Palliative care—which treats serious illness with a team of professionals including physicians, nurses, social workers, physical therapists, occupational therapists, and mental health counselors—can be an effective way to help Parkinson’s patients and their families optimize their quality of life. A whole-person approach that emphasizes compassionate care, palliative care addresses the medical side of the disease as well as the emotional, spiritual, and practical implications for both patients and their families.
What Is Palliative Care Set Up to Do?
Gwen Harris, Geriatric Care Manager for the palliative care team at Seniors At Home, works with physicians, chaplains, social workers, and volunteers who are trained to offer patients bedside support. Harris explains, “We are an interdisciplinary team trying to figure what is most important to a patient and their family with a focus on the whole person, not the illness. Our goal of care is to be an extra layer of support to patient and their family by addressing difficult physical symptoms and emotional/psychological concerns.”
At a recent Seniors At Home event, Harris interviewed Dr. Maya Katz, associate professor of neurology at the Stanford School of Medicine. Katz specializes in treating patients with Parkinson’s disease, essential tremor, dystonia, and other movement disorders.
“Palliative care is a team sport,” Katz explains. “The physician is trained to focus on physical symptoms, but we need a social worker, a nurse, and a chaplain to fully address the total person.”
Palliative Care Can Address the Mental Health Challenges of Parkinson’s Disease
Parkinson’s disease causes changes in chemicals (which Katz refers to as “coping molecules”) made by the brain to help regulate mood, motivation, energy, and sleep, among other important factors. As a result, Parkinson’s patients have a high rate of depression and anxiety. Medication is often prescribed to replace those chemicals, putting Parkinson’s patients in a better position to address their illness.
“You can’t pick yourself up by the bootstraps if Parkinson’s has taken away the boots—and the boots are the coping molecules,” says Katz. “Sometimes patients are resistant to taking these medications, and I tell them, you wouldn’t tell a diabetic to get through your diabetes without insulin.”
Harris says that palliative care also teaches additional tools that can help improve the mental health of Parkinson’s patients:
- Serious illness affects the whole family, so resiliency is critical for both Parkinson’s patients and their care partners. Resiliency is a learned skill that allows people to bounce back by building a positive mindset. One way of doing this is through a gratitude practice, which can help change the focus of the brain to a more positive state.
- “Connection is protection,” says Katz. Making the time to maintain relationships to one’s loved ones and one’s community can help people engage in the world, and can improve their quality of life.
- Thinking beyond the now. It’s natural for people with Parkinson’s to focus on their worries. But it’s important for patients—and their loved ones—to think about hopes and goals, as well. “What are the things that bring you strength, and a sense of peace, and recharge you? How can we help bring those things back into your life?” asks Katz.
When Should Palliative Care Begin?
It’s best to bring in palliative care as soon as a person is diagnosed with a serious illness, says Harris, to provide compassion and support while the patient and their family adjust to difficult news. Palliative care is sometimes confused with hospice, which is meant to support people at the end of life. Gwen explains the difference: “Palliative care is not the same as hospice. We support people who are recently diagnosed with a serious or chronic illness with medical care planning, and we provide emotional and spiritual support for the distress and grief that diagnosis brings.”
A Parkinson’s diagnosis can introduce uncertainty and stress for both the patient and their loved ones. Palliative care addresses the medical needs as well as emotional, spiritual, and practical concerns for everyone involved. By focusing on the whole person, palliative care can help maximize the quality of life for everyone touched by the disease.
Seniors At Home is here to help. If you or someone you care about needs assistance, please reach out to us at 415-529-5981 or contact us online. Seeking support and understanding helps us—and our loved ones—enjoy a higher quality of life and make the most of our time together.
Seniors At Home is a division of Jewish Family and Children’s Services, a trusted nonprofit institution that has been providing care since 1850. Our services are funded by fees and by donations for those who cannot afford the full cost of care for these critical services.