What Changes Brain Health vs. What Changes Alzheimer’s

If you've read about Alzheimer's disease, you've probably encountered two contradictory messages.

The first: Do these ten things and you can prevent Alzheimer's.

The second: There's nothing you can do — and the drugs don't really work anyway.

As with most false dichotomies, both are wrong. And the confusion between them causes real harm — leading families toward either false hope or premature resignation, neither of which serves them.

The problem is that most conversations about brain health blur together two fundamentally different questions:

What supports a healthy brain?

and

What modifies Alzheimer's disease pathology?

These aren't the same question. They differ not only in biological approach but also in cost, accessibility, and what they can realistically deliver. Understanding why — and what that means for you and your family — is one of the most important things I can help clarify.

Brain Health: Building Resilience

When researchers talk about lifestyle factors and brain health, they're describing something real and evidence-based. Regular physical exercise, quality sleep, cognitive engagement, social connection, managing vascular risk factors — these work.

At a 2019 National Academies workshop on brain health, I proposed a working definition of resilience that captures what we're actually building: A resilient person has a variety of neurocognitive tools and networks that can be activated in response to challenges, and can adaptively deploy these tools to optimize function when facing environmental and psychological demands. The Collaboratory on Research Definitions for Reserve and Resilience in Cognitive Aging and Dementia has developed consensus definitions distinguishing cognitive reserve, brain maintenance, and brain reserve — with resilience as an overarching framework. Resilience isn't about preventing damage — it's about having options when damage occurs.

The evidence for building resilience is solid. Large trials like FINGER and POINTER have demonstrated improvements in cognitive performance and risk profiles through structured lifestyle interventions. We continue to learn how, including how cognitive reserve builds a more adaptable brain that can compensate longer when damage occurs; vascular health that ensures adequate blood flow; and reduced systemic and neuroinflammatory burden associated with slower decline.

But here's the crucial distinction: these interventions build resilience. They may delay the expression of symptoms. They reduce risk. What they don't do — at least not directly — is stop the molecular machinery of Alzheimer's disease itself.

Importantly, no one "fails" their way into Alzheimer's disease. Genetics and biology matter enormously, even when people do everything right. The lifestyle work is worth doing — but it's not a guarantee, and families shouldn't carry guilt when decline happens despite their best efforts.

And critically, these interventions are accessible. They don't require specialized facilities, insurance approval, or infusion centers. The cost is measured in effort and consistency, not dollars.

Disease Modification: Targeting the Pathology

Alzheimer's disease involves a specific pathological process — the accumulation of amyloid plaques and tau tangles that progressively damage brain tissue. For decades, researchers have worked to develop treatments that target this cascade directly.

The timeline of progress here is worth understanding, because much of what we can now measure and treat has emerged remarkably recently.

The biomarker revolution: Until the past few years, confirming Alzheimer's pathology required either invasive lumbar punctures for cerebrospinal fluid analysis or expensive PET imaging costing thousands of dollars with limited availability. That's changing rapidly. Blood-based biomarkers — particularly phosphorylated tau at position 217 (p-tau217) — can now detect Alzheimer's pathology with accuracy often approaching PET imaging in research cohorts. Studies show p-tau217 levels begin rising more than 20 years before symptom onset, providing an unprecedented window into what's happening biologically. These tests are becoming available commercially for around $200, though clinical standards for interpretation and follow-up are still evolving.

Detection enables better decisions — even when treatment options are limited. Knowing what you're facing allows for realistic planning, targeted monitoring, and informed choices about emerging therapies.

Disease-modifying therapies: Anti-amyloid antibodies like lecanemab (Leqembi) and donanemab (Kisunla) represent genuine scientific progress. They can reduce amyloid burden in the brain. Clinical trials have shown modest slowing of decline in people with early-stage disease — approximately 25-35% slowing of progression over 18 months.

But "modest" is the operative word. These are not cures. They don't reverse damage already done. Their effects, while statistically meaningful, translate to relatively small differences in day-to-day function over the study periods. Some individuals and families experience noticeable benefit; others experience none. And the treatments come with real risks — brain swelling (ARIA-E) and microbleeds (ARIA-H) requiring careful monitoring with regular MRIs.

A recent episode of the Penn Memory Center's Age of Aging podcast reviewed where things stand after the 2025 Clinical Trials on Alzheimer's Disease (CTAD) conference. The picture is nuanced: anti-amyloid therapies show consistent but modest effects, while hoped-for breakthroughs in other approaches — like GLP-1 medications — have so far disappointed.

Cost and accessibility: This is where disease modification diverges sharply from brain health approaches. Lecanemab costs approximately $26,500 per year; donanemab runs about $32,000. Medicare covers these drugs, but patients face significant out-of-pocket costs — roughly $5,000-6,600 annually after deductibles, plus costs for required monitoring MRIs and infusion visits. The treatments require biweekly (lecanemab) or monthly (donanemab) infusions at specialized centers, genetic testing for APOE status, and ongoing safety monitoring.

One recent improvement: the FDA approved a subcutaneous autoinjector formulation of lecanemab (Leqembi Iqlik) in late 2025 for maintenance dosing. After completing 18 months of IV infusions, patients can now switch to weekly at-home injections — a 15-second self-administered dose that eliminates ongoing infusion center visits. And a supplemental application for subcutaneous initiation treatment — which would allow patients to bypass the IV infusion phase entirely and start treatment at home — was completed in November 2025 and is currently under FDA review.

If approved, this would represent a meaningful shift in accessibility. But for now, many families — particularly those in rural areas or without supplemental insurance — still face significant barriers to starting treatment, regardless of clinical appropriateness.

What may be coming: The next generation of therapies aims to address current limitations. "Brain shuttle" technologies — bispecific antibodies engineered to cross the blood-brain barrier via transferrin receptor binding — show early promise for improving drug delivery while potentially reducing side effects. Roche's trontinemab, which uses this approach, has shown rapid amyloid clearance at lower doses with encouraging early safety data, including very low rates of ARIA-E. In early trials, 91% of participants on the higher dose became amyloid-negative within six months.

These results are early and focused on biomarker outcomes; whether this translates into meaningful clinical benefit remains to be seen. But the direction is promising — better delivery, broader brain distribution, and potentially improved safety profiles.

Why Both Matter — And Why the Distinction Matters More

Here's what I want families to hold:

Do the lifestyle work. It's not nothing. Building cognitive reserve, protecting vascular health, staying engaged — these create real protection. They may give you more good years, more functional capacity, more time. They're accessible to nearly everyone, regardless of insurance status or geography.

And understand that lifestyle isn't a cure. It doesn’t look like exercise or crossword puzzles alone will stop tau from spreading. These are different biological problems requiring different solutions.

Take disease-modifying options seriously — but realistically. For appropriate candidates, anti-amyloid therapies represent a genuine, if modest, advance. But they're expensive, require significant infrastructure, carry real risks, and deliver incremental rather than transformative benefit. They're one tool, not a solution.

The danger comes from conflating these approaches. Families who believe lifestyle alone prevents Alzheimer's may delay necessary planning or feel blindsided when decline happens despite doing "everything right." Families who pin all hope on medications may be devastated by modest results — or may dismiss the meaningful protection that lifestyle factors actually provide.

Neither position serves you.

What This Means for Your Family

People living with Alzheimer's consistently tell us two things matter most: being treated as whole people — not diagnoses — and having time to make decisions while their voice still counts. Biomarkers and treatments matter only insofar as they support those goals.

Navigating this territory requires holding complexity — understanding what's within your control, what isn't, and how to plan wisely for both. It means neither over-relying on prevention promises nor surrendering to fatalism. It means understanding that the science is advancing rapidly, that what we can measure and treat today was impossible five years ago, and that thoughtful engagement beats both wishful thinking and despair.

This is part of what I help families do: make sense of the science as it actually stands, understand what it means for their specific situation, and build a path forward that accounts for both what we know and what remains uncertain.

AI Can Help Interpret Your Health Data. That Is Not The Problem That Matters Most.

The new health tools from OpenAI and Anthropic are impressive. They also may not address what matters most for families navigating cognitive change.

OpenAI and Anthropic—two of the biggest names in AI—have launched health products within days of each other. Both let you connect your medical records and get personalized health insights. The various AI chatbots and tools available are impressive, they feel different, they have helped me do and understand things quickly and in new ways, but they have often convinced me of things that were not true, too.

This may remind some of us of the early WebMD and IBM Watson days. WebMD made health information accessible but didn't solve complex health decisions. IBM Watson promised AI-powered clinical intelligence but did not and was never accessible to regular people anyway. Now OpenAI and Anthropic have essentially combined both—AI-powered analysis that anyone can access.

Twenty years ago, WebMD was supposed to transform how we understood our health. And in many ways, it did—millions of people gained access to medical information that was previously locked away in textbooks and doctor's offices. It was a real improvement. It also didn't replace the need for doctors, didn't solve the problem of navigating complex health decisions, and didn't help families figure out what to actually do when facing something serious.

These new AI tools are more sophisticated than WebMD. They can synthesize your personal health data, translate medical jargon, and provide tailored responses. For many health questions, they'll be genuinely useful.

But if you're an adult child watching your parent struggle—wondering whether it's time to have the conversation about driving or finances, trying to coordinate care from a distance while family members disagree about what to do—you may find that these tools, like WebMD before them, don't quite address the problem you're actually facing.

What These Tools Were Designed For

Let's start with what these tools do well, because they do some things very well.

They were designed to help individuals understand their own health data. They pull together lab results from multiple providers. They translate medical terminology into plain language. They can identify patterns across health metrics, test results, and clinical notes. They're available at 2am when you're worried about a test result.

OpenAI reports that 230 million people ask ChatGPT health questions every week. Anthropic's head of life sciences captured the appeal: "When navigating through health systems and health situations, you often have this feeling that you're sort of alone and that you're tying together all this data from all these sources."

That's a real problem, and for many people—particularly those managing their own health with full cognitive capacity—these tools offer a real solution. They were well-designed for that purpose.

The question is whether that purpose matches what families navigating cognitive change actually need.

What These Tools Weren't Designed For

These tools were built on certain assumptions. The user is managing their own health. The user can evaluate whether the information seems accurate. The user can take action on what they learn. The user has access to the relevant health data.

For families navigating cognitive change, those assumptions often don't hold.

The person who needs help may not recognize they need it. Cognitive decline often impairs insight—a phenomenon clinicians call anosognosia. Your father may not notice the changes you're seeing, or he may be frightened and expressing that fear as anger when you raise concerns. AI can synthesize his medical records. It wasn't designed to help you navigate a conversation with someone who doesn't believe anything is wrong. The models weren’t trained on anosognosia data and I have not seen research that shows the models perform well in clinical cases involving social interaction when one partner has limited insight.

You may not have access to the data. These tools assume you're connecting your Apple Health, your patient portal, your lab results. But you're trying to help someone else—someone who hasn't given you access (or not full access), who may not remember their passwords, whose medical information you might legally be unable to see. Medical records often don’t even include the data that matters most for managing care decisions. Can you get an answer? Yes. Is that answer accurate? Unclear. Is that answer helpful? Unclear. Is that answer harmful? Unclear.

Family decisions aren't individual decisions. Your brother thinks you're overreacting. Your sister thinks Mom should be in a facility. You're trying to coordinate care while managing everyone's emotions, your own guilt, and a lifetime of family dynamics. These tools were designed for one person asking about their own health, not for the complexity of family decision-making.

Information wasn't the bottleneck. You've probably already Googled more than you wanted to know about cognitive decline. You've read the Alzheimer's Association materials. You may have a folder of articles about power of attorney and warning signs. The information exists. What you need is help figuring out what it means for your family and what to actually do about it.

What the Data Can't Tell You

AI health tools are only as good as the data they're trained on and the data they can access. Both have significant limitations for families navigating cognitive change.

Training data reflects healthcare's existing patterns. These models learned from existing medical records, research studies, and health information. If the healthcare system has historically under-diagnosed cognitive decline in certain populations, dismissed family concerns, or failed to document early warning signs, AI trained on that data will inherit those blind spots. The models are excellent at pattern recognition—but they can only recognize patterns that exist in their training data.

Medical records capture what gets documented, not what's happening. Your mother's medical record shows her last visit was "unremarkable." It doesn't capture that she's been hiding unpaid bills for six months, that she gave $5,000 to a phone scammer last week, or that she no longer recognizes her grandchildren's names. AI can only access the slice of reality shared with it.

Some populations are systematically underrepresented. A widely-cited study found that a common healthcare algorithm underestimated the health needs of Black patients by using prior healthcare spending as a proxy—encoding historical inequities into automated recommendations. When certain communities are underrepresented in training data, AI tools may work less well for exactly the populations that already face barriers to care.

Rural, older, and less digitally-connected populations may be excluded entirely. Nearly 30% of rural adults lack access to AI-enhanced healthcare tools. Adults over 75 are most likely to struggle with digital interfaces and most concerned about data privacy. The people most likely to be navigating cognitive changes are often least able to benefit from these technologies.

What Families Actually Face

Here's what I've learned about what families are actually navigating:

The conversations are harder than the information. Knowing your father's executive function has declined is one thing. Telling him he shouldn't manage the family finances anymore—without destroying your relationship—is something else entirely. These conversations require timing, judgment, and deep knowledge of family dynamics that no tool can provide.

The medical system often doesn't help until there's a crisis. You've mentioned your concerns to doctors. They did a brief cognitive screen, said "normal for age," and moved on. Meanwhile, you're watching someone make increasingly risky decisions and no one seems to take it seriously. AI tools that connect to medical records from those same dismissive appointments don't change this dynamic. AI tools that don’t have the information that matters most cannot integrate that information into guidance and care.

Caregiving is relentless and invisible. Caregiving is hard. The role demands constant vigilance, difficult decisions, and managing someone who may resent your help. Caregivers describe becoming "like a manager"—deciding everything on behalf of another person while that person often fails to understand why their autonomy is being taken away. This isn't an information problem. It's a human problem.

What you need changes over time. The questions you face in year one are different from year three or year seven. Decisions about healthcare, living arrangements, and finances unfold through ongoing negotiation within families. If the AI tool cannot accurately track those changes over time or treats each question in isolation or without full context, you may not get the guidance and support you need.

Where AI Fits—And Where It Doesn't

AI tools have been incredibly useful in some aspects of my work. They're useful for organizing information, troubleshooting, idea generation and testing, drafting documents, and surfacing patterns across work tasks and items. They help me like a clinical or research assistant I can bother at 2am. I see AI health tools serving a useful purpose in the future if all the risks and concerns are adequately addressed and if people want to use these tools. They may help surface data earlier, prepare better questions for appointments, and reduce some information-gathering burden.

But I see major gaps for what families navigating cognitive change most need:

• Interpret data in the context of a specific family's situation, values, and dynamics

• Navigate the conversations that preserve dignity while acknowledging hard truths

• Mediate disagreements between family members with different perspectives

• Provide continuity over a journey that spans years, not queries

• Exercise judgment about when to push, when to wait, and what this particular family can actually live with

This isn't a criticism of AI. These tools were well-designed for what they were designed for. They just weren't designed for this.

The Trust Question

Only 5% of Americans say they trust AI "a lot" for health decisions. Trust in AI health information is actually declining—30% now express distrust, up from 23% two years ago. Most people still view their doctor as the most trusted source. It is less clear how people will view their doctors when they partner with AI to provide care.

