Life Participation and Neurogenic Communication Disorders: An Evolution

By Audrey Holland
June 29, 2020

Last year (2019), Amy Hansen asked me to organize a series of webinars for on the topic of the Life Participation Approach to Aphasia (LPAA).  I jumped at the chance and immediately started to formulate a plan to move beyond LPAA’s already well-recognized impact on the development of aphasia groups and programs across the nation. My intention was to introduce subscribers to some other innovative applications of LPAA’s principles. I wanted the webinars to be relevant for clinicians who work with people with aphasia (PWA) and their families, as well as for those whose responsibilities include other adult neurogenic communication disorders. I also wanted some fresh new voices to follow that of the authoritative Roberta Elman, one of LPAA’s most influential and productive voices. I set about asking them, and all agreed to participate!

I don’t believe that either Amy or I considered that the movement itself was about to have an important birthday. But 2020 marks the 20th anniversary of the appearance in the ASHA Leader of this game-changing article entitled the “Life Participation Approach to Aphasia: A Statement of Values.” As most everyone in the “aphasia world” knows, the LPAA statement was written by a prescient group of aphasiologists, almost as a manifesto to researchers and clinicians to consider the bigger picture of living life with aphasia in a fulfilling way, even when (or because) aphasia didn’t disappear as a result of the most elegant clinical interventions, by the most skilled clinicians.

In retrospect, I think the LPAA statement was like an aphasia version of the “shot heard round the world” that became the beginning of American democracy. SLPs were empowered to develop inventive solutions to improve the post-treatment lives of people with aphasia. LPAA has fostered the development of group programs that greatly expand activities that increase PWA’s abilities to regain a foothold in everyday life, provide opportunities for them and their loved ones to make a difference in the lives of others, and so forth. There has been an amazing growth of aphasia treatment approaches including the development of Aphasia Centers of varying sizes across the United States in these past 20 years.

By the time our webinar week was over, I was happy that Roberta had set the stage, and that her other colleague-presenters were excellent examples of new LPAA blood. They had fresh ideas about expanding the use of LPAA for people with typical aphasia. And importantly, this new generation also suggested ways to broaden the reach of LPAA to include speech and language disorders across the spectrum of neurogenic language disorders, including dementia, traumatic brain injury, and primary progressive aphasia. This is a “Social Imperative” for our profession, for every neurogenic communication disorder. However, these webinars did not begin to cover all the topics! We needed more topics and more new voices! So we decided to turn the webinars into a book.  Roberta agreed to be my co-editor. We then chose some additional writers and encouraged authors to invite co-authors for their individual chapters. Barbara Shadden, a well-known, long-term supporter of LPAA became a co-author; and, Roberta and I invited Nina Simmons-Mackie to write a chapter, who is arguably one of the most venerated aphasiologists in the United States. And then we were fourteen.

In alphabetical order, we are: Sarah Baar, Natalie Douglas, Roberta Elman, Audrey Holland, Tami Howe, Louise Keegan, Becky Khayum, Peter Meulenbroek, Aimee Mooney, Thomas Sather, Barbara Shadden, Nina Simmons-Mackie, Delainey Smyth, and Katie Strong.

Once our cast of authors was assembled, Roberta and I approached Plural Publishing with our book idea—their response was rapid and positive. We both thank them for their faith in us. 

Why is this is an important book not only for practicing clinicians, but also as a supplementary text for graduate courses in Neurogenic Communication Disorders? First, neither Roberta nor I are aware of another intervention-oriented text centered in the principles and practical examples of a Life Participation Approach applied to the broader neurogenic spectrum (and it is not broad enough here . . . it is just a start.) Aphasia Access has provided an invaluable service with their downloadable 4-part curriculum to aid instructors in sharing the LPAA approach with their students: Our book, Neurogenic Communications Disorders and the Life Participation Approach: The Social Imperative in Supporting Individuals and Families, should be viewed as a practical supplement to broadening this picture.

We now describe each of our book’s chapters. Our goal is to provide a taste of what the book is about, and hopefully pique readers’ interest in the shift from rather abstract treatment goals to tasks that can affect daily life, including roles that others can play in reaching and maintaining these goals. Many of these approaches are traditional, but their stimuli and activities are focused directly on getting along better in daily life. We know this is not rocket science, but rather an attempt to assist clinicians in helping persons with neurogenic communication disorders function perhaps not totally, but at least a bit more typically in everyday life.

Chapter 1: The Social Imperative for Aphasia Rehabilitation: A Personal History by Audrey L. Holland

My goal was to provide historical context for the importance of the Social Imperative for aphasia rehabilitation and to convince readers that this is hardly a new concept. Most aphasia researchers understand that aphasia will help us figure out how language processing is accomplished. And most agree that the more we learn about language processing, the more productive language treatment will become. However, as aphasia researchers struggle to increase our understanding, we must also recognize the needed Social Imperative: to help PWA and their families and friends live as fully as possible despite our current lack of fuller understanding.

