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Spiritual Well-Being in Family Caregivers for Those with Parkinson’s

Ann Falsey M.D.

Benzi Kluger, professor in the Department of Neurology and Medicine and director of the Palliative Care Research Center and Neuropalliative Care Service at URMC, recently studied predictors of spiritual well-being in family caregivers for individuals with Parkinson’s Disease. His work appeared in the Journal of Palliative Medicine.

Kluger has been doing work specific to palliative care for people with Parkinson’s for almost 10 years, but says his work can be applied to those caring for individuals with dementia, brain cancer, ALS and other chronic illnesses.

His team collected data on spirituality1 in hopes to more quickly be able to anticipate and identify people who are at risk for poor spiritual well-being and determine what can be done to build up resilience.

The research provides us with some directions with how we can better integrate spiritual care in the care of patients and family care partners,” says Kluger. “Spiritual care has to be part of our comprehensive care package for both families and patients.”

Our usual care models for chronic disease often don’t include caregivers, which is why the palliative care approach, which focuses on family and individuals with serious illness, is so important throughout the illness journey.

The thing we observe frequently is often times the care partner is struggling more than the patient,” says Kluger. “Suffering for someone you love can be a harder thing to let go of than your own suffering.”

Suffering itself has several dimensions, and some suffering may be deeply meaningful, according to Kluger. “This is the price of loving somebody.”

What’s exciting to him is the work toward developing a more sophisticated definition and model of suffering, but also joy, meaning, and the whole caregiver experience. And then use that to develop more supportive structures to help people going through the caregiving process.

Check out the full study.

1It’s important to define what is meant by “spiritual” in this research. The focus is not on religion, but how people connect with the world, where they find meaning. This could be nature, work, family, etc.[KJ1]