That skepticism may be healthy. These tools are new. They haven't yet demonstrated reliability in high-stakes, complex family situations. For families facing cognitive decline—where the stakes involve autonomy, dignity, safety, and relationships that span decades—caution seems appropriate.

The question isn't whether AI is good or bad. It's whether these particular tools, designed for these particular purposes, address what families actually need. That families and providers understand the risks and that families and providers know how to use the tools to deliver the most benefit for what matters most to families. This means adequately accounting for biases in the training data, models, and risks that come with turning over aspects of care to a new technology.

This isn't about AI competing with doctors or AI being forced on providers and families. It's about filling a gap that neither fills: helping families interpret what's happening in context, navigate the conversations that matter, and make decisions they can live with over the years this unfolds. The stakes are high to do this in the right way centering the families that are navigating these changes together.

I Don't Want to Play More Golf. I Want to Play More Golf with Men Who Provide Care.

A man I spoke with recently is navigating his wife's early cognitive changes. He's done everything right by the planning playbook—the logistics are solid: finances, decisions, problem-solving. He’s got that. That's the role he knows.

During our conversation, he mentioned a friend who got a care companion so he could play more golf. I have a complicated history with golf, so it is not the place I go for therapy. However, we weren’t talking about golf, we were talking about care. The care for his wife he provides and the support he needs. What I heard underneath: I don't want to escape from this. I want to know how to be in it.

What if he could play more golf with men who provide care?

What the Research Actually Shows

More men are finding themselves in the caregiving role than in prior generations yet most of what we know about supporting caregivers comes from research on women.

When researchers look at male and female dementia caregivers, the findings are more nuanced than you might expect.

Quantitatively, the differences are modest. Across studies, the measurable differences between male and female caregivers are smaller than stereotypes suggest.

Qualitatively, something different emerges. When researchers interview male caregivers, they describe distinct approaches to help-seeking. Men tend to focus on functional tasks first. They're less likely to identify as "a caregiver." They often wait for a kind of permission—from the person with dementia, from a professional—before seeking services. They may not know what the right services look like or who provides what their partner needs. They're patterns shaped by life experience that have real implications for how we design support.

What Male Caregivers Actually Face

Loneliness and isolation. This may be driven by reluctance to leave their loved one alone, friends gradually dropping away, and limited social networks that shrink further during caregiving.

Priority on maintaining couplehood. Male caregivers appear more concerned than female caregivers about being separated from their spouse. They may be reluctant to plan for respite care. Preservation of the relationship itself may take priority.

An unfamiliar role. For men socialized in traditional gender roles, caregiving represents new territory. Men may not see themselves as caregivers, but more importantly, men may not have been socialized to provide care. They may not know how to flex their emotional intelligence in quite this capacity, direction, or in such a sustained manner.

What the Evidence Says Actually Helps

In 2020, the Agency for Healthcare Research and Quality published a comprehensive systematic review of 627 studies on dementia care interventions. In 2021, the National Academies of Sciences, Engineering, and Medicine used this review to develop national recommendations.

The findings were sobering—and clarifying.

Only two types of interventions showed evidence of benefit strong enough to recommend for broad implementation:

1. Multicomponent caregiver interventions like REACH II (Resources for Enhancing Alzheimer's Caregiver Health), which combines education, skills training, problem-solving strategies, stress management, and support—delivered through a mix of in-home sessions, phone support, and group discussion. Low-strength evidence shows this approach reduces caregiver depression.

2. Collaborative care models that use multidisciplinary teams to integrate medical and psychosocial care. Low-strength evidence shows these improve quality of life for people living with dementia and reduce emergency room visits.

For all other interventions—including support groups as standalone approaches—the evidence was insufficient to draw conclusions. This doesn't mean they're ineffective. It means we can't yet determine from the research whether they work, for whom, or under what circumstances.

The National Academies report put it plainly: given the complexity of dementia care, mixed results across studies may reflect differences in populations, settings, or how interventions were implemented—not necessarily that the interventions don't work.

Translation: "Just talk about it" is rarely enough on its own. What the evidence supports is a playbook—education, skills, problem-solving, and support—customized to the situation you're actually in.

Bridging the Gap for Men

Here's what we don't yet have: rigorous research testing whether adapting interventions specifically for male caregivers improves outcomes. A 2023 systematic review explicitly noted that none of the digital education studies examined had reported outcomes separately by gender or adapted their approaches for male needs.

That's a significant gap. We're largely working from reasonable inferences rather than proven approaches.

That said, several principles emerge from what we do know:

Start with the practical. Men in caregiving situations often focus on functional issues first. Building rapport may work better when conversations begin with concrete challenges—managing medications, handling repeated questions, navigating the healthcare system—rather than asking about emotional impact directly.

Frame learning as skill development. The evidence shows psychoeducation works. For some men, framing this as building competence in a new domain may resonate better than framing it as processing emotions.

Create space for connection without forcing it. Qualitative research suggests some male caregivers value being around other men in similar situations. But the research does not conclusively show that men-only groups are necessary—only that some men find them valuable.

Address loneliness directly. Given how consistently loneliness appears in the research, any support for male caregivers should explicitly address social connection and isolation.

What This Man Might Actually Need

The man I spoke with doesn't need someone to tell him what to plan. He's done the planning. Based on what the evidence suggests, what might help him is:

• Understanding what's changing—translating the science of cognitive change into something he can work with

• Concrete strategies—what to say when she asks the same question, how to respond when she doesn't recognize familiar places, when to adjust expectations

• A map of what's coming—the predictable decision points he'll face, and when the window to address them starts closing

• Permission to struggle—hearing that this is hard, that finding it hard doesn't mean he's failing

• Someone in his corner—not for one consultation, but for the journey

References

Butler M, Gaugler JE, Talley KMC, et al. Care Interventions for People Living With Dementia and Their Caregivers. Comparative Effectiveness Review No. 231. AHRQ Publication No. 20-EHC023. Rockville, MD: Agency for Healthcare Research and Quality; August 2020.

National Academies of Sciences, Engineering, and Medicine. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press; 2021.

Pöysti MM, Laakkonen ML, Strandberg T, et al. Gender differences in dementia spousal caregiving. Int J Alzheimers Dis. 2012;2012:162960.

Sjøvoll TH, et al. "Seeking a Bridge Over Troubled Waters": Older men's experiences as dementia caregivers—A meta-synthesis. BMC Geriatr. 2025.

An inflection point is a moment when a relatively small cognitive change creates disproportionate risk for poor outcomes.

These aren't binary thresholds where capacity suddenly disappears. They're gradient transitions where specific cognitive functions decline in ways that impact specific real-world decisions.

The framework identifies 10 predictable decision points that most families encounter during cognitive transitions. If you recognize them early, proactive planning is still possible. If you miss the window, you're managing crisis.

Here's what to watch for:

DOMAIN I: Financial Decision-Making

1. Portfolio Complexity Exceeds Working Memory

What to watch for:

• Difficulty tracking multiple accounts

• Conversations with advisors require more repetition

• Struggling to synthesize overall investment strategy

• Increasing reliance on written summaries

The cognitive change: Working memory decline—difficulty holding and manipulating multiple pieces of information simultaneously

Why it matters: The person may still be able to discuss individual investments, but complex portfolio rebalancing, tax strategy, and multi-year planning may exceed current capacity. Without recognition of this change, they may agree to strategies they don't fully understand or resist necessary changes because they can't track the reasoning.

The decision point: Should we simplify the portfolio to match current capacity, or add oversight while maintaining complexity?

2. Bill-Paying Becomes Unreliable

What to watch for:

• Bills paid late, twice, or not at all

• Checkbook doesn't balance

• Confusion about automatic payments

• Insistence they paid something they didn't

The cognitive change: Executive function and prospective memory decline—difficulty remembering to perform future tasks and monitoring what's been completed

Why it matters: Bill-paying errors are often among the first visible signs that cognitive changes are affecting instrumental activities of daily living. Late payments can damage credit scores, duplicate payments drain accounts, and unpaid bills create legal consequences. More importantly, if bill-paying is compromised, more complex financial management is almost certainly at risk.

The decision point: Is this occasional forgetfulness that can be addressed with organizational systems, or is this evidence of declining capacity that requires direct oversight?

3. Susceptibility to Financial Exploitation

What to watch for:

• Sudden interest in questionable "investment opportunities"

• Difficulty ending sales calls

• Charitable giving disproportionate to values or means

• New "advisors" the family hasn't met

• Defensiveness when questioned about financial decisions

The cognitive change: Decline in judgment, emotional regulation, and social cognition—particularly the ability to detect deception, assess risk, and resist persuasion

Why it matters: Elder financial exploitation is estimated to cost older adults billions of dollars annually, with individual losses often averaging $120,000. Once exploitation begins, it tends to escalate. Victims are often too embarrassed to report it, and by the time family members discover it, significant assets may be gone.

The decision point: Can they still manage financial relationships independently, or do they need protective oversight while preserving as much autonomy as possible?

DOMAIN II: Health & Medical Decision-Making

4. Medication Management Becomes Unreliable

What to watch for:

• Medications taken at wrong times or in wrong doses

• Pills remaining in organizers days after they should have been taken

• Confusion about which medication treats which condition

• Duplicate or missed doses

The cognitive change: Executive function and prospective memory decline affecting the ability to follow complex medication regimens

Why it matters: Medication non-adherence is associated with increased hospitalizations, disease progression, and preventable complications. For conditions like hypertension, diabetes, or heart disease, inconsistent medication use creates serious health risks. It's also an early indicator that other complex health management tasks may be compromised.

The decision point: Can medication management be maintained with organizational systems and reminders, or is direct oversight required?

5. Complex Medical Decisions Exceed Comprehension

What to watch for:

• Struggling to weigh treatment trade-offs

• Asking appropriate questions but difficulty retaining information

• Changing mind repeatedly about treatment preferences

• Physician uncertain whether they truly understand implications

The cognitive change: Decline in complex reasoning, future orientation, and ability to weigh probabilistic outcomes

Why it matters: Medical decision-making capacity is decision-specific and task-dependent. Someone might retain capacity for routine medical decisions but not for complex treatment choices involving risk/benefit analysis and uncertain outcomes. Without proper assessment, patients may make choices they don't fully understand, or family members may inappropriately override autonomous preferences.

The decision point: Can they make this specific medical decision independently, or is supported decision-making needed to ensure understanding?

6. Health Maintenance Tasks Decline

What to watch for:

• Missed medical appointments

• Laboratory work that doesn't get completed

• Recommended screenings or follow-up visits falling through the cracks

• Health conditions worsening due to lack of consistent management

The cognitive change: Executive function decline affecting planning, initiation, and follow-through on health maintenance activities

Why it matters: Preventive health care and chronic disease management require consistent execution of multi-step tasks—scheduling appointments, attending visits, following up on recommendations, and coordinating between providers. When executive function declines, these tasks can fail even when the person intellectually "knows" they should do them.

The decision point: Can health maintenance be sustained with reminders and organizational support, or does someone need to take over coordination?

7. Advance Care Planning Window

What to watch for:

• Early cognitive decline but still able to discuss future care preferences

• The conversation keeps getting postponed because it's difficult

• Window for autonomous decision-making gradually closing

The cognitive change: Capacity for advance care planning remains intact, but progressive decline is foreseeable

Why it matters: This represents the last opportunity for the person's own voice to meaningfully guide future medical care. Once capacity is lost, families must make decisions without clear guidance from the person, often leading to conflict, guilt, and choices that may not reflect the individual's values.

The decision point: Is this the appropriate time to document preferences while decision-making capacity is intact?

DOMAIN III: Living Arrangements & Safety

8. Driving Capacity Threshold

What to watch for:

• Minor traffic incidents or fender-benders

• Getting lost in familiar areas

• Family members feeling anxious when riding along

• Slower reaction times

• Defensive reactions and insistence they're "fine" despite observable concerns

The cognitive change: Possible decline in processing speed, visual-spatial function, divided attention, reaction time, judgment, or executive function—all critical for safe driving

Why it matters: Driving represents independence and identity for most adults. Loss of driving privileges is often one of the most emotionally charged transitions in cognitive aging. Yet continuing to drive with significantly impaired capacity creates safety risks for the driver and others. This requires objective assessment, not family opinion or self-report alone.

The decision point: Can they still drive safely without restrictions? Do they need limitations (daylight only, familiar routes, limited radius)? Must they cease driving?

9. Independent Living Safety

What to watch for:

• Unopened mail accumulating

• Spoiled food in refrigerator

• Missed medications

• Home increasingly cluttered or unkempt

• Basic home maintenance not occurring

• Safety hazards developing

• Insistence they're managing fine despite visible evidence to the contrary

The cognitive change: Executive function decline affecting initiation, planning, and organization of daily tasks

Why it matters: This is the inflection point where "aging in place" transitions from preference to potential safety risk. Concerns include fall risk, medication errors, nutritional deficits, fire hazards, and vulnerability to exploitation. However, moving someone from their home prematurely can accelerate cognitive and functional decline and significantly impact quality of life.

The decision point: Can safety be maintained at home with appropriate supports, or has capacity declined to the point where a more structured living environment is necessary?

10. Social Isolation and Support System Erosion

What to watch for:

• Decreasing engagement with friends and community

• Not returning phone calls

• Declining social invitations

• Forgetting social commitments

• Informal support network no longer in place

The cognitive change: Executive function and social cognition changes that make maintaining relationships more effortful, combined with reduced initiation and follow-through

Why it matters: Research indicates that social isolation is associated with accelerated cognitive decline, increased vulnerability to exploitation, and loss of the informal safety net that often identifies problems early. Without regular social contact, dangerous situations can develop undetected. Isolation may also increase dependence on whatever limited relationships remain—potentially increasing exploitation risk.

The decision point: Is the current level of social engagement adequate for safety and well-being, or does structured social support need to be introduced?

What to Do With This Framework

For Families

If you're noticing changes and wondering "is this normal aging or something more?"—that awareness is important.

Don't wait for crisis. Don't wait for formal diagnosis.

Consider these questions:

• Is your parent managing finances and medications reliably?

• Are health decisions becoming difficult to navigate independently?

• Is driving safety becoming a concern?

• Is independent living creating safety risks?

• Is their support system diminishing?

If you're observing difficulties in 1-2 of these areas, it may be appropriate to seek professional assessment.

For Physicians

Routine brief cognitive screening can detect dementia but doesn't assess functional capacity for specific real-world decisions.

When patients are facing major medical or financial decisions, or when you observe functional decline in health management despite normal screening results, consider referral for comprehensive assessment including decision-specific capacity.

For Wealth Advisors

When you observe:

• Portfolio management discussions requiring more repetition than previously

• Uncharacteristic investment decisions

• Difficulty tracking multiple accounts that were previously well-managed

• Increased reliance on your recommendations without apparent understanding

• Family members expressing concerns

Consider: Does my client's current cognitive capacity match the complexity of their portfolio and financial decision-making requirements?

From Reactive to Proactive

The traditional approach to cognitive aging is reactive: wait for crisis or formal diagnosis, then respond.

