Supporting communication for patients with neurodegenerative disease

Fried-Oken, Melanie; Mooney, Aimee; Peters, Betts

doi:10.3233/nre-151241

Cited by 98 publications

(78 citation statements)

References 115 publications

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“…Based on our findings, we think that it is essential that communication partners are included when AAC is introduced, as well as that each AAC tool is very personal and therefore has to be tailored to the specific needs and abilities of each person. These findings are supported by Fried-Oken et al [26], who also state that the introduction of AAC should start early in the course of dementia and should be modified throughout disease progression. In addition, our findings suggest that the way in which the SLT in our study tailored AAC tools for each PwD is also highly important for a successful implementation in daily life.…”

Section: Discussionsupporting

confidence: 74%

Improving Communication between Persons with Mild Dementia and Their Caregivers: Qualitative Analysis of a Practice-Based Logopaedic Intervention

Olthof-Nefkens¹,

Kruse²,

Derksen³

et al. 2018

Folia Phoniatr Logop

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Objective: To identify the essential elements of a newly developed, practice-based logopaedic intervention, which focuses on communication between persons with dementia (PwDs) and their caregivers. Methods: The intervention of 6 one-hour sessions was conducted and evaluated with 4 PwD-caregiver dyads. Eighteen therapy sessions were video recorded and semi-structured interviews with all dyads and an interview with the speech-language therapist (SLT) were audio recorded. Framework analysis and triangulation were used to analyse the data. Results: Five elements were found, which were systematically applied in the treatment of all dyads: interactive history taking, dynamic assessment, education about consequences of dementia for communicative effectiveness, development and use of two communication tools, and specific didactic strategies of the SLT. Regarding the outcome of the treatment, the dyads valued the focus on the interaction between PwD and caregiver, the usefulness of the received pieces of advice, and the empowering attitude of the SLT, which improved their self-confidence. The SLT added another element for an efficient approach: the ability to deliver treatment in people’s home environment. Conclusion: A short pragmatic but consistent approach for communication problems caused by dementia seems promising for improving daily communication and reducing stress and frustration. Further research will explore the feasibility and efficacy of this approach.

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Section: Discussionsupporting

confidence: 74%

Improving Communication between Persons with Mild Dementia and Their Caregivers: Qualitative Analysis of a Practice-Based Logopaedic Intervention

Olthof-Nefkens¹,

Kruse²,

Derksen³

et al. 2018

Folia Phoniatr Logop

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“…SLPs are trained to provide compensatory strategies in addition to effective communication for persons with PPA and their families (Khayum, Wieneke, Rogalski, Robinson, & O’Hara, 2012). This individualized approach to tailoring strategies based on remaining strengths is recommended practice for adults with all forms of neurodegenerative disease (Fried-Oken, Mooney, & Peters, 2015). …”

Section: Discussionmentioning

confidence: 99%

Development of a Psycho-Educational Support Program for Individuals with Primary Progressive Aphasia and their Care-Partners

et al. 2017

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Primary progressive aphasia is a language-based dementia that initially spares other cognitive domains; however, aphasia interferes with many life roles such as work and interpersonal relationships. Psycho-educational programs, such as support groups have been shown to be effective for persons with Alzheimer’s dementia; however, little is known regarding their effectiveness for persons with primary progressive aphasia. This paper describes the development of a program that offers support, education and activities for persons with primary progressive aphasia and their care-partners and its feasibility. Development and structure of pilot and formal intervention groups are described. Thematic analysis of both groups included the following themes: (1) coping with limitations and language decline; (2) dealing with increased dependency; (3) expressing resilience and making adaptations; (4) experiencing stigma (pilot group) and confronting stigma (intervention group); (5) experiencing self-confidence; and (6) feeling a sense of belonging. The knowledge gained from this process may be useful in designing programs for individuals with aphasic dementia and preserved insight. Evidence-based data from supportive interventions for persons with primary progressive aphasia and their care-partners are needed.

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“…Ten participants used high-tech and/or low-tech AAC for communication beyond yes/no responses. [26–28] Individuals with total LIS who had no reliable means for yes/no communication were excluded. This study was approved by the university Institutional Review Board and all participants provided informed consent.…”

Section: Methodsmentioning

confidence: 99%

“…Respondents who are unable to verbally produce an answer or mark an X on a sheet of paper, as required by most instruments, can communicate their answers in other ways with the help of high-tech or low-tech AAC. [26–28] The use of augmented input,[27] with questions and response options presented in both auditory and visual formats, can help overcome obstacles related to visual, hearing, or language comprehension impairments. Question presentation may be modified to allow the use of nonverbal signals as a response modality, with or without assistance from the examiner.…”

Section: Introductionmentioning

confidence: 99%

Soliciting BCI user experience feedback from people with severe speech and physical impairments

Peters

Mooney

Oken

et al. 2016

Brain-Computer Interfaces

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Brain-computer interface (BCI) researchers have shown increasing interest in soliciting user experience (UX) feedback, but the severe speech and physical impairments (SSPI) of potential users create barriers to effective implementation with existing feedback instruments. This article describes augmentative and alternative communication (AAC)-based techniques for obtaining feedback from this population, and presents results from administration of a modified questionnaire to 12 individuals with SSPI after trials with a BCI spelling system. The proposed techniques facilitated successful questionnaire completion and provision of narrative feedback for all participants. Questionnaire administration required less than five minutes and minimal effort from participants. Results indicated that individual users may have very different reactions to the same system, and that ratings of workload and comfort provide important information not available through objective performance measures. People with SSPI are critical stakeholders in the future development of BCI, and appropriate adaptation of feedback questionnaires and administration techniques allows them to participate in shaping this assistive technology.

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Supporting communication for patients with neurodegenerative disease

Abstract: AAC should be standard practice for adults with neurodegenerative disease. Patients can maintain effective, functional communication with AAC supports. Individualized communication systems can be implemented ensuring patients remain active participants in daily activities.

Cited by 98 publications

References 115 publications

Improving Communication between Persons with Mild Dementia and Their Caregivers: Qualitative Analysis of a Practice-Based Logopaedic Intervention

Improving Communication between Persons with Mild Dementia and Their Caregivers: Qualitative Analysis of a Practice-Based Logopaedic Intervention

Development of a Psycho-Educational Support Program for Individuals with Primary Progressive Aphasia and their Care-Partners

Soliciting BCI user experience feedback from people with severe speech and physical impairments

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