End-Stage Parkinson’s Disease: Symptoms, Care, and Support

Facing the later stages of Parkinson’s disease (PD) can be one of the most difficult parts of the journey – for both the person living with the condition and their loved ones. In this stage, symptoms are often severe, and daily life usually requires full-time support.

This blog provides a clear overview of what “end-stage” Parkinson’s may involve. You’ll learn about the most common symptoms, possible complications, and common approaches to support comfort, dignity, and quality of life.

This information is educational and not a substitute for medical advice. Always speak with your physician about your situation.

What is Parkinson’s Disease?

Parkinson’s disease is a progressive neurodegenerative disorder. It damages nerve cells in the brain that make dopamine, a chemical that helps regulate movement and coordination. As these nerve cells are lost over time, people may develop symptoms such as uncontrolled movements, shaking, stiff muscles, and trouble with balance. ^{1, 2}

While the loss of nerve cells that produce dopamine explains many of the movement-related symptoms, Parkinson’s also affects other parts of the brain. These changes can cause a range of other symptoms, such as swallowing difficulties, sleep problems, and mood changes, which are discussed later in this article.

Parkinson’s disease is the second most common neurodegenerative disorder after Alzheimer’s disease.³ It is estimated to affect more than 10 million people worldwide. ⁴

What Are the 5 Stages of Parkinson’s Disease

Doctors use different systems to describe how Parkinson’s disease (PD) changes over time. One of the most common is the Hoehn & Yahr (H&Y) scale. This scale focuses mainly on movement and independence.

The original version of this scale has five stages: 1–2 are considered early Parkinson’s, 3 is mid-stage, and 4–5 are advanced. ^{5, 6, 7, 8} The description provided here follow this original five-stage version, as it offers a straightforward and easy-to-understand overview of disease progression. In current clinical settings and research, however, a modified version featuring additional intermediate steps is often preferred, as it captures more subtle changes over time. ^{9, 10}

Early Stage (Stages 1 & 2): Symptoms are usually mild and may not interfere much with daily life. Changes in walking, posture, or movement speed may appear.

• Mid Stage (Stage 3): Balance problems and falls are more common. Daily tasks take more effort, but many people remain independent with some changes to their routine.
• Advanced Stage (Stages 4 & 5): Symptoms are severe and very limiting.
  • In Stage 4, walking may still be possible (often with a cane or walker), but daily help is needed.
  • In Stage 5, walking and standing are usually no longer possible, and full-time care is typically required.

End-stage Parkinson’s disease usually refers to stage 5, though some experts also include late stage 4. ^{11, 12, 13, 14}

In this blog, we’ll focus on end-stage Parkinson’s, its key symptoms, and common approaches that can help manage them. If you’d like to read more about the basics of Parkinson’s, including how it is diagnosed, common symptoms, current therapies, and ongoing research, check our dedicated blog.

Symptoms of End-Stage Parkinson’s

Most Parkinson’s symptoms can appear at any stage of the disease. However, they are usually much more severe and disabling in the end-stage, when they have the greatest impact on independence, comfort, and quality of life. ⁶ Common symptoms at this stage may include:

• Movement challenges: slowed movement (bradykinesia), muscle stiffness, tremor, and balance problems. ^{11, 14, 15, 16, 17}
• Speech and swallowing issues: soft or weak voice, trouble swallowing, and drooling. ^{14, 16, 18, 19 ​}
• Bladder and bowel symptoms: frequent urination, urgency, constipation, and urinary and fecal incontinence. ^{20, 21, 22}
• Skin problems (pressure sores) due to reduced movement and spending long periods in the same position. ^{14, 16, 17, 23}
• Pain: muscle and joint aches, cramps, nerve pain, or central pain. ^{11, 19, 24, 25}
• Sleep problems: insomnia, REM behavior disorder (acting out of dreams while sleeping), restless legs, sleep apnea, and excessive daytime sleepiness. ^{19, 26, 27, 28}
• Changes in thinking and perception: dementia, hallucinations, and delusions. ^{11, 19, 29, 30}
• Mood and emotional changes: depression, anxiety, apathy, or irritability. ^{31, 32}

For a full description of each, please see our our glossary of symptoms in end-stage Parkinson’s.

Supportive Care in End-Stage Parkinson’s Disease

In end-stage Parkinson’s, treatment is not about slowing the condition. The goal is to ease symptoms, keep the person comfortable, and support overall quality of life for both the person and caregivers.

