Between visits: How our system fails Parkinson's and dementia patients

Anna first noticed something went wrong when she started to become unbalanced. Her primary care physician is uncertain. Maybe it's stress, maybe it's aging. In two years and three experts, Anna cycled through referral, test, and scan before a neurologist finally diagnosed Parkinson's disease. By then, her symptoms worsened, her family gradually received nursing work, and the things they faced had no name.

Samir is diagnosed faster, but that's just the beginning. Finding the right treatment means months of trial and error: one that makes him dizzy, another that relieves tremors but worsens sleep, a treatment schedule that his job can’t accommodate. His neurologist sees him every six months, but between visits, Samir and his wife are left to explore the changing landscape of symptoms, side effects and daily challenges.

Throughout the United States and the United Kingdom, patients with excessive Parkinson's and dementia live through stories like Anna's and Samir's, which is trapped in a health system to deal with clear crises rather than walking with people through slow, unpredictable declines.

But the story of Anna and Samir doesn't begin or end with a diagnosis. Even if patients manage to reach neurologists, they face months of waiting, hasty dates and care plans that rarely adjust when life changes. Between visits, they are primarily independent, managing complex symptoms without guidance or feedback. Family involvement in the de facto care team, bringing together support, medication and daily coping strategies. The result is often a kind of abandonment, which is easy to miss from the outside, but is devastating for those who live in it.

Our health system has never been built for diseases like Parkinson's or dementia. These diseases are not the direct path, but slow, uneven and different for everyone. However, the system still treats them like short-term problems: assessment, treatment and transfer to the next situation. If you break your legs, the model works. It breaks down when you have a chronic, unpredictable disease. Without stable connections and follow-up, even the best care plan can collapse, allowing patients and families to work hard to fill the gap between visits.

When patients do receive treatment, most of this is done in trial and error. Families often believe that the care plan is supported by clear evidence, but behind the scenes, clinicians are making the best judgments, and information is limited. Neurology has always been part of science, part of experience. But even thoughtful decisions miss the mark if there is no way to track how symptoms change between visits. Small adjustments in the clinic, such as drug changes or new treatments, can traverse a person’s daily life in ways that no one expected, sometimes helping and sometimes making the situation worse.

Meanwhile, patients and caregivers are doing their best to help themselves. Many track symptoms, adjust routines, try exercise programs or study therapy. They are involved, aggressive and certain, but within a system that goes far beyond the scope of the process, most of these efforts are underestimated or underestimated. Most of their life span occurs away from the clinic, but traditional models of care rarely support the daily work of suffering from brain disorders.

There is a better way we have seen it work in other cases. Diabetes care has evolved to include home monitoring, shared dashboards, and regular feedback between patients and clinicians. People can adjust their care in real time and work with the team. Neurology does not have simple markers like blood sugar, but the need for timely and tailor-made care is equally urgent.

Given the growing experts, no goodwill or clinical skills are sufficient in itself. We cannot train us to get rid of this problem, and we should not require individual clinicians to bear the weight of a system that has never been built for the conditions they are facing now. What we need is better tools, clearer data, and strong interdisciplinary connections for nursing teams (not just neurologists, but nurses, therapists, primary care physicians, caregivers and the patient themselves).

First, we need to see the symptoms objectively between visits. Today, clinicians are forced to make key decisions based on snapshots based on what they see in the clinic or what the patient recalls from memory. But diseases like Parkinson's and dementia are not only present when dating. They change by hour every day and often affect many different parts of daily life. Parkinson's solitary person involves up to 40 different symptoms. It is the combination of high symptom burden and continuous fluctuations that drive the complexity. Without objectively tracking these transformations, nursing becomes a guess. We need to enable clinicians to see the system that patients truly develop over time, so they can intervene earlier, adjust treatment thoughtfully, and avoid preventable crises.

Second, we need to empower a complete nursing team. There are few experts, but be careful not to stop at the neurologist’s door. Nurse, physical therapist, speech therapist, pharmacist, and primary care physician can all play a role. Currently, they often work in isolated islands and have no common perception of patients. A better model will connect them, giving each member of the team access to relevant information, clear protocols, and the ability to act, ultimately creating a system where everyone can make meaningful contributions to the care of the patient.

Third, we need to see patients and caregivers as active partners. Many people with Parkinson's disease or dementia and their families are already tracking symptoms, testing routines, and looking for ways to improve their daily lives. But usually, their efforts are invisible to the system. We need to identify and support the model of this work, not the sideline. This means listening to patient-reported results, capturing goals, clinically validated daily data and co-creating care plans to reflect the reality of life at home.

Most of today’s nursing infrastructure was built in different eras, when medicine focused on acute diseases and short-term treatment. But neither can we. We have better tools to build something better: stay in touch with people, adapt to their needs, and help them not only live longer, but they can help them better. The patient is ready. The clinician is ready. The question is, are the health system, payers and innovators ready to meet there?

Photo: Andre, Getty Images

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