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 end-stage Parkinson’s disease looks like and whether end-stage Parkinson’s is painful can help you prepare for what’s ahead. Knowing the likely challenges can make it easier to plan for the future, feel more confident, and find more comfort during this time.

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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 stage disease.

Pain is common in advanced Parkinson’s disease and can significantly affect quality of life.

At stage 4, a person usually needs help with many daily tasks, such as dressing, bathing, and sometimes eating. 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. Advanced Parkinson’s Can Be Painful, but Discomfort Can Be Managed

Pain is common in advanced Parkinson’s disease and can significantly affect quality of life. While not everyone with end-stage Parkinson’s experiences severe pain, many people have some level of discomfort.

Common Sources of Pain in Advanced Parkinson’s

Different types of pain can occur in the late stages of Parkinson’s disease:

• Musculoskeletal pain — Rigidity, stiffness, and the tightening of muscles and tendons can cause pain in the muscles, joints, and bones. This type of pain often affects the back, arms, and neck.
• Neuropathic pain — Nerve-related pain can develop when nerves are inflamed or compressed, causing burning, tingling, or shooting sensations. Some common types of neuropathic pain in Parkinson’s include sciatica (nerve pain between the lower back down one leg) and peripheral neuropathy (nerve damage that causes numbness in the fingertips or toes).
• Dystonic pain — Involuntary muscle spasms and cramping can cause significant discomfort, especially in the hands, toes, and feet. Dystonic pain can also happen in the throat, neck, and face muscles.
• Central pain — Constant, vague pain occurs in roughly 10 percent of people with Parkinson’s. This pain can occur all over the body and may be difficult to describe.

Recognizing Pain When Communication Is Difficult

In advanced-stage Parkinson’s, pain may be hard to communicate due to speech loss, advanced dementia, or severe fatigue. Caregivers and loved ones should watch for nonverbal signs of discomfort such as:

• Facial grimaces or frowns
• Grunts, cries, or other vocalizations
• Restlessness
• Agitation or aggression
• Withdrawal or decreased social interactions
• Resistance to movement or care
• Increased muscle tension or guarding
• Refusal to eat

Body language and behavioral changes can be important indications that someone is experiencing pain.

Managing and Easing Pain

The good news is that pain in advanced Parkinson’s can often be managed or eased with appropriate care. Pain management strategies may include medications such as pain relievers and muscle relaxants, along with nonpharmacological approaches.

Some effective strategies for managing pain include the following:

• Medications like pain relievers and muscle relaxants can help reduce discomfort.
• Physical therapy with gentle exercises and stretching can help maintain flexibility and reduce musculoskeletal pain.
• Massage therapy may help relax tight muscles and ease pain.
• Treatments for mental health conditions like depression can help manage pain, as these conditions can worsen Parkinson’s symptoms.
• Palliative care support from specialists who focus on managing symptoms and improving comfort throughout the disease can improve quality of life.

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

Talk with your healthcare team about pain management options. They can work with you to develop a personalized plan that addresses your specific sources of discomfort.

3. People With Advanced Parkinson’s Need Help With Daily Living

In the advanced 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 (difficulty having bowel movements)
• 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)
• Pain in the joints and muscles

4. 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 — are important parts of treating advanced Parkinson’s disease.

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.

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 stages of Parkinson’s have fewer “off” times, the U.S. Food and Drug Administration (FDA) recently approved treatments like foscarbidopa/foslevodopa (Vyalev), a 24-hour subcutaneous (under-the-skin) levodopa infusion, and apomorphine hydrochloride (Onapgo), a wearable device. 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 treatment options — some approved specifically for Parkinson’s-related symptoms like hallucinations and delusions, and others used more generally (such as for constipation).

Pain management is an important part of treating nonmotor symptoms in advanced Parkinson’s. Your healthcare team can help find the right combination of medications and therapies to keep you comfortable.

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.

5. 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 members or caregivers can make a meaningful difference.

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

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
• What your preferences are for pain management and comfort care so your loved ones understand how you want any discomfort to be addressed

6. Hospice Care Supports People at the End of Life

Hospice care is generally designed for people who are expected to live six months or less. 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 teams are specially trained in managing pain and other uncomfortable symptoms at the end of life. They work to ensure that people remain as comfortable as possible during their final days.

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.

Join the Conversation

On MyParkinsonsTeam, people share their experiences with Parkinson’s disease, get advice, and find support from others who understand.

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