"If you don't sort out these problems, you end up building problems": a qualitative study exploring mouthcare at home with people with Parkinson's and their partners in care.

Abstract

To explore the experiences of people with Parkinson's (PwP) and their partners in care, of performing mouthcare activities at home. This qualitative study used semi-structured interviews, conducted with 20 individuals: 13 people with Parkinson's and 7 partners in care. The interviews were adapted to ensure inclusivity of participants experiencing the different symptoms of Parkinson's. Data was analysed inductively using a reflexive thematic analysis approach. Three themes were identified: maintaining normality, familiar and unexpected problems, and negotiating help. Motor and non-motor barriers to performing mouthcare at home included reduced dexterity, fatigue, apathy, and the practical challenges of accessing the bathroom and finding the time and focus to perform the activity. Participants had developed small adaptations and strategies to help manage these challenges. Oral health was considered a personal, not often talked about activity, creating a dilemma for partners in care who could see that support was needed but were uncertain how and when to offer it. Findings of this study highlight a variety of challenges experienced by PwP in performing mouthcare at home. A proactive, multidisciplinary approach providing earlier information and tailored practical support will be beneficial in supporting PwP to maintain their oral health at home.