Patient Safety and Caring for People Living with Alzheimer’s
Contact: Ilene Corina, (516) 579-4711 or firstname.lastname@example.org
In January 2016, a representative from Pulse Center for Patient Safety Education & Advocacy (formerly PULSE of NY) Patient Safety Advisory Council — now called The Healthcare Equality Project — visited five support groups held at the Alzheimer’s Disease Resource Center (ADRC) in Bayshore, Long Island. At these meetings she spoke to caregivers helping people living with Alzheimer’s disease. The mission of the ADRC is to support research that may lead to a cure for Alzheimer's disease, to provide care, support and education programs for families in need, and to be advocates for local families who are coping with Alzheimer’s disease and other dementias.
The PSAC was developed to reach Long Island’s diverse populations and
educate them in patient safety. Through a series of meetings and conversations
PSAC representatives identify some of the obstacles people face in receiving
safe, quality care. Then a report is created, leading to the development of tools
to help improve the care. The participants in these Alzheimer’s support meetings
were all extremely committed to their loved ones; thus the need for support and
information, which is given freely and at no charge by the ADRC staff. Each meeting
was opened with an introduction to Pulse and the concept of patient safety.
The participants were encouraged to discuss their experiences and suggest where improvements might be made to help their loved one receive safe, quality medical care. Many of the group had their loved ones living at home. Determined to keep their family member close by, the caregivers welcomed the support from each other and the sharing of information. The discussion of medical care triggered responses of frustration for many of the participants. One man spoke about his father who had bedsores and an infection: the son felt his father was not treated appropriately and with enough urgency. Because his father could not speak for himself, the son grew more frustrated at the lack of urgency in his father’s care. His father subsequently died, leading the son to believe that his death was due to lack of medical attention.
Others shared that a lack of patient communication about a serious matter was an obstacle. The importance of early conversations about advance directives was another topic discussed, and all agreed it would be helpful to have that discussion early in the onset of the disease if it has not been done earlier. Waiting too long can be too late. People living with Alzheimer’s and dementia may become easily frustrated and agitated. Each group had stories about being kept waiting to see a clinician and how it affected their family member’s behavior and their trust in a clinician who would run late with no explanation under these circumstances.
Participants were in agreement that a person with dementia should not be kept waiting in a doctor’s office.
Another reported topic was driving.
When someone who has Alzheimer’s or dementia accompanies a loved one to the hospital in an emergency, he or she needs to be watched carefully. In one case a husband who had dementia was with his wife who was receiving emergency room treatment. Left unattended, the husband wandered off, causing fear and agitation to the patient and a safety issue for the hospital. Family members who are caring for someone with dementia and may be brought to the hospital in an emergency could be wearing an ID bracelet or carry that information so in an emergency medical staff knows there may be someone waiting for them at home. All participants agreed that family should be available and on call for calming a patient in the hospital who has dementia. They know the patient best and should be involved in all care planning.
Thank you to Alzheimer’s Disease Resource Center, Bayshore NY http://www.adrcinc.org/
Pulse Center for Patient Safety Education and Advocacy (CPSEA) is dedicated to raising awareness about patient safety through education, advocacy, and support.
We envision a world in which the patient's voice is heard and no one is harmed by healthcare.