Managing the late stages of Parkinson’s disease is challenging for people living with the condition and their caregivers. Parkinson’s is a progressive disease, which means it gets worse over time.

Understanding what to expect with end-stage or advanced disease can help people with Parkinson’s and the people who care for them prepare for what’s ahead. Knowing the likely challenges ahead can make it easier to plan, feel more confident, and find more comfort during this time.

1. Stages 4 and 5 of Parkinson’s Are Considered End-Stage or Advanced

Parkinson’s disease has five stages, which are based on how symptoms affect movement and daily life. The later stages of Parkinson’s are considered severe. Stages 4 and 5 may be referred to as advanced or end-stage disease.

Planning for the end of life can ease stress and provide some sense of control.

At stage 4, a person may no longer be able to eat or get dressed by themselves. By stage 5, they may need a wheelchair or be unable to get out of bed without help from others. Around-the-clock care is usually needed at this point.

2. People With End-Stage Parkinson’s Need Help With Daily Living

In the end stages of Parkinson’s, people often need help with all daily tasks. Everyday activities can become difficult due to severe motor (movement) and nonmotor symptoms, including:

• Tremors (shaking)
• Bradykinesia (slow movement)
• Stiff limbs or leg freezing that makes it very hard to stand or walk
• Balance problems
• Muscle spasms and cramps
• Dysphagia (difficulty swallowing)
• Dysarthria (difficulty speaking)
• Constipation
• Incontinence (trouble controlling bladder or bowels)
• Sleep disorders
• Low blood pressure
• Cognitive impairment (memory and thinking problems, including dementia)
• Mood disorders (depression or anxiety)
• Personality or behavioral changes (anger, irritability, or loss of impulse control)
• Hallucinations or delusions (seeing, hearing, or believing things that aren’t real)

3. Parkinson’s Treatments May Be Less Effective in Late Stages

As Parkinson’s disease progresses, symptoms often become harder to manage. Both motor and nonmotor symptoms worsen, and treatments that once helped may not work as well. Managing symptoms and providing palliative care — specialized medical care focused on quality of life during treatment — are important parts of treating end-stage Parkinson’s.

Adjusting Medications for Motor Symptoms

Over time, Parkinson’s treatments such as levodopa may become less effective, and the risk of side effects increases. Some people may not absorb the drug as well or may stop responding to it. This can lead to a “wearing-off” effect — when symptoms worsen before the next dose is due.

Hospice care focuses on improving quality of life as well as comfort — physically, emotionally, and spiritually.

Changing the timing or dose of medication can help minimize “off” time. For example, breaking levodopa doses into smaller but more frequent doses can help some people. Adding another medication to the treatment plan can also help reduce motor symptoms.

To help people with advanced Parkinson’s have fewer “off” times, the U.S. Food and Drug Administration (FDA) recently approved treatments like foslevodopa/foscarbidopa (Vyalev), a 24-hour under-the-skin levodopa infusion, and apomorphine hydrochloride (Onapgo), a wearable pump. These options are especially useful if swallowing pills is difficult or standard medications stop working well.

Treating Nonmotor Symptoms

Nonmotor symptoms of Parkinson’s can be just as challenging as movement symptoms. Depending on the issues you’re experiencing, your doctor can recommend treatments — some approved specifically for Parkinson’s-related symptoms like hallucinations and delusions, and others used more generally (such as for constipation).

All medications carry the risk of side effects. Some treatments for nonmotor symptoms, such as certain antipsychotic medications, can make motor symptoms of Parkinson’s worse. Your doctor can help you understand the risks and benefits of any treatments for nonmotor symptoms.

4. End-of-Life Planning Can Offer Control and Provide Clarity

When living with a serious, progressive condition such as Parkinson’s disease, planning for the end of life can ease stress and provide some sense of control.

Sharing your wishes through a living will (also called an advance directive), a durable power of attorney, or physician orders for life-sustaining treatment — can help loved ones make decisions that honor your preferences. Even simply having an honest conversation with your family or caregivers can make a meaningful difference.

If you’re unsure what choices would be best for you, discuss end-of-life care with your doctor or another healthcare professional. Some important decisions to consider include:

• Who will make healthcare decisions if you can’t speak for yourself
• Whether to receive treatments such as antibiotics, a feeding tube, or a breathing machine
• Whether to receive CPR, often specified in a do-not-resuscitate order
• Whether you want to donate your organs
• How you wish your burial to be handled

5. Hospice Care Supports People at the End of Life

Hospice care is designed for people who are expected to live six months or less and need full-time support. This may include people who are unable to perform activities of daily living, such as feeding, dressing, or grooming themselves.

Hospice care focuses on improving quality of life as well as comfort — physically, emotionally, and spiritually. Hospice care also eases the burden on caregivers, whose responsibilities can take a significant physical and emotional toll.

Hospice care can be provided at a hospice facility or at home with home health nursing. Although it can be difficult to think about, it’s helpful to look into your options early, before the final stage, and talk with your healthcare provider or a hospice organization about what’s available.

Costs associated with hospice may be covered by Medicare, Medicaid, or private insurance. Ask your healthcare provider or insurance carrier what services are included in your plan.

Hospice teams work closely with individuals and their families to develop a care plan that respects personal needs and values. The goal is to support dignity, reduce pain, and help families make the most of the time they have together.

Talk With Others Who Understand

MyParkinsonsTeam is the social network for people with Parkinson’s disease and their loved ones. On MyParkinsonsTeam, members come together to ask questions, give advice, and share their stories with others who understand life with Parkinson’s.

Are you or someone you care for living with end-stage Parkinson’s disease? What would you want others in your position to know? Share your experience in the comments below, or start a conversation by posting on your Activities page.