  • Understand the nature and consequences of the health care choices that are available to them
  • Communicate their wishes for care, either orally, in writing, or through gestures.

Practically speaking, this means that if a person is so ill or injured that they cannot express their health care wishes in any way, the documents will spring into effect. If, however, there is some question with regards to the person’s ability to understand their treatment choices and communicate clearly, their doctor (with the input of their health care agent or close relatives) will decide whether it is time for your health care documents to become operative.

Depending on the state in which an individual resides, a specific form of a living will may be required or it may be drafted by the person's attorney.In some states, it is possible to give your health care agent the authority to manage your medical care immediately. If your state allows this option, you may prefer to make an immediately effective document so that your agent can step in to act for you at any time. This way, your doctor will not have to be involved on whether your health care document should take effect.

Making the document immediately effective does not give the agent the authority to override what you want in terms of treatment. You will always be able to dictate your own medical care if you have the ability to do so. Even when you are no longer capable of making your own decisions, your health care agent must always act in your best interests and diligently try to follow any health care wishes that you've expressed in your health care declaration or otherwise.

Your written wishes for health care remain effective for as long as you are alive unless one of the following scenarios occur:

  • You revoke your document
  • A court invalidates your document
  • A court revokes your agent's authority
  • Your death—generally, your health care documents are no longer necessary when you die. In some states, however, your health care directives remain effective after your death for some limited purposes. Your agent may be permitted to supervise the disposition of your body, including authorizing an autopsy or organ donation, unless you specifically withheld these powers when you made your health care documents.

In terms of preparing a power of attorney for health care, you will need to fill a form and follow these instructions:

  • Sign the form in front of a witness—refer the form for a list of acceptable witnesses.
  • Ask the witness to sign it as well.
  • There is no need to have the form notarized.
  • Give a copy of the document to your agent and to each of your successor agents.
  • Give a copy to your physician.
  • Keep a copy with you when you go to the hospital.

Show it to your family and friends and others who care for you.

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LIVING WILL

A living will is also a type of "advance directive" that expresses how a physically or mentally incapacitated person wishes to be treated in certain medical situations. It is generally something that an individual prepares and signs prior to their impairment. A living will is a set of written instructions that provides specific preferences about the kinds of medical treatment they do or do not want to receive. However it does not designate an individual to make those medical decisions on the person’s behalf, but rather allows the person to communicate their wishes regarding their future care.

In a living will, the person with dementia may state, among other things, their wishes regarding artificial life support. A living will generally comes into play once a doctor declares a person as incapacitated and unable to communicate their desires regarding life-sustaining treatment. And depending on the state in which an individual resides, a specific form of a living will may be required, or it may be drafted by the person's attorney.

You can produce a living will in case as a precaution or even if you already have dementia, but are still able to make decisions for yourself. A living will can consist of both an Advance Decision and an Advance Statement. As you are the principal, it is up to you as to what to include in these documents. You can ensure that they align with your personal beliefs and wishes.

An Advance Statement is not legally binding but will give information to those who are caring for you about who you are. Through it, you can share your preferences, wishes, beliefs, and values for a time when you are not able to share them yourself. It will also put into context decisions made in your Advance Decision if you have one.

An Advance Decision on the other hand, is a legally binding document through which you can accept or refuse one or more types of treatment. It is a good idea to include as many possible future circumstances as you can in your Advance Decision, because a valid Advance Decision must:

  • State precisely what treatments are to be refused. A statement giving a general desire not to be treated as inadequate.
  • Set out the specific circumstances in which refusals should apply. It is, therefore, helpful to include as much detail as possible.

You should always talk to your physician regarding your Advance Decision. They will be able to help you plan it in detail and answer any questions you might have.

If you have been diagnosed with early dementia, you should consult a healthcare professional who is trained in assessing mental capacity. This could be your physician or a healthcare professional from either a memory clinic or associated with the clinic. You should also talk to your caregiver, family, and close friends to let them know about your Advance Decision. Discussing with them can give you a better idea of the items to include in the document.

Individuals can also specify if they want medical treatments to keep them alive, including feeding tubes and resuscitation. Living wills can also spell out an individual’s wishes regarding complicated medical decisions at a later time when there is disagreement or confusion among family members. However, it should be noted that having a living will does not guarantee that doctors, hospitals, or family members will follow an individual’s wishes.

A living will can be made by any person, aged 21 years and above, and is not mentally disordered. It is a form of legal document which must be completed and signed in the presence of two witnesses before it is legally acceptable. The patient's doctor must be one of the two witnesses, while the other witness must be at least 21 years old. In addition, both witnesses must not have any vested interests in the patient's death.

