Legal Considerations for Family Caregivers: Navigating the Complexities of Aging Care


In this overview, we’ll introduce you to the top legal topics essential for family caregivers of aging loved ones to understand. We’ll also leave you with a list of legal to-do’s to work through.

HIPAA Privacy and Medical Information

The HIPAA Privacy Act prevents healthcare professionals from sharing medical information without a patient’s consent. It does not affect your ability to share information about your loved one with their doctor, or other people as you see fit.

If your loved one’s medical power of attorney names you as their representative or agent, you’re legally entitled to their health information. If your loved one is can’t give consent, and there’s no legal representative or guardian available, a healthcare provider may or may not provide you with information about their condition.

Read more: 10 Things to Know About HIPAA & Access to a Relative’s Health Information

Power of Attorney

A power of attorney (POA) document allows your loved one to name a representative or “agent” to make decisions or act on their behalf.

Your loved one should have two power of attorney documents:

  • A power of attorney for healthcare
  • A durable general power of attorney (for financial and all other non-healthcare purposes)

Note that the exact names of these documents may vary a little from state to state.

A POA must be completed by your loved one themself when they are still able to understand what they are doing – you can’t “get” one for them after an accident, change in health, or decline in cognition.

Your loved one will retain the final say over their agent in all matters. Even if they’re making poor decisions they have the right to override your wishes.

If your loved one is incapable of managing their own affairs and they don’t have a power of attorney – or they have a POA but are making poor choices – you’ll need to petition the court for guardianship or conservatorship.

Read more: Understanding the Limitations of a Power of Attorney: What You Can – and Can’t – Do with a POA

Guardianship vs. Conservatorship

The terms “guardian” and “conservator” have slightly different definitions in different states, which can be confusing. We’re referring to a person appointed by the court to have the authority to make decisions for – and an obligation to take care of – a person (and/or their finances and assets) who has been deemed legally incompetent to do so themselves.

It’s much quicker, easier, and less expensive to use a power of attorney if possible – if not, a guardianship/conservatorship is the way to go.

Guardians and conservators have a long list of legal responsibilities (like keeping in close contact with the court) that last for the rest of their ward’s life. Be sure you fully understand what you’re getting into before accepting this position.

Professional guardians are also available.

Read more: Guardian, Conservator or Power of Attorney: Which Do I Need, and How Do I Set It Up?

Advance Directives

“Advance directive” is an umbrella term that encompasses various written documents that describe a person’s wishes for future medical treatment in case they become unable to speak or make decisions for themselves.

In addition to a power of attorney, other common advance directive documents include:

  • Living will: advance directive document that addresses wishes for care at the end of life.
  • Do Not Resuscitate (DNR): Sometimes called an Allow Natural Death (AND) document, a DNR is a doctor’s order directing emergency responders and other healthcare professionals to not start cardiopulmonary resuscitation (CPR) if your loved one’s heart should stop.

Enacting Advance Directives

Some types of advance directive forms – like a DNR – are medical orders which must be signed by a doctor. Other forms can be completed on your own, however, it’s a good idea to discuss these decisions with a doctor, geriatric care manager, or another person familiar with end-of-life matters.

The American Bar Association’s Tool Kit for Health Care Advance Planning is a helpful guide to selecting the right health care agent, communicating wishes about care, and having these vital conversations.

Advance directive documents vary from state to state. Your state’s basic advance directives are available from the state health department, your local Area Agency on Aging, and many health care providers. You can also download them online from Prepare for free.

Read more: Advance Care Planning: Health Care Directives | National Institute on Aging

Estate Planning

Estate planning is the process in which a person describes what they want to happen to their money, property, and other assets – their “estate” – after they die. In many cases, estate planning also entails burial arrangements. Wills and trusts are two key pieces of estate planning.

Wills: Individuals with small, uncomplicated estates generally do fine with just a will. Without a will, state laws decide how to distribute the assets. Wills can and should be updated periodically, however they can’t easily be altered if your loved one is mentally incapacitated.

Trusts: Trusts are more involved than wills, and they provide greater control over how assets are distributed. They make more sense for larger, more complicated estates.

There are multiple different types of wills and trusts for different situations.

In most cases, it’s necessary to consult with an elder law attorney for estate planning. Individuals with very simple estates and wishes might get away with online do-it-yourself estate planning programs – although even then it's recommended an attorney reviews it briefly before signing. If you opt for a DIY site, look for one that includes a consultation with an attorney as part of an estate planning package (like LegalZoom or RocketLawyer).

