Caregivers

Regularly assessing the involvement of caregivers and their needs is key to supporting the health of the person with dementia. Collaborating with caregivers improves the quality of life and well-being of everyone.

Who is a Caregiver?

Caregivers are individuals who provide any type of support to another person. This may include emotional support, help with coordinating care, assistance with Activities of Daily Living (e.g. bathing, dressing), and or Instrumental Activities of Daily Living (e.g. grocery shopping, managing medications). Persons living with dementia may have more than one caregiver supporting their needs.

• Some other terms used for a caregiver are: care partner, informant, support person
  • A formal caregiver is someone typically paid and associated with an organization (e.g. nurse, social worker) who provides support with healthcare needs or functional tasks.
  • An informal caregiver may be a partner, relative, or friend who provides typically unpaid support with a broad range of healthcare needs or tasks.
• Individuals who provide support may not identify with the term “caregiver” and prefer a different term to describe their role, or no title at all

Caregivers vs. Healthcare Agents

It is important to distinguish between caregivers and healthcare agents or “Durable Power of Attorney (DPOA) for Health Care”. Healthcare agents are named in an advance directive, which is a legal document that grants the agent legal authority to make healthcare decisions on behalf of the patient if they cannot speak for themselves. Caregivers may or may not be the same person as a healthcare agent.

People may also have a "DPOA for Finances", or other designated agents for specific functions, such as a Representative Payee for their social security benefits.

Documenting all of these representatives in the person's medical chart is important.

Tools to help you

Consider implementing templates or SmartPhrases in your medical record to quick document information about a patient's caregivers on a regular basis.

For Advance Care Planning support, there are excellent resources at Dementia Care Aware in the Medical-Legal resources section.  They review resources for helping patients and caregivers, such as:

• Prepareforyourcare.org to prepare an Advance Directive and establish a DPOA for Health Care
• Planforclarity.org for helping you identify social, legal and financial planning needs, e.g. a DPOA for Finances, and resources to address them

Caregivers as Partners in Care Teams, which provides education for health care teams on how to work with caregivers, created a tool that can guide you through an assessment of someone's caregiver support. 

Check out our Resources page for more tools.