The 10 Cognitive Inflection Points framework enables proactive stewardship: identify specific decision points when comprehensive assessment should inform planning, intervene before crisis occurs, and navigate transitions strategically while preserving autonomy.

This framework serves:

• Families - by transforming vague worry into specific, observable indicators and actionable steps

• Physicians - by connecting brief cognitive screening to functional decision-making capacity assessment

• Wealth advisors - by matching portfolio complexity to client cognitive capacity and identifying when oversight may be needed

• The individuals themselves - by preserving autonomy where capacity exists while providing appropriate protection where capacity is declining

What Cognitive Stewardship Provides

Think of it as proactive planning for cognitive health, analogous to how you might work with a financial advisor for wealth management.

Just as you wouldn't wait until a financial crisis to plan for retirement, proactive planning for cognitive changes can prevent crises while preserving quality of life.

Comprehensive Assessment

• Understanding current cognitive strengths and areas of change

• Identifying which decisions can be made independently and which may need support

• Establishing documented baseline for future comparison

Strategic Planning

• Creating a roadmap informed by likely trajectory

• Preserving independence and autonomy while addressing identified risks

• Developing a proactive plan rather than crisis-driven reactions

Ongoing Professional Partnership

• Regular monitoring as cognitive capacity evolves

• Adjusting interventions and supports before crises develop

• Expert guidance through one of life's most challenging transitions

The Bottom Line

Cognitive Stewardship is not about "taking over" or removing autonomy.

It's about providing clear information and strategic guidance so families can make informed decisions together while respecting the individual's remaining capacity and preferences.

If you're observing difficulties in 1-2 of these areas, you may be in the window where proactive planning can still make a meaningful difference.

Ready to learn more?

Schedule a complimentary consultation to discuss what you're noticing and whether comprehensive assessment and cognitive stewardship planning might be appropriate for your family.

Treasure Coast Cognition
Luke Stoeckel, PhD
Licensed Clinical Neuropsychologist

📞 (772) 202-0486
✉️ luke@treasurecoastcognition.com
🌐 www.treasurecoastcognition.com

Serving families in Vero Beach and throughout Florida's Treasure Coast

© 2025 Treasure Coast Cognition LLC. All rights reserved.

Cognitive Care is a Family Affair

"When I Want Your Help, I'll Ask"

Note: Names and identifying details have been changed to protect family privacy.

How one family went from isolated concern to open conversation in four weeks—and what it means for families navigating cognitive aging:

"When I want your help, I'll ask."

The message was clear. The boundary was firm. The door was closed.

This is what an adult child heard from their parent this past fall when they tried—gently, carefully—to raise concerns about their loved one's memory, confusion with bills, the unsafe moments they'd witnessed.

The adult child backed off. What else could they do? These were their parents' private matters. They lived hundreds of miles away. They had no standing, no permission, no right to push.

So they watched. And worried. And waited for things to get worse.

THE IMPOSSIBILITY

If you're reading this, you probably know this feeling.

You see changes, you experience changes. Subtle at first, then less so. Memory lapses. Confusion about dates. Difficulty with tasks that used to be automatic. Concerning decisions about money or safety.

But when you try to raise concerns—when you suggest it might be time to think about next steps and what those next steps might be—you hit a wall.

"I'm fine." "You're overreacting." "Mind your own business." "When I want your help, I'll ask for it."

And the conversation dies. The concern remains. The situation continues.

You're stuck between two impossible choices: stay silent and watch things deteriorate, or push forward and damage the relationship. You don't understand the space between.

So most families do what this family member did. They wait. They watch. They hope for the best while fearing the worst.

Until crisis forces the conversation nobody wanted to have.

WHAT CHANGED

Four weeks later, everything was different.

Not because the loved one's cognition suddenly improved. Not because the spouse changed their mind about privacy. Not because anyone had a miraculous breakthrough in communication skills. There are still important conversations that need to happen where family may still not be aligned.

What changed was this: the family engaged in Cognitive Stewardship.

This is what Cognitive Stewardship meant to this family:

"It was so challenging earlier this year to know that my parents were struggling but to not have permission to engage, support, envision, and create a different trajectory."

"I believe that some of the most connected and fulfilling years of my parents' lives could be ahead, if we can help them see and create that future."

"Prior to the engagement with you, I did not feel that I had permission from my parents to engage in discussions about care, approach to managing care, and healthcare and other providers. These were my parents' private matters."

"The engagement with you has enabled us to talk about and has encouraged more normalization of this need for help, and I think my parents will be more likely to ask for that help in the future."

From "when I want your help, I'll ask" to productive family dialogue.

In four weeks.

WHAT MADE THE DIFFERENCE

It wasn't magic. It was structure.

What we built together didn't come from brilliant insight into family dynamics or superior communication techniques. What we built together started with something simpler and more powerful: permission structure.

When cognitive changes are subtle, families lose the framework for productive engagement. Adult children don't have permission to raise concerns without seeming presumptuous. Spouses don't have permission to suggest help without appearing disloyal. Everyone walks on eggshells around conversations that desperately need to happen.

An expert third party changes this dynamic. Expertise, trust, and partnership with someone outside the family matters.

When there's a structured framework for family meetings, decision guidance, and ongoing monitoring, it normalizes asking for help instead of making it feel like defeat.

Suddenly:

Concerns can be raised without damaging relationships

Data replaces guesswork

The conversation becomes collaborative, not confrontational

Everyone has permission to engage

The same family member who was told to back off described our work this way:

"Throughout the engagement, I've really appreciated your willingness to meet my family where we are and help us take better next steps... You've listened deeply throughout the engagement in ways that are unlike my experience with other healthcare providers and models."

"This enabled me to learn by engaging with you and your feedback—leaving us in a fundamentally different place than where we were when we began our engagement together just four weeks ago."

WHAT "FUNDAMENTALLY DIFFERENT" LOOKS LIKE

Let me be specific about what changed for this family:

Before our engagement:

• Adult child shut out of care discussions

• Spouse managing alone, overwhelmed but not asking for help

• Loved one’s cognitive changes dismissed as "normal aging" or “dementia”

• Family members uncertain how to talk about what was happening

• Important conversations simply not happening

After four weeks:

• Family aligned on loved one's cognitive trajectory and what it means

• Clear plan for next steps across medical, legal, and care domains

• Spouse normalized asking for support instead of doing everything alone

• Conversations about care happening with dignity and respect for everyone

• Adult child positioned to help in ways that support rather than threaten

• Loved one engaged in the process and thankful to have partnership and support

• Difficult conversations that lead to meaningful actions moving forward

The family described the work as having "the potential to be transformative for my loved one and for my family—which means it's priceless."

Their words.

THE 7-10 YEAR WINDOW

Here's what most families don't realize: there's typically a 7-10 year window between the first subtle cognitive changes and a formal dementia diagnosis.

During these years, families face their most consequential decisions:

• Should we downsize or relocate?

• Who should manage finances?

• When should we update estate planning?

• Is it safe to drive?

• What care arrangements make sense?

These decisions profoundly impact autonomy, safety, finances, and family relationships.

And traditional healthcare is not set up to provide support during this critical window.

Primary care can offer brief screening, but not always. Often: "everything looks normal for your age." Neurology is reactive: you see them after symptoms are obvious. Memory clinics come too late: after diagnosis, when options have narrowed.

So families muddle through alone, making high-stakes decisions without expert guidance, often getting the timing wrong in ways that cost autonomy, money, and family harmony.

This is exactly the gap Cognitive Stewardship fills.

A DIFFERENT APPROACH

Traditional healthcare asks: "Is there a disease we need to diagnose and treat?"

Cognitive Stewardship asks: "How do we help this family navigate this transition with clarity, dignity, and the best possible outcomes?"

It's not medical diagnosis. It's not psychotherapy. It's not crisis management.

It's expert partnership during the years that matter most—when decisions can still be made proactively, when autonomy can still be preserved, when family relationships can still be protected.

Here's what it looks like in practice:

Comprehensive baseline evaluation (not 10-minute screening): 3-4 hours of neuropsychological assessment that provides real data about cognitive trajectory, not just "seems fine for your age"

Longitudinal monitoring (not episodic visits): check-ins that track changes over time and catch concerns early

Decision guidance (not "wait and see"): expert perspective on the cognitive implications of major life decisions as they arise

Family facilitation (not individual patient focus): structured meetings that help families align, communicate, and move forward together

Coordination with your team (not isolated care): integration with attorneys, financial advisors, and medical providers who need cognitive perspective to do their jobs well

WHAT FAMILIES SAY

The family members I've been quoting described their experience this way:

"Your proactive and comprehensive approach to managing cognitive change provided my family and me with an alternative model for engaging with cognitive changes—one that did not accept the changes as immutable, but rather sought to positively influence trajectory."

"I believe this will have a significant impact on health outcomes, as well as my parents' feelings of empowerment and being in a greater position of control regarding their future lives."

The loved one shared: "he has never met a doctor that was so knowledgeable and yet put him very much at ease."

The spouse and primary care partner? The one who said "when I want your help, I'll ask?" They said: "You struck just the right chord, and I was so thrilled to see laughter and joking with you. It has been quite a long time since I've seen this, so thank you! I especially value that you advise us to focus on what can still be done, and that really matters to me. Thank you for helping us through this confusing and challenging time of our lives."

"[This work has] the potential to be transformative for my loved one and for my family—which means it's priceless."

That's the goal. Not to stop cognitive aging. But to positively influence trajectory. To preserve agency. To support families in making decisions on their timeline, not crisis timeline.

To create permission structures that enable the conversations that matter most.

WHO THIS IS FOR

Cognitive Stewardship is designed for families who:

✓ Notice subtle cognitive changes but aren't finding adequate support in traditional healthcare ✓ Face important decisions in the next 6-12 months and need expert guidance on cognitive implications ✓ Want proactive partnership instead of reactive crisis management ✓ Value preserving autonomy and dignity through this transition ✓ Are willing to invest in preventing regret

It's NOT a fit if you need: ✗ Emergency or crisis care (we're proactive and structured) ✗ Medical diagnosis or treatment (we provide guidance and monitoring) ✗ Quick fixes or one-time consultations (we build relationships over time)

A PERSONAL NOTE

I've spent 20+ years studying the exact window this family was navigating—at Harvard, UAB, Massachusetts General Hospital, and then at the National Institutes of Health, most recently, the National Institute on Aging.

My research focused on cognitive and decision-making assessment and intervention, especially early cognitive change detection and decision-making during cognitive transitions. Deep expertise in this precise problem.

And what became crystal clear: The expertise families desperately need during the 7-10 year pre-diagnostic window simply isn't available in most communities.

Which is why I've returned to my hometown of Vero Beach to launch Treasure Coast Cognition.

To provide the specialized support families are looking for and not finding.

To help families move from "when I want your help, I'll ask for it" to "we're navigating this together."

To create permission structures that make impossible conversations possible.

IF THIS RESONATES

If your family is stuck or you know a stuck family—seeing concerning changes but lacking permission to engage, wanting to help but meeting resistance, knowing conversations need to happen but finding doors closed—I understand.

I know what makes the difference between staying stuck and moving forward together.

And I'm here to help.

Whether you're an adult in your 50s-70s noticing changes in yourself, an adult child managing aging parents from across the country, a local family facing difficult decisions together, or a concerned friend—Cognitive Stewardship might be exactly what you need.

Not to fix everything. But to create the framework for moving forward with clarity, dignity, and expert guidance.

The door that felt closed can open. The conversation that felt impossible can happen. The family that felt stuck can move.

I've seen it. Four weeks ago, in fact.

Ready to explore whether Cognitive Stewardship is right for you or a family you know?

The Gift of Early Action

This week, I received an email that told the story of why Treasure Coast Cognition has a role in the community.

Note: Names and identifying details have been changed to protect family privacy.

A local husband wrote to share his wife's Alzheimer's journey. The email came through a chain of community connections. Before I'd even met them, I knew their story because it happened in our community.

There was a diagnosis of Alzheimer's disease (the most common form of dementia). By any measure, they're beyond the Cognitive Stewardship window. The family knew that. But as I heard their story, I was struck by something powerful: the choices they made years before diagnosis have shaped everything that came after.

The Window That Changes Everything

Here's what they shared about their timeline:

• 4-7 years before diagnosis: Small signs missed at the time (typical)

• 2 years later: Acknowledgement of what was happening - and immediate action

• 3 years later: Found community living where they could secure future memory care

• 6 months later: Official diagnosis

That period - roughly 18 months of knowing something was wrong but before formal diagnosis - that's the window. That's when decisions were made that have preserved dignity, peace of mind, and quality of life together.

They chose their living situation. They built their support system. They established their care team. They had conversations while everyone could still fully participate in them.

These weren't medical decisions. They were life decisions. And they made them while they still had the cognitive capacity and emotional bandwidth to make them well.

The Cost of Waiting

The husband wrote something haunting: "In looking back I realized that I should have recognized the signs much earlier." He's kept a diary, reconstructing the timeline. He now sees signs going back earlier, maybe even much earlier. So do others.

This is the pattern I see repeatedly in research and clinical practice: By the time families get a formal diagnosis, they've already lost 5-10 years of the window when proactive planning could have made the biggest difference.

Those aren't just lost years for intervention. They're lost years for choice.

The husband shared another story: Last January, they noticed a longtime friend repeating stories. He talked with the friend's wife, shared what they'd learned. The friend acted early and has started a new disease-modifying therapy. He "recognizes that they are now on a similar journey."

That conversation - one friend helping another recognize what's happening early enough to act - that's the intervention that matters most. Not a medication. Not a test. Human connection in the service of preserving choice.

Preserve Choice

When I first started thinking about Treasure Coast Cognition's messaging, a friend mentioned Volvo. Not because I wanted to sell safety features. But because Volvo understood something fundamental: people don't buy safety - they buy the future they want to preserve.

Volvo didn't say "three-point seatbelts and crumple zones." They said "they lived." They showed families intact and futures and choices preserved.

That's what Cognitive Stewardship is really about.

This family made choices early that are still paying dividends today:

• They still live in their condo, not institutional memory care

• They travel internationally with friends (who understand and support them)

• They participate in community activities and engage socially

• They spend nights in their community living environment by choice, not necessity

• Everyone was able to participate in planning this future

These choices exist because they acted early. The wife driving to the appointment where they made the community living deposit. The wife participating in care decisions. While "reluctant" was still possible - before cognitive decline made even reluctance impossible.

We Need Each Other

Here's what moved me most about the husband’s email. After explaining why they're beyond my Founding Families program window, he wrote:

"It may be that the greatest value in any relationship might be in my/our ability to share with others in your program who may be just beginning their journey."

This is what community means in the context of cognitive aging. We need families who are further along to light the path for families just starting out. We need the courage of people who've navigated these transitions well to give permission to people who are afraid to begin.

Clinical expertise matters. Neuropsychological testing matters. Evidence-based interventions matter.

But so does this: A husband who's kept a diary so he can answer doctors' questions accurately. A wife who voluntarily stopped driving and sold her car - no dramatic intervention needed - because the relationship and trust were strong enough. A friend who noticed repeating stories and cared enough to have a hard conversation.

The dementia journey isn't something we do to people or for people. It's something we walk alongside people through. And we walk it together, as a community.