Read more: How Caregivers Can Manage Wills and Trusts

Hiring a Private Caregiver

Many families prefer to hire caregivers through home care agencies. It’s much simpler because the agency handles the legalities as well as the recruiting, vetting, training, and scheduling of aides.

Some families instead opt for private caregivers because they prefer to have more control over the selection or management of the aide.

If you do choose to hire a private caregiver it’s important to realize that, as the employer, you have several legal obligations.

  • Labor laws
  • Payroll and taxes
  • Eligibility to work in the U.S.
  • Employment contract or personal care agreement

Read more: What to Consider When Hiring a Private Caregiver

Personal Care Agreements

A personal care agreement is a contract between a person who needs help and the caregiver providing it. It can prevent misunderstandings and many kinds of problems, including issues with Medicaid eligibility. Without a personal care agreement in place, Medicaid may rule that any payments were gifts and penalize your loved one if they apply.

Read more: Paying a Family Caregiver: Creating a Medicaid-Friendly Personal Care Agreement

Elder Abuse, Neglect, and Exploitation

Older adults can be very vulnerable to elder abuse, neglect, and exploitation. It’s shockingly widespread, affecting one in ten adults over 60. It’s vital that family caregivers are familiar with the basics of abuse and what to do if they spot possible signs of mistreatment in their loved one.

While the exact definitions vary from state to state, elder abuse generally falls under a few broad categories.

  • Physical abuse: willfully inflicting bodily harm or restraining an older person against their will
  • Sexual abuse: unwanted sexual interaction of any kind
  • Emotional abuse: words or actions that hurt, frighten, humiliate or distress an older adult
  • Neglect: a person who is obligated to care for an older adult fails to meet their needs for food, water, shelter, hygiene, medication, medical care, socialization, etc.
  • Self-neglect: a person fails to meet their own needs to the extent it threatens their health or safety
  • Exploitation (Financial abuse): taking advantage of an older person financially. This can include fraud, scams, or unauthorized/improper use of their money, belongings, or property.

Who to contact if you suspect abuse:

  • 911 / Emergency response if someone is in imminent danger
  • Local police if a theft, assault, or other crime may have been committed
  • Your local Adult Protective Services (APS) or reporting agency for suspicion of elder abuse, neglect, self-neglect, or exploitation
  • Elder law attorney for asset recovery, damage collection, guardianship, and other legal assistance

Read more: Elder Abuse, Neglect, and Exploitation

Read more: Elder Self-Neglect: A Hidden Hazard

Social Security or Veteran’s Benefits

Even with a power of attorney or guardianship, you won’t be able to manage your loved one’s social security benefits unless you’re designated as their representative payee. Read more: Social Security

If you need to manage your loved one’s veteran’s benefits you’ll need to be appointed as their VA fiduciary to do so. Read more: Veterans Affairs

Employee Rights

61% of family caregivers are employed in addition to their caregiving responsibilities. It’s important to be aware of your legal protection and employee benefits available to support you.

Family Medical Leave Act

The Family Medical Leave Act (FMLA) is a federal program that protects a caregiver’s position for up to 12 weeks when taking care of a loved one. Smaller employers aren’t required to offer it – although some do anyway – and not every employee is eligible. In some cases, you can take the time off intermittently, rather than in one continuous block.

Read more: Family and Medical Leave Act | US Department of Labor

Paid Family Leave

Seven states – California, Connecticut, Massachusetts, New York, New Jersey, Rhode Island, Washington – and Washington D.C. now offer paid leave for family caregivers. Oregon and Colorado have also enacted measures that will take effect by 2024.

Read more: What States Offer Paid Family Leave for Caregivers?

Caregiver Discrimination

If you believe your employer is treating you unfairly based on your caregiving obligations you could be experiencing family responsibilities discrimination (FRD).

Learn more: What is Caregiver Discrimination? (video)

Elder Law Attorneys

Attorneys who specialize in areas common to older adults and their family caregivers are called elder law (or elder care) attorneys. Different elder law attorneys specialize in different areas.

Examples of elder law specialties include:

  • Advance care planning
  • Social security and disability claims or appeals
  • Conservatorships and guardianships
  • Elder abuse
  • Estate planning
  • Medicaid planning

You can find elder law attorneys in your area on your Olera dashboard.

Read more: Elder Law Attorneys

Read more: Where to Find Legal Help When You Can’t Afford an Elder Law Attorney

Author Bio

Laura Herman is an elder and dementia care professional who advocates for better senior care in America. This article has been reviewed by TJ Falohun, co-founder and CEO of Olera. He is a trained biomedical engineer and writes about the cost of healthcare in America for seniors.

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