Primary Progressive Aphasia Education and Support Groups: A Clinical Evaluation

Cathleen Taylor-Rubin; Lisa Azizi; Karen Croot; Lyndsey Nickels

doi:10.1177/1533317519895638

Primary Progressive Aphasia Education and Support Groups: A Clinical Evaluation

Am J Alzheimers Dis Other Demen. 2020 Jan-Dec:35:1533317519895638. doi: 10.1177/1533317519895638.

Authors

Cathleen Taylor-Rubin^{1

2

3}, Lisa Azizi⁴, Karen Croot^{2

3

5}, Lyndsey Nickels^{2

3}

Affiliations

¹ Speech Pathology Department, War Memorial Hospital, Sydney, New South Wales, Australia.
² Department of Cognitive Science, Macquarie University, Sydney, New South Wales, Australia.
³ ARC Centre of Excellence in Cognition and Its Disorders, Sydney, New South Wales, Australia.
⁴ Psychology Department, War Memorial Hospital, Sydney, New South Wales, Australia.
⁵ School of Psychology, University of Sydney, New South Wales, Australia.

Abstract

Objectives: To evaluate the benefits of a primary progressive aphasia (PPA) education and support session for people with PPA (pwPPA) and their caregivers.

Method: Thirty-eight individuals (20 pwPPA, 18 caregivers) were invited to participate in the study. Twenty-five individuals (12 pwPPA, 13 caregivers) completed questionnaires before and after an education and support group session provided by a speech pathologist and a clinical psychologist. Seven individuals (2 pwPPA, 5 caregivers) participated in follow-up interviews.

Results: After one attendance, caregivers reported significant improvement in knowledge of PPA, strategies to manage worry and low mood, and opportunities to meet peers. Themes at interview were reduced feelings of isolation, increased feelings of support, increased knowledge of coping strategies, and improved understanding of PPA. Caregivers who had attended previous sessions reported increased feelings of well-being and support.

Implications: Primary progressive aphasia education and support group sessions in the postdiagnostic period constitute a valuable component of comprehensive care for PPA.

Keywords: communication; dementia; education; group intervention; primary progressive aphasia; support.

Publication types

Evaluation Study
Research Support, Non-U.S. Gov't

MeSH terms

Adaptation, Psychological*
Aphasia, Primary Progressive / psychology*
Caregivers / psychology*
Dementia / psychology
Female
Humans
Male
Patient Education as Topic*
Quality Improvement
Self-Help Groups*
Surveys and Questionnaires