Caught Between Visits: How Our System Fails People With Parkinson’s and Dementia

Anna first noticed something was wrong when she started to become off balance and her voice grew quieter. Her primary care doctor wasn’t sure. Maybe it was stress, maybe aging. Over two years and three specialists, Anna cycled through referrals, tests and scans before a neurologist finally diagnosed Parkinson’s disease. By then, her symptoms had worsened, and her family had gradually taken on the work of caregiving, without a name for what they were facing.

Samir’s diagnosis came faster, but that was only the beginning. Finding the right treatment meant months of trial and error: a medication that left him dizzy, another that eased tremors but worsened sleep, a therapy schedule his job couldn’t accommodate. His neurologist saw him every six months, but between visits, Samir and his wife were left to navigate a shifting landscape of symptoms, side effects and daily challenges largely on their own.

Across the U.S. and the UK, too many patients with Parkinson’s and dementia live through stories like Anna’s and Samir’s, caught in a health system built to handle clear-cut crises, not to walk with people through slow, unpredictable decline.

But Anna’s and Samir’s stories didn’t begin or end with a diagnosis. Even when patients manage to reach a neurologist, they face months-long waits, rushed appointments, and care plans that rarely adjust when life changes. Between visits, they are largely on their own, managing complex, shifting symptoms without guidance or feedback. Families step in as de facto care teams, piecing together support, medications and daily coping strategies. The result is often a kind of abandonment that’s easy to miss from the outside, but devastating for those living through it.

Our health system was never built for conditions like Parkinson’s or dementia. These diseases don’t follow a straight path, but rather unfold slowly, unevenly and differently for every person. Yet the system still treats them like short-term problems: assess, treat and move to the next case. That model works if you break a leg. It collapses when you’re living with a chronic, unpredictable disease. Without steady connection and follow-through, even the best care plans can fall apart, leaving patients and families struggling to fill the gaps between infrequent visits.

When patients do get treatment, much of it runs on trial and error. Families often believe care plans are backed by clear evidence, but behind the scenes, clinicians are making the best judgments they can with limited information. Neurology has always been part science, part experience. But without a way to track how symptoms change between visits, even thoughtful decisions can miss the mark. A small adjustment in the clinic, like a medication change or a new therapy, can ripple through a person’s daily life in ways no one anticipates, sometimes helping and sometimes making things worse.

Meanwhile, patients and caregivers are doing everything they can to help themselves. Many track symptoms, adjust routines, try exercise programs or research therapies on their own. They are engaged, motivated and determined, yet much of that effort goes under-recognized or under-utilized in a system stretched far beyond what it was designed to handle. Most of what they live through happens far from the clinic, but traditional care models rarely offer support for the everyday work of living with a brain disease.

There’s a better way, and we’ve seen it work in other conditions. 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, working in partnership with their teams. Neurology doesn’t have a simple marker like blood sugar to track, but the need for timely, tailored care is just as urgent.

Given the ever-growing shortage of specialists, no amount of good will or clinical skill is enough on its own. We can’t train our way out of this problem, and we shouldn’t ask individual clinicians to carry the weight of a system that was never built for the conditions they’re now facing. What we need is to equip care teams — not just neurologists, but nurses, therapists, primary care doctors, caregivers and patients themselves — with better tools, clearer data and stronger connections across disciplines.

First, we need to make symptoms objectively visible between visits. Today, clinicians are forced to make critical decisions based on snapshots, based on what they see in the clinic or what patients can recall from memory. But diseases like Parkinson’s and dementia don’t just show up at appointments. They change hour by hour, day by day, and often affect many different parts of daily life. Parkinson’s alone can involve up to 40 distinct symptoms. It’s the combination of high symptom burden and constant fluctuation that drives the complexity. Without ways to objectively track these shifts, care becomes guesswork. We need systems that let clinicians see how patients are really doing over time, so they can intervene earlier, adjust treatments thoughtfully, and avoid preventable crises.

Second, we need to empower the full care team. Specialists are scarce, but care doesn’t have to stop at the neurologist’s door. Nurses, physical therapists, speech therapists, pharmacists, and primary care doctors all have a role to play. Right now, they often work in silos, with no shared view of the patient. A better model would connect them, giving each member of the team access to relevant information, clear protocols, and the ability to act, ultimately creating systems where everyone involved can contribute meaningfully to a patient’s care.

Third, we need to treat patients and caregivers as active partners. Many people with Parkinson’s or dementia, and their families, are already tracking symptoms, testing routines, and searching for ways to improve daily life. But too often, their efforts are invisible to the system. We need models that recognize and support this work, not sideline it. That means listening to patient-reported outcomes, capturing objective, clinically validated daily data and co-creating care plans that reflect the realities of life at home.

Much of today’s care infrastructure was built for a different era, when medicine focused on acute illnesses and short-term fixes. But neurodegenerative diseases don’t follow that script, and neither can we. We have the tools to build something better: care that stays with people, adapts to their needs, and helps them live not just longer, but better. Patients are ready. Clinicians are ready. The question is, are health systems, payers and innovators ready to meet them there?

Photo: Andreus, Getty Images

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