You should address a number of possible end-of-life care decisions in your living will. It is best to talk to your doctor if you have questions regarding any of these issues:

  • Resuscitation
  • Mechanical ventilation
  • Tube feeding
  • Dialysis
  • Antibiotics or antiviral medications
  • Comfort care (palliative care)
  • Organ and tissue donations for transplantation
  • Donating your body for scientific study

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STANDARD WILL

A standard will is a document identifying whom a person with dementia has chosen as:

  • Executor—the person who will manage the dementia patient’s estate.
  • Beneficiaries—the person(s) who will receive any portion(s) of the dementia patient’s assets in the estate.

The executor named in the will has no legal authority while the testator is still living. It will only come into effect when they have died.

A will cannot be used to communicate health care preferences as in a living will. However, it can provide instructions on post-death matters. The document must clearly state that it is a will and must be signed and dated by you (the testator). Two or three witnesses must also sign the will (the number depends on individual state laws).

The person drafting the will, or the testator, chooses an executor of their estate, who will carry out the will’s provisions through the probate process. The executor is responsible for gathering property, keeping financial records, and paying any outstanding debts and taxes after which the executor can distribute the deceased’s property to the beneficiaries as described in the will.

A will is a type of written or oral communication that dictates how you want your property and assets dispersed after your death. It lists the beneficiaries and the assets they are to receive respectively. The will also denotes a legal guardian for any dependent children.

While standard wills and living wills are both legal forms of communication which dictate your wishes should you become unable to speak for yourself, they are otherwise quite different. Below are some examples:

  • A living will is more medically related which, to some extent, also has a goal to help manage or control one’s assets.
  • A living will can also dictate whether you will donate your organs or not.
  • A standard will is more focused on the appropriate partitioning of one’s assets upon their death.
  • A living will takes effect before the death of the person while a standard will takes effect after the death of the person.

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LIVING TRUST

A living trust is a property interest created by an individual during their lifetime. It is similar to a standard will, where it spells out what the grantor’s desires are with regard to their assets, dependents, and heirs.

However, the major difference is that a standard will comes into effect only when the grantor dies and their will has entered into probate. A living trust bypasses the time-consuming and expensive process of probate, enabling a successor trustee(s) (who will fill the same role as an executor of a will) to carry out the grantor’s instructions as documented in the living trust at the time of death or if the grantor is unable to manage their financial, healthcare and legal affairs due to incapacity.

There are two types of living trusts:

  • Revocable Living Trust: the grantor’s assets are transferred into the ownership of the trust. However, the grantor retains control of those assets as the trustee of the revocable living trust. The grantor may change or revoke the trust at any time they may choose.
  • Irrevocable Living Trust: allows the grantor to permanently and irrevocably give away their assets during their lifetime. This means that they relinquish all control and interest in those assets.

Normally it take about two to three weeks after initial consultation to prepare the trust documents. Once they are signed, it is necessary to complete the funding documents that are used to transfer ownership of the assets to the trustee(s) of the trust. This process then can take anywhere between a few days to several months, depending on the number and the type of assets to be handled. However, these periods may be shortened in cases of an emergency.

The main document that needs to be completed is the living trust itself. Therefore, the first task to be done is to create the trust. There are forms available online that can help you with this. You can also opt to consult with an attorney. Thereafter, it is only a matter of getting the signatures notarized and starting the process of transferring the assets to the trust.

There is no need to file a living trust in a court or agency. The best thing to do is to keep it safe, in a fireproof safe, for example. The only people who need to know about it are the grantor and the beneficiaries.

Be sure to keep the following documentation easily accessible once the living will has been made:

  • Declarations of trust or trust agreements
  • Name of attorney or law firm that helped create the trust, if applicable
  • Bank accounts associated with the trust

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GUARDIANSHIP/CONSERVATORSHIP

A guardianship—or conservatorship—is the legal proceeding in a state court where a personis appointed to exercise some or all of the legal rights of the incapacitated or dementia-suffering person, also known as the ward.

Guardianship can and should be used when theward is no longer in a condition to make decisionsforthemselves. As soon as a court determines a person as incapacitated, this procedure may be implemented. It is active for as long as the person lives. Normally, the court will appoint the guardian/conservator who will exercise the legal rights of the ward. They will also define the terms and duration of this procedure, although usually,it is for as long as the person lives. Exceptions can be made in an extreme situation or if the ward’s rights are not being honored by the appointed guardian/conservator.