Care for Physical Symptoms in End-Stage Parkinson’s Disease

Movement Symptoms

In end-stage Parkinson’s,movement symptoms such as stiffness, slowed motion, and balance problems are usually severe. At this point, treatments are less about restoring mobility and more about reducing discomfort and preventing complications like falls and injuries. ^{18, 19, 33} Healthcare providers may consider:

• Medication adjustments: In early Parkinson’s disease, drugs like levodopa can help improve movement problems. Over time, these medicines may become less effective, as more nerve cells in the brain become damaged Taking higher doses can also cause side effects, such as shaking movements, confusion, or hallucinations. ^{17, 18, 19, 33} When this happens, healthcare teams may adjust medication regimens to balance symptom control with side effects. This may involve simplifying or reducing medications, combining different drugs, or using alternative delivery methods such as skin patches or infusion pumps. ^{18, 19, 33}
• Deep Brain Stimulation (DBS) modifications: DBS uses a small device that sends electrical signals to specific areas of the brain to improve movement. It may be an option for people with advanced Parkinson’s disease who still respond to levodopa but experience changes in how well their medication controls symptoms or have involuntary movements (dyskinesias) and side effects that are difficult to manage with medication alone. In end-stage Parkinson’s, it may be adjusted or turned off if it no longer helps or becomes hard to manage. ^{11, 18}
• Physical therapy and supportive care: Gentle physical therapy and stretching may help reduce stiffness and improve comfort, even if mobility is limited. Mobility aids such as walkers or wheelchairs can help prevent falls. ^{16, 34}

In end-stage Parkinson’s, soft assisted movements and gentle stretching can help reduce stiffness and support comfort.

Swallowing and speech

Approaches to help with speaking, drooling or swallowing issues may include:

• Speech therapy: A speech therapist can help a person keep their voice stronger and clearer for as long as possible. ^{18, 19}
• Reducing drooling: This can sometimes be managed with Botox® shots in the saliva glands, or with patches or drops that lower the production of saliva. ^{17, 19}
• Managing swallowing difficulties: Strategies that may help include using thickened liquids, eating softer foods, or learning safe swallowing techniques. In end-stage Parkinson’s disease, eating or drinking by mouth may not be safe. At that point, doctors may suggest a feeding tube to make sure the person gets enough food and fluids. ¹⁷

Urinary incontinence

People with Parkinson’s may feel an urgent need to urinate, leak urine, or have difficulty getting to the bathroom in time. Management may include:

• Scheduled toileting: Using the bathroom at regular times can help reduce accidents. A bedside commode or urinal may also be useful when mobility is limited.
• Medicines: Some medicines, like mirabegron, may help calm an overactive bladder and reduce leaks.
• Botulinum toxin injections: In some cases, Botox® can be injected into the bladder muscle to help with urine control. ²²

Bowel issues

Constipation is very common in Parkinson’s disease. It may be managed by:

• Eating enough fiber and drinking plenty of fluids.
• Keeping a regular meal routine.
• Using gentle laxatives if needed. ^{19, 20, 22, 35}

Sometimes, severe constipation can block the intestine (bowel obstruction). This is very serious and may require surgery.²²

Fecal incontinence (stool leakage) usually appears in the later stages of Parkinson’s. It can often be improved through diet and lifestyle changes, such as:

• Avoiding foods that trigger loose stools (like fatty foods).
• Getting enough fiber, sometimes with a daily supplement.

For both urinary and bowel leakage, frequent changing of incontinence products and good skin care are important. This helps keep the skin healthy and lowers the risk of infection. ²²

Pressure ulcers

The risk of pressure ulcers can be reduced by changing position often, using cushions and keeping the skin clean and dry.¹⁷ If a pressure ulcer develops, care may include:

• Dressings that protect the sore and help it heal.
• Removing dead or damaged tissue in more serious cases.
• Surgery in advanced cases, to close and repair the wound.
• Antibiotics if there is an infection. ¹⁷

Pain management

Managing pain in end-stage Parkinson is important for comfort and quality of life:

• Muscle pain is often treated with standard pain relievers (analgesics) and, when needed, muscle relaxants to ease cramps or dystonia.
• Nerve pain may be managed using medications such as gabapentin, pregabalin, or duloxetine.
• Stronger medicines such as morphine may be considered if pain is severe.
• Non-medicine options such as gentle stretching, massage, or the use of heat/cold packs may also provide comfort. ^{19, 24, 36}

Sleep problems

Sleep issues in Parkinson’s can be managed in different ways:

• Good sleep habits: Going to bed at the same time each night and keeping a regular routine.
• Melatonin: A natural aid that may help some people with certain sleep problems.
• Medicines: Sleep medicines, or medicines for anxiety or depression taken at bedtime, may help in some cases.
• If sleep apnea is present, treatments such as CPAP (continuous positive airway pressure) or, in some cases, oxygen therapy may be recommended. ^{19, 28, 37, 38}

Managing Thinking and Perception Changes in End-Stage Parkinson’s Disease

There are different strategies that can help with changes in memory, thinking, and perception.

