For degenerative diseases such as Parkinson’s, it’s important for both individuals and their healthcare providers to understand how the disorder is progressing. As time goes on and symptoms develop, care needs and treatments will need to change. In order to understand how Parkinson’s disease is affecting your day-to-day life, your primary care physician will evaluate your symptoms along a Parkinson’s disease disability scale.
There are a number of different disability scales that can be used to understand how the disorder is impacting a person – from those that look at just the motor symptoms to those that look at how independently you’re able to complete tasks and chores. In this article, we’ll walk you through some of the most commonly used Parkinson’s disease disability scales to understand why and how they might be completed.
What is Parkinson’s disease?
Parkinson’s disease is a degenerative nervous system disorder that affects movement. The most recognisable symptoms are tremors (involuntary shaking of parts of the body), slow movements and stiff and inflexible muscles. There are a number of other symptoms that an individual might notice as the disease progresses, such as anxiety and depression, balance issues, loss of smell, problems sleeping and memory issues. The early signs of Parkinson’s disease (PD) may include mild tremors or shaking, stiffness or difficulty with movement, and changes in posture or balance. Most people with Parkinson’s will start noticing symptoms in their 50s, although some people first experience them in their 40s, and they will get progressively worse with time.
Parkinson’s is caused by a loss of nerve cells in a part of the brain, leading to a reduction in the production of dopamine. Dopamine is a key hormone in regulating movement, which means that the lack of dopamine is the main cause of these symptoms. In 10-15% of cases, there is a link to a genetic cause, but in most instances, the disease is said to be idiopathic; the cause is unknown.
What is a Parkinson’s disease disability scale?
A Parkinson’s disease disability scale is used to get a better understanding of how the disease is progressing. They may be completed by either the patient or a healthcare professional in order to assess the course of the condition and the individual’s quality of life. This is crucial for helping their primary care physicians evaluate the treatments in place and update them as required.
There are three disability scales that are most prominent when evaluating the progression of Parkinson’s: the Hoehn and Yahr scale, the Schwab and England Activities of Daily Living scale, and the Unified Parkinson’s Disease Rating Scale (UPDRS). They are often used in tandem to give a full picture of how the disease is impacting someone’s life. Other disability scales also exist, which we’ll touch on later.
Hoehn and Yahr scale
The Hoehn and Yahr scale was originally published in 1967 and focuses on the physical effects of Parkinson’s as it progresses. Originally, there were 5 stages of progression, starting with “symptoms on one side” and ending with “needing a wheelchair or bedridden”. However, 3 additional stages have since been added as follows:
- Stage 0 – No symptoms
- Stage 1 – Symptoms on one side only (unilateral)
- Stage 1.5 – Symptoms are unilateral and also involve the neck and spine
- Stage 2 – Symptoms on both sides but no impairment of balance
- Stage 2.5 – Mild symptoms on both sides, with recovery when the ‘pull’ test is given (the doctor stands behind the person and asks them to maintain their balance when pulled backwards)
- Stage 3 – Balance impairment, physically independent
- Stage 4 – Severe disability, but still able to walk or stand unassisted
- Stage 5 – Needing a wheelchair or bedridden unless assisted
As we can see, this Parkinson’s disease disability scale is primarily looking at how the defined symptoms of tremors, difficulty moving and stiff muscles are presenting in a patient. This gives healthcare providers a useful insight into what additional support needs their patients might require.
Shwab and England Activities of Daily Living Scale
Where the Hoehn and Yahr Parkinson’s disease disability scale is primarily concerned with the manifestation of symptoms, the Shwab and England Activities of Daily Living scale examines the impact of those symptoms on a person’s daily life. As with many neurological disorders, people with Parkinson’s will find living independently to be more and more difficult as the disease progresses. This scale factors in both how quickly tasks and chores can be done, and how much support is needed.
Those who rank highly on this scale are considered to be very independent; not needing any additional support. As the percentage score decreases, more and more time will be taken for tasks. Tasks might take three times as long. Eventually, the individual might not be able to help with any chores.