The Holiday Gift We Can All Give

As we move into the new year, here's what’s on my wish list:

If you're noticing changes in yourself or someone you love - memory slips that seem different than normal aging, difficulty with tasks that used to be automatic, subtle shifts in judgment or personality - don't wait for a crisis to force action.

You have a window. It's open right now. The choices you make in this window will shape everything that comes after.

If you've walked this journey and navigated it well - like this family - your wisdom matters. The families just starting out need to know it's possible to do this with grace, with dignity, with continued joy. They need your permission to act early, to have hard conversations, to prioritize choice while choice is still possible.

If you're connected to families in either situation - make the introduction. Build the bridge. We find our way through this together or not at all.

Looking Ahead

I'm planning to meet with the family in January. Not as a clinical evaluation - they have excellent care already. But as a conversation about how families who've done this well might support families just beginning.

I am thankful for the email that landed in my inbox this week, sent by a husband I've never met, forwarded through a chain of community connections, written with candor and courage about the hardest journey a family can walk - that email is exactly why this work matters.

We preserve choice by acting early. We act early by supporting each other. We support each other by building community that doesn't look away from hard things.

That's the gift we can give each other this holiday season and into the new year.

We're all in this together. And we all need each other. 🎁

What is Direct Cognitive Care?

A New Model for Families Navigating Cognitive Changes

If you or someone you love is experiencing early memory changes, you've likely discovered a frustrating gap in our healthcare system. Traditional neuropsychology offers brief evaluations that result in a report and discharge. Insurance-based neurology provides 15-minute medication checks. Neither offers what families actually need: ongoing partnership, comprehensive assessment, and proactive guidance during the years when planning still matters most.

This is why we created Treasure Coast Cognition as a Direct Cognitive Care practice - applying the proven principles of Direct Primary Care and Direct Specialty Care to neuropsychology and cognitive health services.

Understanding Direct Care

Direct Care is a growing healthcare movement that removes insurance companies from the relationship between patients and providers. Instead of billing insurance for each service, Direct Care practices operate on a membership model - patients pay a periodic fee (monthly, quarterly, or annually) directly to their provider in exchange for comprehensive, personalized care.

The Direct Primary Care (DPC) movement started about a decade ago when family doctors and internists recognized that insurance constraints prevented them from actually caring for their patients. By eliminating insurance billing, these physicians could spend 30-60 minutes per appointment instead of 7-12 minutes, offer same-day or next-day access, and communicate directly with patients via phone, email, or text.

The results were transformative: happier doctors, healthier patients, and lower overall healthcare costs.

More recently, medical specialists have begun adopting this same model, creating what's called Direct Specialty Care (DSC). Rheumatologists, cardiologists, neurologists, psychiatrists, and other specialists are discovering that insurance-free practice allows them to deliver the kind of care they were trained to provide.

Direct Cognitive Care brings this proven model to cognitive health.

Why Cognitive Health Needs Direct Care

Consider what happens when someone starts experiencing cognitive changes in the current system:

The Traditional Path:

1. Family notices memory problems

2. Primary care doctor does a brief screening (5-10 minutes)

3. Referral to neurologist (wait time: 3-6 months)

4. Neurologist appointment (15-20 minutes, focused on ruling out treatable causes)

5. Maybe a referral to neuropsychology (wait time: 2-4 months)

6. One comprehensive evaluation (if insurance approves)

7. Written report sent to referring doctor

8. Patient discharged back to primary care

9. Family left wondering: "Now what?"

What's missing: The ongoing partnership families need during the 7-10 year window between first symptoms and formal diagnosis - the exact time when proactive planning, financial capacity assessment, family education, and care coordination could make the biggest difference.

Insurance doesn't reimburse for these services. Traditional neuropsychology practices can't survive providing them. So families navigate this critical period largely on their own, often making decisions without proper cognitive guidance.

Enter Cognitive Stewardship

Direct Cognitive Care removes insurance barriers and makes true Cognitive Stewardship possible. Here's what Cognitive Stewardship looks like in practice:

Comprehensive Assessment

Instead of rushing through a 90-minute evaluation to satisfy insurance requirements, we spend 4-6 hours across multiple sessions getting to know you and understanding you. We use established neuropsychological measures (not proprietary screens), conduct detailed interviews with family members, and assess real-world functioning including financial capacity - a critical but often overlooked indicator of early decline.

Ongoing Monitoring

Cognition doesn't change once and stay stable. Cognitive Stewardship includes monitoring sessions where we track changes over time, adjust recommendations, and address emerging concerns before they become crises. We catch problems early - when intervention still works.

Direct Access

Questions don't wait for scheduled appointments. With Cognitive Stewardship, you have direct access via phone and email between sessions. Worried about a medication side effect? Confused about what to tell the estate attorney? Concerned about a recent incident? You don't wait three months to ask - you reach out, and we respond.

Care Coordination

Your cognitive health doesn't exist in isolation. We communicate directly with your physicians, coordinate with your estate planning attorney, consult with your financial advisor, and speak with adult children or other family members (with your permission). This coordination rarely happens in traditional practice because insurance doesn't pay for it. In Cognitive Stewardship, it's built in.

Family Education and Support

Understanding what's happening is half the battle. We invest significant time educating families about cognitive changes, what to expect, how to plan, and what interventions might help. We help you make sense of confusing medical information and translate research into practical guidance.

Who Cognitive Stewardship Serves

Cognitive Stewardship is designed for families who:

• Are experiencing early cognitive changes but not yet diagnosed

• Want comprehensive assessment, not just a diagnosis

• Need ongoing guidance as cognition evolves

• Are making important financial, legal, or healthcare decisions

• Value proactive planning over crisis management

• Can invest in preventing cognitive decline complications

• Want a genuine partnership, not episodic care

This model works best for families in that critical 7-10 year window between first symptoms and formal dementia diagnosis - when stakes are highest, questions are most pressing, and traditional healthcare offers the least support.

What Cognitive Stewardship Is Not

It's important to understand what we're not:

Not concierge medicine. Concierge practices charge fees for access while still billing insurance for services. We provide all services with transparent pricing and no insurance billing at all.

Not a replacement for medical care. We don't prescribe medications or manage medical conditions. We work alongside your physicians, providing the cognitive assessment and care coordination they don't have time for in their insurance-based practices.

Not one-size-fits-all. Every family's situation is different. Cognitive Stewardship gives us the flexibility to customize services to your actual needs rather than fitting you into insurance's predetermined boxes.

The Broader Movement

Cognitive Stewardship is a new category aligned with the Direct Cognitive Care model. This is part of a larger transformation in American healthcare. Thousands of clinicians across all specialties are rejecting insurance-driven medicine in favor of direct patient relationships. They're proving that when providers can focus on patient needs instead of billing codes, everyone benefits: better outcomes, lower costs, less burnout, stronger relationships.

We're bringing this proven model to cognitive health because families facing cognitive changes deserve the same benefits: comprehensive assessment, ongoing support, care coordination, and genuine partnership throughout the journey.

Is Cognitive Stewardship Right for You?

If you're reading this because someone you love is experiencing cognitive changes, ask yourself:

• Do you want more than a one-time evaluation and report?

• Would ongoing monitoring and guidance help your family make better decisions?

• Do you value having an expert partner throughout this journey?

• Can you invest in preventing crises rather than just reacting to them?

If you answered yes, Cognitive Stewardship might be exactly what you need.

Traditional healthcare wasn't designed for the kind of comprehensive, longitudinal cognitive care families facing early decline require. Insurance won't pay for it. Hospital systems can't provide it. But Cognitive Stewardship makes it possible.

That's why we built Treasure Coast Cognition as a Direct Cognitive Care practice, offering a new service, Cognitive Stewardship, to meet the needs of families facing cognitive changes, who deserve better than what the traditional system offers.

Resources:

https://www.dpcalliance.org/

https://dscalliance.org/

Does Your Smartphone Need Cognitive Support Mode?

We live in a world where an iPhone has 47 different settings we can customize. Airplane mode. Dark mode for evening reading. Focus modes that silence work emails after 6 PM. Screen time limits. A bedtime routine that dims the display and mutes notifications. Even a driving mode that blocks texts while the car is moving.

But there's no setting for the most predictable change of all: cognitive decline.

When loved ones start showing early signs of memory problems—missed bill payments, confusion about unfamiliar emails, susceptibility to urgent phone calls from "the IRS"—what do we do? Most of us improvise. If you see these changes in a parent, you might enable parental controls meant for children. If you have children, you have also struggled to do this for your children, too. Maybe you change passwords and stored them…somewhere. Hope YouTube does it for you? Set up transaction alerts. Create a patchwork of protections that feel simultaneously inadequate, confusing, and ill-fit: how do you know these protections will “work” for your loved one or yourself?

The technology exists. It just wasn't designed for what matters most.

The 7-Year Vulnerability Window

Here's what research tells us: financial and digital vulnerability doesn't emerge suddenly at dementia diagnosis. It begins years earlier—often 5-7 years earlier—in a window when people still have insight and could benefit from graduated support rather than wholesale loss of independence.

Studies tracking tens of thousands of older adults show that financial problems—missed payments, unusual transactions—emerge an average of six years before formal diagnosis. By the time someone is diagnosed with dementia, significant damage may already have occurred.

Adults over 60 lose an estimated $61 billion annually to financial exploitation. Investment scams alone accounted for $538 million in reported losses in 2024. And with AI making voice cloning and deepfakes trivial, the environment is getting exponentially harder.

AI Acceleration

In 2024, a grandmother in Arizona received a frantic call from her grandson. He'd been in a car accident. He needed $15,000 wired immediately for bail. He was crying. She could hear his voice breaking with fear.

She wired the money within an hour.

Her grandson had never been in an accident. The voice was generated by AI from a 30-second TikTok video he'd posted months earlier. Deepfake video technology can create persuasive footage of trusted figures—financial advisors, doctors, family members—saying things they never said.

We're entering an era where the warning signs we taught people to watch for—"does this email have typos?" "does the caller sound like your real grandson?"—no longer protect anyone. The exploitation techniques are evolving faster than human judgment can calibrate, even for people with intact cognition.

For someone with mild cognitive impairment? For someone whose executive function is quietly declining, whose ability to update beliefs in light of new information is compromised, whose processing speed can't keep pace with rapid-fire persuasion tactics? The current digital environment is a targeting system optimized to exploit exactly their vulnerabilities.

The same AI that makes exploitation easier could also make protection possible for the first time. Machine learning already powers sophisticated fraud detection at financial institutions. Behavioral anomaly detection can identify unusual spending patterns, out-of-character transactions, merchant categories associated with scams. The technical capability exists to build protective scaffolding around cognitively vulnerable adults.

But the scaffolding doesn't exist as consumer-facing technology. Not in any coordinated, accessible, appropriately-calibrated way.

We Need AI For Our AI

If you search for solutions today, here's what you might find:

Apple's Assistive Access creates a completely simplified iPhone interface with large icons, minimal apps, and controlled entry/exit via passcode. It's thoughtfully designed—for severe cognitive disabilities. For someone with MCI who still manages most of their life independently but needs guardrails around high-risk decisions, it's far too restrictive. It's a binary switch when what's needed is a dimmer.

Third-party simplified launchers for Android phones—BIG Launcher, BaldPhone—reduce visual complexity and increase touch target sizes. Helpful for navigation, useless for preventing wire transfers to scammers.

Financial monitoring services like EverSafe and Carefull use AI to detect unusual transactions and alert designated family members. They're valuable tools. They're also boutique services that require families to know they exist, navigate signup, pay monthly fees, and integrate them into a care plan. Only a small fraction of at-risk families ever find them. Most discover them after exploitation has already occurred, if at all.

FINRA Rule 2165 permits financial institutions to place temporary holds on disbursements when they suspect exploitation. Rule 4512 requires firms to make reasonable efforts to obtain a Trusted Contact Person who can be notified when there are concerns. These are meaningful regulatory protections. Most families have never heard of these rules. Most financial advisors don't proactively implement them until a crisis forces the conversation.

There’s no standardized smartphone-based “Cognitive Support Mode” or tool that automatically:

• detects early cognitive changes,

• intervenes to prevent financial or digital exploitation,

• and adapts interfaces based on cognitive ability.

What "Cognitive Support Mode" Could Be

First, smartphones do not appear to cause dementia. In fact, engaging with digital tools may even help maintain cognitive function. The problem isn’t technology use — it’s that technology does not adapt as cognition changes. Imagine if it did. When someone received an MCI diagnosis, their neurologist could say: "One thing we know is that financial and digital vulnerability tends to emerge in this stage. There are protections we can enable now. Let's talk about Cognitive Support Mode for you."

Not a single on/off switch. A graduated system that maps to the trajectory of cognitive decline, configured collaboratively with clinical input, adjustable as needs change.

Tier 1: Enhanced Awareness (MCI with intact insight)

The person retains decision-making capacity but could benefit from prompts and friction at decision points:

• Confirmations for high-risk actions: "You're about to wire $5,000 to an account you haven't used before. Call [Trusted Contact] to confirm this is legitimate."

• Scam detection overlays: When an email exhibits phishing characteristics—unfamiliar sender, urgent language, request for credentials—a banner appears: "This message has patterns commonly seen in fraud attempts."

• Transaction summaries: Weekly digest to both the person and a designated family member showing spending patterns, new payees, unusual merchants.

• Cooling-off periods: For large purchases or irreversible transactions, a 24-hour delay with easy cancellation option.

The principle: Informational, not restrictive. The person remains in control but gets decision support at critical moments.

Tier 2: Graduated Restrictions (MCI progressing, partial insight)

As capacity declines, more structural guardrails become appropriate:

• Merchant category blocks: Disable purchases of gift cards (the #1 scam payment method), block cryptocurrency platforms, restrict wire transfers.

• Dual-approval requirements: Transactions over a configured threshold require confirmation from a designated person before processing.

• Simplified interface options: Reduce app access to essentials, increase font sizes and contrast, eliminate notification overload.

• Velocity limits: Flag rapid sequences of transactions or interactions with unfamiliar contacts as requiring review.

The principle: Preserve autonomy where safe, add guardrails where risky. We want to make routine decisions independently, but high-stakes actions could be protected.

Tier 3: Supported Decision-Making (early dementia, fluctuating capacity)

When capacity is significantly compromised but the person still engages with technology:

• Trusted helper mode: A designated trusted helper receives real-time notifications of high-stakes activity and can intervene before decisions are made.

• Curated access: Only pre-approved apps and contacts available. New apps or contacts require helper approval.

• Read-only sensitive functions: Can view sensitive information, cannot take action.

• Voice verification for high-stakes decisions: "To confirm this wire transfer, please call your designated contact at [number]."

The principle: Maintain engagement while preventing exploitation. The person isn't locked out of their digital life, but significant decisions involve support.

Critical Design Elements

For any of this to work—to be ethical, to preserve dignity, to actually protect people—certain design principles are non-negotiable:

Configurability: Not one-size-fits-all. A clinician and family collaborate to set thresholds, restrictions, and notification recipients based on individual assessment. What's appropriate for one person with MCI is patronizing for another.

Transparency: The person knows what protections are in place and why. Not surveillance, but disclosed support. "Transaction alerts are enabled because we agreed this would help catch unusual activity early."

Reversibility: The person can appeal restrictions. Involve the clinician in reassessment. Graduated protections shouldn't become unilateral control.