Memory and thinking (dementia)

Helpful approaches may include:

• Keeping a regular routine.
• Reducing clutter and keeping items in the same place each day.
• Staying socially active and doing light physical activities.
• In some cases, using medicines such as rivastigmine to support memory and thinking. ^{27, 39}

Psychosis (hallucinations and delusions)

Methods that can help reduce these symptoms include:

• Reviewing current medicines, since some can make psychosis worse.
• Adjusting the environment, such as improving lighting, reducing shadows, or lowering background noise, can help lessen potential triggers.
• In some cases, anti-psychotic medications may be prescribed. ³⁹

Mood and Emotional Care in End-Stage Parkinson’s Disease

Depression and Anxiety

Depression and anxiety are common in Parkinson’s disease. They can appear in earlier stages (sometimes even before movement symptoms appear) and persist throughout the course of the disease.They often appear together, but anxiety can also happen on its own. Helpful approaches include:

• Review medicines: Some medicines may influence mood and may be adjusted.
• Stay active: Mental, social, and physical activities can lift mood.
• Daily routine: A steady schedule, adequate sleep, and balanced nutrition can all help reduce stress and ease anxiety.
• Cognitive-behavioral therapy: A form of talk therapy that can support emotional well-being, reduce anxiety or depression, and make it easier to adjust to changes in daily life.
• Antidepressants: Medicines like sertraline (Zoloft®), paroxetine (Paxil®), or citalopram (Celexa®) may be used in some cases. These are often well tolerated and can treat both depression and anxiety in Parkinson’s. ^{19, 39}

Apathy

No specific medications are approved for apathy. However, establishing regular routines and encouraging engagement in activities may provide structure, consistency, and a greater sense of involvement. ^{39, 40}

Hospice Care in End-Stage Parkinson’s

Hospice care is a type of support for people who may be in the last months of life. It can take place at home, in assisted living, in a nursing home, or in a hospice house. The focus is not on curing Parkinson’s. Instead, it is on comfort, support, and quality of life for the person and their loved ones.

It can be hard to know the right time to start hospice, since Parkinson’s affects people in different ways. Hospice may be considered when medicines are no longer helping, when a person needs full help with daily care, or when there are frequent falls, infections, weight loss, advanced dementia, or repeated hospital stays.

Hospice care aims to ease pain, manage symptoms, and give emotional support. The care team may include doctors, nurses, aides, social workers, therapists, and volunteers. Help may include medicines, supplies, medical equipment such as a hospital bed or oxygen, and counseling for both patients and caregivers. ^{11, 14, 16, 41}

Conclusions

Parkinson’s disease (PD) is a neurological condition that leads to progressive difficulties with movement and coordination, as well as other body functions such as swallowing and bladder or bowel control. It can also affect sleep, thinking, and mood.

Most Parkinson’s symptoms can appear at any stage of the disease. However, they are usually much more severe and disabling in the end-stage, when they have the greatest impact on independence, comfort, and quality of life.

At this stage, care often focuses on comfort and quality of life, rather than improving movement. Medicines are often reduced or simplified. Supportive care may include speech therapy, changes in diet, regular daily routines, skin care, and pain or sleep management. Hospice care can offer support during the final phase of the illness. It focuses on ensuring comfort, dignity, and assistance for both the person and their loved ones.

Glossary of symptoms in the end-stage of Parkinson’s disease

Most Parkinson’s symptoms can appear at any stage of the disease. However, they are usually more severe, persistent, and disabling in the end stage, when they have the greatest impact on independence, comfort, and quality of life.

This glossary summarizes the , grouped by functional category. Some symptoms, such as constipation or depression, may begin earlier in the disease and worsen during this stage.

Note: The presentation and severity of symptoms vary from person to person. Additional symptoms may also occur that are not listed here, depending on individual disease progression, treatment history, and other health conditions.

* In end-stage Parkinson’s, movement problems such as stiffness and slowed walking can worsen these symptoms by making it harder to get to the bathroom in time.

At myTomorrows, we have a team of Patient Navigators, who are multi-lingual professionals with a medical background, who can help you to explore your treatment options and support you through your journey.

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