Chapter 2: C.A.P.E.: A Checklist of Four Essential and Evidence-Based Categories for Aphasia Intervention by Roberta J. Elman

Roberta wrote Chapter 2, in which she discusses the successes and failures of her early clinical career that served as the catalyst for C.A.P.E., a clinical framework and checklist that she has developed. I don’t believe I am giving away the plot of Roberta’s insightful chapter by reminding you what C.A.P.E. stands for; what Roberta lists as the essentials of aphasia intervention. I am just whetting your appetite for more, so here goes: C: Connecting People with Aphasia; A: Augmentative and Alternative Communication; P: Partner Training; and E: Education and Resources. Roberta provides a whole warehouse of ideas that reflect the importance of these essential ingredients, especially in the first few months post-onset or when the number of treatment sessions is limited by payors or other factors.

Chapter 3: Discovering Functional Needs in Speech-Language Therapy by Sarah Baar

I first encountered Sarah via her website Honeycomb Speech Therapy.  This was about 5 years ago and I have been a Sarah “wannabee” (sic) ever since. Although, I no longer see clients I follow Sarah dutifully, because she has been unfailing in tweaking my mind with great, logical, and practical clinical suggestions. Sarah’s contribution is a treasure trove of ideas, in the tradition that burnishes the reputation of  “getting along with life post aphasia.”  Sarah listens to persons with aphasia and their loved ones. Her chapter is the result. ENJOY!  And please share it with clinicians who work with primary progressive aphasia (PPA), traumatic brain injury (TBI), and dementia as well!

Chapter 4: The Role of the Environment: Supporting Language, Communication, and Participation by Thomas W. Sather and Tami J. Howe

Even though environmental factors were a topic of the initial seminars, I think it was only after I read the initial draft of Tom Sather and Tami Howe’s chapter on the role of the environment in supporting communication, that I truly understood its importance. As they point out, environmental factors are driven by PWA and families. These factors facilitate, enhance, and enrich all communicative efforts. Environmental factors also play a role in challenging aspirations as well as evaluating the effectiveness of treatment. To me, this often seems to be independent of the severity or prognosis of the disorder in question. In this chapter, Tom and Tami do a comprehensive job of reminding us of the fundamental and important contribution of the environment. 

Chapter 5:  Stories at the Heart of Life Participation: Both the Telling and Listening Matter
by Katie A. Strong and Barbara B. Shadden

Katie and Barbara begin by reminding us that for most of us, and for most of history, it is our stories that count. This includes individuals with neurogenic communication disorders, where the ability to tell one’s story negatively affects one’s sense of self and identity. Language disorders limit one’s ability to share who they know themselves to be. Katie and Barbara explore in detail the ramifications of this critical, but seldom acknowledged loss in their chapter. Importantly, they do not underestimate the role of the listeners of stories and they discuss how to maximize the listener’s role.

Chapter 6: Primary Progressive Aphasia: A Practical Roadmap for Navigating Person-Centered Evaluation and Treatment by Rebecca Khayum and Aimee R. Mooney

Individuals and families with primary progressive aphasia are increasingly seeking help from SLPs to maintain speech and language abilities for the longest possible time.  Their problems differ from aphasias resulting from stroke as well as from traditional dementias. However, neither contemporary course work for students in neurogenic language disorders, nor most clinical practice provides students or clinicians with adequate training. Clinicians are frequently caught off guard about direct language work and appropriate counseling that should be provided given the generally downward course that is likely to affect most families who receive this diagnosis. We believe Becky and Aimee’s chapter is an exception to this dismal view. This chapter is another treasure chest full of useful clinical techniques that can be incorporated into many other neurogenic communication disorders, especially the strong case it makes for personalizing clinical interventions to meet ongoing needs, independent of diagnosis.

Chapter 7: Life Participation for People with Dementia by Natalie F. Douglas and Delainey Smyth

Dementia has only been on the radar for SLPs for the past 30 years or so and, as with PPA, we are still a bit mystified as to what role we have in its counseling and direct management; only a minority of students are privileged to learn about it from experts. So it is with a great sigh of relief that this knowledgeable view graces our pages. Natalie and Delainey present a realistic picture of what can help the person with dementia and his or her family, and what lies ahead. Their advice is neither overly optimistic nor is it unduly pessimistic. Rather, it is informative and practical and it is a terrific guide for our evolving role. 

Chapter 8:  The Life Participation Approach and Social Reintegration After Traumatic Brain Injury by Peter Meulenbroek and Louise C. Keegan

SLPs sometimes view our colleagues whose specialty is TBI, as though they inhabit another professional universe. Of course, this is not true. We hope this chapter will help put us back in touch with each other. Peter and Louise share valuable information related to interviewing clients and returning to work, that is relevant not only for TBI, but for SLPs who are working with anyone living with a neurogenic communication disorder. The overlap is particularly critical when it relates to young stroke survivors with aphasia, who face significant issues in potentially returning to work and putting their lives back together.

Chapter 9:  The Life Participation Approach to Aphasia: Looking Back and Moving Forward by Nina Simmons-Mackie

Count on Nina to pull it all together! Roberta and I cannot thank her enough for her vision, her quiet but oh-so-invaluable leadership, and her willingness to pull everything together and provide a massive contribution to our book!

Both Roberta and I are pleased with this book and we are thrilled to be able to share its authors and ideas with you. We hope this synopsis of its wealth of ideas will entice you to read it, but more importantly, to adopt and adapt some of the ideas to your own academic courses and/or clinical practice!