Putting "the broken bits together": A qualitative exploration of the impact of communication changes in dementia

Communication is an area of health and functioning that is profoundly affected by dementia. While it is known that people living with dementia and their care partners experience disruptions to daily activities and social engagement, detailed knowledge about the lived impact of dementia-related communication changes is lacking. This study sought an in-depth understanding of the lived experience of dementia-related communication changes and the associated impact, needs, and strategies.

As part of an overarching participatory design study, a qualitative (interpretive description) exploration was undertaken with people living with dementia and their care partners. Data from semi-structured interviews were analysed using thematic analysis.

We interviewed 13 people living with dementia and 21 care partners and drew three themes and 10 subthemes from the interviews. The first theme illustrates how dementia changes communication which in turn changes life; the second captures the impact of changes on people living with dementia and care partners emotionally and in the context of relationships; and the third describes some positive and constructive ways of moving forward with dementia-related communication changes.

Interventions to enhance function, participation, and wellbeing for people living with dementia and their care partners need to encompass support for communication changes. There is a need to ensure that people living with dementia feel dignified and respected during communication, and that care partners and inclusive communities are educated, trained, and supported to facilitate communication.