Ensuring Dignity and Respect:
Legal Documents for Individuals Living with Dementia

Dementia is a progressive condition that not only affects cognitive abilities but also impacts decision-making capacities. As the disease progresses, individuals may be unable to express their wishes or make sound judgments about their care and affairs. In such circumstances, having the appropriate legal documents in place becomes crucial to ensure their wishes are respected and decisions are made in their best interests.

The following essential legal documents would benefit any adult, but they are especially important to help individuals with dementia plan for their future care and empower trusted individuals to make decisions on their behalf.

Standard Will (Last Will and Testament)

A standard will is a legal document that specifies how you want your assets distributed after your death. It allows you to name beneficiaries for your property, appoint an executor to handle your estate, name guardians for minor children, and specify any other wishes you have for your estate. A standard will only takes effect after your death.

Living Trust

A living trust, also known as a revocable trust, is a legal entity you create during your lifetime to hold your assets. You transfer ownership of your assets to the trust, and you can act as the trustee, maintaining control over the assets. Upon your death or incapacitation, a successor trustee that you appointed takes over management of the trust, distributing assets according to your instructions without the need for probate court involvement. Living trusts can provide more privacy and control over asset distribution compared to a standard will, and they can also help avoid probate, potentially saving time and money.

Advance Directive (Living Will)

An advance directive, also known as a living will, is a legal document allowing individuals to specify their preferences for medical treatment and end-of-life care. This document provides guidance to healthcare professionals and family members about the individual’s preferences when they are no longer able to communicate them effectively.

For someone with dementia, an advance directive is vital to outline their wishes regarding what types of medical treatments they do or do not want in certain situations, such as life-sustaining measures like CPR, ventilator support, or artificial nutrition and hydration. An advance directive does not appoint someone to make decisions for you—it guides medical professionals and your healthcare agent (if you have one) in making decisions consistent with your wishes.

Durable Power of Attorney for Healthcare

A durable power of attorney for healthcare appoints a trusted person, known as a healthcare proxy or agent, to make medical decisions on behalf of the individual with dementia when they are unable to do so themselves. The appointed agent should be someone who understands the individual’s values, beliefs, and preferences regarding healthcare. This document ensures that healthcare decisions align with the individual’s wishes and best interests, even as their cognitive abilities decline.

Durable Power of Attorney for Finances

Managing financial affairs can become increasingly challenging for individuals with dementia. A durable power of attorney for finances authorizes a trusted individual, referred to as an attorney-in-fact or financial agent, to manage the person’s financial matters, including paying bills, managing investments, and making financial decisions. This document helps safeguard the individual’s assets, ensures ongoing financial stability, and prevents financial exploitation or mismanagement.

Guardianship or Conservatorship

In cases where an individual with dementia has not appointed a power of attorney, and there are concerns about their ability to make decisions or manage their affairs, seeking guardianship or conservatorship may be necessary. Guardianship involves a court appointing a legal guardian to make personal and healthcare decisions, while conservatorship involves managing the individual’s finances. These legal arrangements provide oversight and protection for individuals who are no longer capable of managing their own affairs.

Portable Medical Orders (POLST)

Portable medical orders, often referred to as Physician Orders for Life-Sustaining Treatment (POLST) or Medical Orders for Scope of Treatment (MOST), are documents that outline a patient’s preferences for medical treatment in the event of a medical emergency or serious illness. These orders are typically created for patients who have advanced illnesses or are nearing the end of life.

The purpose of portable medical orders is to ensure that a patient’s wishes regarding their medical care are honored across different healthcare settings, including hospitals, nursing homes, and home care. Unlike advance directives, which are typically broader in scope and focus on general healthcare preferences, portable medical orders provide specific instructions about the types of medical interventions a patient does or does not want, such as resuscitation, intubation, or artificial nutrition.

These orders are often written by healthcare providers in consultation with patients and their families and are designed to be easily understandable by all members of the healthcare team. They are usually printed on brightly colored paper to make them stand out in a patient’s medical record and can be quickly referenced in emergency situations.

Planning for the Future

It’s crucial to engage in future planning discussions early on and regularly review and update the documents as needed to reflect changing preferences and circumstances. By having the appropriate legal documents in place, individuals with dementia can maintain autonomy, dignity, and quality of life throughout the progression of the disease.

Consulting with a legal professional is advisable when creating any of these documents to ensure they meet your specific needs and comply with relevant laws. By taking proactive steps to address legal matters, individuals with dementia and their families can navigate the challenges of the disease with greater confidence and peace of mind.