Persons living with dementia and their loved ones often face difficult healthcare and financial decisions. Early planning can help to ensure that persons living with dementia are part of the decision-making process and can share their wishes with their loved ones while they are able.
Various legal documents are available to allow a person living with dementia to ensure that their voice will be heard in healthcare and financial decision-making even when they are unable to participate themselves due to cognitive decline. Families are often grateful to have had conversations about the person with dementia’s wishes and to have prepared the necessary documents so that they know and can do what the person living with dementia wants.
What is an advance directive?
An advance directive is a general term for a legal document that a person uses to express their healthcare wishes should they become unable to communicate those wishes to others. Not only is an advance directive helpful for the person living with dementia to share their preferences with others, but it also provides some relief to loves ones, as they are able to make care decisions which align with those preferences.
There are two main kinds of healthcare advance directives: living wills and health care powers of attorney. People will often have a single document that includes both a living will and a health care power of attorney. Such a combination is more comprehensive and more flexible than either a living will or healthcare power of attorney alone. Living wills and health care powers of attorney are described in greater detail below.
What is a Living Will?
A living will is a document that allows a person to specify which medical treatments they would or would not want. While living wills can vary vastly, they may address:
- Cardiopulmonary resuscitation (CPR)
- Artificial nutrition and hydration
- Mechanical Ventilation
Often, the most important part of completing a living will is the conversation people have with their loved ones while completing it. While talking about end-of-life care may feel uncomfortable and overwhelming, it is an important opportunity for people to share their values and to talk about what they want. Having these discussions may prevent conflict among family members and lessen the emotional weight of decision making at a difficult time.
If you or a loved one is a patient at Penn Memory Center and you would like to speak with a social worker about care planning or facilitating a family meeting, please reach out to the social work team by contacting Leah Fein, MSW, at 267-240-5571 or leah.fein@pennmedicine.upenn.edu.
What are health care powers of attorney?
Health care powers of attorney are legal documents that allow a person to name an individual(s) to make medical decisions on their behalf should they be in a situation where they are unable to make decisions for themself. This individual is often referred to as a surrogate decision maker but may also be called the health care agent or health care proxy.
Many people choose a spouse, sibling, adult child, or friend as their surrogate decision maker. When deciding whom to designate as your surrogate decision maker, it may be helpful to consider the following:
- Would they be comfortable making decisions on your behalf, even if their personal wishes differ from yours?
- Would they be they capable of talking to and asking questions of medical providers?
- Are they able to stay calm in crisis?
- Would their emotional connection with you get in the way of making decisions on your behalf?
- Do you feel they understand your wishes?
You can find many living wills and healthcare power of attorney forms online. In preparing these forms, it is important to know the laws for your state. For more information, you can click the below link:
NHPCO: Get Your State’s Advance Directives
You may also consider asking your primary care doctor for a living will and healthcare power of attorney form, as many medical institutions have created their own. For example, Penn Medicine provides Our Care Wishes.
Once completed, a copy of these forms should be given to the surrogate decision maker, treating clinicians, family members, and others involved in care.
What is a DNR (Do Not Resuscitate) order?
A DNR order directs caregivers to avoid cardiopulmonary resuscitation (CPR) in the event that the patient is unresponsive and apneic (stops breathing), with or without a pulse. The DNR order addresses resuscitation interventions such as rescue breathing, chest compressions, and interventions to restart the heart such as administration of medications like epinephrine and defibrillation.
Notably, DNR orders take effect only if a patient experiences a cardiac or respiratory arrest. All other medically indicated treatment will be continued unless the patient—or the patient’s surrogate decision maker—decides to limit it. You can view a sample DNR form here.
What is a POLST form?
A Physician Orders for Life-Sustaining Treatment (POLST) form allows a person or their surrogate decision maker to indicate their end-of-life wishes. A POLST order is voluntary and must be signed by the person or their legal surrogate decision maker and their physician, physician assistant, or registered nurse practitioner. Once completed, a POLST form travels with the person across settings (e.g., home, nursing facilities, inpatient and outpatient settings). Unlike a DNR order, a POLST form should be honored by EMS. A POLST form is typically bright pink, and therefore easier to find so that a conversation about end-of-life wishes may occur faster. You can learn more and view a POLST form here.
Read more about the differences between a DNR and POLST form here.
What is a Power of Attorney (POA) For Finances?
A financial power of attorney is a legal document that grants a trusted person the power to make decisions about finances and property. A person can create a financial power of attorney which goes into effect immediately after it is signed or one that goes into effect only under certain circumstances, for example, when a person becomes unable to manage their own finances. While every power of attorney for finances is different depending on how it is written, the document may allow the trusted person to:
- Make changes to the person’s Medicare plan
- Manage the person’s finances and investments
- Become the person’s representative payee for social security
- Write checks
- Pay the person’s bills
- Plan financially for long-term care
When deciding whom to designate as your financial power of attorney it may be helpful to consider the following:
- Would they be comfortable making decisions on your behalf, even if their personal wishes differ from yours?
- Do you trust this person with your financial affairs?
- How do they manage their own financial responsibilities?
- Are they aware of your unique financial situation?
- Are they good at making decisions under pressure?
- Are they agreeable to taking on this role?
What is a Will?
A will is a legal document that helps coordinate the distribution of a person’s assets as well as appoint guardians for their children, if applicable, after death. The will allows a person to name an executor (I.e., the person who will manage the estate) and the beneficiaries (I.e., the people who will receive the estate).
What is a Living Trust?
A living trust is similar to a will in that a person can name beneficiaries for their estate. However, if properly executed, the trust will enable the beneficiaries to avoid probate. A living trust is a legal document that allows a person to designate themself or another person (the “trustee”) to manage their assets during their lifetime as well as distribute their assets after their death.
As everyone’s financial situation is unique, some people may choose to consult with an elder law attorney. You can search for elder law attorneys through the National Academy of Elder Law Attorneys.
*Disclaimer: This page is intended for informational purposes only. This is not legal or financial advice. Please speak with a lawyer if you have questions about your particular situation.
We recognize financial and legal planning for the future can be confusing. Check out an Association for Frontotemporal Dementia webinar where Penn Cognitive Neurology social worker, Cynthia Clyburn, LCSW, spoke about legal and financial planning with an elder care attorney. Webinar: FTD Care Planning with Essential Legal Documents | AFTD (theaftd.org)
Read more about financial and legal planning from the National Institute for Health (NIH): Legal, Financial Planning for Dementia or check out the NIH Legal and Financial Planning for People with Dementia Website, which describes legal planning in more detail.