Educational Program Development for Parkinson's Disease and Parkinson's Disease with Dementia Caregivers

Abstract

Introduction: Parkinson’s Disease (PD) is a neurodegenerative disorder causing a unique set of clinical manifestations. In the United States, approximately one million individuals live with PD suffering from mental, emotional, and physical complications. As PD progresses, hallucinations, memory impairment, and difficulties with decision making may be seen. Gradual deterioration in function is referred to as Parkinson’s Disease with Dementia [PDD/PLWPDD] and affects three-fourths of PLWPD. PDD manifestations differ from traditional PD resulting in additional care needs. Care competency in PDD and tailoring to the individual are required to achieve optimal outcomes.

Purpose: This project developed educational materials with strategies and resources for caregivers of PLWPDD. The aim was to provide education that improves care and expectations with PDD.

Methodology: Evidence from the literature provided most of the content and was supplemented with information from the Parkinson’s Foundation and Alzheimer’s Disease national agencies. Professionals and caregivers with experience with PLWPDD provided feedback, suggestions, and comments on the utility of the materials. An aesthetically pleasing, easy to read informational pamphlet was created and will be distributed in print and electronic formats to attendees at the research mentor’s grant events for caregivers in eastern NC. Caregivers’.

Conclusion: As the prevalence of dementia in Parkinson’s Disease diagnoses continue to increase, it is imperative that caregivers are equipped with knowledge and resources entailing effective and efficient means of care. Based on the literature, caregivers struggled with caring and reported a need for education including symptom management, expectations for changes in lifestyle, and ways to improve wellness and maintain strengths. This project meets a knowledge gap that may improve the future of patient care for the PLWPDD.