Lost for words: Perspectives and experiences of people with primary progressive aphasia and Alzheimer’s disease and their families of participation in a lexical retrieval intervention

Abstract

Purpose: Previous qualitative research involving family members’ experiences of living with a person with dementia has consistently revealed themes of reduced connectedness and reciprocity of communication, highlighting the importance of education, support and practical strategies to facilitate communication within families. This study aimed to evaluate the perspectives and experiences of both family members and people with dementia following participation in a targeted speech-language pathology intervention involving people with primary progressive aphasia (PPA) and Alzheimer’s disease (AD) and their family members.

Method: Semi-structured interviews of eight people with dementia (six PPA, two AD) and 10 family members were conducted following an intervention to increase lexical retrieval within functional contexts. Thematic analysis was used to analyse the interview transcripts.

Result: Two themes common to participants with dementia and family members emerged: (1) perceived benefits of the intervention and (2) lack of previous information on communication difficulties. Two separate themes emerged for people with dementia, predominantly people with PPA, involving: (1) improved communication and (2) increased participation. Three separate themes emerged for family members: (1) increased awareness and knowledge, (2) increased value of interaction and engagement and (3) uncertainty of the future.

Conclusion: The findings of this qualitative study revealed a range of perspectives on the experiences of client and family participants following a communication focussed intervention, examining both the nature of perceived direct gains and gaining insight into the issues faced by these client populations and their families. The provision of individualised information and education should be a fundamental human right for all people with communication impairment with greater attention given to people with progressive conditions where such needs are not currently met.

Keywords:

• primary progressive aphasia
• Alzheimer’s disease
• qualitative research
• family members
• lexical retrieval intervention

Acknowledgements

We would like to thank the participants and family members for their willingness to engage in the evaluation process.

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the article.

Supplementary material

Supplemental data for this article can be accessed at http://dx.doi.org/10.1080/17549507.2019.1625439

Additional information

Funding

This work was supported by the Dementia Australia Research Foundation and Curtin University through the Australian Government Research Training Programme.