John, a person in his early sixties, waited 9 months to see me about reminiscence issues. When he lastly arrived, I had twenty minutes. Eighteen went to detective work, extracting fragments of historical past from conflicting accounts, piecing collectively months of decline from unreliable reminiscences, and finishing a paper-based subjective reminiscence check. What ought to have been a full session of patient-focused care, was lowered to just a few hurried minutes on the finish. He left with extra assessments ordered and a follow-up appointment in 4 months.
That have isn’t uncommon. Throughout neurology departments, we try to suit power, progressive ailments into an infrastructure constructed for extra black and white displays. The mismatch isn’t just inefficient. It erodes belief, overwhelms scientific groups, and wastes assets that well being methods can not afford to lose.
John’s outcomes trickled in piecemeal: a scan one week, bloodwork the subsequent. Every required one other evaluate, one other letter to his main care doctor, one other appointment. In between, signs shifted, members of the family improvised care plans, and everybody waited for the subsequent transient window to attach.
The elemental design flaw
Trendy well being methods are constructed to excel at acute care. Coronary heart assault or stroke protocols are designed to run effectively, as time is crucial to the end result. Surgical pathways are optimized to get sufferers to the theatre when acutely wanted. Emergency departments triage with velocity to get sufferers via the system. These successes depend on a transparent method: an outlined drawback, a targeted intervention, a measurable final result. If all goes to plan, case closed.
Parkinson’s and dementia care, sadly, doesn’t match that method. They unfold over months and years, not days. Signs can fluctuate from hour to hour in methods sufferers can not reliably recall months later. They manifest via dozens of overlapping signs interacting in complicated, unpredictable patterns. These ailments don’t resolve; they solely progress.
I repeatedly see Parkinson’s sufferers who’ve had the situation for many years making an attempt to recall whether or not a medicine helped in a single month and worsened in one other, or if their tremor is now improved however sleep has change into worse. Primarily based on these fragments, medicine changes that alter mind chemistry and that may even have important unwanted side effects are then made. Six to 12 months later, the method is repeated.
The system assumes we are able to extract twenty years of illness administration from twenty-minute snapshots taken twice a yr. It’s like making an attempt to observe the plot of a feature-length film, however solely catching a couple of minutes in the beginning and center, but nonetheless anticipated to offer a considerate critique of the storyline and character portrayals.
The cascade of waste
This mismatch creates inefficiencies that ripple via the system. For John, uncertainty at that first go to triggered additional appointments to make clear the prognosis. The delays meant months with out remedy and help, impacting high quality of life.
In Parkinson’s, as soon as recognized, the cycle finally repeats: trial-and-error medicine modifications based mostly on the very best judgments that may be constituted of subjective recall, antagonistic results or acute occasions resulting in emergency visits, and further consultations to offer help. Between appointments, signs fluctuate with out steerage. Households make pressing calls. Emails are despatched with further questions. Outcomes land weeks later, every demanding evaluate.
These fragments additionally eat huge administrative time. Major care physicians, who may deal with routine changes if that they had higher visibility, as a substitute refer again to specialists. Everybody operates partially blind, fragmented, duplicating effort and lacking probabilities for early intervention.
We have now solved this earlier than; simply not right here.
Endocrinology confronted the same problem many years in the past. Diabetes sufferers cycled via crises till distant glucose monitoring allowed day by day monitoring, early intervention, and fewer hospitalizations. Steady glucose monitoring additional remodeled their care, giving groups a real-time view and sufferers the power to regulate their day by day life accordingly.
Steady information liberated scientific groups from detective work, letting them deal with well timed, focused remedy. Neurology has the identical alternative. We are able to now objectively measure tremor, voice modifications, strolling patterns, and cognition utilizing instruments sufferers already personal. Total care groups can share this information, changing guesswork with clear developments. The expertise exists. We simply haven’t embedded it into the mannequin.
What wants to vary
First, make signs seen between visits. At the moment, important choices depend on in-clinic snapshots. Parkinson’s alone can contain dozens of distinct motor and non-motor signs, every shifting day by day. With out goal, ongoing monitoring, care turns into guesswork. Steady measurement would let clinicians see how sufferers are really doing over time, modify earlier, and keep away from preventable crises.
Second, join the total care staff. Care mustn’t cease on the neurologist’s door. Nurses, therapists, pharmacists, and first care docs all have roles to play, however they too typically work in silos. Shared, goal data and clear protocols would enable every member to contribute meaningfully, easing the load on scarce specialists.
Third, sufferers and caregivers needs to be handled as lively companions. Many are already monitoring signs and adjusting routines, however their insights hardly ever attain the clinic in a usable type. Techniques ought to seize and act on this work, co-creating care plans that mirror day by day life, not simply the clinic go to.
The window is closing.
Demographics alone assure that tens of millions extra will develop these situations within the coming years. The neurologist scarcity is deepening. The expertise to rework care is right here now. What’s lacking is the need to switch a reactive, episodic mannequin with one designed for the realities of neurodegeneration.
For clinicians, which means recognizing the inefficiencies they navigate daily and pushing for methods that permit them spend time offering actual care, not making an attempt to piece collectively fragmented data. For well being system leaders, it means utilizing present reimbursement pathways to implement steady monitoring earlier than demand overwhelms capability. For policymakers, it means creating incentives for built-in, data-driven fashions of care. And for sufferers and caregivers, it means demanding a seat on the desk when these fashions are constructed.
John deserved greater than a rushed session and a string of disconnected follow-ups. So do the tens of millions residing with Parkinson’s and dementia. Twenty-year ailments can’t be managed with twenty-minute drugs. That mismatch isn’t inevitable. It’s a alternative, and one now we have the facility to vary.
Kinan Muhammed is a doctor govt.