The amount of time taken for this process depends on the state. However, it is usually a rather short and simple procedure. In many states, permanent guardianship can be granted within a month if all goes well and there is no contest. Many states also have laws that allow temporary and emergency guardians in the event of a medical or financial emergency.

There is a form that needs to be completed before submitting the request to the court. It is advisable to seek the assistance of an attorney in order to ensure that the form is completed and to clarify any doubts that could arise. Once completed, the request may be filed and submitted to any court.

Estate Planning

Estate planning is the process of anticipating and arranging, during a person’s life, for management and disposal of their estate during their life and after their death. It includes planning for incapacity as well as a process of reducing or eliminating uncertainties over the administration of a probate and maximizing the values of the estate by reducing taxes and other expenses. Estate plans can be very simple or very complex. A complete estate plan should include documents covering both medical and financial wishes.

Estate planning should start with a will or a living trust. However, it is an ongoing process, since many thingscan change during a lifetime. However, when it has to be used, it will be permissible either one of these situations:

  • During the person’s lifetime—if they become incapacitated.
  • After the person’s death.

Once the necessary documents are prepared, estate planning is active for the rest of the involved person’s life. In normal situations, creating an estate plan can takes no longer than two or three weeks. Generally, it is not supposed to be an overwhelming process. And depending on the extent of the planning, all the completed documents may or may not have to be submitted to a court.

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END-OF-LIFE CHOICES

When a person with a degenerative brain disease—such as Alzheimer’s or other forms of dementia—nears the end of their life and is no longer able to make sound decisions, their family must make the necessary choices on the person’s behalf.

In an ideal scenario, the person with dementia would have put in place advanced directives that specify their wishes. If not, family members will have to make those decisions based on what they believe the person would have wanted. At the end of the day, all end-of-life-decisions should respect the person’s values and wishes and aim to maintain their comfort and dignity.

Some end-of-life decisions may include:

  • Advocating for care that is based on the expressed wishes of the person with
  • Refusing, starting, limiting, or ending medical treatments.
  • Facilitating care that focuses on comfort.
  • Arranging for a brain autopsy.

These decisions may be confirmed through some form of advanced directive, such as:

  • Living will
  • Durable power of attorney for healthcare
  • Estate planning

The most important thing is, as mentioned before, is to honor the person’s wishes above anyone else’s.

Funeral Planning

For someone suffering from dementia, to be able to make their funeral and burial plans can sometimes be an empowering process. It can help to reduce the stress of these arrangements for the family members during a difficult time.

Some of the decisions may include:

  • Burial or cremation?
  • Burial location or meaningful place that the person would identify as their final resting place
  • The type of funeral or memorial service
  • Location, flowers, and music
  • Burial plans and costs—there are pre-paid burial plans, in order to avoid the families absorbing the costs for the final arrangements.

Working With an Attorney – Elder Law Attorney

An elder law attorney is not an attorney for a particular situation. Rather they are an attorney for a particular type of person and they have to be comfortable with the different situations that may occur. Elder law attorneys must be knowledgeable in many areas of the law, including:

  • Guardianships
  • Long-term care planning
  • Advance health care directives
  • Powers of attorney
  • Estate planning
  • Probate and trust administration
  • Asset protection
  • Special needs trusts and planning
  • Elder abuse

Elder law attorneys tend to take a holistic approach to addressing their clients’ concerns by focusing on the problem to be solved and not one particular area of law.

Elder law is a relatively new legal practice area. It has only been around for about 25 years. Nowadays, there are about 400 attorneys throughout 48 states. To find one, you could visit www.nelf.org. You can also ask other attorneys, friends, or relatives for a referral to an elder law attorney. While not all elder law attorneys are certified, certification does not necessarily mean that a particular elder law attorney is more qualified than one who is not certified. It is simply another factor to take into account when searching for an attorney.

The costs of an elder law attorney may vary according to the experience of the attorney and their geographic location. For example, Boston lawyers with years of experience may charge $600 per hour, while a young attorney in Kansas may charge $125 per hour.

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WHERE TO GET ADVICE ON THESE ISSUES?

Issues relating to legal procedures are almost always overwhelming. However, nowadays with information being widely available online, it has become easier to sort through them and have a place to start. The internet is only a starting point for your planning. When you move forward in the process, it would be best to seek advice from a regular or elder law attorney and start as soon as possible. The same applies in situations where instead of yourself, it is your loved one who will need assistance on these matters.

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