How Caregivers Can Advocate for Older Loved Ones

If your loved one has received a diagnosis that requires extensive care, it’s inevitable that various health care systems, from their primary care provider to specialists who assist with disease-specific treatments. And while it can feel empowering to have experts on your loved one’s care team, if you have concerns about the quality of care your loved one is receiving or the way they’re being treated by the staff that works with them, it can also make you feel powerless. If something feels off, who do you turn to for help?

In these moments, effective advocacy can make the difference between feeling powerless and ensuring your loved one receives quality, compassionate care.

Know Your Loved One’s Rights

Every patient, regardless of age, has basic rights in the health care system. These include the right to:

Be treated with dignity and respect
Receive clear information about diagnoses, treatments and risks in language they understand
Give or withhold consent for procedures and medications
Access their own medical records

If your loved one is unable to make decisions on their own, you may be able to act on their behalf. To do this legally, you’ll need documentation such as a health care power of attorney, an advance directive naming you as the decision-maker. Having these forms prepared in advance helps avoid confusion and delays during a crisis.

However, even if you don’t have formal authority, you can still share important background information with providers and ask questions to clarify what’s happening.

Understanding the Role of Ombudsmen

Many caregivers aren’t aware of a powerful ally available to them: the Long-Term Care Ombudsman. Ombudsmen are trained advocates who work to protect the rights of residents in nursing homes, assisted living facilities and other long-term care settings.

Here’s what they can do:

Investigate complaints about care, safety, or residents’ rights
Help resolve issues with staff or administration
Educate residents and families about their rights and options
Provide information on choosing or moving between facilities

Ombudsmen are independent, meaning they don’t work for the facility or for a regulatory agency. Their services are also free. Every state has a Long-Term Care Ombudsman program, often housed within the state’s Area Agency on Aging.

If your loved one is experiencing poor care or you simply want to know their rights before a problem arises, reaching out to your local ombudsman can provide valuable guidance.

Know Your Authority and Limits

Even with a health care power of attorney, your authority generally begins only when your loved one can’t make decisions themselves. When they are capable, you’re still an important advocate, but must respect their choices. Encourage your loved one to speak for themselves as much as possible; step in when they need help understanding complex information or communicating their wishes.

If disagreements arise between you and medical staff, request a care conference with all parties present. Many hospitals and facilities also have patient advocates or social workers on staff who can mediate concerns and coordinate care.

Protecting Yourself as a Caregiver

Advocating for someone else can be emotionally taxing. To stay effective, remember to:

Keep copies of any legal documents granting you decision-making authority.
Maintain clear communication with family members to avoid misunderstandings.
Seek out caregiver support groups for advice and encouragement.

Moving from being overwhelmed to being empowered

The health care system may be complex, but you don’t have to face it alone. By understanding your loved one’s rights and using resources like ombudsmen, you can move from feeling overwhelmed to feeling empowered. Advocacy isn’t just about speaking up when something goes wrong; it’s about ensuring your loved one’s voice is heard, their dignity upheld and their well-being supported every step of the way.