Advanced Parkinson’s disease denotes the later stages of the condition when symptoms have progressed to the point where they are disabling. At this time, a person may no longer be able to live independently.

Parkinson’s disease is a progressive brain condition that manifests in uncontrollable movements, such as stiffness and shaking.

The main cause involves the death of or damage to the nerve cells in the brain that produce the chemical dopamine. This results in decreased dopamine production, leading to movement problems.

This article discusses advanced Parkinson’s disease and the symptoms, stages, and treatment of the condition. It also examines how to prepare for the later stages and offers helpful tips for caregivers.

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For most people with Parkinson’s disease, the condition is progressive, which means it worsens with time. The advanced stages refer to when the symptoms have developed enough to produce severe disability and the loss of the ability to live alone without help.

During the later stages, medications that manage the symptoms may become less effective, and their side effects may outweigh their benefits.

Additionally, aside from movement symptoms, Parkinson’s disease can also lead to mood disorders, such as depression, or nonmotor symptoms, such as cognitive dysfunction, dementia, or autonomic dysfunction leading to constipation.

Visit our dedicated hub to learn more about Parkinson’s disease.

There are five stages of Parkinson’s disease. Doctors consider stages 1 and 2 the early stages, stage 3 the middle stage, and stages 4 and 5 the late stages.

Not every person progresses at the same rate or necessarily experiences the symptoms in the same order. Generally, the stages (using the Hoehn and Yahr stages) are as follows:

  • Stage 1: This involves mild symptoms that do not affect daily activities. They include tremors and other movement symptoms on one side of the body. Changes also manifest in walking, posture, and facial expression.
  • Stage 2: The symptoms begin worsening. Rigidity, tremor, and other movement symptoms affect either both sides of the body or the torso and neck. Poor posture and walking problems may also appear. Independent living is possible, but daily activities are more difficult and take more time to perform.
  • Stage 3: This entails a loss of balance and more frequent falls. While independent living is still possible, dysfunction restricts some ability to perform daily activities. Disability is mild to moderate.
  • Stage 4: Symptoms have developed fully and produce severe disability. Although the ability to stand and walk remains intact, a walker or cane may be necessary for safety. Independent living is no longer an option because help with daily activities is necessary.
  • Stage 5: In this most debilitating stage, leg stiffness prevents standing and walking. It involves confinement to a wheelchair or bed, along with the need for care in all activities.

Learn more about the stages of Parkinson’s disease here.

The four main symptoms include:

  • muscle stiffness, which means the muscles stay contracted for a long time
  • tremors in the arms, hands, jaw, head, or legs
  • poor coordination and balance, which sometimes causes falls
  • slowness of movement

Additional symptoms may include:

  • constipation or urinary problems
  • depression and other emotional effects
  • skin problems
  • difficulty in speaking, chewing, and swallowing

For many people, the worsening of the condition happens so gradually that they can enjoy many years of spending time with family and perhaps working. It is also worth noting that many people never reach the advanced stages, and end of life happens at an old age from another condition.

However, as some people do reach the advanced stages, preparing for them is important. First, a person can familiarize themselves with the possible symptoms that may occur as the condition worsens, so additional problems will not take them unaware.

Secondly, having a plan in place for all contingencies can provide peace of mind. Below are things to keep in mind:

Home modifications

Before Parkinson’s disease worsens, a person may wish to consider making home modifications. These can include minor changes such as installing grab bars near the toilet and in the shower and making the entire house wheelchair-accessible.

Additionally, moving to a smaller home may be something to consider. This can be especially helpful if a person lives in a two-story or split-level home.

Home health aide

A person and their family should think about who they can hire as a home health aide if and when it becomes necessary. If hiring a family member or friend to perform this service is impossible, another option is to find a reputable agency.

The American Parkinson’s Disease Association helpline at 1-800-223-2732 is a good resource to help people find an agency in their area.

Before needing a home health aide arises, it is best to investigate how to finance the expense. Options include:

  • Medicaid
  • independent wealth
  • long-term care insurance

Moving to a facility

When more than one aide is necessary to enable a person to stay in their home, it may be time to move to a more protective environment. The options are assistive living facilities and nursing homes.

A person can visit candidate facilities in advance and make a decision about the one they would prefer.

Treatment for Parkinson’s disease may include medications, deep brain stimulation, and other therapies.

Medications

Because the production of less dopamine causes movement symptoms, medications that address this may reduce these symptoms. The primary treatment is levodopa, which increases dopamine. People usually take this with carbidopa, a drug that decreases some of the side effects of levodopa.

Sinemet is a brand name for a combination of these two medications.

Additionally, medications may also affect other brain chemicals and help control the nonmovement effects of the disease.

Other medication options include:

  • dopamine agonists, such as pramipexole (Mirapex), which stimulate dopamine activity
  • amantadine (Gocovri), which decreases involuntary tremors
  • enzyme inhibitors, such as tolcapone (Tasmar), which slow the breakdown of dopamine in the brain
  • anticholinergic medications, such as trihexyphenidyl (Artane), which reduce muscle rigidity and tremors

In advanced Parkinson’s disease, there are also different ways to receive medication, such as levodopa intestinal gel or subcutaneous apomorphine infusion. A doctor can discuss the importance of optimizing the best medical treatment.

Deep brain stimulation

Deep brain stimulation (DBS) may be an option for people who do not respond well to medication. In this surgical procedure, a doctor implants electrodes in an area of the brain, implants an electrical device in the chest, and connects the device to the electrodes.

DBS painlessly stimulates parts of the brain that control movement. Consequently, it may help relieve movement-related symptoms, such as rigidity and tremors.

Read more about DBS here.

Other therapies

These include:

  • a healthy diet
  • exercises to improve balance and strengthen muscles
  • occupational, physical, and speech therapies
  • massage therapy
  • tai chi to increase flexibility and stretching

Read more about treatment for Parkinson’s disease here.

Palliative care is about improving the quality of life for the person, including helping with symptoms or pain. Those in the advanced stages of Parkinson’s disease may benefit from palliative care, which can involve:

  • choosing treatment options
  • choosing where the care will happen, such as in a facility or at home
  • advice for caregivers, including family members
  • addressing physical problems such as immobility or loss of appetite

Palliative care is provided at home or in a hospice or facility with special palliative care teams or nurses. A palliative care team may also include:

  • physiotherapists
  • occupational therapists
  • speech and language therapists
  • dietitians or nutritionists

The Department of Veterans Affairs offers the following advice for caregivers:

  • Self-care: Caregiving is a challenging role, so a person should make time for themselves, as well as eat a healthy diet, exercise, and get enough sleep.
  • Access help: A person should not do more than they are realistically able to do. They may access help from community resources or accept help from family and friends.
  • Emotional support: Joining a support group where someone can share their experiences and feelings with other caregivers is of considerable value. One option is Smart Patients.

Advanced Parkinson’s disease refers to stages 4 and 5, when the symptoms, such as stiffness and shaking, result in severe disability.

Treatment may include medications, DBS, and other therapies.

Not every person reaches the advanced stages. That said, it is best to prepare for them, so if a person’s condition progresses this far, they will have a plan in place. Preparations may include considering home modifications and looking at options for a future home health aide or, if necessary, a facility.

Because caregiving can be challenging, people in this role should care for themselves, access help when available, and seek emotional support.