Caregiver resources

When we think caregiver, we often think of someone who takes care of a disabled relative and acts almost like a home nurse while also taking care of finances, cooking, and cleaning. That is one definition; however, being a caregiver can mean a lot of things. A caregiver can do one or all of the following (or many other things not in the list below):

  • Provide support and encouragement.
  • Drive someone to appointments.
  • Attend appointments and help someone make treatment decisions.
  • Help someone to understand their rights.
  • Listen when someone is struggling with symptoms or the recovery process.
  • Make legal or financial decisions on someone’s behalf.
  • Help someone get accommodations at work or school.
  • Run errands or help with household chores.
  • Be there to manage crisis situations.

Caregivers can be parents, relatives, friends, partners, adult children, neighbors, grandparents, or individuals who have some other kind of relationship to the person living with a health condition.

General Caregiver Resources

As a caregiver, the focus of attention is often on the one being cared for. It is also important to take care of the caregiver and help him/her connect to resources for information and support. Below are links to resources that may benefit caregivers.

  • The Caregiver's Handbook - This resource is published by the National Institute on Aging and has the basics of caregiver related information. There is also information for kinship caregivers. The PDF is free to download and share. 
  • Family Caregiver Toolbox - Published by the Caregiver Action Network, this tool provides information for caregivers at all stages of the caregiving (the beginner to the experienced looking at planning for next steps). The other thing this site offers is a chat component where caregivers can get support. There is also a section for more disease specific information.
  • Next Step in Care - This is a general information site that resources for the caregiver and healthcare providers to assist transition navigation. Transitions are moves between care settings, for example, hospital to home or rehab facility, or the start or end of home care agency services. This site provides resources to help caregivers and providers avoid miscommunication and prevent errors by understanding each other better. Within the site are resources for the healthcare provider/professional and the family caregiver
  • Financial planning for caregivers - Being a caregiver can be expensive. This site provides information about the legal documents needed and what the financial pitfalls could be. 
  • National Alliance for Caregivers - This organization has links to multiple resources and organizations about caregiving. If one of the above does not have what you are looking for, chances are you will find it here.

Disease-specific Resources

Sometimes, general information is not enough and caregivers need more disease-specific resources. Below are some examples of disease-specific caregiver information sites. Often with some of the conditions below the caregiving and caregiver needs do change.

  • Alzheimer's and dementia -  Caring for those with Alzheimer's or dementia is challenging. The Alzheimer's Association provides some resource information specific to these caregivers. 
  • Cancer Caregivers - This too is an area where the needs of the individual needing care can vary. This page provides both general information and some info for specific cancers. It also talks about the treatment needs of cancer and a caregiver's role. Information here is published by the National Cancer Institute. Another helpful caregiver resource is through the American Cancer Society
  • Circle of Care - A Guidebook for Mental Health Caregivers - Published by NAMI partnered with the National Alliance for Caregiving (NAC), this guidebook provide resources and information to help  friends, family and neighbors who care for an adult with a mental health condition. The guidebook is made up of fact sheets to assist caregivers with finding help for the specific challenges that were identified by mental health caregivers from across the US who participated in the first national study on mental health caregiving, the On Pins and Needles study. There is information about legal issues, future planning, treatment support, and much more.
  • Stroke support American Stroke Association provides resources for caregivers about the day-to-day, home modifications and more.