| Title: |
'Communication Is Difficult': Speech, Language and Communication Needs of People with Young Onset or Rarer Forms of Non-Language Led Dementia |
| Language: |
English |
| Authors: |
Anna Volkmer (ORCID 0000-0002-4149-409X); Lisa Cross; Lily Highton; Connie Jackson; Chloe Smith; Emilie Brotherhood; Emma V. Harding; Cath Mummery; Jonathan Rohrer; Rimona Weil; Keir Yong; Sebastian Crutch; Chris J. D. Hardy |
| Source: |
International Journal of Language & Communication Disorders. 2024 59(4):1553-1577. |
| Availability: |
Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us |
| Peer Reviewed: |
Y |
| Page Count: |
25 |
| Publication Date: |
2024 |
| Document Type: |
Journal Articles; Reports - Research |
| Descriptors: |
Speech Communication; Needs; Dementia; Speech Therapy; Barriers; Social Isolation; Caregiver Role; Speech Language Pathology |
| DOI: |
10.1111/1460-6984.13018 |
| ISSN: |
1368-2822; 1460-6984 |
| Abstract: |
Background: People with behavioural variant frontotemporal dementia, Lewy body dementia, posterior cortical atrophy and young onset Alzheimer's disease may experience language and communication difficulties. However, the role of speech and language interventions for people with these non-language led dementias has received little attention. Aims: This study aimed to explore the experiences and perspectives of people living with these conditions, and their families, regarding their language and communication difficulties and how speech and language therapy could address these needs. Methods: This study employed a qualitative design to explore the experiences of people living with or caring for somebody with behavioural variant frontotemporal dementia, Lewy body dementia, posterior cortical atrophy or young onset Alzheimer's disease, and to understand their opinions about speech and language therapy. Participants were recruited from a support service connected to a dementia clinic to attend one of five focus group meetings. Videorecorded focus groups and interviews were transcribed, and reflexive thematic analysis was used to analyse data from people affected by each type of dementia. Results: A total of 25 participants were recruited to the study, with representation across the different forms of non-language led dementias. The four main themes identified were: (1) communication difficulties as a key difficulty, (2) loss and loneliness, (3) speech and language therapy, and (4) the role of the caregiver. Sixteen subthemes were also identified which highlighted individual issues across disease types. Discussion: Although all the forms of dementia studied here are not considered to be language-led, people with these conditions and/or their care partners identified speech, language and communication as common challenges. These communication difficulties were reported to have a negative impact on their social participation and mental health and participants felt speech and language interventions could help. There is a need for research exploring speech and language interventions developed for and with people with non-language led dementias and their care partners, to ensure they meet the needs of the people they are designed for. |
| Abstractor: |
As Provided |
| Entry Date: |
2024 |
| Accession Number: |
EJ1431263 |
| Database: |
ERIC |