Tuning up access, attitudes, and models of care for individuals with dementia
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As debates of whether to revise or dismantle the Affordable Care Act (ACA) intensify, there is an opportunity to have meaningful discussions about innovative ways to deliver healthcare.

In the current system, magic bullet solutions are incentivized while approaches that take time to pay off are undervalued. Atul Gawande emphasized this sentiment in his recent article, “The Heroism of Incremental Care” and subsequent NPR interview, where he described a need for shifting attention towards lifelong incremental medicine rather than just rewarding rescue medicine. Aspects of the incrementalist mindset resonate with the person-centered care approach, which allows the patient to have a voice in treatment.


The usefulness of person-centered approaches are being evaluated for those living with dementia. Unfortunately, there are geographic barriers in accessing these programs since availability tends to be limited to specialty centers commonly in an academic medical setting. Technology offers one solution for facilitating access to treatment for patients themselves and minimizing the cost of such treatments.

When you hear the word “dementia,” the words Alzheimer’s and memory loss commonly come to mind. But, clinicians and caregivers know that there is more to the diagnosis than memory loss.

Communication difficulties are common in Alzheimer’s dementia and loss of language can be the initial symptom in a relatively rare form of dementia called primary progressive aphasia (PPA). While there is no cure for Alzheimer’s or PPA, there are emerging approaches aimed at helping families maximize quality of life, improve communication and prepare for future challenges. Investing in person-specific rather than one-size-fits-all models of care has the potential to increase the value families place on care, improve adoption of the proposed therapy strategies and promote long-term sustainability, ultimately leading to better outcomes.

As a Ph.D. neuroscientist at Northwestern University, my recently published research demonstrates that web-based delivery of person-centered care is feasible and can reduce geographic barriers to accessing care. This research program is still active and has provided web-based speech-language therapy to 50 individuals with PPA.

Individuals living with dementia and their care-partner receive therapy from an expert clinician trained in speech-language pathology via video chat using a custom-built web-application. Participants enrolled from 21 states, Canada and Singapore and reported significant gains in their confidence in communicating with others. They also showed improved ability retrieve words that they had previously lost including names of friends and family members, flowers in their garden and household items.

Because the disease is progressive these gains will not be maintained permanently; however, their impact on their daily life measurable and meaningful today. The therapists in this study also equip participants with disease education and strategies to cope as symptoms progress.

There is a need for increased research in person-centered care and its modes of delivery to determine its effectiveness, which will require buy-in from funding agencies. This is timely as investment as funding for Alzheimer’s and related dementias is on the rise with record levels of funding from the National Institutes of Health last year, which are expected to continue in the year ahead in an attempt to meet the goals of the National Alzheimer’s Project Act. Allocation of this funding in areas beyond drug development will be important for helping those living with dementia today.

Person-centered care is consistent with the growing interest in precision medicine and the development of the Patient Centered Outcome Research Institute (PCORI). Once these methods have been scientifically validated, dissemination and implementation challenges may surface. The lack of Medicare coverage and variable state-by-state requirements pose additional hurdles for implementing the tele-practice model of care, which will need to be addressed by healthcare reform.

Educational efforts will also be needed to alter the current misconception that compensatory interventions not worthwhile because of the progressive nature of Alzheimer’s and related dementias. One simple way to help further this access is by sharing knowledge: simply, physicians learn from their patients and families, so it behooves us share dementia care experiences, both positive and negative, with friends and family members, clinicians and advocacy organizations.

Support the notion that there are useful strategies for maximizing quality of life while living with dementia. By the simple act of sharing, we can help families and care-providers to better help each other.

Emily Rogalski is a translational neuroscientist and Associate Professor at Northwestern Medicine’s Cognitive Neurology and Alzheimer’s Disease Center and a Public Voices Fellow.

The views of contributors are their own and are not the views of The Hill.