Objective: To describe the reasons for care partner contacts and to ascertain if there are gender differences in topic and time of contact, using ten years of experience from the Parkinson’s Foundation Helpline.

Background: The Parkinson’s Foundation established its Helpline in 2010 to provide the Parkinson’s community with a place to (1) find answers for their general questions regarding PD, (2) provide referrals to health professionals, support groups and exercise classes, (3) provide educational materials in various print and digital forms, and (4) to provide emotional support. Social workers, nurses, and health educators staff the Helpline in both English and Spanish from 9am to 8pm EST, five days a week. In the past ten years, the Helpline has heard from spouses and partners more than ten thousand (10,000) times. Requests for information cover the entire spectrum of needs of a community dealing with a chronic and progressive diagnosis. They range from straightforward requests for information and/or referrals to complex social support that includes the need to discuss a complex and challenging situation with someone who really understands Parkinson’s to the heart-wrenching decisions about nursing home placement or hospice care and the occasional crisis of hallucinations and delusions seen in Parkinson’s psychosis. Family members of persons with Parkinson’s – and especially the primary care partner – need as much information, referrals and support as the individual living with the diagnosis.

Method: Case reasons for interactions with the Parkinson’s Helpline from spouses or partners will be stratified by category, which will include: need for information (including publication requests), referrals to specialty care, referrals to support, exercise and rehabilitative groups or services, emotional support for family issues and financial assistance.

Results: Over 10,000 cases have been collected during the past ten years and will be analyzed using frequency statistics. Initial analysis indicates that approximately 80% of cases are from female spouses and partners. Further analysis will be conducted to determine whether gender differences exist between case reasons.

Conclusion: Care partners have a broad array of reasons for reaching out to the Parkinson’s Foundation Helpline. A descriptive analysis will inform health care and mental health professionals of unmet needs and support the development of additional support services.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/care-partners-in-parkinsons-who-calls-the-parkinsons-foundation-helpline-and-why/