A Life Participation Approach to Primary Progressive Aphasia Intervention

Abstract

Primary progressive aphasia (PPA) is a clinical neurodegenerative dementia syndrome characterized by deficits in spoken and written word retrieval, word usage, and/or word comprehension. Currently, there are no effective treatments to reverse or halt the underlying disease process; however, speech–language therapy may be helpful. The Communication Bridge Care Model was developed to address the unique communication and quality of life needs of individuals living with PPA. The core elements include person-centered care with dyadic instruction for disease education, and counseling, along with tailored levels of impairment- and compensatory-based communication strategy training. Our multicomponent approach incorporates guidance from the Life Participation Approach for Aphasia, including client-directed assessment and interventions that aim to maximize functional communication and participation in desired life activities. The direct and indirect use of technology is integrated into our tailored model of care to facilitate achievement of the client's functional goals. Here, we describe how to practically apply the Communication Bridge Care Model across treatment settings, including case examples from the Communication Bridge research study. This approach to care provides an opportunity to maximize communication effectiveness and quality of life for individuals living with PPA throughout the course of disease.

Keywords

Frontotemporal dementia - Alzheimer's disease - speech–language pathology - communication disorders - dementia

Financial Disclosure

This manuscript was supported by DC008552 from the National Institute on Deafness and Other Communication Disorders; AG055425, AG13854, and AG056258 from the National Institute on Aging; NS075075 from the National Institute of Neurological Disorders and Stroke (NINDS); the Alzheimer's Association; and the Association for Frontotemporal Degeneration; this is not an industry-sponsored study. B.K. is the President of MemoryCare Corporation, and an employee of MemoryCare Corporation. The authors have no additional disclosures to report.

