End-Stage Parkinson’s Disease: What To Know | MyParkinsonsTeam

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End-Stage Parkinson’s Disease: What To Know

Updated on April 15, 2024

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, meaning it worsens over time.

Knowing what to expect from end-stage disease can help people with Parkinson’s and the people who care for them prepare for the challenges ahead and navigate the end stages with more understanding and comfort.

What Is End-Stage Parkinson’s Disease?

Parkinson’s disease has five stages, which are based on symptoms and disability. The later stages of Parkinson’s, stage 4 and stage 5, are considered severe. At stage 4, a person may not be able to eat or get dressed by themselves. At stage 5, they may be unable to get out of bed or need a wheelchair.

Severe symptoms of advanced Parkinson’s, such as stiffness in the legs, can make standing or walking impossible and increase a person’s risk of getting hurt from falling. End-stage Parkinson’s usually means needing care at all times.

What Are the Symptoms of End-Stage Parkinson’s Disease?

In addition to needing help with daily tasks, people with end-stage Parkinson’s can have a variety of severe movement motor and nonmotor symptoms including:

  • Tremors
  • Bradykinesia (slow movement)
  • Stiff limbs or leg freezing, which can make standing or walking impossible
  • Loss of balance
  • Muscle spasms and cramps
  • Dysphagia (difficulty swallowing)
  • Dysarthria (difficulty speaking)
  • Constipation
  • Incontinence
  • Sleep disorders
  • Low blood pressure
  • Cognitive impairment (memory loss, poor attention, dementia)
  • Mood disorders (depression, anxiety)
  • Personality or behavioral changes (anger, irritability, loss of impulse control)
  • Hallucinations and/or delusions

Managing End-Stage Parkinson’s Disease

In its advanced stages, Parkinson’s disease becomes harder to manage. Motor and nonmotor symptoms get worse, and treatments may not work as well as the disease progresses.

Managing these symptoms and providing palliative care — special medical care that focuses on quality of life during treatment — are important parts of treating end-stage Parkinson’s.

Adjusting Medications for Motor Symptoms

Over time, treatments for Parkinson’s, such as levodopa, don’t work as well, and the risk of side effects increases. Problems with the body not absorbing enough of the drug or not responding to it can lead to a “wearing-off” effect. This causes symptoms to get worse before the next dose is given.

People can also experience “off” time when medication doesn’t work and motor symptoms can increase. Changing the medication dose, or how often it’s taken, can help minimize “off” time. For example, breaking down levodopa doses into smaller doses given more frequently can help some people.

Adding medications to the treatment plan can also help reduce motor symptoms. For example, adding the monoamine oxidase inhibitors rasagiline (Azilect) and amantadine (Gocovri), or the dopamine agonist apomorphine (Apokyn), can make levodopa work better.

A class of drugs called catechol-O-methyltransferase inhibitors, such as entacapone (Comtan) and tolcapone (Tasmar), can slow the breakdown of levodopa in the body, allowing its effects to last longer.

Read more about specific medications in this list of treatments for Parkinson’s disease.

Treating Nonmotor Symptoms

Many medications used to treat nonmotor symptoms interact with other Parkinson’s medications or cause severe side effects.

For example, some antipsychotic medications can increase the risk of side effects. Antipsychotic drugs such as clozapine and quetiapine (Seroquel), however, are often safely used to treat hallucinations and delusions in people with Parkinson’s. In addition, pimavanserin (Nuplazid) is a U.S. Food and Drug Administration (FDA)-approved treatment for hallucinations and delusions associated with Parkinson’s psychosis.

Clozapine can also treat dyskinesia, uncontrollable movements that can be a side effect of levodopa medications. Depression and anxiety can be treated with antidepressants, but these also carry a high risk of side effects for people living with Parkinson’s disease.

End-of-Life Planning

When facing a progressive and debilitating disease such as Parkinson’s disease, planning for the end of life can make things easier and provide some sense of control.

Planning for the end of life can make things easier and provide some sense of control.

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Drafting a living will (advanced directive), durable power of attorney, or physician orders for life-sustaining treatment — or even simply stating your wishes clearly to your family or caregivers — can ease the burden of making difficult decisions at the end of life. If you need help deciding what would be best for you, discuss end-of-life care with your doctor or another health care professional.

Some important decisions to consider include:

  • Who will make health care decisions if you are unable to
  • When to withhold care (such as antibiotics, tube feeding, or breathing machines)
  • When to withhold CPR, often indicated by a do-not-resuscitate order
  • Whether you want to donate your organs
  • How you wish your burial to be handled

Hospice Care

Hospice care is usually for people who have six months or less to live and need constant care. This can 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, as constant care of someone living with Parkinson’s can take a huge physical and emotional toll on caregivers.

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

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

Costs associated with hospice may be covered by Medicare, Medicaid, or private insurance plans. Speak with your health care provider or insurance carrier for information about what is and is not covered.

Hospice care supports those facing serious illnesses. Working closely with individuals and their families, the hospice team develops a care plan that respects their needs, making sure they are treated with dignity. This approach ensures that families can 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, more than 101,000 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.

Updated on April 15, 2024
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Kiran Chaudhari, M.B.B.S., M.D., Ph.D. is a specialist in pharmacology and neuroscience and is passionate about drug and device safety and pharmacovigilance. Learn more about him here.
Kristopher Bunting, M.D. studied chemistry and life sciences at the U.S. Military Academy, West Point, and received his doctor of medicine degree from Tulane University. Learn more about him here.

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