Caring for Loved Ones with Parkinson's Disease: How Integrated Care Management Eases the Burden on Families and Caregivers

Families of loved ones with Parkinson's disease face numerous challenges. These include managing caregivers, assisting with daily activities, medication management, and providing emotional support.

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Caring for Loved Ones with Parkinson's Disease: How Integrated Care Management Eases the Burden on Families and Caregivers
7 Min Read April 26th, 2023

April is Parkinson's Awareness Month, a time to shed light on the disease and honor its namesake, James Parkinson, the physician who first reported it. Parkinson's birth month was chosen to raise awareness about the disease's symptoms and support seniors affected by it.

Parkinson's disease is a neurological disorder that affects an individual's movement. It occurs when the brain cells responsible for producing dopamine, a chemical that controls muscle movement, start to deteriorate. It is estimated that around 500,000 people in the United States have been diagnosed with Parkinson's disease, with an additional 50,000 new cases reported every year. The disease is more prevalent among seniors.

According to the Parkinson's Foundation, it is estimated that up to 60% of people with Parkinson's disease will require some form of long-term health care or supervision as the disease progresses. This can include assistance with daily activities, such as dressing and bathing, and services and support with routine living activities. 

Care Required Varies

The need for long-term care can vary depending on the individual's age, overall health, and the severity of their symptoms. It is vital for people with Parkinson's disease and their families to plan for the potential need for long-term care and to explore options for support and care management.

Traditional health insurance, including Medicare, usually does not cover the cost of most long-term health care. This can place significant financial and emotional burdens on families. However, Medicaid can provide coverage for long-term care services for individuals with little to no income or assets. Long-Term Care Insurance will pay for comprehensive care, but someone cannot purchase an LTC policy if they have significant health issues.

Quality long-term health care is expensive, and those costs are increasing each year.

Common Symptoms

Symptoms of Parkinson's disease vary from person to person. Some common signs include tremors, stiffness, slow movement, and difficulty with balance and coordination. These symptoms can significantly impact a senior's daily activities, decreasing their quality of life.

However, there are ways to support seniors affected by Parkinson's disease. One approach is encouraging them to remain active through exercise and physical therapy. This can help improve muscle strength and coordination, leading to greater independence and better overall health. 

Caregivers can also provide support by helping seniors with daily tasks and providing emotional support.

As we recognize Parkinson's Awareness Month this April (or at any time), let us continue to raise awareness about the disease's symptoms and work towards improving the lives of those affected.

Dr. Murat Emre is a professor of neurology and a member of the Movement Disorder Society Task Force. He wrote in a review article about how common dementia can be in Parkinson's patients.

Dementia can occur in a substantial number of patients with Parkinson's disease with a point prevalence close to 30%.

Symptoms of Parkinson's disease dementia (PDD) include depression, anxiety, and psychotic behavior.

No Cure but Parkinson’s Can Be Managed

While there is no known cure for Parkinson's disease, treatments are available to help manage its symptoms. Medications like Levodopa are one option that can help increase dopamine levels in the brain, thereby reducing the severity of the symptoms.

However, it is crucial for caregivers to closely monitor the side effects of Levodopa, such as anxiety, insomnia, dyskinesia (rapid involuntary movements of the face, arms, legs, or trunk), and motor fluctuations (intervals marked by a positive response to Levodopa and periods marked by a reappearance of parkinsonian symptoms). 

It is also possible for Levodopa to cause compulsive behaviors, such as gambling or overeating. In such cases, adjusting the dosage of Levodopa might be necessary to minimize the side effects. It is always best to consult with a doctor for any medical advice related to Parkinson's disease.

Arosa is a premier provider of integrated care management services in the United States. We advocate and support seniors and their family members. We have had the opportunity to work with several patients with Parkinson's disease. 

For example, Joy has been a client with Parkinson's, and for over ten years, we have been working with her caregivers to ensure her safety due to her advanced physical limitations. Her caregivers have remained the same over time, allowing for a more personal touch and feeling of comfort. Our care managers have been able to support Joy and her family through this journey and provide guidance and advocacy through innovative treatments over the years, all while aiming to help her maintain as much independence and autonomy as possible. 

Physical and Emotional Challenges

As Parkinson's disease progresses, it can be incredibly challenging for patients, leading to mobility issues and other physical symptoms. However, it also has a significant emotional impact on the individual, which can result in depression and mood changes.

