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Contrary to popular images, Parkinson's doesn't just affect older white men. Not only can it affect people of all ages and races, it also impacts their care partners, families and loved ones. Its symptoms also go far beyond tremor. Learn more about Parkinson's Disease
Parkinson’s disease is the leading cause of parkinsonism. Other causes include corticobasal degeneration (CBD), Lewy Body Dementia (LBD), multiple system atrophy (MSA), progressive supranuclear palsy (PSP) and vascular parkinsonism. People with these conditions frequently struggle to get an accurate diagnosis and adequate care.
Understanding the diverse challenges that individuals with Parkinson's disease and their families face is crucial. Beyond the physical aspects, they encounter a spectrum of unmet needs such as grief, spiritual distress, planning for the future, the necessity for caregiver support, and the importance of seamless care coordination. Addressing the full spectrum of needs is integral to fostering supportive and comprehensive care for those affected by Parkinson's.
A holistic approach to care focused on improving quality of life starting at diagnosis. It supports patients and families in managing challenging symptoms, difficult emotions, spiritual wellbeing, social connections and preparing for the future. Basic palliative care support can be provided by a wide-range of healthcare professionals while more complex and intensive support may require the input of palliative care specialists.
It's a misconception that palliative care is the same thing as hospice. Hospice is palliative care for people nearing the end of life and provides support to help people live at home in comfort and dignity. Importantly, people can receive other forms of palliative care from the time of diagnosis onwards depending on their needs.
The palliative care approach has something to offer people at every stage of illness . This can include getting help with difficult symptoms, preparing for the future, or improving coordination of care. Getting early palliative care can be thought of as similar to getting an umbrella before you need it (and before you get wet).
Palliative care is all about living as well as possible for as long as possible. It improves quality of life, offers support to family, provides relief from pain and other distressing symptoms, addresses psychosocial and spiritual issues, and affirms life and regards dying as a normal process.
Standard care for PD focuses on the motor symptoms of PD, and occasionally provides support for nonmotor symptoms. Palliative care provides complementary care to help with planning for the future, addressing nonmotor symptoms, supporting family carers, and promoting spiritual and emotional wellbeing.
No, palliative care is not exclusive to cancer patients. While it is often associated with cancer care, palliative services are beneficial for individuals dealing with a variety of serious illnesses such as heart failure, Parkinson's disease, dementia, and many others.
Throughout history, clinical trials have frequently overlooked the inclusion of individuals who truly reflected the most impacted groups by specific diseases, conditions, or behaviors. Instead, these trials heavily relied on white male participants receiving care at urban academic centers, leading to substantial knowledge gaps in our understanding of diseases, their preventive factors, and treatment efficacy across various populations.*
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A clinical trial is a type of clinical research that assesses the impact of interventions (medications, medical devices, surgical procedures, dietary regimens, behavioral techniques, and lifestyle adjustments) on biomedical or behavioral outcomes relevant to health.
Learn More*2021 Study: "Reporting of Participant Race, Sex, and Socioeconomic Status in Randomized Clinical Trials in General Medical Journals, 2015 vs 2019"
From exploring insights from partner organizations to accessing all our educational infographics for download, discover more on our Additional Resources page. Find valuable information and support to enhance your understanding of Parkinson's disease and its impact on the community.
