Parkinson’s disease is a progressive neurological disorder that gradually affects a person’s movement and other bodily functions. Over time, the symptoms evolve and intensify, leading to significant changes in an individual’s life and the lives of their family members. For many, a primary concern is understanding how the condition will change in its more advanced phases.
Defining Late Stage Parkinson’s
Clinicians use the Hoehn and Yahr scale to describe the progression of Parkinson’s motor symptoms. This scale consists of five stages, with stages four and five representing the late or advanced phase of the disease. The progression through these stages is highly individual, and the timeline can vary significantly from one person to another.
Stage four is characterized by severe symptoms. At this point, individuals are still able to walk or stand without assistance, but they may need a device like a walker to move around safely. Daily tasks, such as dressing and eating, become more challenging, and living alone is no longer feasible due to the high level of disability.
Stage five represents the most advanced phase of the disease. In this stage, motor skills are severely impaired, and stiffness in the legs can make standing or walking impossible without help. A person in stage five is reliant on a wheelchair for mobility or may be bedridden, requiring around-the-clock nursing care for all daily activities.
Key Symptoms and Complications
As Parkinson’s advances, both motor and non-motor symptoms become more pronounced. Motor symptoms that were once manageable can become severely disabling. Postural instability worsens, leading to a higher risk of falls and related injuries like fractures. “Freezing” of gait, a sudden, temporary inability to move, becomes more frequent and can contribute to falls. Severe bradykinesia, or slowness of movement, and rigidity can make even simple actions very difficult.
A significant challenge in the late stages is dysphagia, or difficulty swallowing. This affects the muscles in the mouth and throat, making eating and drinking challenging and increasing the risk of choking. It can also lead to aspiration pneumonia, a serious lung infection caused by food or liquid entering the airway. Immobility also brings risks such as pressure sores for those who are bedridden.
Non-motor symptoms can become a burdensome aspect of late-stage Parkinson’s. Cognitive changes are common and can progress to Parkinson’s disease dementia, which affects memory, decision-making, and other executive functions. Psychiatric symptoms can also emerge or intensify, including visual hallucinations, delusions, and severe depression or anxiety. Other challenging non-motor issues include:
- Urinary incontinence
- Chronic constipation
- Severe sleep disturbances
- Orthostatic hypotension, a significant drop in blood pressure upon standing that can cause dizziness and fainting
Medical and Palliative Management
In late-stage Parkinson’s, the focus of medical management shifts from controlling motor symptoms to prioritizing comfort and quality of life. Medications like levodopa may become less effective and can cause problematic side effects, such as dyskinesia (involuntary movements). As a result, physicians might simplify medication regimens, reducing dosages or stopping drugs that are no longer beneficial or are causing adverse effects.
This stage often involves the introduction of palliative care, a specialized approach focused on relieving the symptoms and stress of a serious illness. Palliative care is not the same as hospice and can be introduced at any stage of an illness. A palliative care team works alongside the patient’s other doctors to manage distressing symptoms like pain, nausea, fatigue, and anxiety, while also offering emotional and spiritual support to both the patient and their family.
As the disease progresses and life expectancy is estimated to be six months or less, a transition to hospice care may be considered. Hospice focuses entirely on comfort and dignity at the end of life. Eligibility for hospice depends on factors such as:
- Significant breathing difficulty
- Being bed-bound
- Unintelligible speech
- The presence of complications like pneumonia
Caregiving and Living Arrangements
The advanced stages of Parkinson’s disease require significant care, including 24/7 assistance with activities of daily living. Tasks like bathing, dressing, eating, and moving become impossible for the individual to perform alone.
Families must make decisions about the best living arrangements to ensure safety and proper care. Many individuals prefer to remain at home, which can be achieved with support from family and professional home health aides. However, the intensity of care required may lead to considering a skilled nursing facility or a specialized memory care unit. These facilities are equipped to handle complex medical needs and provide round-the-clock supervision.
The physical and emotional toll on caregivers is substantial, and burnout is a serious risk. Caregivers should seek support through resources like local support groups or respite care services. Respite care provides temporary relief for primary caregivers, which is invaluable for managing stress and maintaining their well-being.