Investigators: Veronica Bruno
In October 2022 we launched the Advanced Care Team for Parkinson's (ACT-PD) pilot program. The primary goal of ACT-PD is to provide earlier access to multidisciplinary advanced care in Parkinson’s disease and related disorders (PDRD) while offering personalized support to both patients and their care partners.
The ACT-PD program operates on a clinical research model. We aim to provide comprehensive care that addresses the diverse needs of patients and caregivers while also generating valuable research insights to support further advancements in PDRD.
Participation in the ACT-PD program involves scheduled visits every three months and follow-up phone calls one and six weeks after each visit, ensuring a clear understanding of the team's recommendations and offering continuous support. To facilitate communication, patients and care partners have direct access to a dedicated phone line and email for any emerging concerns or questions. Currently, the program operates one full day each week at the location of the Movement Disorders program. This schedule allows for dedicated time and resources to be allocated to the comprehensive care and assistance provided to patients and their care partners within the ACT-PD program.
During the two-hour visits, the ACT-PD team assists patients with various concerns. This includes managing their symptoms effectively, establishing personalized goals for their care, addressing emotional well-being, and supporting their care partners. The team strives to offer the best available treatments for physical and non-physical symptoms while aiding patients in planning and providing spiritual support. Mental health assessments are conducted, and counselling sessions are tailored to meet the specific needs of patients and caregivers. Furthermore, the ACT-PD team is crucial in connecting patients with community resources, such as home care services, speech therapy, and financial assistance.
From a research perspective, our primary objective is to demonstrate that this comprehensive and integrated approach to care can significantly enhance the overall experience of patients and care partners, thereby improving their quality of life. Additionally, we are committed to ensuring that everyone involved receives education and support regarding advanced care planning, thus ensuring that their wishes are fully expressed and respected.