March 2016
Dementia Patients and the Healthcare System; What You Should Know


A family member of a patient with dementia contacted the Pennsylvania Patient Safety Authority and described several “near miss” patient safety events in which hospital staff obtained incorrect information from the patient, unaware of the patient’s dementia diagnosis. Pennsylvania healthcare facilities reported 3,710 events to the Authority from January 2005 through December 2014 involving patients with dementia or potentially unrecognized dementia. The following information will help family members of dementia patients know what to look for when choosing a healthcare facility for their loved one with dementia. 

Analysis of Pennsylvania Data

Analysts reviewing the reports from Pennsylvania healthcare facilities found 63 events similar to one reported by the family member  of a patient with dementia, in which hospital staff obtained incorrect information or consent from dementia patients. Five common mistakes on the part of the healthcare provider occurred throughout these events. They include: 1) failure to recognize preexisting dementia; 2) failure to assess the ability of patients with dementia to make decisions; 3) failure to identify a person who could provide correct information or make decisions for dementia patients; 4) failure to contact a caregiver  or decision maker when information or consent  was needed; and 5) failure to communicate the patient’s dementia diagnosis, and decision-making ability with all members of the healthcare team.

Of the 3,710 events involving patients with dementia, falls were the most frequently reported event type (n=1,710, 46.1%), followed by impaired skin integrity (bed sores or other wounds) (n=958, 25.8%). The majority of events were reported as Incidents without harm to patients (n=3,194, 86.1%).

Dementia and Dementia Due to Alzheimer's Disease: Know the Difference

According to the American Psychiatric Association, the following criteria must be present to establish a diagnosis of dementia (i.e. major neurocognitive disorder) and dementia due to Alzheimer's disease.

  • Significant problems are seen in one or more of the following mental functions: memory and learning, ability to focus and pay  attention, communication and language, and visual perception.
  • These problems make it impossible for the individual to carry out everyday activities by themselves, such as paying bills and managing medications.
  • Changes in mental function happen slowly over time and are not caused by delirium (a temporary state of confusion) or better explained by another mental disorder.
Dementia due to Alzheimer's Disease
  • Signs and symptoms of dementia are present AND Alzheimer's disease is identified from family history or genetic testing.
  • Problems are seen in memory and learning and at least one other mental function.
  • Mental function declines steadily over time, without long periods of time where no changes are happening.
  • These problems are not better explained by other medical or psychiatric causes such as stroke, substance abuse or other mental disorders.
What You As a Family Member of a Dementia Patient Can Do:
  • Make sure you (or someone you designate) accompany your loved one with dementia to all of their appointments.
  • If your loved one with dementia must go into the hospital, make sure the healthcare facility understands you are the decision maker for your loved one with dementia.
  • Make sure every healthcare provider who attends to your loved one with dementia while in the hospital knows the patient has dementia. Do not assume because you told one healthcare provider that all healthcare providers who care for your loved one know he/she has dementia.
  • Tell your loved one’s healthcare provider of any additional information that may be helpful (i.e. my loved one with dementia is very intelligent and therefore may answer questions he/she should not be answering because of their condition).
  • Make sure you ask questions and verify information for your loved one with dementia.
  • If there are any others who the healthcare facility should contact in regard to your loved one’s care, make them aware of who that person(s) is and make sure the healthcare facility has all contact information.
  • Make sure all family members or other decision makers are engaged in developing a plan of care for the patient with dementia.
  • Know that all family members or decision makers may be asked to verify information for the patient with dementia, especially if they are with the patient in the hospital.
  • Find out what your healthcare facility has to offer for dementia patients and their loved ones.
  • Make sure as family members and decision makers that you are educated about dementia, including signs and symptoms and problems commonly faced in the healthcare setting.
  • Make sure you are aware of any other resources that may be available to support dementia patients and their loved ones who care for them.
  • Form partnerships with dementia support groups, such as the local chapter of the Alzheimer’s Association, to identify resources and educational materials available.
  • Speak up if you have a problem in a healthcare facility with the care of your loved one with dementia. Give the facility an opportunity to correct the problem.
  • Make sure the healthcare provider of your loved one with dementia understands what the patient’s advanced care directive states in regard to do not resuscitate orders and a living will.

For more information about dementia patients and using the healthcare system, go to the March 2016 Patient Safety Advisory article, “Family Members Advocate for Improved Identification of Patients with Dementia in the Acute Care Setting.”  For general information about the Pennsylvania Patient Safety Authority, visit the Authority's website at  

©2018 Pennsylvania Patient Safety Authority