This scale gives great insight into the support needs of an individual. The lower their score, the more help they’ll need to complete daily tasks. When putting together a treatment and care plan, then, this insight is hugely valuable.
Unified Parkinson’s Disease Rating Scale (UPDRS)
The UPDRS is often considered to be the most comprehensive and holistic Parkinson’s disease disability scale as it combines elements of a number of other rating scales to provide a picture of the progression of the disease and its impact on a person’s life. It is typically completed by a healthcare professional; factoring in both the patient’s answers and a physical examination. There are 5 sections to this scale:
- Evaluation of cognitive ability, behaviour, and mood
- Evaluation of daily living tasks
- Motor function
- Complications from therapy
- Hoehn and Yahr scale
- Schwab and England Activities of Daily Living Scale.
Evaluation of cognitive ability, behaviour and mood
The first part of the UPDRS looks at an individual’s mental capabilities, behaviour and overall mood. The healthcare professional will be assessing sleep patterns (difficulty sleeping, daytime sleepiness, fatigue), forgetfulness, overall pain and urinary problems, as well as evaluating whether the person shows signs of depression, anxiety, or general apathy. As the disease progresses, the patient may also begin having hallucinations or delusions. This part of the UPDRS will be where this would be recorded.
Evaluation of daily living tasks
As we’ve already mentioned, Parkinson’s disease is predominantly a movement disorder. This means that everyday living tasks will be impacted more as the disease progresses and symptoms worsen. In this section of the scale, your healthcare provider will be looking to establish how severely day-to-day activities such as speech, swallowing, handwriting and cutting food are impacted by your symptoms.
The next section of the scale is more focused on the physical presentation of Parkinson’s, and so will likely involve a more hands-on examination or demonstration of your capabilities. Not only will your physician be assessing how your tremors are presenting, whether your muscles and limbs are rigid, and your facial expressions, but they’ll also be looking at how well your hands and legs move. They’ll be looking for signs of fatigue and how much assistance you need.
Complications from therapy
People with Parkinson’s disease will likely be on a program of various medications, treatments and physical therapies in order to best manage the condition. One of the most common drug treatments has been known to cause dyskinesia, which is where your body will move involuntarily. This section of the scale keeps an eye on side effects and complications from your therapies so that they can adjust medications as required.
Hoehn and Yahr scale
As part of the UPDRS, healthcare providers will also consider the progression of a patient’s Parkinson’s along the previously mentioned Hoehn and Yahr scale. This will provide a clear view of the rate of symptom progression.
Schwab and England Activities of Daily Living Scale
Also factored into the UPDRS is the Schwab and England Activities of Daily Living Scale. This gives a view of how independently different tasks and chores can be completed. By including this scale, physicians get a more holistic overview of the specific care needs of an individual. Beyond medication and therapies, do they need additional care in the home to help complete daily tasks and chores?
Other Parkinson’s Disease Disability Scales
While the Hoehn and Yahr scale, the Schwab and England Activities of Daily Living scale, and the UPDRS are the most commonly used disability scales for assessing Parkinson’s, there are a number of others that are sometimes also used. The PDQ-39 is a short questionnaire of 39 questions that is usually self-administered. It tends to be used in a clinical trial setting and looks at 8 different areas of both motor and non-motor symptoms. The PD NMS questionnaire – abbreviated from Non-Motor Symptoms – looks at non-motor-related symptoms of Parkinson’s. This can help people identify less obvious symptoms that they might not have linked to their Parkinson’s diagnosis, but are nonetheless still part of the disorder. There are also other, non-direct rating scales that may be used to evaluate things such as pain levels or sleep disturbances more in-depth.
Managing Parkinson’s disease with Dementech
At Dementech, we offer a multidisciplinary approach to the treatment and management of Parkinson’s disease. Our team of specialists includes a speech and language therapist, occupational therapist, dietitian, psychologist and psychiatrist who provide speech therapy, nutrition advice and counselling. If you or a loved one is showing signs of Parkinson’s, or if you’re looking for additional support following an existing diagnosis, get in touch with our team today.