Apart from medical treatment, there are lifestyle modifications that seniors with Parkinson's can adopt to help manage their condition. One of these is maintaining a healthy diet, including a low-protein diet, which may help lower brain dopamine fluctuations. Exercise and physical therapy can also be beneficial in maintaining mobility and improving balance, allowing patients to maintain their independence for longer.

Dr. Michael Okun, a neurologist and the National Medical Director of the Parkinson's Foundation, warns of the dangers of patients over 60 not getting enough exercise.

Physical inactivity in patients over 60 with Parkinson's disease leads to many problems including poor balance, a greater risk of falls, poor cardiovascular health, and may also exacerbate Parkinson's symptoms such as rigidity and tremors.

In a study titled "Real-Time Feedback Training to Improve Gait and Posture in Parkinson's Disease researchers evaluated the effects of real-time feedback training on gait and posture in 20 patients with Parkinson's disease. They found that walking on a treadmill with visual feedback three times a week for six weeks significantly improved the patients' gait speed, stride length, cadence, and trunk flexion.

Mentally stimulating activities and social support can help manage the disease's emotional impact. Also, regular visits to the psychologist may help manage the symptoms of dementia.

Improving Quality of Life

There is little question that Parkinson's disease can have a significant impact on someone's life, but with appropriate treatment and support, it is possible to manage its symptoms and maintain a good quality of life. Seniors and caregivers must work closely with health care professionals to develop a personalized treatment plan that meets their needs.

Integrated care management services can help care recipients receiving long-term health care maintain quality care and a better quality of life in several ways:

  • Coordinated and comprehensive care: Integrated care management services provide a coordinated and comprehensive approach to care, ensuring that all aspects of the care recipient's health and well-being are addressed. This includes physical, mental, and social health and access to appropriate resources and services.
  • Improved communication: Integrated care management services facilitate communication between healthcare providers, caregivers, and family members, which helps ensure that everyone is on the same page and working towards the same goals.
  • Better outcomes: Studies have shown that integrated care management services can improve health outcomes for care recipients. This includes reducing hospital readmissions, decreasing the risk of falls and injuries, and improving the overall quality of life.
  • Personalized care: Integrated care management services consider the unique needs and preferences of the care recipient, ensuring that care is personalized and tailored to their specific situation.
  • Improved caregiver support: Caregivers often experience high levels of stress and burnout. Integrated care management services can provide caregivers with much-needed support and resources, helping them better manage their health and well-being.

When someone needs long-term health care, the family often goes into crisis mode. There are questions about how to pay for the care, the type of care services required, an appropriate plan of care that fits the care recipient's needs, and how to keep up with caregivers and the care they are providing. 

Integrated care management services can help ensure that long-term care recipients receive the best possible care and support, leading to improved quality of life and better health outcomes. This type of support reduces the stress and burdens that family members often go through when a loved one needs long-term health care.

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About the Author

Elisabet Aguirre is the Marketing Consultant at Arosa. She is currently earning her master's degree in graphic information technology.

LTC News Contributor Elisabet  Aguirre

Elisabet Aguirre

Contributor since April 26th, 2023

Editor's Note

As people age, their risk of developing Parkinson's disease increases. According to the Parkinson's Foundation, the majority of people diagnosed with Parkinson's disease are over the age of 60. Individuals may require more long-term care and support as the disease progresses, which can be costly and burdensome for families.

Long-term care for individuals with Parkinson's disease often involves assistance with daily activities, such as dressing, bathing, and grooming. Mobility can also be affected, requiring assistance with walking and transfers. As Parkinson's disease can impact cognitive function, individuals may need assistance managing medications and staying organized.

Families of loved ones with Parkinson's disease may also face emotional challenges. As the disease progresses, individuals may experience mood changes, depression, and anxiety. Providing emotional support and a safe, comfortable environment is important for the overall well-being of individuals with Parkinson's disease.

Unfortunately, health insurance and Medicare won't pay for most long-term health care. Plus, there are chronic illnesses that you might face as you get older that would require you to receive help with everyday living activities or supervision.

Since long-term health care costs are exploding, being prepared for the costs and burdens of aging is a vital part of retirement planning. Since your health can change anytime, the best time to plan is before retirement, ideally in your 40s and 0s when you still enjoy good health.

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