Objective: To explore the beliefs and attitudes of individuals with Parkinson’s Disease (PD) (and partners) regarding discussions about topics that include sexual function, intimacy and relationships. Secondary objectives include exploring opinions on existing consumer handouts on these subjects.

Background: There are changes in sexual function, intimacy and relationships after a diagnosis with PD. Intimacy and sexual expression are critical for healthy relationships and contribute to quality of life. It is not clear whether people with PD or their partners wish to discuss these issues with health professionals.

Method: qualitative descriptive study with separate semi-structured interviews of both people with PD and partners of someone with PD (non-dyadic). Inclusion criteria included having a diagnosis of idiopathic PD (newly diagnosed -severe disease severity) or be a partner of someone with PD, over 18 years old, telephone MMSE score ≥23 and had yearly contact with a health professional.

Results: 10 people with PD and 10 partners of someone with PD were interviewed (9M: 11F). Participants were on average 67 years old, were diagnosed at 63 and included three people identifying as not in a relationship. Participant median MMSE score was 26.  Mean interview length was 38 minutes. People with PD and partners identified several changes in sexual function, intimacy and close personal relationships after a diagnosis of PD. Participants reported finding other ways to experience intimacy such as sexual aids and non-sexual touch but 30% stating ongoing frustrations in these domains. Single individuals reported difficulties with dating due to feelings of embarrassment. Partners revealed conflicting emotions regarding their caring role and feelings of guilt about time for themselves. Only 10% of participants reported that their treating health professionals had initiated conversations on these topics and none had seen online or written content, and when shown found them too long or technical.

Conclusion: People with PD and their partners identify changes in many aspects of their sexual function, intimacy and relationships and want to talk about these topics with their treating health professionals. Participants were unaware and unsatisfied with resources available.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/exploring-sexuality-intimacy-and-relationship-changes-in-people-with-parkinsons-disease-and-their-partners-what-do-they-want-to-know-and-how-can-we-help/