Taken between visits: how our system fails people with parkinson and dementia

Anna first noticed that something was wrong when she started to become unbalanced and her voice was quieter. His primary care doctor was not sure. Maybe it was stress, maybe aging. More than two years and three specialists, Anna has traveled references, tests and analyzes before a neurologist diagnosed Parkinson’s disease. At that time, his symptoms had aggravated and his family had gradually taken care of care, without name for what they were confronted with.

Samir’s diagnosis arrived faster, but it was only the beginning. Finding the right treatment meant months of trials and errors: a medication that left it dizzy, another that released the tremors but aggravated sleep, a therapy calendar that his work could not accommodate. His neurologist saw it every six months, but between visits, Samir and his wife were left to navigate a changing landscape of symptoms, side effects and daily challenges largely by themselves.

Through the United States and the United States, too many patients with Parkinson and Dementia live through stories like Anna and Samir, taken in a health system designed to manage clear crises, not to walk with people through a slow and unpredictable decline.

But the stories of Anna and Samir did not start or did not end with a diagnosis. Even when patients manage to reach a neurologist, they face expectations of months, rushed meetings and care plans that rarely adapt when life changes. Between the visits, they are largely alone, managing complex and changing symptoms without guidance or feedback. Families intervene as de facto care teams, bringing together support, drugs and daily adaptation strategies. The result is often a kind of abandonment which is easy to miss from the outside, but devastating for those who live.

Our health system has never been built for conditions like Parkinson or Dementia. These diseases do not follow a right path, but take place slowly, unevenly and differently for each person. However, the system always treats them as short -term problems: evaluating, dealing with and going into the following case. This model works if you break a leg. It collapses when you live with a chronic and unpredictable disease. Without regular connection and followed, even the best care plans can collapse, leaving patients and families who have trouble filling the gaps between infrequent visits.

When patients benefit from treatment, a large part of the trials and errors. Families often believe that care plans are supported by clear evidence, but behind the scenes, clinicians carry the best judgments they can with limited information. Neurology has always been partly science, partly experience. But without a way to follow how symptoms change between visits, even thoughtful decisions can miss the brand. A small adjustment in the clinic, such as a change of medication or a new therapy, can collapse the daily life of a person in a way that nobody plans, sometimes helping and aggravate things.

Meanwhile, patients and caregivers do everything possible to help themselves. Many follow symptoms, adjust routines, try exercise programs or research therapies by themselves. They are engaged, motivated and determined, but a large part of this effort is under-converted or underused in a system stretched far beyond what was designed to manage. Most of what they experience takes place far from the clinic, but traditional care models rarely offer support for daily work to live with a brain disease.

There is a better way, and we have seen it operate in other conditions. Diabetes care has evolved to include home surveillance, shared dashboards and regular comments between patients and clinicians. People can adjust their care in real time, working in partnership with their teams. Neurology does not have a simple marker like blood sugar to follow, but the need for timely and tailor -made care is just as urgent.

Given the shortage of constantly increasing specialists, no goodwill or clinical competence is enough for itself. We cannot get out of this problem, and we must not ask individual clinicians to carry the weight of a system that has never been built for the conditions they are confronted with. What we need is to equip care teams – not only neurologists, but nurses, therapists, primary care physicians, caregivers and patients themselves – with better tools, clearer data and stronger connections between disciplines.

First, we must make the symptoms objectively visible between visits. Today, clinicians are forced to make critical decisions based on snapshots, depending on what they see in the clinic or that patients can remember memory. But diseases like Parkinson and Dementia are not only at the appointments. They change from hour to hour, day after day and often affect many different parts of daily life. The only Parkinson can involve up to 40 distinct symptoms. It is the combination of a load of high symptoms and a constant fluctuation which leads to complexity. Without an objectively following these quarter of work, care becomes a conjecture. We need systems that allow clinicians to see how patients really get caught over time, so that they can intervene earlier, adjust the treatments, and avoid preventable crises.

Second, we have to empower the complete care team. Specialists are rare, but care should not stop at the neurologist’s door. Nurses, physiotherapists, speech therapists, pharmacists and primary care physicians all have a role to play. Currently, they often work in silos, without 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 all those involved can significantly contribute to the care of a patient.

Third, we must treat patients and caregivers as active partners. Many people with parkinson or dementia, and their families already follow symptoms, test routines and are looking for means to improve daily life. But too often, their efforts are invisible to the system. We need models that recognize and support this work, not the touch. This means listening to the results declared by patients, capturing objective and clinically validated daily data and co-creating care plans that reflect the realities of life at home.

A large part of today’s care infrastructure was built for a different era, when medicine has focused on acute diseases and short -term fixes. But neurodegenerative diseases do not follow this script, and we cannot either. We have the tools to build something better: the care that remains with people, adapt to their needs and help them live not only 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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