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People with Parkinson’s, along with their care partners and families, often want a way to gauge how much their Parkinson’s has progressed. This desire tends to grow as Parkinson’s advances and challenges become more complex. Understanding where you are in the progression of Parkinson’s can provide clarity, guide treatment decisions, and help you plan for the future. It can also play a key role in determining eligibility for disability benefits or other government support programs, as well as when you and your family might need to consider long-term or out-of-home care.
Everyone’s experience with Parkinson’s is unique, and so is everyone’s experience with its progression. This makes it difficult to define “advanced Parkinson’s.” Nonetheless, having an idea of what the later stages of Parkinson’s may look like for you can help you make informed choices, access the right resources, and stay focused on what matters most: living well today.
Advanced Parkinson’s is often defined as the stage when the condition significantly impacts a person’s ability to manage daily activities independently. These activities include ADLs (activities of daily living) like standing, moving around the home, getting dressed, eating, and bathing, as well as IADLs (instrumental activities of daily living) such as cooking, cleaning, doing laundry, and paying bills. Challenges with both ADLs and IADLs can signal progression and indicate a greater need for support.
Other indicators that can help identify when Parkinson’s is reaching advanced stages include:
Increasingly troublesome motor fluctuations and increased OFF times, which can not only lower your quality of life but increase your risk of falls and hospitalizations.
More disruptive autonomic symptoms, such as swallowing difficulties, slowed gastric emptying, severe constipation, urinary dysfunction, orthostatic hypotension, and more.
The onset of dementia and/or psychosis, including confusion, disorientation, hallucinations, and delusions.
Life with advanced Parkinson’s presents many challenges, both for the person with Parkinson’s and their loved ones. The good news is that around the world, researchers, people with Parkinson’s, and care partners are making strides to address the most difficult aspects of the condition. Progress is unfolding, and there are real reasons for hope. There are also numerous ways to manage symptoms of advanced Parkinson’s. You can find many of these strategies on this page, along with additional resources to explore.
There are also many steps you can take, starting today, to enhance your quality of life as Parkinson’s progresses. Here are a few to consider:
Continue to prioritize holistic, preventive measures like regular exercise, healthy eating, socializing, and engaging in activities that bring you joy.
Keep moving but adapt as needed. Exercise is key to living well with Parkinson’s in any stage, and this doesn’t change as Parkinson’s advances. However, it’s important to adapt your routine to stay safe. A physical therapist can help modify your exercise program to prevent injury and ensure you get the most benefits. They can also teach you techniques to improve balance and gait, reducing your risk of falls as Parkinson’s progresses.
Assess and make changes to your care team as needed. After you have been living with Parkinson’s for several years, you may need to add new specialists to your team to address evolving symptoms. Having a network of providers who understand your unique experience with Parkinson’s and can offer support as challenges arise is invaluable.
Pay close attention and inform your care team of any new or changing symptoms, as well as any differences in how your medications help manage those symptoms. Additionally, encourage your care partner to share any observations with you and your providers, as they may notice changes that you haven’t.
Palliative care is more than just hospice care; it focuses on the whole person, offering support to manage the physical, emotional, and practical challenges of a serious diagnosis.
Talk with an occupational therapist as early as possible to make sure your home environment is safe. Occupational therapists can also help you modify your daily activities to stay as independent as possible for as long as possible.
Practice swallowing and breathing exercises and seek out a speech-language pathologistif swallowing, speech, or breathing become troublesome.
Be prepared for possible hospitalizations, and ensure your advance directive is in place.
Finally, remember that one of the most important things you can do to live well as Parkinson’s progresses is to seek support and stay connected. It can make all the difference in how you navigate the challenges and celebrate the wins.
Three of the most common cognitive symptoms of Parkinson’s are mild cognitive impairment (MCI), Parkinson’s disease dementia (PDD), and Parkinson’s disease psychosis (PDP). As Parkinson’s progresses, you may face one or more of these symptoms, and they may become increasingly challenging.
Mild cognitive impairment does not typically interfere with daily tasks, whereas Parkinson’s dementia often does. If you develop PDD, it may cause you to forget to take your medication or even to eat regularly. You may also experience visual disturbances and impaired executive function. People with PDD often also experience apathy, anxiety, and depression. On the other hand, Parkinson’s psychosis is typically marked by prominent, recurring hallucinations, delusions, and illusions.
For many people with Parkinson’s, PDD or PDP symptoms typically emerge 10-15 years after a Parkinson’s diagnosis, though people with young onset Parkinson’s often experience them later. In contrast, those diagnosed at an older age, or those with prominent bradykinesia, rigidity, and balance issues, may develop dementia or PDP earlier.
Because these symptoms can be particularly distressing for both people with Parkinson’s and their families, we want to shine a light on them here and provide resources to help you anticipate and manage them effectively.
Living well with Parkinson’s starts with connection. Our Ambassadors understand life with Parkinson’s and are here to talk, share resources, and offer support. With over 130 Ambassadors across the U.S. and beyond, you’re never far from someone who gets it.
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