Progress barriers encountered by stroke, TBI and dementia patients

Clinicians share their insights and guidance

As we anticipate the emerging trends in the speech, language, and cognitive therapy industry in 2023, we at Constant Therapy are passionate about not only celebrating the new innovations that may lead to better care, but also about recognizing and problem solving about new barriers that may impact patients. 

It is important to address the barriers that can impede the progress that patients are working so hard to achieve. From lack of access to adequate healthcare to social stigma and the difficulty of navigating a complex healthcare system, finding a way to stay on track can be hard. While the journey to recovery can be long and challenging, progress is possible with the right support and resources. 

In this blog post, we examine the barriers that impact progress for those who have experienced stroke, TBI, or are living with neurological conditions and the ways that individuals, families, and communities can work together to support recovery and promote consistency. By shedding light on the challenges of recovery and promoting awareness of the resources available to support progress, we at Constant Therapy hope to empower those living with neurological conditions and their loved ones to take an active role in the journey to recovery. As we always enjoy gathering insights from clinicians, so we asked several experts to share their thoughts on the  following question: 

What do you think are the biggest deterrents of progress in those who have experienced stroke, TBI or are living with dementia or other neurological conditions?

Progress barrier: confidence and consistency

>> Response from: Monica Lupo, Speak our Legacy Inc. | M.A., CCC-SLP, TSSLD, CDP, LSVT-C

“The biggest deterrents of progress for patients who have experienced stroke, TBI or are living with dementia or other neurological conditions is confidence and consistency. Confidence comes from hope and this is something we can continue to instill in our patients through rapport building and working toward small attainable goals. Consistency will take this hard work and begin to rebuild neural pathways to aid in patient progress. We must focus on differential diagnosis to create individualized treatment plans that treat the patient as a whole. Patients may feel that reaching their prior levels of function is light years away from their current status, but it is our job to show them all of the small ways that they’re growing toward it. We must be a light if they find themselves in a dark place because that motivation to keep going can be the biggest asset to reaching their highest potentials.”

Monica Lupo is CEO of Speak our Legacy Inc. providing mobile FEES testing and homecare services throughout NY. She expands her expertise into corporate SLP consulting and is a graduate level professor working to educate and grow her community to create opportunities for effective cognitive, dysphagia, speech, and language services.

Find Monica on: Linkedin | Website | Instagram

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Progress barrier: perspective on dementia

>> Response from: Adria Thompson | MA CCC-SLP

“Dementia is a neurodegenerative disease and, by definition, it will get worse with time. Because of this, restoration of lost abilities is not probable. Therapy with individuals with dementia is not exactly the rehabilitation model where the goal is regaining lost skills after an injury or illness. Instead, dementia therapy is more closely aligned with the habilitation model where the focus is on maintaining skills for as long as possible. In the 2013 case Jimmo v. Sebelius, the court ruled that if skilled care is determined to be reasonable and necessary to prevent or slow decline and deterioration, Medicare coverage cannot be denied simply because they are not “progressing.”

I think the deterrent of progress (or more accurately, retaining and maintaining) is the SLP’s inaccurate belief that therapy is not possible. Across physical, occupational, and speech therapists, a common repeated script exists that individuals with dementia “are not appropriate for therapy”, “are not a good candidate for therapy”, or “can not participate in therapy”. This determination is often based on the facts that individuals with dementia struggle to follow directions, have limited to no insight into their deficits, or decline to participate in structured therapy tasks. Although these observations are largely true, it is not appropriate to use the symptoms of a disease as the reason as to why they cannot receive therapy. Not following directions or declining to participate, for example, could be caused by auditory comprehension, verbal expression, attention, proprioception, or motor planning deficits. These often quoted reasons for not initiating therapy are the very proof that therapy is needed!

When an individual is not likely to regain abilities like in the case of dementia or a long standing TBI or CVA, therapists can still use their skills to teach primary caregivers in how to compensate for and habilitate their deficits. For example, if a person with dementia demonstrates fear and anxiety during toileting resulting in possible injury to themselves or others, a caregiver cannot state they are “not appropriate for toileting”. Toileting is a basic need that has to be done. A therapist is needed to assess the situation, trial modifications and approach strategies, and provide training to caregivers in order to give them the best possible chance of completing care.

Instead of believing a person is “not appropriate for therapy”, perhaps consider if it is the therapy that’s “not appropriate” for them. That’s much more under the control of the therapist.”

Adria Thompson is a speech language pathologist in Kentucky and specializes in dementia care.

Connect with Adria on: Linkedin  | Website | Instagram | TikTok

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Progress barrier: healthcare inequities

>> Response from: Jordyn Pierce | MS, CCC-SLP, ATP (Speech-Language Pathologist/Assistive Technology Specialist)

“Getting access to high quality therapy is always a challenge for patients.  Between geographic, insurance, and therapist availability barriers, it can be really tough for patients to get the services that they need – and that’s not just speech and language therapy, that’s across the board.  Continuing to break down those barriers by using technology for more independent therapeutic activities at home and other therapy delivery options, like teletherapy, will be essential moving forward.”

Jordyn Pierce is the Vice President of Clinical Operations and Development for Constant Therapy and runs a private practice in Western Massachusetts.  She provides speech, language, and cognitive therapy and associated consulting services for patients across the lifespan.

Learn more about Jordyn on: Website | Instagram

Key takeaways

We at Constant Therapy strive to bring attention to perpetual inequalities in accessing speech, language, and cognitive therapy. As we continue to hear from clinicians in the industry, their valuable insights bring together perspectives that promote critical discourse about necessary changes needed in the speech, language, and cognitive therapy industry. One of the key takeaways from this series of expert responses is the difficulty accessing quality therapy for patients whether due to insurance, therapist scheduling, and lack of information.  This can impact patients’ progress as well as lower their confidence. Some experts posted that leaning towards more technology-based therapy and individualized treatment plans can help to eliminate those barriers, creating a more conducive and appropriate recovery course for patients. As we continue to develop ways to minimize these obstacles, we find that conversations go a long way in addressing restrictions that may set patients back.  Whether through advocacy, education, or simply being a supportive friend or a family member, each of us can play a role in the journey to recovery for those recovering from stroke and TBI or those who are living with dementia or other neurological conditions.

Read the first post in this expert series: Speech, Language, and Cognitive Therapy trends 2023 – experts weigh in.