Privacy-preserving: Alerts about concerning patterns, not keystroke logging. Monitoring without surveillance.

Progressive activation: Start with minimal restrictions, escalate only as needed, de-escalate if capacity improves (medication adjustment, treatment of depression, resolution of delirium).

The technical components exist:

• AI behavioral anomaly detection is already deployed for fraud prevention at financial institutions

• Apple, Google, and Microsoft already build sophisticated accessibility frameworks

• Clinical assessment tools to calibrate appropriate protections exist and are validated (though in healthcare, we sometimes deploy first and validate later)

Why It Doesn't Exist

Here are some common obstacles:

Liability exposure: What if "Cognitive Support Mode" fails to prevent a scam? Lawsuit. What if it's too restrictive and the person loses money because they couldn't execute a time-sensitive transaction? Lawsuit. The safest legal strategy is to do nothing, let families improvise, and disclaim responsibility. Are you disclosing cognitive status by opting in to “Cognitive Support Mode” and are you protected?

Market uncertainty: Who pays for development? Is this a premium accessibility feature? A healthcare intervention covered by Medicare? A family-purchased service? The business model isn't obvious. And there's stigma—will people actually adopt something called "Cognitive Support Mode," or will they avoid it?

Clinical complexity: Cognitive decline isn't binary. It fluctuates. It varies across domains—someone might retain excellent language skills while losing financial judgment. Who certifies someone "needs" Cognitive Support Mode? What's the threshold? How do we handle the person who refuses protections despite clear vulnerability?

Fragmentation: No single entity controls the digital ecosystem. Apple makes the phone OS, but Gmail is Google, banking apps are each institution, shopping happens across dozens of sites. Building comprehensive protection requires coordination across competitors with different incentives and technical architectures.

These aren't trivial problems.

We figured out how to build accessibility features for blind users across competitive platforms. We created standards for wheelchair accessibility in physical environments despite massive coordination challenges. We developed graduated driver's licensing for teens despite liability concerns.

The question isn't whether this is hard, but whether it matters enough to solve.

What Can We Do?

We can include digital safety assessment like Dr. Peter Lichtenberg has done to help prevent scams and fraud and to help those impacted by financial exploitation (Older Adult Nest Egg: https://www.olderadultnestegg.com/). Document not just that someone has MCI, but what specific vulnerabilities exist and what protections are appropriate. Write prescriptions for technological accommodations the same way you'd prescribe physical therapy or occupational therapy. Become comfortable saying, "Based on your assessment, I recommend enabling these protective features."

Don't wait for the perfect solution. Use what's available now—designate Trusted Contacts at financial accounts, enable call blocking on smartphones, set up transaction alerts, consider monitoring services. Seek out clinicians who understand this domain.

The Other Side of AI: Cognitive Support

AI isn't only a threat. The same technology that enables exploitation also opens remarkable possibilities for cognitive engagement and self-discovery: AI as creative partner, memory companion, and tool for maintaining cognitive health.

AI-powered creative expression could enable older adults—including those with MCI—to engage in artistic activities that would otherwise be inaccessible. Generative image tools let people with limited mobility or artistic training create visual art. AI music composition tool could enable musical expression without years of training. Voice-to-text and text-to-speech break down communication barriers. AI companions could engage users in conversations, suggest activities, and remember past interactions. Users interact with these systems 30+ times daily. These would not be replacements for human connection, but they could be bridges during periods of isolation, prompts for engagement, memory aids. Perhaps most intriguingly, AI could help people see their own cognitive and emotional patterns. Speech analysis could detect subtle changes in language complexity, processing speed, emotional tone—changes that might signal early decline but be invisible to the person experiencing them. Rather than waiting for crisis, AI could provide gentle feedback: "You might want to talk to your doctor about these patterns I'm noticing."

Could the same AI that threatens exploitation also enable self-advocacy?

Imagine an AI system that helps someone with early MCI:

- Track their own decision-making patterns over time

- Identify situations where they feel confused or pressured

- Practice recognizing scam scenarios in low-stakes environments

- Maintain creative expression as other abilities decline

- Document their values and preferences while insight remains

The paradox: AI could both enable the scammer who clones a voice and empower the person with MCI who uses AI tools to maintain agency, creativity, and connection longer. I would argue we want something like supportive AI, which operates transparently, in partnership, enhancing remaining abilities rather than exploiting declining ones.

The conversation about "Cognitive Support Mode" isn't just about blocking bad actors. It's about building infrastructure that enables the beneficial uses of AI while protecting against the harmful ones. The technology is neutral. The design choices matter.

A Role for Cognitive Stewardship

Here's the uncomfortable truth: even if every tech company committed tomorrow to building Cognitive Support Mode and we figured out how to protect people who use it, it would be 2-3 years before coordinated solutions reached consumers. Product development, standards negotiations, and clinical validation takes time.

Families facing this now don't have 2-3 years to wait.

We can conduct comprehensive digital safety assessments that go beyond generic cognitive screening to identify specific exploitation risks. It means helping families implement the fragmented protections that exist today—Trusted Contact designation, graduated financial controls, device-level safeguards, monitoring systems—in a coordinated way that preserves autonomy. It means creating decision rules for when to escalate protections and how to have those conversations without destroying trust.

It's the bridge between "research shows vulnerability emerges six years before diagnosis" and "here are the three things you should do this week."

The technology will get better. The evidence base will improve. Coordinated solutions will eventually emerge. But millions of families are in the vulnerability window right now, today, improvising their way through a landscape that wasn't designed for them.

They need guides who understand both the cognitive neuroscience and the practical tools. Who can assess where someone is on the trajectory and calibrate appropriate protections. Who can translate clinical expertise into actionable family plans.

The Question We Face

Cognitive Support Mode doesn't exist, but it can. We could build it.

But even when we do, we'll still need the human expertise to calibrate it appropriately, to implement it ethically, to balance protection with dignity.

The future isn't choosing between technology and clinical judgment. It's both.

The question isn't whether Cognitive Support Mode should exist.

The question is: What do we do for the millions of families who can't wait?

Partnership is key

Who's Really Coordinating Cognitive Care? It Matters.

Yesterday, I shared my upcoming Treasure Coast Cognition launch with my friend group. There was immediate reaction - and the need was clear. I received a direct message from someone I'll call Sarah:

"I'm going to share this with my friend Rachel - her dad was just recently diagnosed. We were just having a conversation about this. Amazing work you are doing."

Sarah's message isn't just a nice comment. It's a data point in a pattern I've been observing since this project has been in development - a pattern that has profound implications for how we think about cognitive health services.

The Pattern in the Data

I've observed a striking pattern in engagement:

• Approximately 70% of my social media responses come from women

• Every consultation inquiry has been initiated by a woman

• The comments consistently say "I wish this existed when my mom/dad was going through this"

• The direct messages come from daughters coordinating for parents, wives coordinating for husbands, women leading initiatives in the community

This isn't just my anecdotal observation. It aligns with extensive research showing that 60-70% of family caregivers for people with dementia are women. It is often women who make healthcare decisions when families face cognitive concerns.

The Reality of Family Dynamics

Even when the patient experiencing cognitive changes is male, women are disproportionately the ones who:

Notice the changes first. Subtle shifts in memory, judgment, or personality don't always announce themselves dramatically. They emerge in everyday interactions - forgotten appointments, repeated questions, uncharacteristic financial decisions. The person managing the household calendar, coordinating social plans, and maintaining family connections is often the first to notice something's different.

Initiate the conversation. "We should get this checked out" is rarely an easy conversation to start. It requires navigating denial, fear, and sometimes anger from the person experiencing changes. It requires overcoming the "I'm fine" response and the family's collective wish that everything is okay.

Research and vet options. Who's Googling or asking AI about "memory problems" at 11 PM? Who's calling doctor's offices to ask about wait times? Who's reading reviews and asking friends for recommendations? In most families, it's the daughter or wife.

Coordinate the actual care. Scheduling appointments, taking time off work to provide transportation, sitting in waiting rooms, asking the doctor questions, implementing recommendations, managing medications, following up on referrals - this is invisible labor, and it's disproportionately carried by women.

Manage the emotional complexity. The fear, the grief, the uncertainty, the family dynamics, the tough conversations about driving or finances or living arrangements - someone has to hold space for all of this. That someone is usually female.

What the Healthcare System Does Instead

Despite this reality, here's how most cognitive health services operate:

We direct our questions to the person with the concerns, even when the family member brought them to the appointment.

We schedule around the person with the concerns, without recognizing that the coordination burden falls elsewhere.

We measure outcomes in patient-centered terms, without acknowledging the toll on the person doing the coordinating.

We miss the person who's actually doing much of the work.

The Gap This Creates

When a family first notices cognitive changes, they typically face:

Long wait times. Memory clinic appointments often have wait times of 12 months, with some communities facing even longer delays. By the time you get seen, the trajectory has often progressed significantly.

"Just wait and see" responses. Primary care physicians, stretched for time and working within a system that rewards acute care over proactive monitoring, often default to reassurance rather than early intervention.

One-time evaluations with no ongoing guidance. Even when families do get a neuropsychological evaluation, it's typically a snapshot assessment with recommendations but no active monitoring or support through the changes ahead.

The coordination burden falling on whoever has bandwidth. And in most families, that's the daughter who lives closest, the wife who retired first, the adult child who has the most flexible work schedule. Usually women.

The Multi-Year Journey We're Ignoring

Research reveals a predictable but frustrating pattern in the journey from first concerns to formal diagnosis:

First, 2-3 years of family members noticing changes and wondering if they should be concerned. Subtle shifts in memory, repeated questions, uncharacteristic decisions - changes that prompt the question "is this normal aging or something more?" Studies from memory clinics across multiple countries show families typically notice symptoms for 1-3 years before seeking professional assessment.

Then, 6-12 months (maybe longer) waiting for a memory clinic appointment . Even after deciding to seek help, families face substantial wait times. Some communities have waits extending even longer, and primary care physicians often default to "let's wait and see" rather than proactive monitoring.

Then, if Mild Cognitive Impairment (MCI) is diagnosed, it could be an additional 7 years of uncertainty about what comes next. During the MCI stage - which can last 2-7+ years depending on individual factors - families are essentially told to monitor and return for follow-up, with little guidance on what to do during this critical window.

At each stage of this journey, families are making consequential decisions about finances, legal planning, living arrangements, and care - often without expert guidance. The person experiencing changes may still have capacity for important planning conversations, but families don't know how to have them. Early interventions could potentially slow decline, but families don't know what to prioritize.

And throughout this entire multi-year journey, someone is coordinating. Someone is noticing. Someone is researching. Someone is worrying. Someone is managing the family's response.

That someone deserves support.

What It Means to Build Services for the Actual Coordinator

Recognizing who's really coordinating cognitive care has profound implications for how we design services:

Messaging that validates their experience. "You're not overreacting. You're not imagining it. The changes you're seeing are real, and you deserve expert guidance to navigate them."

Services that support the coordinator, not just the patient. This means recognizing that the wife who's compensating for her husband's memory lapses needs strategies for doing so sustainably. The daughter coordinating from three states away needs clear information to make decisions remotely. The adult children navigating sibling disagreements about their parent's care need frameworks for productive conversations.

Proactive rather than reactive care models. Instead of waiting for crisis or diagnosis, offering longitudinal monitoring and guidance during the years when families most need it - when they're noticing changes but the healthcare system says "not yet."

Acknowledging the invisible labor. The coordination work is real work. It takes time, emotional energy, and often comes at the cost of careers, relationships, and personal wellbeing. Services should recognize this reality rather than treating it as incidental to the "real" patient care.

Why Referral Partners Need to Know This

If you're a healthcare provider working with older adults, you've probably seen this dynamic play out:

A couple comes in for medical care. The wife makes the appointment. She's the one asking the questions. She's noticed changes in her husband's thinking and judgment. She wants to know more "just in case."

Or an adult daughter schedules a consultation about her mother's finances. She's noticed confusion about bills, unusual purchases, vulnerability to scams. She's trying to figure out how to join the decision-making process while preserving her mother's dignity and autonomy. This is the shared decision-making threshold.

The person sitting across from you asking these questions? That's your actual client for cognitive health services.

When you're considering referrals for families with cognitive concerns, ask yourself: Who initiated this conversation? Who's been doing the research? Who will be implementing the recommendations?

That's who needs to know about services designed for family coordinators navigating cognitive change.

To the Family Coordinators Reading This

If you're the daughter who took a day off work to bring your father to appointments...

If you're the wife who's been quietly compensating for your husband's memory lapses...

If you're the adult child trying to coordinate care from three states away...

If you're the one who's been Googling "early signs of dementia" and asking AI if you're overreacting...

You're not overreacting. The changes you're noticing are real.

You're not alone in carrying this burden. This is a pattern across millions of families.

And you deserve support that recognizes the work you're actually doing.

The healthcare system wasn't designed for the role you have. But we can redesign the experience to serve the people navigating cognitive uncertainty - not just the patients, but the families, and specifically the women who disproportionately carry the coordination burden.

That's what I'm building with Treasure Coast Cognition's Cognitive Stewardship model: Longitudinal support throughout the multi-year journey from first concerns through diagnosis and beyond, recognizing that families - and particularly family coordinators - need expert guidance to navigate cognitive change with dignity, agency, and clarity.

The question "Who's really coordinating cognitive care?" isn't just an observation about gender dynamics in healthcare (men are caregivers, too).

It's a question we should ask before we design the services that help those coordinating cognitive care.

Your Doctor Said 'Wait and See.' Here's Why That's Wrong.

Something feels different.

Maybe it's you noticing that managing the investment accounts you've handled for decades suddenly feels more complicated. Or it's your spouse forgetting entire conversations you just had. Perhaps it's Mom getting confused about finances she's managed flawlessly for years, or Dad making uncharacteristically impulsive decisions.

You've probably tried mentioning it to the doctor, only to hear: "It's just normal aging" or "Let's wait and see."

But you know something has changed. And you're caught between two impossible choices: ignore the changes and hope things stay stable (while worrying constantly), or take over completely (causing conflict and resentment).

There's a better way.

The 7-10 Year Gap No One Talks About

Here's what most families don't realize: cognitive changes typically unfold slowly over 7-10 years before anyone receives a formal diagnosis. During this long window, families face some of life's most consequential decisions—about finances, legal planning, medical care, living arrangements, and safety—without clear guidance on what's actually happening or what to do about it.

This is the gap where families need help most. And it's exactly when the current healthcare system fails them.

Why the System Leaves You Stranded

When you finally push for evaluation, you might get:

• A 5-minute cognitive screening that "looks fine"

• A referral to a neurologist with a 6-month wait

• Testing only after things have gotten significantly worse

Meanwhile, you're facing real decisions right now:

• Should we still manage the investment accounts independently?

• Is it safe to drive?

• Can we make informed medical decisions?

• Should we update the estate documents while capacity is still clear?

• How do we address this without destroying our relationship?

• What happens if we wait and capacity is lost?

Nobody is helping families during the 7-10 years when help matters most—when cognitive capacity is declining and planning is still possible but increasingly urgent.

Introducing Cognitive Stewardship™

Cognitive Stewardship is expert guidance designed specifically for the years before diagnosis. It's not crisis management after things fall apart. It's not a one-time diagnostic test that tells you "what's wrong." It's not medical treatment, and it's definitely not taking over your loved one's life.

