A Qualitative Exploratory Study of Informal Carers’ Experiences of Identifying and Managing Oral Pain and Discomfort in Community-Dwelling Older People Living with Dementia

Increased prevalence of dementia and poor oral health in older people is associated with more people living with dementia who experience oral pain and discomfort. However, little is known about how informal carers manage oral pain for people living with dementia in the community. This study aimed to explore informal carers’ experiences of identifying and managing oral pain and discomfort in people living with dementia, and barriers and enablers they encountered. Focus groups with informal carers of people living with dementia were conducted, transcribed verbatim, and analysed using thematic analysis. Carers’ accounts suggested that day-to-day contact was required to identify oral pain and discomfort, and a symptomology of the signs and symptoms was developed. Carers’ accounts also highlighted issues in maintaining oral health, difficulties in accessing the mouth, managing dentures, competing demands, and difficulties in accessing treatment due to health service-, behavioural- and treatment- related barriers. Enablers included informal carers’ pivotal role in the identifying and managing oral pain and discomfort in people living with dementia. The study concludes that carers want more partnership work with dental professionals, and clearer care pathways are required to meet the oral health needs of people living with dementia who experience oral pain