• References

• 1 Mesulam MM. Slowly progressive aphasia without generalized dementia. Ann Neurol 1982; 11 (06) 592-598
• 2 Mesulam MM, Rogalski EJ, Wieneke C. , et al. Primary progressive aphasia and the evolving neurology of the language network. Nat Rev Neurol 2014; 10 (10) 554-569
• 3 Mesulam MM, Wieneke C, Thompson C, Rogalski E, Weintraub S. Quantitative classification of primary progressive aphasia at early and mild impairment stages. Brain 2012; 135 (Pt 5): 1537-1553
• 4 Gorno-Tempini ML, Dronkers NF, Rankin KP. , et al. Cognition and anatomy in three variants of primary progressive aphasia. Ann Neurol 2004; 55 (03) 335-346
• 5 Mesulam M, Wieneke C, Rogalski E, Cobia D, Thompson C, Weintraub S. Quantitative template for subtyping primary progressive aphasia. Arch Neurol 2009; 66 (12) 1545-1551
• 6 Croot K, Nickels L, Laurence F, Manning M. Impairment- and activity/participation-directed interventions in progressive language impairment: clinical and theoretical issues. Aphasiology 2009; 23 (02) 125-160
• 7 Carthery-Goulart MT, da Silveira ADC, Machado TH. , et al. Nonpharmacological interventions for cognitive impairments following primary progressive aphasia: a systematic review of the literature. Dement Neuropsychol 2013; 7 (01) 122-131
• 8 Murray LL, Paek EJ. Behavioral/nonpharmacological approaches to addressing cognitive-linguistic symptoms in individuals with dementia. Perspect ASHA Spec Int Groups 2016; 1 (15) 12-25
• 9 Taylor C, Kingma RM, Croot K, Nickels L. Speech pathology services for primary progressive aphasia: exploring an emerging area of practice. Aphasiology 2009; 23 (02) 161-174
• 10 Riedl L, Last D, Danek A, Diehl-Schmid J. Long-term follow-up in primary progressive aphasia: clinical course and health care utilisation. Aphasiology 2014; 28 (8–9): 981-992
• 11 Douglas NF, Hinckley JJ, Haley WE, Andel R, Chisolm TH, Eddins AC. Perceptions of speech-language pathologists linked to evidence-based practice use in skilled nursing facilities. Am J Speech Lang Pathol 2014; 23 (04) 612-624
• 12 Nickels L, Croot K. Progressive language impairments: intervention and management. Aphasiology 2009; 23 (02) 123-124
• 13 Kortte KB, Rogalski EJ. Behavioural interventions for enhancing life participation in behavioural variant frontotemporal dementia and primary progressive aphasia. Int Rev Psychiatry 2013; 25 (02) 237-245
• 14 Kagan A, Simmons-Mackie N, Rowland A. , et al. Counting what counts: a framework for capturing real-life outcomes of aphasia intervention. Aphasiology 2008; 22: 258-280
• 15 Kagan A, Simmons-Mackie N. Beginning with the end: outcome-driven assessment and intervention with life participation in mind. Top Lang Disord 2007; 27 (04) 309-317
• 16 Simmons-Mackie N, Damico JS. Intervention outcomes: a clinical application of qualitative methods. Top Lang Disord 2001; 22 (01) 21-36
• 17 Rogalski EJ, Saxon M, McKenna H. , et al. communication bridge: a pilot feasibility study of Internet-based speech-language therapy for individuals with progressive aphasia. Alzheimers Dement (N Y) 2016; 2 (04) 213-221
• 18 Nickels L, Croot K. Understanding and living with primary progressive aphasia: current progress and challenges for the future. Aphasiology 2014; 28 (8–9): 885-899
• 19 Galvin JE, Howard DH, Denny SS, Dickinson S, Tatton N. The social and economic burden of frontotemporal degeneration. Neurology 2017; 89 (20) 2049-2056
• 20 Diehl-Schmid J, Pohl C, Perneczky R, Hartmann J, Förstl H, Kurz A. [Initial symptoms, survival and causes of death in 115 patients with frontotemporal lobar degeneration]. Fortschr Neurol Psychiatr 2007; 75 (12) 708-713
• 21 Dickerson BC. Quantitating severity and progression in primary progressive aphasia. J Mol Neurosci 2011; 45 (03) 618-628
• 22 Morhardt D, Weintraub S, Khayum B. , et al. The CARE pathway model for dementia: psychosocial and rehabilitative strategies for care in young-onset dementias. Psychiatr Clin North Am 2015; 38 (02) 333-352
• 23 World Health Organization. International Classification for Functioning, Disability and Health (ICF). Geneva, Switzerland, 2001
• 24 Weintraub S, Morhardt D. Treatment, education, and resources for non-Alzheimer dementia: one size does not fit all. Alzheimers Care Today 2005; 6 (03) 201-214
• 25 Bourgeois M, Brush J, Douglas N, Khayum R, Rogalski E. Will you still need me when I'm 64, or 84, or 104? The importance of speech-language pathologists in promoting the quality of life of aging adults in the United States into the future. Semin Speech Lang 2016; 37 (03) 185-200
• 26 McFarlane LA. Motivational interviewing: practical strategies for speech-language pathologists and audiologists. Can J Speech-Lang Pathol Audiol 2012; 36: 8-16
• 27 Simmons-Mackie N, Kagan A, Victor JC. , et al. The assessment for living with aphasia: reliability and construct validity. Int J Speech-Lang Pathol 2014; 16 (01) 82-94
• 28 Schlosser RW. Goal attainment scaling as a clinical measurement technique in communication disorders: a critical review. J Commun Disord 2004; 37 (03) 217-239
• 29 Weldring T, Smith SM. Patient-reported outcomes (PROs) and patient-reported outcome measures (PROMs). Health Serv Insights 2013; 6: 61-68
• 30 Manual Updates to Clarify Skilled Nursing Facility (SNF), Inpatient Rehabilitation Facility (IRF), Home Health (HH), and Outpatient (OPT) Coverage Pursuant to Jimmo vs. Sebelius. Department of Health and Human Services: Centers for Medicare and Medicaid Services. Pub 100–02 Medicare Benefit Policy 2014: 179
• 31 Holland AL, McBurney DH, Moossy J, Reinmuth OM. The dissolution of language in Pick's disease with neurofibrillary tangles: a case study. Brain Lang 1985; 24 (01) 36-58
• 32 Murray LL. Longitudinal treatment of primary progressive aphasia: a case study. Aphasiology 1998; 12 (7–8): 651-672
• 33 Kagan A, Black SE, Duchan FJ, Simmons-Mackie N, Square P. Training volunteers as conversation partners using “Supported Conversation for Adults with Aphasia” (SCA): a controlled trial. J Speech Lang Hear Res 2001; 44 (03) 624-638
• 34 Medina J, Weintraub S. Depression in primary progressive aphasia. J Geriatr Psychiatry Neurol 2007; 20 (03) 153-160
• 35 Holland AL, Nelson RL. Counseling in Communication Disorders: A Wellness Perspective. 2nd ed. San Diego, CA: Plural Publishing Inc.; 2014
• 36 Beeson PM, King RM, Bonakdarpour B, Henry ML, Cho H, Rapcsak SZ. Positive effects of language treatment for the logopenic variant of primary progressive aphasia. J Mol Neurosci 2011; 45 (03) 724-736
• 37 Rosenbek JC, Lemme ML, Ahern MB, Harris EH, Wertz RT. A treatment for apraxia of speech in adults. J Speech Hear Disord 1973; 38 (04) 462-472
• 38 Youmans G, Holland A, Muñoz M, Bourgeois M. Script training and automaticity in two individuals with aphasia. Aphasiology 2005; 19 (3–5): 435-450
• 39 Beeson PM, Hirsch FM, Rewega MA. Successful single word writing treatment: experimental analysis of four cases. Aphasiology 2002; 16 (4–6): 473-491
• 40 Fried-Oken M, Beukelman DR, Hux K. Current and future AAC research considerations for adults with acquired cognitive and communication impairments. Assist Technol 2011; 24 (01) 56-66
• 41 Khayum B, Wieneke C, Rogalski E, Robinson J, O'Hara M. Thinking outside the stroke: treating primary progressive aphasia (PPA). Perspect Gerontol 2012; 17 (02) 37-49
• 42 Holland AL, Weinberg P, Dittelman J. How to use apps clinically in the treatment of aphasia. Semin Speech Lang 2012; 33 (03) 223-233