Research Round Up: The Role of Spiritual Care in Maintaining Identity and Dignity In People with Parkinson’s

Every year, the Parkinson's Foundation hosts the Centers of Excellence Leadership Conference, where leaders from our 42 Centers of Excellence — medical centers located around the world with the world's leading Parkinson's specialists — attend and present their cutting-edge research and expert care findings. At this year's conference, Rabbi Rena Arshinoff — who specializes in the spiritual needs of people with Parkinson's and movement disorders, grief and healing — gave a compelling speech titled "Maintaining Identity and Dignity in Parkinson's Patients and Their Families: The Role of Spiritual Care."

As Rabbi Arshinoff put it, spiritual care is not only about religion. Religion actually seldom plays the primary role in the overall amount of spiritual counseling she provides. Everyone has their own spirituality, sometimes religion happens to be a part of it.

Through her experience, Rabbi Arshinoff believes that all people with PD, regardless of how far symptoms have progressed, still need to experience love, friendship, morality, contribution to society, opinions, ideas and a sense of wholeness. As the body and voice change over time due to PD, all of these factors are influenced.

When people can't predict their fluctuation in symptoms and are worried about going to a new place where they don't know where the bathroom is, they tend to not leave their house as often or at all. This often makes it difficult for someone to maintain their identity and role in a community. Rabbi Arshinoff finds that because of the physical aspect of PD, people can choose to stop talking before their voice physically disappears. When people stop using their voice it can quickly lead to shame, sadness or disappointment. When people lose their ability to speak, they suffer and their caregiver suffers. At this stage people find it difficult to express thanks to caregivers when life is so unhappy.

Rabbi Rena Arshinoff strives to help people find shalem (wholeness) and shalom (peace). Many people with Parkinson's wonder if God is punishing them or express anger towards God. Rabbi Arshinoff says it is okay to feel these things and that spirituality can be used to cope with the physical, cognitive and spiritual changes that need to be addressed.

Through experience, Rabbi Arshinoff identifies factors that play the largest roles in helping someone with Parkinson's maintain their identity and dignity:

  • Relationships: Even if speech is not possible, people with PD respond to a familiar face, a memory, a touch, a compliment and presence of someone who cares. Keeping and strengthening relationships is essential to helping someone maintain their identity.
  • Attentiveness: Each person is created uniquely and deserves recognition. Rabbi Arshinoff finds the most powerful tool is to speak directly to the person with PD. People can tend to speak to a caregiver instead. This small act means a lot, especially if the voice has weakened. Really listen, even if you find your ear practically next to their mouth.
  • Identity: Parkinson's can make people feel unfamiliar with their own body or mind. Spiritually, it can be likened to wandering the wilderness. Encourage ongoing participation in enjoyable and meaningful activities. Directly acknowledge the loss of roles, but also recognize previous professional and personal accomplishments.
  • Community: In Judaism community is integral. It is important for people with PD, especially those with cognitive symptoms, to remain part of a community. Isolation is often a precursor to decline. PD programs and groups provide stimulation, exercise and a friendly environment, and act as a respite for family. Religious services also provide a sense of community.
  • Memory: A person with PD can experience changes in memory. To help boost memory during a conversation: smile, touch, describe your last visit and what you discussed. Revisit shared memories like travels, hobbies and interests.
  • Burden: People with PD often say they feel like a burden. Rabbi Arshinoff addresses this spiritually by proposing that as an image of God one is not a burden. Has God ever been a burden?
  • Shmirat Haguf (care for the body) for family: PD can affect the entire family. Caregivers get burnt out – physically, emotionally and spiritually. They need support and respite too. It is vital for caregivers to take care of themselves and ask for help.
  • Search for Hope and Dignity: People with PD, their family and friends should speak often. Learn body language identifiers. Directly ask how the person with PD feels emotionally and spiritually. Discussing current interests helps remind them of their personhood. Relive past achievements and recognize current ones, no matter how small they may seem.

For more about spirituality and Parkinson's, read about spiritual tools on our CareMAP: Managing Advanced Parkinson's site.

Following Rabbinic Ordination in 2008 at Hebrew Union College-Jewish Institute of Religion (Reform), Rabbi Rena trained in hospital chaplaincy and became board certified as a chaplain with the Canadian Association for Spiritual Care. She also holds a Certificate in Bereavement Education and a Certificate in Grief and Trauma Counselling. Prior to her rabbinical training, Rabbi Rena was a Registered Nurse in Montreal. She holds a BSc from Concordia University and completed a MHSc degree in Epidemiology at University of Toronto and worked for 20 years in clinical research. Rabbi Rena is a Board member of Neshama: Association of Jewish Chaplains and is currently pursuing a PhD in Palliative Care from Lancaster University in England. She also volunteers with Bereaved Families of Ontario in the Children’s Program and the Infant Loss Program as a group facilitator and Professional Advisor.

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