Overview of Legal Considerations for Family Caregivers of an Aging Loved One

Laura Herman, Dementia and Eldercare Professional
Added: 04.14.2022
13 minutes read

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. 

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.

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. 

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. 

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).

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

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. 

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   

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. 

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.

Caregiver Discrimination

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

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

The Family Caregiver’s Legal To-Do List

Work your way through this to-do list sooner rather than later to avoid unnecessary bumps and headaches along the way.

  • Both a “Power of attorney for healthcare” and a “general durable power of attorney” are in place. (If not possible or appropriate, a Guardianship / Conservatorship should be in place).
  • Advance directive documents are complete and up-to-date with current wishes.
  • Will and other estate planning documents are complete and up-to-date.
  • The person managing your loved one’s Social Security or veterans benefits has proper authorization to do so.
  • Any payments to private or family caregivers are backed by personal care agreements and proper documentation.
  • HIPAA releases are filed with each of your loved one’s healthcare providers.