Think of it as a wealth advisor for your brain. Just as you wouldn't wait until bankruptcy to manage finances, you shouldn't wait until crisis to protect cognitive health.

Cognitive Stewardship is:

• Understanding exactly how the brain is working right now – not just test scores, but what it means for real life

• Knowing which decisions are urgent and which can wait – so you're not constantly reacting

• Creating strategies that preserve independence while protecting against harm

• Having a plan for the next 5-10 years – a roadmap, not guesswork

• Expert partnership through one of life's most difficult transitions – you don't navigate this alone

The 10 Cognitive Inflection Points

Most families face 10 predictable crossroads during cognitive transitions. Each represents a moment when declining capacity intersects with important decisions. If you catch them early, planning is still possible. If you miss the window, you're managing crisis.

These inflection points include:

1. Financial Oversight (often first) – checkbook errors, vulnerability to scams, poor investment decisions

2. Driving Safety – represents independence and identity, but safety risks mount

3. Medication Management – missed doses, confusion about timing, medication errors

4. Estate Planning (critical window) – last opportunity for autonomous legal decision-making

5. Housing Transitions – before safety concerns force crisis moves

6. Healthcare Proxy Activation – when medical decision-making becomes too complex

7. Advanced Care Planning – expressing end-of-life preferences while capacity remains

8. Loss of Insight – when the person doesn't realize capacity has changed

9. 24/7 Care Need – transition from intermittent support to full-time care

10. End-Stage Care – hospice, comfort care, meaningful closure

The key is anticipating these inflection points before you reach them, not reacting after crisis forces your hand.

What Cognitive Stewardship Looks Like

Phase 1: Comprehensive Assessment

We spend 2 days (3-4 hours total) understanding how things are right now. This isn't a quick screening. It's thorough evaluation of cognitive patterns, real-world decision-making capacity (financial, medical, daily functioning, safety), and what matters most to you and the family from your perspective and observations.

This assessment reveals where thinking is still strong (we build on strengths), where things are becoming more effortful (we plan supports), which upcoming decisions require immediate attention, and what the map might look like over the next few years.

Phase 2: Collaborative Discovery Session (90 minutes)

A few days after the assessment, we sit down together—you, your loved one, and me—and explore what we learned. This isn't clinical report delivery. It's a conversation.

We discuss what's working well, what's changing, what this means for real life, and strategies that fit your family. Together, we design practical approaches that preserve autonomy as long as safely possible, protect against specific risks we've identified, feel supportive rather than controlling, and can be adjusted as things evolve.

You leave with clear understanding of what's happening, a roadmap for the next 2-5 years, specific strategies to try, and a plan for ongoing monitoring.

Phase 3: Longitudinal Monitoring (Every 3-12 months)

Cognitive decline isn't a one-time event. It's a journey. What's true today may change in six months.

Regular follow-up sessions allow us to track how things are progressing, see if our strategies are working, identify new concerns as they emerge early, update the roadmap as circumstances evolve, and provide ongoing guidance as you face new decisions.

This ongoing relationship means you're never navigating alone.

What This Investment Prevents

Consider what you're preventing:

• Financial exploitation: Average loss per victim: $120,000

• Contested estates: Legal fees: $50,000-$200,000+

• Crisis placements: Emergency memory care: $8,000-15,000/month

• Medication errors: Hospitalizations from medication mismanagement: $15,000+ per incident

• Family conflict: What may matter most—objective information reduces disagreement

What You're Gaining

• Clarity – Understanding what's actually happening instead of worrying and guessing

• Plan – Knowing what decisions are coming and when action is needed

• Preservation – Keeping your loved one independent as long as safely possible

• Protection – Preventing exploitation, errors, and crisis situations

• Peace of mind – Having expert guidance instead of navigating alone

• Family harmony – Reducing conflict with objective assessment and shared understanding

• Time – Planning during the window when planning is possible, not reacting to crisis

• Dignity – Honoring your loved one's autonomy and involving them in decisions about their future

Is Cognitive Stewardship Right for You?

You might benefit if:

You're the person noticing changes:

• You're worried about your own memory or thinking

• You want to plan ahead while you still can

• You want your family to have guidance, not just worry

• You have important decisions coming up (financial, medical)

You're the spouse or partner:

• Your partner seems different—not just "aging"

• You're worried but don't know if you're overreacting

• You need someone objective to assess the situation

• You're exhausted from constant vigilance and worry

You're the adult child:

• You live far away and worry about what you're not seeing

• Your parent insists "everything's fine" but you're concerned

• You and your siblings disagree about what to do

• You want to help but don't want to take over

Your Next Step

The first step is simple: a complimentary 30-minute consultation where we'll talk about what you're noticing, what concerns you most, what decisions you're facing, and whether Cognitive Stewardship is the right fit.

No pressure. No sales pitch. Just honest conversation about whether I can help.

You don't have to navigate this alone. That's the entire point.

The gap between noticing changes and getting a formal diagnosis doesn't have to be filled with anxiety and guesswork. It can be a time of thoughtful planning, preserved dignity, and expert guidance.

Let's figure it out together.

Ready to take the next step?

☕ Schedule Your Complimentary Consultation - Let's discuss your specific situation. No pressure, no sales pitch—just honest conversation about whether I can help.
Schedule 30-Minute Consultation

Thanksgiving Conversations

Thanksgiving: so much turkey, stuffing and canned cranberry jelly; so much time with friends and family; so many important, meaningful conversations. I had three reactions: first, I ate too much; second, people can be incredibly thoughtful, caring, and trusting; and third, we can do better to support how we navigate cognitive health concerns.

Here are some of the questions I heard:

• "I live in Georgia, but my Mom lives near Vero. Her husband has Lewy Body Disease and they both need more help, even though her husband may not think so. They don’t have easy access to resources. What can we do?"

• "How do we deal with the dysfunction in our local healthcare system?"

• [Email]: “We are abroad and my mother-in-law had an unexpected change in medical status. Do we stay for treatment or travel back to the US? What are the flight risks?"

• "My p-tau217 is elevated—what does that mean?"

• "We’re exhausted. Always. We need support, care, and direction now. What can we do?"

• "I’ve been hearing about those weight loss drugs (GLP-1s). Can those help my brain health?"

• "Do microplastics disrupt tau clearance? I mean, am I going to hurt my brain if we don’t clean up the Indian River Lagoon?"

These questions all map onto the same three fundamental needs.

1. "What does this signal actually mean? Is this something or is it nothing?"

This is at the heart of what Treasure Coast Cognition does: we tie signal to meaning.

Many people now receive p-tau217 results, Aβ42/40 ratios, inflammatory markers, sleep data from wearables, or confusing research headlines. The challenge is interpretation.

A biomarker is probabilistic, not deterministic. An elevated p-tau217 is a probability, not a diagnosis. Effect sizes in research don't always translate to clinically meaningful change. And what's clinically meaningful isn't always the same as the real-world changes that matter most to you.

The GLP-1 question illustrates this perfectly. The recent Alzheimer's trial results were disappointing—but that doesn't mean GLP-1s don't matter for brain health. What's true for Alzheimer's disease specifically may not be the same as what's true for midlife metabolic risk modification, late-life vascular protection, or pre-dementia cognitive reserve. A negative trial in one disease at one stage doesn't eliminate the potential for meaningful impact in a different context.

Whether the concern is p-tau217, GLP-1 trial results, microplastics, or an urgent medical decision abroad, people are trying to understand: Is this something? Or is it nothing?

At Treasure Coast Cognition, we help individuals and families determine which signals are meaningful—and which are not.

2. "What should I be monitoring over time?"

This is exactly what Treasure Coast Cognition helps you figure out.

People don't just want data—they want direction.

When someone asks "What should I expect?" or "What should I be looking for?" or "How do I know if something is shifting?"—what they're really asking is: Which patterns actually matter, and how do I track them responsibly?

You want to monitor what is meaningful—so you can know when changes are meaningful.

Questions about local healthcare dysfunction reflect this same need. Continuity and longitudinal monitoring are exactly what fragmented systems fail to provide. When the system is broken, people still need guidance—and they need it from someone who understands both the science and the context of where they live.

Traditional healthcare does not provide this continuity. Treasure Coast Cognition does.

3. "What will matter most in the next 5–10 years?"

This question is why I'm building Treasure Coast Cognition here.

Healthcare systems need to work within the context of the places and systems where we live and function. When there's dysfunction in the local healthcare system, we still need to meet the healthcare needs of the community. When someone faces an urgent decision while traveling abroad, they need clarity fast. When a family in a remote setting needs a care plan, they need guidance that works across distance.

Cognitive stewardship has to be embedded in the environment where people actually live.

Questions about why Treasure Coast Cognition exists here, or how to navigate a broken healthcare system, or whether GLP-1s help cognition all point back to a desire for long-term clarity:

• How do I stay independent?

• How do I protect function?

• How do I keep doing the things that matter to me?

• What decisions should I prepare for?

• What actions actually change my trajectory?

But there's another layer to this question. The microplastics question points to something bigger: What lives in the environment around us that could be changed outside of us to improve our lives? Individual risk modification matters, but so does community-level action to decrease environmental contributors to poor brain health. Cognitive Stewardship isn't just personal—it's also environmental and systemic.

The goal isn't just early detection. It's early direction.

Where the Questions Converge

Even though Thanksgiving brought questions about biomarkers, metabolism, microplastics, healthcare systems, and urgent medical decisions, the underlying focus was the same:

1. What does this signal mean?

2. What should I monitor?

3. What will matter most over the next decade?

Treasure Coast Cognition exists to help people answer these questions with clarity, calm, and evidence—and to help them stay aligned with the life they want to protect.

Interpretation → insight → action.

That's Cognitive Stewardship.

Changes in Financial Decision-Making Can Be the First Sign of Cognitive Decline

The Brain’s Financial Crisis

A 2024 study from the Federal Reserve Bank of New York is the latest alarm bell that missed credit card and mortgage payments can precede a dementia diagnosis by years.

Researchers analyzed data from 2.4 million older adults between 2000 and 2017, linking Medicare claims with Equifax credit report histories. About 478,000 of these individuals were later diagnosed with Alzheimer's disease or related dementias.

Here's what they found:

Financial problems start years before diagnosis.
Credit scores begin to fall and late payments start showing up more than five years before dementia is clinically recognized. Specifically, credit card delinquency increases were observed five years prior to diagnosis, while mortgage delinquency appeared three years before.

By the point of diagnosis, people were over 34% more likely to miss credit card payments and 17% more likely to miss mortgage payments compared to earlier baseline years.

The authors describe "disease-related inattention and decision difficulties"—missed due dates, confused accounts, duplicated payments. The financial decline mirrors the quarter-by-quarter cognitive decline these individuals are experiencing.

Highlighted by the National Institute on Aging (NIA): "Difficulty Managing Bills May Signal Early Dementia."

Translation: Cognitive decline can show up early in credit scores and bank statements.

Why Finances Fail First

Financial management depends on cognitive skills—many of which decline early in Alzheimer's disease and related dementias.

1. Executive Function

Planning, sequencing, attention, inhibition, and problem-solving—the capacities required to juggle bills, budgets, and deadlines—often show early decline.

2. Prospective Memory

Remembering to do something in the future—pay the electric bill next Tuesday, transfer funds before the autopay hits.

Prospective memory failures are among the most sensitive early markers of decline.

3. Numeracy

Even simple math—calculating interest, comparing prices, checking balances—relies on parietal and frontal brain networks disrupted by early pathological changes.

4. Vulnerability to Exploitation

Subtle cognitive decline—even before mild cognitive impairment is detectable—can result in impaired financial decision-making and increased vulnerability to scams.

5. Increased Altruism and Generosity

Here's a subtle sign that doesn’t seem alarming on the surface: A person who has always been financially conservative suddenly becomes unusually generous.

Research from USC and Bar-Ilan University found that increased financial altruism—giving away more money to anonymous others in experimental tasks—was associated with poorer performance on cognitive tests sensitive to early Alzheimer's disease, including word learning, story recall, and category fluency.

While deliberate generosity is certainly not a negative trait, research suggests that sudden or increased altruistic behaviors may be associated with declining cognitive function in some contexts.

The mechanism appears related to impaired judgment and reduced ability to assess risk and future consequences. The same frontal-executive systems that help us evaluate financial trade-offs and protect our interests are the ones that show early changes in dementia.

Families can interpret this as "Mom's just being nice" or "Dad's finally learning to enjoy his money."

But when generosity represents a significant change from baseline behavior, it may be a signal of cognitive decline.

What the Brain Reveals

In a cohort of 97 cognitively normal adults, researchers found that thinner entorhinal cortex—a structure affected early in Alzheimer's—was linked to greater self-reported vulnerability to financial exploitation (Fenton et al., Cerebral Cortex, 2024).

It's correlational, not diagnostic—but it hints at a neural marker for early financial risk.

In one of my early studies—MRI Volume of the Medial Frontal Cortex Predicts Financial Capacity in Mild Alzheimer's Disease (Brain Imaging and Behavior, 2013)—we found that atrophy in the medial frontal cortex, a hub for attention, calculation, and decision-making, directly predicted poorer financial capacity.

That work, later highlighted by the NIA, helped me discover and understand this:

Financial decision-making could be an early marker of neurodegeneration.

What We Can Do

1. Detect Early

Monitor real-world financial data—credit scores, bill-payment history, online banking patterns, and changes in giving behavior—just as we monitor blood pressure.

2. Plan Legally and Financially While Capacity Intact

Power of attorney, trusts, wills, financial protections, advance directives—complete them before decline.

3. Evaluate Financial Capacity

Financial capacity screening is important, not just screening for cognition. Review bill-paying habits, credit patterns, changes in charitable giving or financial behavior, and transaction histories to identify early warning signs.

Because the earlier we see decline, the more autonomy and dignity we can preserve.

4. Finances Are Personal, So Are The Data

Accessing financial information is sensitive and requires appropriate privacy protections, explicit consent, and security measures that prevent the very exploitation we're trying to detect.

The Bottom Line

• Financial errors often precede cognitive diagnosis by years.

• Specific brain regions—like the entorhinal and medial frontal cortex—predict financial decline.

• Vulnerability to scams tracks with early Alzheimer's-related brain changes.

• Increased financial altruism could be a sign of cognitive changes.

If you notice these changes—in yourself or someone you love—don't ignore them. They could be signals from the brain that it's time to pay attention.

References

1. Gresenz CR, et al. The Financial Consequences of Undiagnosed Memory Disorders. Federal Reserve Bank of New York Staff Reports. 2024;(1106). doi:10.59576/sr.1106

2. National Institute on Aging. Difficulty Managing Bills May Signal Early Dementia. Published January 16, 2025. Accessed November 12, 2025.

3. Stoeckel LE, et al. MRI Volume of the Medial Frontal Cortex Predicts Financial Capacity in Patients with Mild Alzheimer's Disease. Brain Imaging Behav. 2013;7(3):282-292. doi:10.1007/s11682-013-9226-3

4. Fenton L, et al. Lower Entorhinal Cortex Thickness Is Associated with Greater Financial Exploitation Vulnerability in Cognitively Unimpaired Older Adults. Cereb Cortex. 2024;34(9):bhae360. doi:10.1093/cercor/bhae360

5. Weissberger GH, et al. Increased Financial Altruism is Associated with Alzheimer's Disease Neurocognitive Profile in Older Adults. J Alzheimers Dis. 2022;88(3):995-1005. doi:10.3233/JAD-220187

6. National Institute on Aging. Increased Financial Generosity Linked to Lower Cognition and May Be an Early Indicator of Alzheimer's Disease. Published June 2022. Accessed November 12, 2025.

