Health care system must change approach to Alzheimer’s treatment
Phoenix physician: Disease is relational with family as co-patient, caregiver's emotional state a clinical variable, quality of interaction a treatment modality
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Dani Cabral, M.D.
Submitted photo/Dani Cabral
What families need is not more fragmented appointments or delayed follow-ups. They need guidance in how to stay connected. They need support in how to adapt, communicate and respond as the disease changes. They need a system that recognizes that well-being is shaped not just by what is happening in the brain, but by what is happening between people.”
OPINION — Ask any family caregiver what breaks them when someone receives an Alzheimer's diagnosis and they won't describe a neurological event. They'll describe a moment of not being recognized. A conversation that went sideways. The exhaustion of being a stranger to someone who knows your face. The grief of loving someone who is still there, yet not there.
Alzheimer's and related diseases do not just happen inside the brain. They happen between people.
The core challenges of memory loss, confusion, behavioral changes, changing sense of self become problems in a relational context.
A person experiencing significant cognitive changes living in a well-attuned, responsive environment can experience dignity, connection and even joy.
The same person in an environment that demands orientation to time and place, that corrects and redirects, that treats the diagnosis as the person, suffers.
This is why the American health-care system, built on a fundamentally individualistic model, keeps falling short.
It is designed to diagnose, treat and discharge individuals. It measures outcomes in individuals. It bills for individuals. It has no reimbursement code for “helped a family understand what their person still needs from them.” It has no clinical category for when a caregiver’s grief and exhaustion begin to shape the quality of care.
The suffering in Alzheimer's and related diseases is overwhelmingly relational.
The loss of identity and personhood that people experience is not just neurological, it is social. The behavioral crises that land people in emergency rooms are often triggered by environmental and relational mismatches, not by cognitive changes progressing in isolation.
Caregiver burnout that accelerates institutionalization is a relational collapse. We become ourselves in relationship with others, and we lose ourselves the same way.
Research on person-centered care has demonstrated this for decades. Tom Kitwood's foundational work showed that what he called “malignant social psychology” — the ways caregivers and systems unknowingly diminish the person living with cognitive changes — accelerates decline far beyond what neurology alone predicts.
Conversely, relationships that affirm personhood, meet emotional needs and communicate in adapted ways can sustain function and well-being long past what the diagnosis would suggest.
The implications are radical. If the core challenges of Alzheimer's and related diseases are relational, then the family is not a support resource for the patient. The family is a co-patient.
The caregiver's emotional state is a clinical variable. The quality of interaction is a treatment modality.
Helping a spouse learn how to enter someone's reality rather than correct it is medicine. Teaching a family to grieve while caregiving, anticipatory grief, ongoing loss, the long goodbye, is as urgent as any pharmacological intervention.
Our health-care system isn't equipped for this, not because of ignorance, but because of architecture. An individualistic system cannot hold a relationship as its unit of care. It cannot bill for it, measure it or schedule it in 15-minute increments.
A small but growing number of practices are refusing to accept that limitation. Physician-led specialty practices, focused on brain aging, are built on a different premise: The person experiencing cognitive changes and their care partners are inseparable, and both belong at the center of care.
Rather than rushing through a diagnosis and sending families home to figure it out alone, this model treats caregiver burnout, grief and demoralization as clinical concerns.
This is not a niche idea. It is what science has been pointing toward for decades, and what families have been asking for all along.
What families need are not more fragmented appointments or delayed follow-ups. They need guidance in how to stay connected. They need support in how to adapt, communicate and respond as the disease changes. They need a system that recognizes that well-being is shaped not just by what is happening in the brain, but by what is happening between people.
If we continue to design care around individuals, we will continue to miss the mark. But if we begin to treat relationships as central, something to be supported, guided and strengthened, we can fundamentally change the experience of these conditions.
Dani Cabral, M.D., is an Ivy League trained dual board-certified neurologist and psychiatrist with over 15 years of experience in Alzheimer’s care and clinical research.Please submit comments at yourvalley.net/letters or email them to AzOpinions@iniusa.org. We are committed to publishing a wide variety of reader opinions, as long as they meet our Civility Guidelines.
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