Despite advancements made in understanding Parkinson’s disease (PD) and the development of effective treatments to help control symptoms, it is progressive and incurable.
Late stages of PD present a variety of challenges to people with PD and their caregivers. Knowing what to expect from end-stage disease can help people with PD and the people who care for them prepare for the inevitable.
PD has five stages based on symptoms and disability according to the Hoehn and Yahr scale. The later stages of PD, stage 4 and stage 5, are considered severe. In these categories, disability ranges from the inability to feed or dress oneself (stage 4) to being bedridden or wheelchair-bound (stage 5).
People with advanced PD are at high risk of injury from falls. End-stage PD leaves people unable to care for themselves. At this point, they require assistance with all aspects of daily living and need around-the-clock care.
In addition to needing help with daily tasks, symptoms of stage 5 PD include:
People with end-stage PD can have a variety of severe motor (movement) and nonmotor symptoms including:
In its advanced stages, PD becomes increasingly difficult to manage. Not only do motor and nonmotor symptoms become more severe, but treatments can become less effective as the disease progresses.
Managing these symptoms is an important part of treating end-stage PD and providing palliative care — specialized medical care that focuses on relieving symptoms while still allowing for treatment of the disease.
Over time, treatments for PD, such as levodopa, become less effective, and the risk of side effects increases. Problems with drug absorption in the gut and decreased sensitivity to levodopa can lead to a “wearing-off” effect that causes worsening of symptoms before the next dose is given.
People can also experience “off” time when medication does not work and motor symptoms can increase. These effects can be minimized by changing your medication dosage (or dosage schedule) or by adding on other medications. Breaking down levodopa doses into smaller doses given more frequently can help some people.
A class of drugs called catechol-O-methyltransferase inhibitors, such as Comtan (entacapone) and Tasmar (tolcapone), can slow the breakdown of levodopa in the body, allowing its effects to last longer.
Many medications used to treat nonmotor symptoms interact with other PD medications or have a high likelihood of producing severe side effects.
Traditional antipsychotic medications can lead to an increased risk of side effects. Antipsychotic drugs such as clozapine and Seroquel (quetiapine), however, are often safely used to treat hallucinations and delusions in people with PD.
Nuplazid (pimavanserin) is a Food and Drug Administration-approved treatment for hallucinations and delusions associated with PD 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 PD.
No one wants to think about their death or the death of a loved one, but when facing a progressive and debilitating disease such as PD, planning for this stage can make things easier and provide some sense of control. Drafting a living will (advanced directive) or durable power of attorney, or simply stating your wishes clearly to your family or caregivers, can ease the burden of making difficult decisions at the end of life when you are unable to. 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:
Hospice care is typically for people who have six months or less to live and require 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 your caregivers. Constant care can take a huge physical and emotional toll on caregivers.
Hospice care can be given at a hospice facility or at home with home health nursing. It is best to look into your options early and discuss hospice care with your health care provider or a hospice facility.
Hospice can help you and your loved ones make the most out of the time you have, allowing you to spend quality time with family members and the people you care about.
MyParkinsonsTeam is the social network for people with Parkinson’s disease. On MyParkinsonsTeam, more than 82,000 members come together to ask questions, give advice, and share their stories with others who understand life with PD.
Are you or someone you care for living with PD? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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