7. National Institute on Aging. Brain Scans Offer Insights into Loss of Money Skills. Accessed November 12, 2025.

8. Ho EH, et al. A Scoping Review of Financial Decision-Making Measures in Midlife and Beyond: Results from the ARMCADA Study. Front Psychol. 2025;16:1540508. doi:10.3389/fpsyg.2025.1540508

Why I'm Leaving My Office To Come To You

The most important part of a cognitive evaluation doesn't happen in my office.

It happens in your kitchen. Your bathroom. Your bedroom. The places where you actually live.

Because here's what I've learned after 20+ years of neuropsychological assessments: People can look fine in a clinic and be falling apart at home.

Your father aces the memory test in my office—but at home, there are 14 half-empty water bottles lined up on his dresser because he forgets he already got one.

Your mother seems oriented and alert during our appointment—but when I visit her home, the stove has scorch marks and expired food fills the refrigerator.

If I'm not seeing how you function where you live, I'm missing the whole story.

I was explaining Cognitive Stewardship to a physician friend in Vero over coffee. He listened as I described the model. Then he said: "This needs to be part of a new model for primary care. In-home primary care." I paused. "Tell me more."

Patients cycle through the hospital. Elderly, cognitively impaired, medically complex. Dehydration. UTIs that become delirium. Medication errors. Falls. The family doesn't realize it was this bad. And it’s preventable.

The problem isn't that primary care doctors don't care. It's that they can't see what's happening at home. Fifteen-minute office visits don't capture reality. When families arrive at the hospital, it’s to manage a crisis that's been building for months.

We need to go to you.

I come home, open my browser, and a new JAMA Network Open study appears showing primary care can spot early signs of dementia. This randomized clinical trial, led by Dr. Malaz Boustani and colleagues at Indiana University, tested a simple idea:

Can primary care clinics detect early cognitive decline using digital tools that fit into everyday workflows? Yes.

The study compared three approaches across nine federally qualified health centers in Indianapolis:

• Usual care (no routine cognitive screening)

• A machine-learning Passive Digital Marker (PDM) that analyzed existing electronic health record data to flag patients at risk

• A PDM + patient-reported QDRS (Quick Dementia Rating System) combined approach

After one year, the combined approach led to 31% more new diagnoses of Alzheimer's disease and related dementias (15.4% vs 12.4% in usual care). Clinicians also ordered more appropriate diagnostic workups—brain imaging, labs, neuropsychological testing.

The key finding: Primary care can implement early cognitive screening at scale without disrupting workflow or adding clinician burden—and it helps identify people who would otherwise be missed.

Detection Isn't Prevention

But here's the piece we still haven't solved:

Detecting early cognitive changes is helpful—but it doesn't automatically lead to better outcomes for patients or families.

Finding early drift in memory, thinking, or executive function is only meaningful if we can do something with that information.

The limits of the study make this clear:

• It focused on diagnosis, not real-world functioning

• It didn't track hospitalizations, readmissions, or ED visits

• It didn't address medication complexity, sleep disruption, caregiver strain, or home safety

• It didn't connect detection to interventions that stabilize people at home

The Real Problems Happen at Home

People don't decline in the exam room.

They decline at home.

Long before a crisis or hospital visit, subtle destabilization shows up in:

• Medication confusion (pills missed, duplicated, or taken incorrectly)

• Sleep disruption (up all night, exhausted during day)

• Mood and behavior changes (irritability, withdrawal, anxiety)

• Executive function slips (bills unpaid, appointments forgotten)

• Caregiver overwhelm (spouse exhausted, adult children burning out)

• Missed follow-up appointments (patient forgets, family can't transport)

• Mobility declines (unstable gait, near-falls, reduced activity)

• Unsafe routines or environments (stoves left on, spoiled food, fall risks)

These changes are detectable. But right now, nobody is watching.

Early cognitive drift is rarely the sole cause of a readmission or major decline—it's the signal that bigger problems are coming.

By the time families seek help, the crisis has already arrived:

• Dehydration → hospitalization

• UTI → delirium → ED visit

• Medication error → hypoglycemia → ambulance

• Fall → hip fracture → surgery → skilled nursing facility

• Caregiver collapse → emergency nursing home placement

Many of these crises are preventable.

What This Study Actually Tells Us

The JAMA article validates something important:

With the right tools, primary care can see the early drift.

The Passive Digital Marker (machine learning analyzing EHR patterns) plus the Quick Dementia Rating System (patient-reported symptoms) together changed clinician behavior—prompting diagnostic workup and earlier diagnosis.

We can detect cognitive changes in primary care.

Now we need to build the systems that respond before the drift becomes a crisis.

From Detection to Stabilization at Home

Imagine combining detection with a different care delivery model:

Early cognitive detection (QDRS + digital markers embedded in EHR)
↓
In-home comprehensive assessment (where patients actually live and function)
↓
Integrated primary care + cognitive monitoring (not fragmented across specialists)
↓
Proactive stabilization:

• Medication safety monitoring (are pills being taken correctly?)

• Sleep optimization (treating sleep apnea, adjusting sedating medications)

• Mobility and fall prevention (PT, home safety evaluation)

• Nutrition and hydration (addressing weight loss, dehydration before crisis)

• Caregiver support (respite, education, burden monitoring)

• Decision-preparedness coaching (legal, financial, advance directives)

↓
Continuous monitoring (monthly home visits, not annual clinic check-ins)
↓
Crisis prevention (hospitalizations, ED visits, nursing home placement)

Prevent hospital readmissions and preserve independence not by waiting for the next clinic visit, but by creating a continuous stability layer around the patient at home.

In-Home Primary Care

Traditional office-based primary care is not set up for cognitive change:

1. Transportation barriers if driving becomes risky or people refuse to visit the clinic

2. Clinic performance ≠ home performance: Someone may seem fine in a structured 15-minute clinic visit, but they may look very different at home

3. Medication management invisible: Pill bottles in clinic don't reveal whether pills are being taken correctly

4. Reactive, not proactive: Patient presents when crisis occurs; no monitoring between visits

5. Family excluded: Caregivers can't attend every appointment; clinician doesn't see family dynamics

In-home primary care solves these problems:

1. Direct observation: See how people actually function in their environment

2. Medication reality check: Pills scattered on counter, organizer filled incorrectly, expired meds not discarded

3. Home safety assessment: Loose rugs, clutter, spoiled food, burners on

4. Caregiver assessment: visible exhaustion, adult daughter on verge of quitting job

5. Early intervention: Detect problems before crises (dehydration, UTI, medication errors, fall risk)

6. Continuous relationship: Monthly visits create trust; patients more likely to report problems early

When you combine digital cognitive detection with in-home primary care delivery, you create a powerful prevention model:

• Early detection identifies patients at risk

• Home-based assessment reveals functional realities invisible in clinic

• Integrated medical + cognitive management addresses complexity comprehensively

• Continuous monitoring catches destabilization early

• Proactive intervention prevents crises

Where Do We Go From Here?

Primary care can detect early cognitive decline.

Now we need to take the next step:

Build the systems that turn detection into prevention.

Extend monitoring from the clinic into the home where risk actually unfolds.

Create continuous stability around patients before crises force reactive management.

That's the work ahead.

My hospitalist friend was right. We need to go to them. We can detect the problems. Now we need to build the systems that prevent the crises—one home visit at a time.

Reference

Boustani MA, Ben Miled Z, Owora AH, et al. Digital Detection of Dementia in Primary Care: A Randomized Clinical Trial. JAMA Netw Open. 2025;8(11):e2542222. doi:10.1001/jamanetworkopen.2025.42222

What Matters Most

Does a 0.45-point difference on a clinical scale matter?

In the Phase 3 CLARITY-AD trial of lecanemab, patients with early Alzheimer’s disease treated with the drug had a mean change in CDR-SB of ≈ +1.21 at 18 months versus +1.66 on placebo (difference ≈ –0.45 points, p <0.001) — representing roughly a 27% slower rate of clinical decline.

Is a –0.45-point difference meaningful to a person or family? The minimum clinically important difference (MCID) literature suggests that, in MCI populations, a change of about +1 point on CDR-SB may represent the smallest shift likely to be noticeable.

In other words: while the result is statistically significant, it remains uncertain whether every individual would “feel” the difference, whether their family would observe it, or whether meaningful functions (e.g., independent living, driving safety, remembering loved ones) would be preserved.

Would this difference be noticeable in your daily life?

Would you feel different?

Would your family see a difference?

Would it preserve what you're terrified of losing?

The honest answer: We don't know.

What Clinical Trials Typically Measure:

• CDR-Sum of Boxes scores (clinician ratings of thinking and function)

• Amyloid plaque levels in the brain (measured by blood biomarkers and PET scans)

• Cognitive test performance

• Global clinical impression (clinician's rating of overall severity)

What Patients and Families Say Matters Most (in order):

1. Improving or restoring memory

2. Stopping disease progression

3. Slowing disease progression

4. Improving ability to do everyday tasks

5. Remembering family members

6. Remaining independent and not feeling like a burden

7. Removing plaques and tangles from the brain

Notice what's at the bottom? Removing amyloid plaques.

Notice what's missing entirely? The scales clinical trials use don't directly measure most of what patients care about: remembering loved ones' faces, not feeling like a burden, maintaining independence.

The 0.45-Point Question

Let's return to lecanemab's 0.45-point difference on the CDR-SB scale over 18 months.

Is 0.45 points meaningful?

The research community: Maybe. One expert panel suggested 0.5-1.0 points in a single domain (like memory) could be meaningful if caught early enough.

Patients and families: We don't know.

Does it mean:

• Mom will remember my name for an extra 6 months?

• Dad can balance his checkbook a bit longer?

• My spouse won't need 24/7 care quite as soon?

• I'll have more "good days" when I feel like myself?

These are the questions that matter and clinical trials typically don’t.

What "Clinically Meaningful" Should Mean

A 2025 workshop report proposed a new framework for defining meaningful outcomes in Alzheimer's trials:

1. Patient-Centered Outcomes Must Be Primary

Not secondary endpoints or exploratory analyses—primary. Trials should measure:

• Patient-reported quality of life

• Ability to perform activities that matter to the individual (hobbies, social engagement, self-care)

• Caregiver burden and quality of life (disease affects the whole family)

• Time to critical milestones (loss of independence, residential transition, loss of specific abilities)

2. "Minimal Clinically Important Difference" Must Reflect Patient Perspective

Currently, experts define thresholds like "1-2 CDR-SB points is meaningful." But meaningful to whom?

Better approach: Ask patients and families experiencing different levels of decline: "How much improvement or slowing would need to occur for you to consider treatment worthwhile given the risks, costs, and burdens?"

This is called anchoring to patient global impression of change—linking statistical measures to what people actually feel and notice.

3. Time Savings Must Be Interpretable

How many months of progression are delayed?

For example:

• "Lecanemab provides approximately 5-7 months of delay in progression over 18 months of treatment"

• "This means remaining at your current level of function about 5-7 months longer than you would without treatment"

This is interpretable. Patients can weigh: "Is 5-7 months of preserved function worth 18 months of infusions, MRI monitoring, risk of brain swelling, and cost?"

Different people will answer differently—and that's okay. The point is informed decision-making based on outcomes that matter.

Long-Term Economic Value

Modeling shows that even modest slowing of decline creates long-term value:

Scenario 1: 18 months of lecanemab, 27% slowing

• Increased lifetime quality-adjusted life years (QALYs)

• Reduced informal caregiving hours

• Medical cost savings from delaying severe dementia stage

• Net value: ~$40,000-60,000 per patient over lifetime

Scenario 2: 48 months of treatment, 50% slowing (hypothetical future treatment)

• Dramatically increased QALYs

• Years of delayed nursing home placement

• Preserved workforce participation for both patient and caregiver

• Net value: ~$150,000-200,000 per patient over lifetime

The insight: Even small effects compound over time. A 25% slowing may not seem dramatic year-to-year, but over 5-10 years could mean:

• 1-2 extra years living at home vs. nursing facility

• 1-2 extra years employed (for early-onset patients)

• 1-2 extra years when family caregivers don't need to quit jobs

• Delayed transition to 24/7 care needs

But these benefits aren't captured in 18-month trials measuring CDR-SB scores.

People Are Complex

Research establishing Alzheimer's biomarkers has largely been conducted in select populations.

The problem:

• Biomarkers (amyloid, tau) may be less strongly associated with cognitive decline in some people

Why? Likely because other factors contribute more to cognitive impairment:

• Vascular disease from uncontrolled hypertension and diabetes

• Social determinants of health (education quality, socioeconomic status)

• Mixed pathologies (not pure Alzheimer's but combined pathologies)

Translation: What's "clinically meaningful" may differ depending on the person.

What This Means for Cognitive Stewardship

1. We Must Ask What Matters to YOU

In initial consultations, I ask:

• What abilities are you most afraid of losing?

• What would "success" look like for a treatment?

• What trade-offs are you willing to accept (burden, cost, risk) for how much benefit?

• What defines quality of life for you right now?

These answers guide everything: Whether to pursue treatments, which risk factors and lifestyle interventions to prioritize and how aggressive you should be, when to initiate legal planning.

2. We Must Measure What Matters

In addition to cognition, Cognitive Stewardship measures:

• Functional capacity across domains (financial, medication management, driving, meal preparation)—the IADLs that patients prioritize

• Patient-reported quality of life and sense of well-being

• Care partner burden and family impact

• Preservation of meaningful activities (hobbies, social connections, independence)

• Time to critical milestones (independent living, drive safely, manage finances)

Every 6 months, we assess: Are you maintaining the abilities that matter most to you? Is quality of life preserved? Is family coping?

This tells us whether interventions are working in ways that matter—not just whether CDR-SB changed by 0.5 points.

3. We Must Translate Science into Lived Experience

I don't tell patients: "Your CDR-SB score increased 1.5 points over the past year."

I say: "Your memory and problem-solving have declined to a level where managing finances independently is becoming risky. Last year, you could balance your checkbook and detect errors. Now, you're missing bills and making calculation mistakes. This suggests we should implement financial protections like joint account management and power of attorney activation."

I don't say: "Lecanemab slows decline by 0.45 CDR-SB points over 18 months."

I say: "Lecanemab might give you about 5-7 months longer at your current level of function—meaning abilities like driving, managing your home, and participating in hobbies might be preserved a bit longer. We'd need to weigh this modest benefit against biweekly infusions, brain swelling risk, and costs. What feels right to you?"

This is patient-centered communication—translating research findings into terms that enable informed decisions.

4. We Must Empower Patients with Their Own Data

The Study Participant Bill of Rights says patients deserve their research results. Cognitive Stewardship goes further: You deserve results explained in context, with action plans, and with continuity of expertise.

You're not a data point. You're a partner in managing your cognitive health.

