A caregiver or care partner of someone with Parkinson’s disease (PD) in the late stages has significant responsibility and challenges.
As a chronic, progressive condition, the symptoms of PD worsen the longer a person has it, but each patient has a unique experience of the disease.
Different people experience their own set of symptoms, and the severity of those symptoms also varies. Not everyone experiences all the symptoms of PD, and the role of the caregiver will also vary based on the needs of their loved one.
What to expect in the late stages
The late stages of PD are medically classified as stage four and stage five by the Hoehn and Yahr scale:
Stage four
In stage four, PD has progressed to a severely disabling disease. Patients with stage four PD may be able to walk and stand unassisted, but they are noticeably incapacitated.
Many use a walker to help them. At this stage, the patient is unable to live an independent life and needs assistance with some activities of daily living. The necessity for help with daily living defines this stage. If the patient is still able to live alone, it is still defined as Stage Three.
Stage five
Stage five is the most advanced and is characterized by an inability to arise from a chair or get out of bed without help. They may have a tendency to fall when standing or turning, and they may freeze or stumble when walking.
Around-the-clock assistance is required at this stage to reduce the risk of falling and help the patient with all daily activities. At stage five, the patient may also experience hallucinations or delusions.1,2
Mobility challenges
In late-stage PD, patients have significant mobility challenges. Caregivers likely need to provide more hands-on assistance to help them get around the house.
It’s important that caregivers learn safe and effective methods to provide help without injuring themselves. Physical therapists can be a great resource to assess an individual situation and teach effective ways of giving assistance.3
Freezing, a sudden but temporary inability to move, can become more common in late-stage PD. Freezing often happens when initiating movement or navigating around obstacles, and freezing episodes contribute to falls.
Caregivers can help their loved one overcome freezing by providing a visual cue to step over, like a laser pointer, or using music or rhythm for the person with PD to walk to.3
Daily activities
Late stage PD can make daily activities, such as getting dressed, much more challenging. Caregivers can make getting dressed easier by ensuring adequate time to account for slow movement, choosing a time when medications are "on" and working well, and assembling all necessary items close to the person. Allowing the person with PD to do as much as they can gives them a sense of participation in the process.3
Managing medications
Medications are an important part of managing PD, and taking pills on time is critical for minimizing symptoms as much as possible. To make it easier, caregivers often use pill dispensers and set alarms or reminders on their phone to keep track of dosing schedules.
Difficulty swallowing
Mealtime can also be a challenging time. Advanced PD can cause difficulties in swallowing. The movement needed to get food and drink to the mouth is also impaired.
There are assistive devices that can be helpful, such as large handled utensils. Foods that are easier to swallow include soft foods, like eggs, fruits, and baked or broiled fish. Gravies and sauces can also help make food easier to swallow.3
Mood changes
Many of the symptoms of PD can change the way a person thinks, including depression, anxiety, forgetfulness, confusion, and compulsive behaviors.
Some people with late stage PD experience dementia. Changes in thinking or memory can be frustrating and frightening for both the patient and the caregiver. Any new changes or worsening of symptoms should be promptly reported to the doctor3
The demand on caregivers
The increasing demands on caregivers during the late stages of PD can often take a toll on the health and well-being of the caregiver.
It is critical that the caregiver asks for and accepts help, builds in regular breaks from caregiving, and continues to stay socially connected.3,4