Patient

Patient & Family/Caregiver Resources

It is important for patients to ask questions about their care and to advocate for their needs. The resources below may help you work with the healthcare system and receive the best care possible. You can also utilize a Patient Advocate, Ombudsman, or Patient Representative who may be able to help you in working with healthcare professionals or to assist you in learning more about the issues that matter to you.

AGS CoCare®: HELP

The American Geriatrics Society Hospital Elder Life Program (AGS CoCare®: HELP) can be found in hospitals around the world. This program focuses on assisting hospitalized older patients.  The main goal of AGS CoCare®: HELP is to provide older persons in the hospital with the best care possible. AGS CoCare®: HELP staff and volunteers work to:

  • Make sure older patients are oriented to their surroundings
  • Assist patients in meeting their needs for nutrition, fluids, and sleep
  • Keep patients moving during their hospital stay

Does your local hospital have an AGS CoCare®: HELP program? Ask your healthcare provider today!

Delirium Guide Brochure

This brochure is a guide to delirium for patients, family members, and caregivers and provides information on topics such as delirium symptoms, tips for reducing the risk of delirium, and caring for a loved one who is delirious. 

Talking with your doctor: A guide for older people

Communicating well with your doctor is an important part of getting good medical care. These articles and worksheets can help you prepare for a medical appointment, discuss sensitive topics, manage your medications, choose a new doctor, and coordinate help from family caregivers. This site includes a number of helpful resources to be better prepared for your medical visits.

Hospitalization Happens: A Guide to Hospital Visits for Individuals with Memory Loss

“A trip to the hospital can be stressful for people with Alzheimer’s disease or another dementia and their caregivers. Being prepared for emergency and planned hospital visits can relieve some of that stress. This article suggests ways to help you prepare and tips for making your visit to the emergency room or hospital easier (NIH).”

Delirium Guide Brochure

This brochure is a guide to delirium for patients, family members, and caregivers and provides information on topics such as delirium symptoms, tips for reducing the risk of delirium, and caring for a loved one who is delirious. 

Family Education: Delirium Care after Discharge:

  • Family Guide for Navigating ED
    • While in the ED and throughout a potential hospital stay it is important for you to communicate your observations and information about your loved one or family member to the medical team. The information you provide is essential for doctors and nurses to quickly identify the best course of treatment with the ultimate goal getting your loved one back home as soon as possible. View this guide for some helpful tips.
  • Navigating a Hospital Stay
    • Most patients and their loved ones experience a wide range of emotions when confronted with a hospital stay: fear, confusion, anxiety. When a loved one does not have the capacity to make decisions on his or her own, the burden is shifted to the caregiver: a double whammy. Even more emotions come into play: doubt, guilt and heightened uncertainty about doing the right thing on behalf of another person. This guide by Sara Merwin, MPH, author of “The Informed Patient: A Complete Guide to a Hospital Stay,” 2018. Available at: https://thecaregiverspace.org/navigating-a-hospital-stay-a-guide-for-caregivers-and-patients-with-cognitive-loss/ is a helpful tool to address many challenges that may arise while in the hospital.
  • Going to the hospital: Tips for Dementia caregivers
    • This resource, ‘Going to the Hospital: Tips for Dementia Caregivers’ from the National Institute on Aging may serve as a guide to hospital visits for individuals with memory loss.  A trip to the hospital for someone suffering from memory loss or dementia can be very stressful for both the patient and family members. Use this resource to learn about tips for making your loved one’s hospital visit more comfortable.

How to be an effective advocate for aging parents:

  • Be prepared to go home checklist
    •  Use this checklist created by the Agency for Healthcare Research and Quality (ARHQ) to see what information you still need as you or your family member prepare to go home. If you cannot check a box, use the questions listed to ask your doctor or nurse about the information you need.
  • Patient Advocate Foundation:
    • Patient Advocate Foundation: A national 501 (c)(3) non-profit charity that provides direct services to patients with chronic, life threatening and debilitating diseases to help access care and treatment recommended by their doctor.

Finding a Geriatric Healthcare Professional

If you suspect that your loved one is experiencing a delirious episode, it is important to obtain an evaluation from a trained medical professional who has experience in geriatrics. Locating a geriatrician, geriatric psychiatrist, or neurologist will be essential to diagnosing and treating the delirium.

Many hospitals have a geriatrician on staff or have a gerontology or geriatrics department. You can call your local hospital or search on the hospital website to see if these specialists are available. 

You can also search several local and national agencies for information on finding a geriatrician in your area:

Understanding Delirium:

Raising awareness about delirium: Advocacy

Useful links for Advocacy:

The Department of Health and Human Services Administration on Aging has a comprehensive list of organizations and resources on a variety of topics including advocacy for issues on aging, Alzheimer’s disease, elder rights, caregiving and long-term care.

If you would like to advocate for more resources for older persons, contact your congress person or local representative to advocate for research and funds to be dedicated towards caring for older persons. Click here to find your member of congress.