“A million miles from how they used to be”: Understanding conversations from the perspective of people with dementia, family, and professionals

Dementia causes conversational difficulties for the person and those close to them due to the ubiquity of language and cognitive problems. Little is known about the experience of conversations from the perspective of people with dementia and their conversation partners (CPs). This study aims to understand experiences of conversations through consultation with people with dementia, those close to them, and dementia professionals, and how people are supported when they experience difficulties communicating. Nine people with a range of dementia diagnoses and six CPs (spouses), all community-dwelling, attended an in-person focus group in one of two locations. Sixteen dementia professionals attended online focus groups. Focus groups were recorded and analysed using reflexive thematic analysis. Four themes were identified: the impact of conversation changes for the person with dementia and CP, conversation and dementia identity, support for conversation, and conversation and person-centred care. Language and memory changes impacted conversations and relationships. Societal stigma also affected conversations. Support for conversation was perceived to be scarce. The need for education and training to equip families to maintain conversation was emphasised. Supporting conversation was seen as fundamental to maintaining relationships and as a mechanism for professionals to deliver person-centred care.