10 Tips for Working with Parkinson’s Patients
March 26 2020
Dealing with a Progressive Disorder Requires Flexibility, Vigilance and Gentle Encouragement
Parkinson’s disease is a progressive nervous system disorder that affects a patient’s movement. Tremors are common, but the disorder can also cause stiffness or slowing of movement, rigid muscles and impaired posture and balance. A patient’s speech can also become soft or slurred and it can become hard to write. And while there are medications out there to help improve the symptoms of Parkinson’s, it cannot be cured and symptoms do worsen over time.
Person-Centered Care + Flexibility
Symptoms of Parkinson’s fluctuate so it is key that you focus on person-centered care, rather than disease-centered approach. A person’s life should not be defined by their health conditions so focus on the needs of the person instead. And be prepared to be flexible about it. Their weekly or even daily needs will change. Promote open conversations and be sure to speak with your patient or loved one regularly about what their care needs are.
Remember to focus on what your patient or loved one can do–not what they can’t do. Encourage independence for as long as possible. Always ask if they need help first and respect their answer. It can be hard to give up our independence, so don’t chastise them for not accepting help. Only jump in later when you believe there is a danger to your loved one or patient’s safety.
Plan Ahead for Modifications
Because of the progressive nature of Parkinson’s, it is important to plan for future symptoms. Think about any modifications that may need to be made to the home to make it easier for the patient or your loved one to be independent longer. Some changes may be moving furniture to make it easier to navigate about the house or purchasing medical equipment to help with daily living tasks.
Report Any Changes in Symptoms
Keep an eye on your patient or loved one’s symptoms as they will progress over time. Report any changes in behavior or symptoms so that they can be addressed as soon as possible and don’t forget to address any pain they may be experiencing. Understand that there will be good days and bad days due to the fluctuating nature of the disorder.
Parkinson’s will progress differently for every patient, but watch for these signs of advanced Parkinson’s:
- Medication regimen is complicated or are no longer working
- Increased mobility issues and falls
- Problems swallowing
- Symptoms become less predictable and less control over symptoms
- Mental health issues such as hallucinations, delusions and dementia
- Overall reduced independence
Dealing with Freezing
Freezing is when a Parkinson’s patient suddenly stops walking or starting a movement. This can’t always be treated with medications so some patients will need cueing strategies to help them. These strategies include counting steps and using trigger words to encourage movement.
Dealing with Slow Movements (Bradykinesia)
It can be frustrating for many Parkinson’s sufferers when they do not move as quickly as they want to. Remember that they are not being difficult when this happens. Be sure to give them plenty of time, support and patience.
Dealing with Other Symptoms
There are many other symptoms such as bladder issues; constipation; problems with eating, swallowing and saliva control; sleep problems; communication issues and memory problems. Remember to approach everything with patience. Medications can help with many symptoms, such as bladder issues, pain and constipation. Give your loved one or patient plenty of time to accomplish tasks.
Take care to watch them closely while eating. Swallowing issues can lead to food and liquid going into the lungs rather than the stomach and there is a possibility of “silent aspiration.” This is when food enters the windpipe and down into the lungs without any of the usual signs of coughing or choking, leading to problems like aspiration pneumonia. Have open communication about any issues they experience with chewing and swallowing. Actions to take to improve the patient’s experience and safety while eating or drinking can include posture changes or using specially designed cups and cutlery.
Remember that communication issues does not mean the person isn’t interested or doesn’t understand you. Talk normally and don’t shout. Give them plenty of time to respond and don’t interrupt them. Some patients will experience slowed thought process so use short sentences and stress key words. Try not to ask difficult questions or ask more than one question at a time.
Encourage Exercise When Appropriate
Encourage your loved one or patient to exercise regularly if possible and when appropriate. This can help to strengthen muscles, increase joint mobility and build up general health and fitness.
Key In to Mental Health
Dealing with any physical health issue, especially one that limits our independence, will invariably affect our mental health. And mood swings and depression are quite common symptoms of Parkinson’s. Stay in tune with your loved one or patient’s mood. Be on the watch for signs of anxiety or depression and report these symptoms right away so they can be addressed. Stress can make tremors worse so help the patient or your loved one reduce stressors.
As a family caregiver, expect that there will be changes in the relationship with your loved one. Encourage open and honest communication to work through these challenging times as you adjust to new roles in the relationship.
As a family caregiver, don’t forget to look after your own well being too. Take time for some self care to unwind and destress. Join a support group as this will provide both practical and emotional support in a safe and understanding environment.
Talk About the Future
This can be a difficult subject, but it is important that you understand what your loved one wants in the future. More advanced symptoms can lead to increased disability and poor health, making them more susceptible to infection. Discuss treatment options, wills and end-of-life decisions. If you are having problems getting your loved one to talk about some of these topics, don’t give up. Be gentle about it and don’t push too hard. Just remind them that you want to make sure that you are able to fulfill what they want down the road.