A Canadian Declaration of Family Caregiver Rights and Responsibilities

#NOTJUSTAVISITOR

Family caregivers— whether blood relations or friends of any age—are more than just visitors. We provide care and support to someone living with disease, disability or frailty due to aging. We are often the care recipient’s closest, holistic, and involved care partner. We deserve to be regarded as critical members of the health care team caring for our loved ones. As such, we maintain that we have the right to:

 

  1. Advocate for our family members to ensure they receive the best care possible.

  2. Access, be with, support, care for, comfort, and touch and hold our family members in whatever care settings they may find themselves.

  3. Timely and accurate information on our family member’s condition and circumstances.

  4. Ensure our family member receives any religious support or ritual, based on their religious and cultural beliefs.

  5. Be involved in a supportive role to help our family member decide on the care that is right for them.

  6. Access support and time off from caring to uphold our physical and mental health.

  7. Combine caring with paid employment.

  8. We recognize that we have the responsibility to minimize the risk of transmission of infectious diseases to others.

  9. Technology, equipment, and training required for us to exercise our rights that should be provided by health care providers, institutions, or governments.

  10. Hold health and social care system leaders accountable for their adherence to our rights and their support of our responsibilities.

 

We call upon everyone; responsible citizens, officers of government, and health and social care system decision-makers and providers everywhere to adopt and promote those rights and responsibilities designed to realize, maintain, and strengthen the role of family caregivers as an essential component of a caring and compassionate society.

What Can You Do?

If you are a family caregiver or concerned citizen 

  1.  Please sign the petition supporting this Declaration ;

  2. Contact your elected representatives, local, provincial and national, to advocate for the adoption of the rights in the Declaration. Reach out to health care authorities and managers of the institutions in which your family members are being cared for;

  3. Share your individual story of caregiving; it can inspire change.

If you are a Health care Provider or Organization

  1. Sign your organization on to support the Declaration. 

  2. Create a family caregiver policy, separate from a visitor policy, that respects the rights and responsibilities of this Declaration;

  3. Become a leader for change in your organization to support the implementation of this family caregiver policy;

  4. Make sure family caregivers are involved in providing feedback and direction to the program or organization through councils and other mechanisms.

If you are a Decision Maker or Elected Official

  1. Adopt the Declaration in the programs and organizations you lead or fund.

  2. Find ways to give voice to family caregivers to ensure they have representation at the decision-making councils.

  3. Implement a strategy that allows for grievances to be rapidly assessed and addressed (similar to role of Patient Ombudsman or the like).