Exploring Oral Self-Care Practices and Concerns of Community-Dwelling Individuals Living with Dementia and Their Care Partners

Dementia is a progressive disorder that affects thinking and memory. One of the most significant day-to-day impacts of dementia is the loss in ability to complete basic activities of daily living (ADLs), such as oral care. Toothbrushing is a multi-step task that individuals living with dementia often experience difficulty completing independently due to forgetting the need or even how to brush their teeth and/or dentures. The objective of this study was to explore the practices and concerns around oral self-care from the perspective of community-dwelling individuals living with dementia (ILDs) and their care partners (CPs). A qualitative exploratory design was employed using focus group (FG) sessions. Partnership with the Alzheimer Society of Alberta & Northwest Territories (ASANT) facilitated the recruitment of CP and ILD participants. Twenty CP participants participated in one of three FGs (N=7; 7; 6); seventeen CP participants identified themselves as an ILD’s spouse and three as a child of an ILD. These participants were primary care partners to people living with various ASANT-specific classifications of dementia including early-stage, young-onset, and respite. Nine ILD participants were also recruited, all of which had CPs participating in the FG sessions. Early-stage and young-onset ILD participants took part in one of two FGs (N=6; 3). The FG sessions were conducted separately but simultaneously; one group consisting of CP participants, and one group of ILD participants. FGs were guided by a series of semi-structured questions that were asked verbally and provided in-text for reference. Oral care props were used in ILD focus groups as triggers to allow for deeper and more dental-oriented discussions. FG sessions lasted 90-minutes and were audio and video recorded to complement recall. Data were transcribed by a professional; transcripts were reviewed and enhanced with descriptive and nonverbal details obtained from video recordings by the research team. Content analysis of transcript data consisted of open coding, categorization, and abstraction. Two co-supervisors also coded each transcript and discussion resolved any differences in interpretations. While ILD participants were categorized using clinical diagnostic criteria, there was little correspondence between their reported level of independence and the oral care practices they discussed. CP participants strove to contextualize oral care as one dimension of preserving autonomy and humaneness of their loved one. Oral care practices reflected a continuum of independence ranging from wholly or partially independent to wholly dependent. All ILD participants reported being wholly independent in oral care and stressed the maintenance of their remaining capacities until the time when tasks would be delegated for them. Strategies used to ensure oral care included relying on embodied habits (e.g. toothbrushing), providing supportive aids (e.g. setting out toothbrush), verbal reminders, and physical interventions. Difficulties were encountered when an ILD resisted support because of their claim of independence or when an ILD stressed the simplicity these engrained habits as these behaviours were instilled at a young age. CP and ILD participants were cognizant that strategies to promote oral care had to change over time, although some CPs realized during the FG sessions, their current practices were insufficient to meet the needs of their loved ones. CP participants struggled to identify key transition points that indicated a different level of assistance was required as oral care was assumed to be an embodied and persistent habit. CPs need support in accurately determining an ILD’s actual abilities, as well as, strategies to gain cooperation as CPs enter into a more assistive role. Implications of this study include the need for anticipatory guidance in discussing and educating CPs around behavioural indicators to watch for as the ILD progresses through the various levels of independence. In addition, this study will allow for better cognitive assessments to take place in dental clinics by asking direct questions that probe into contextual information that may indicate the ILDs capacity for oral self-care has deteriorated, for example asking whether or not the level of toothpaste and/or floss has changed? Dental hygienists are well-situated to provide appropriate interventions and homecare strategies, which could decrease disjunction between what CPs think, what ILDs report, and what oral self-care practices actually take place. Dental hygienists contribute to maintaining adequate oral health for ILDs, that could, in turn, improve their quality of life in the community.

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