The Bottom Line: Ask the Right Questions

The next time you read a headline about an Alzheimer's drug showing "statistically significant benefit," ask:

Benefit for what outcome?
Meaningful to whom?
How would this feel in daily life?
Is this what patients and families are hoping for?

The 0.45-point CDR-SB difference isn't inherently meaningful or meaningless. Context makes it meaningful:

• To a 68-year-old woman terrified of forgetting her grandchildren, 5-7 months of preserved memory might be priceless—worth the infusions and risks.

• To an 82-year-old man who values quality over quantity and hates medical procedures, modest slowing may not justify treatment burden.

Both are valid. The problem is we don't have the data to help people make truly informed choices aligned with their values.

Cognitive Stewardship fills the gap—measuring what matters, translating science into lived experience, and empowering you to make decisions aligned with your priorities.

References

1. van Dyck CH, Swanson CJ, Aisen P, et al. Lecanemab in Early Alzheimer's Disease. N Engl J Med. 2023;388(1):9-21. doi:10.1056/NEJMoa2212948

2. Andrews JS, Desai U, Kirson NY, et al. Disease Severity and Minimal Clinically Important Differences in Clinical Outcome Assessments for Alzheimer's Disease Clinical Trials. Alzheimers Dement (N Y). 2019;5:354-363. doi:10.1016/j.trci.2019.06.005

3. Stoeckel LE, Fazio EM, Hardy KK, Kidwiler N, McLinden KA, Williams B. Clinically Meaningful Outcomes in Alzheimer's Disease and Alzheimer's Disease-Related Dementias Trials. Alzheimers Dement (N Y). 2025;11(1):e70058. doi:10.1002/trc2.70058

What Would You Change?

The Diagnostic Breakthrough

On July 28, 2025, the Alzheimer's Association released clinical practice guidelines recommending how specialty clinicians should use blood-based biomarkers (BBMs).

Why this matters: Until now, confirming Alzheimer's disease required either a lumbar puncture (spinal tap) to analyze cerebrospinal fluid or a PET scan. Both are invasive, expensive, and inaccessible to many families. Now, a simple blood test—drawn at your doctor's office, processed by commercial labs—can detect Alzheimer’s pathology with ~90%+ diagnostic performance in peer-reviewed studies (exact performance varies by assay and population). In May 2025, FDA cleared the first blood test measuring plasma p-tau217 and it is now available.

Do you want to know?

The Question No One Is Asking

Doctors are asking:

"Should we order the test?"

Researchers are asking:

"How accurate is it?"

Insurance companies are asking:

"Will we cover it?"

But the most important question for families is:

What would you change if you knew you had Alzheimer's pathology in your brain?

Not "what can be done"—what would YOU do differently?

What It Means to Know

You have Alzheimer's pathology—amyloid plaques and tau tangles—accumulating in your brain right now.

It does NOT mean:

• You will definitely develop dementia (some people with pathology never progress)

• You will decline rapidly (timeline is unpredictable—could be 2 years, could be 20)

• Your fate is sealed (interventions can slow progression)

• You should panic

What it DOES mean is that a door has opened to early intervention when new treatments are available and when lifestyle intervention works best. A door to legal planning while you have full capacity. A door to decisions that become more difficult later. A door to preparing your family before crisis.

The New Disease-Modifying Therapies

Lecanemab and donanemab—FDA-approved drugs that slow Alzheimer's progression by about 25%—have strict eligibility requirements:

✅ Mild cognitive impairment OR mild dementia
✅ Confirmed amyloid pathology (requires biomarker test)
❌ NOT moderate or severe dementia

Translation: If you wait until symptoms are obvious, you're likely ineligible. The treatment window closes at moderate dementia.

The Lifestyle Intervention Evidence

The FINGER trial in Finland and US POINTER trial (2025) proved that intensive multi-domain lifestyle interventions can slow cognitive decline. The Lancet Commission (2024) reported 14 modifiable risk factors for dementia. Higher physical activity is associated with slower cognitive and functional decline in individuals with elevated baseline amyloid. Critical finding: Benefits are greatest when started in the MCI stage or earlier. Once moderate dementia arrives, lifestyle interventions are much less effective for patients, but become more important for managing caregiver stress and well-being.

Approaches Providers Can Take Right Now

Approach 1: "Test Everyone with Symptoms"

The problem: Testing without infrastructure to support results. Knowledge without guidance. Diagnosis without stewardship.

Approach 2: "Don't Test Unless It Changes Management"

The problem: Avoidance doesn't prevent progression—it just prevents preparation. The "wait and see" approach guarantees missing treatment windows.

There's a Third Approach: Decision-Preparedness Testing

The question isn't "should we test?" The question is: "What would we do with results?"

"If the test shows Alzheimer's pathology, what would you do?"

• Would you pursue disease-modifying therapy?

• Would you intensify lifestyle interventions?

• Would you accelerate legal and financial planning?

• Would you have family conversations about the future?

• Would you consider clinical trial participation?

"What are your biggest fears about knowing?"

• Anxiety about the future?

• Impact on relationships or self-identity?

• Discrimination concerns (employment, insurance)?

• Not knowing how to act on results?

If your list has 3+ items, have a conversation about testing. Tests are best acted on in specialty care or within a defined care pathway, per the AA guideline.

What To Do Next

If you or a family member has cognitive concerns:

1. Seek Expert Evaluation (Not Just Primary Care Screening)

• Primary care doctors are excellent at many things, but detailed cognitive assessment and BBMs interpretation require specialized expertise

• See a neuropsychologist, neurologist, or geriatrician with cognitive disorders expertise

• Insist on comprehensive evaluation, not just MoCA or MMSE (too insensitive for early changes)

2. Don't Go It Alone

• Cognitive decline is a family journey—involve spouse, adult children, trusted friends

• Seek services that provide longitudinal support, not just episodic evaluation

• Consider programs like Cognitive Stewardship that offer continuous monitoring and decision coaching

3. Act on Results

• If biomarker-positive: Immediately begin evidence-based interventions (lifestyle optimization, DMT evaluation if appropriate, advance planning)

• If biomarker-negative: Pursue alternative diagnoses and address modifiable factors

• Don't let positive results cause paralysis—this is where expert guidance is critical

4. Stay Informed

• Biomarker science is evolving rapidly—guidelines will update

• Clinical trials are ongoing—opportunities for cutting-edge treatment

• New therapies in pipeline—tau-targeting drugs, anti-inflammatory agents, combination therapies

The window for intervention is open. The tools for early detection are here. The question is: Will you use them?

Early Detection Is Only Valuable If Followed by Action

The 2025 Alzheimer's Association guidelines on BBMs represent a pivotal moment in the fight against Alzheimer's disease. For the first time, we can detect pathology early, accurately, and accessibly.

Some experts believe direct-to-consumer or at-home Alzheimer’s blood biomarker testing may be “an innovation too far” — meaning it may cause more harm (anxiety, misinterpretation, unnecessary follow-up tests, discrimination) than benefit in the current state.

They want:

1. Better care infrastructure: Legal protections against discrimination for biomarker-positive individuals; more clinicians trained in dementia/Alzheimer’s care.

2. Funding & workforce expansion: More specialists need to be trained and available.

3. Verified treatments in asymptomatic people: Tests only make sense when there are actionable interventions for people who test positive but do not have symptoms.

This is why I created Cognitive Stewardship. The science of early detection has advanced faster than the clinical infrastructure to support it. Families are getting biomarker results without guidance to know what’s next.

We close that gap.

If you or a loved one has cognitive concerns, or if you've received biomarker results and aren't sure what to do next, Treasure Coast Cognition is here to help.

References

1. Alzheimer's Association. Appropriate Use of Blood-Based Biomarkers in Alzheimer's Disease: Clinical Practice Guideline From the Alzheimer's Association. Alzheimers Dement. 2025. Published online July 28, 2025. doi:10.1002/alz.14225

2. Labcorp. Labcorp Launches First FDA-Cleared Blood Test for Alzheimer's Disease. Published May 2025.

3. Yaffe K, Barnes DE, Rosenberg D, et al. Effect of a Multidomain Lifestyle Intervention vs Health Education on Cognitive Function in Older Adults at Increased Risk of Alzheimer Disease: The US POINTER Randomized Clinical Trial. JAMA. 2025;333(3):217-229. doi:10.1001/jama.2024.24157

4. Livingston G, Huntley J, Liu KY, et al. Dementia Prevention, Intervention, and Care: 2024 Report of the Lancet Standing Commission. Lancet. 2024;404(10452):572-628. doi:10.1016/S0140-6736(24)01296-0

5. Rabin JS, et al. Physical Activity and Longitudinal Cognitive and Functional Decline in Alzheimer Disease. Nat Med. 2025. doi:10.1038/s41591-025-03955-6

Personalized Prevention: Targeting Modifiable Risk Factors in Cognitive Stewardship

2024 Lancet Commission: 45% of Dementia is Potentially Preventable in the Population

The 2024 Lancet Commission on dementia prevention now identifies 14 modifiable risk factors that collectively account for 45% of dementia cases worldwide—up from 40% in the prior analysis with the addition of high LDL cholesterol and vision loss.

45% represents the theoretical maximum if all risk factors were eliminated across entire populations from early life through late life. This does NOT mean that any individual optimizing their risk factors has a 45% reduced dementia risk.

Midlife Interventions May Be Most Critical

The majority of modifiable risk burden (approximately 60% of the 45%) occurs in midlife when vascular and metabolic risk factors exert their greatest impact on brain health decades later.

Life-Course Risk Factor Model

Early Life (ages <45):

• Less education (5%) - Limited cognitive stimulation and cognitive reserve building in formative years

Midlife (ages 45-65):

• Hearing loss (7%) - The single largest modifiable risk factor

• High LDL cholesterol (7%) - NEW for 2024; midlife dyslipidemia accelerates vascular brain changes

• Depression (3%) - May be both risk factor and early symptom

• Traumatic brain injury (3%) - Even mild TBI increases long-term dementia risk

• Physical inactivity (2%) - Sedentary lifestyle deprives brain of neurotrophic benefits

• Diabetes (2%) - Chronic hyperglycemia damages cerebral microvasculature

• Smoking (2%) - Vascular damage and oxidative stress

• Hypertension (2%) - Uncontrolled BP in midlife drives white matter disease

• Obesity (1%) - Metabolic syndrome and chronic inflammation

• Excessive alcohol (1%) - >21 units/week associated with brain atrophy

Late Life (ages >65):

• Social isolation (5%) - Lack of cognitive stimulation and increased depression risk

• Air pollution (3%) - Fine particulate matter (PM2.5) exposure causes neuroinflammation

• Vision loss (2%) - NEW for 2024; untreated cataracts and poor vision reduce engagement

2025 US POINTER Trial: Lifestyle Prevention

Published January 2025 in JAMA, the US Study to Protect Brain Health Through Lifestyle Intervention to Reduce Risk (POINTER) trial represents the first large-scale validation of the Finnish FINGER model in Americans.

Key Findings

Primary Outcome - Global Cognitive Composite: equivalent to 1-2 years of preserved cognitive function

Critical Insights: Any lifestyle intervention, even minimal, provides benefit. However, structured programs deliver ~30% greater cognitive gains (0.24 vs. 0.21 SD/year improvement). The program works, but only if people actually do it. Cognitive Stewardship provides care coordination and evidence-based strategies adherence strategies for maintenance of behavior change to slow decline, not prevent dementia.

Cognitive Stewardship can help translate the Lancet Commission's 14 modifiable risk factors and the US POINTER trial's structured intervention model into a personalized, sustainable program for your brain health. Through continuous monitoring, expert guidance, and intensive support, we can help you implement these evidence-based strategies proven to slow cognitive decline—while also navigating the 10 critical decision points where expert guidance prevents costly mistakes. You get both: (1) Personalized lifestyle intervention for cognitive protection, and (2) Decision-preparedness coaching for life transitions. Together, these maximize your cognitive trajectory and quality of life.

References

1. Livingston G, Huntley J, Liu KY, et al. Dementia Prevention, Intervention, and Care: 2024 Report of the Lancet Standing Commission. Lancet. 2024;404(10452):572-628. doi:10.1016/S0140-6736(24)01296-0

2. Yaffe K, Barnes DE, Rosenberg D, et al. Effect of a Multidomain Lifestyle Intervention vs Health Education on Cognitive Function in Older Adults at Increased Risk of Alzheimer Disease: The US POINTER Randomized Clinical Trial. JAMA. 2025;333(3):217-229. doi:10.1001/jama.2024.24157

The Healthcare System Isn’t Ready

A colleague was at her primary care visit. She asked how to get blood-based biomarker testing at a major university medical center (where she sees her doctors), and was told that she could try to go through neurology but at her age it was basically impossible. Maybe the response would have been different if she were older, but it struck her that even those proactive about getting tested face significant barriers.

Even at top medical centers, proactive families face impossible barriers:

• You can't get blood biomarker testing because you're "too young" or "not symptomatic"—despite tests that predict dementia 10 years before symptoms appear.

• Your primary care doctor waits for obvious memory problems before acting—by then, treatment eligibility windows have already narrowed dramatically.

• Specialist referrals take 3-6 months. Eligibility testing takes another 2 months. By the time traditional care pathways respond, half of early dementia patients have already progressed beyond treatment eligibility.

Healthcare system delays happen when you need action.

Cognitive Stewardship changes this.

We help families act years earlier—with proactive monitoring, personalized intervention, and access when concerns emerge—so you can intervene when science shows it matters most.

The Waiting Years

A friend reached out.
She told me about her mother.

October 2023: The family noticed changes. Memory issues. Movement struggles. They called the university memory clinic — the one everyone recommends.

First available appointment: September 2024.

So they found a physician’s assistant in another city. Tried there. The physician’s assistant was doing their best. The answers didn’t fit what the family was seeing.

By the time they finally reached the specialist and got a DaTscan ordered, it was August 2025.

How hard is it to get imaging?

MRI: Easy.
DaTscan: Not easy.

Real-world barriers:
• Insurance approval: weeks to months
• Limited centers
• 6–12 month wait times
• Some neurologists wait until symptoms are “obvious enough”

Meanwhile, families wait.

Nearly two years from first noticing changes to getting the right diagnosis.

Not because they didn’t care.
Not because they didn’t try.
Because the system isn’t built for the early stage.

In those two years, they navigated alone:

• Is this normal aging?

• Should we push for different tests?

• Which supplements matter?

• When do we get a walker? A shower chair?

• How do we find the right support?

• Where do we find support?

My friend is a researcher. She did everything right. She dug through forums, found Zoom groups, paid thousands for a “personalized” program that delivered generic guidance.

She told me:

“I would have paid anything to not wait. Not for a cure — just for someone who knew what to ask for and when.”

That gap — between noticing something is wrong and getting meaningful support — is where families lose time.

Cognitive Stewardship™ can help.

Not to replace your medical team.
Not to diagnose alone.

To guide families through the waiting — the uncertainty, the decisions, the system navigation.

To make sure that when they finally reach the specialist, they haven’t lost two years.

If you’ve lived this — the waiting, the confusion, the “I wish someone had told us” — what did you need most?

I’m building this for the families who shouldn’t have to navigate alone.

Please share your story. Your experiences are shaping this work.

The views expressed here are my own and do not represent those of the NIH or the U.S. government.