Rights and Responsibilities

Rights and Responsibilities of a Caregiver Advocate

Empowering Caregivers to Stand Strong for Their Loved Ones

When you step into the role of caregiver, you also become an advocate — someone who helps ensure your loved one’s medical, emotional, and legal needs are respected. Knowing your rights and responsibilities helps you protect your loved one’s best interests while maintaining healthy boundaries and confidence in your advocacy.

Your Rights as a Caregiver Advocate

As a caregiver, you have important rights that allow you to participate in your loved one’s care and protect their well-being.

1. Right to Be Informed

You have the right to clear, accurate information about your loved one’s medical condition, treatment options, and insurance coverage (as permitted under HIPAA or with proper authorization).

• You may request copies of medical records and test results.

• You can ask for explanations of diagnoses, side effects, and treatment risks/benefits in plain language.
  
  

2. Right to Participate in Care Decisions

With proper consent, you have the right to attend appointments, ask questions, and participate in care planning.

• You can request that your loved one’s preferences be respected in all care decisions.

• You may help coordinate care among multiple providers.
  
  

3. Right to Respect and Dignity

You have the right to be treated as an important part of the care team — with professionalism, respect, and courtesy.

• Healthcare providers should listen to your input and acknowledge your role.

• You should never be dismissed, ignored, or disrespected when advocating appropriately.
  
  

4. Right to Access Support and Resources

You have the right to request and receive help, including social work support, patient advocacy programs, community resources, or case management.

• You can seek caregiver support groups or counseling.

• You have the right to ask for accommodations if you have disabilities that affect your caregiving role.
  
  

5. Right to Appeal and Challenge Decisions

You have the right to appeal insurance denials, request reconsiderations, and challenge unfair coverage or care decisions on your loved one’s behalf.

• AKG Advocacy offers templates and guides to help with this process.
  
  

Your Responsibilities as a Caregiver Advocate

With these rights come responsibilities — not to carry every burden alone, but to ensure your advocacy remains ethical, informed, and effective.

1. Respect Privacy and Confidentiality

Always honor your loved one’s privacy under HIPAA.

• Discuss their information only with authorized parties.

• Use written consent forms to access records when needed.
  
  

2. Communicate Clearly and Professionally

Advocacy is most effective when it’s calm, factual, and persistent.

• Take notes during calls or appointments.

• Keep records of who you spoke to, when, and about what.

• Always maintain professionalism, even under stress.
  
  

3. Stay Organized

Keep copies of all medical documents, insurance letters, and communication logs.

• Use binders, folders, or digital trackers to stay on top of tasks.

• Note appeal deadlines and follow up regularly.
  
  

4. Empower — Don’t Override

Your job is to support your loved one’s autonomy, not replace it.

• Involve them in decisions whenever possible.

• Respect their choices, even when they differ from your own opinion.
  
  

5. Care for Yourself

You can’t be an effective advocate if you’re burned out or overwhelmed.

• Take breaks, ask for help, and accept support.

• Set healthy boundaries — advocacy is a marathon, not a sprint.
  
  

💬 Remember:

Being a caregiver advocate doesn’t mean you have to be perfect — it means showing up, speaking up, and standing firm when it matters most. AKG Advocacy is here to give you the knowledge, tools, and confidence you need to do just that.

Download our “Caregiver Advocate Toolkit” to learn how to organize paperwork, communicate with healthcare teams, and navigate insurance appeals effectively.