Involving Family Caregivers in Developing an Intervention for Assessing Risk of Dental Pain in Individuals Living with Dementia

Background: Experiences of dental pain among older people living with dementia, particularly those residing in care homes, have been identified as an under-researched area. There is an urgent need for initiatives, co-developed with experts according to their experience, to address key challenges for oral health improvement among older people living with dementia. This paper reports the findings from a participatory activity which informed the development of an intervention. Methods: Informed by discussions with a prominent PPI representative in the field of caring for persons with dementia and a prior multi-disciplinary stakeholder event, a discussion involving ten caregivers of individuals with dementia was conducted. Caregivers were invited from different regions of the UK, with seven joining an online group discussion and three engaging in one-on-one conversations. Transcripts of the conversations based on three topics of discussion (dental experiences, dental challenges and thoughts on a dental pain risk assessment tool) were analysed using thematic analysis to inform a proposed co-developed model of an intervention which can improve dental care for those living with dementia. Results: Areas which informed the next phase of discussions and intervention development were access to dental services, lack of alignment between dental care services and health and social care, and low support for carers in how to carry out mouthcare, specific to the type of dementia lived with. Carers felt that preventing, monitoring and managing dental pain should form part of the care package and that it should not be the responsibility of the carer to conduct a dental pain risk assessment. The key recommendation made by carers was the need for a multi-component intervention. This should be flexible according to individual needs and provide education and support to carers to assist with mouthcare, with responsibility for assessing dental pain risk sitting firmly with a nominated professional. Conclusions: Our findings from this discussion group with carers of persons living with dementia identified which areas of mouthcare responsibility should be part of the unpaid caring role and which should form part of a healthcare professional role. This shaped a final stakeholder event and facilitated the development of a grant proposal (which includes one of the caregivers as a co-investigator) to test a co-developed intervention for the prevention of dental pain in persons living with dementia.