Dementia Doesn’t Happen to One Person. Neither Should the Care.

My grandfather had dementia. Watching someone you love lose pieces of themselves to memory loss is one of the most disorienting experiences a family can go through. It’s not just the forgetting. It’s the fear, the uncertainty, the loss, and the quiet grief of not knowing what comes next — or where to turn.

I think about my grandfather often, especially now that I spend my days leading an organization at the forefront of memory care. And I think about the millions of families who are living that same experience right now.

About 1 in 9 Americans over the age of 65 — roughly 7 million people — are living with dementia today. Alzheimer’s is the most common form, but it’s far from the only one. In Massachusetts alone, more than 130,000 older adults are living with Alzheimer’s or another dementia. A recent national study found that 42% of Americans who reach age 55 will develop dementia at some point in their lives. These are staggering numbers. But behind every one of them is a person who deserves to be seen and cared for with dignity.

Too often, that’s not what happens.

For most families, a dementia diagnosis is the beginning of a long and confusing journey through a fragmented health care system. A neurologist in one office. A psychiatrist somewhere else. A social worker, if you’re lucky enough to find one who specializes in aging. And that’s before families face some of the hardest questions of all: When is it no longer safe to live at home? What level of care makes the most sense right now, and what happens when needs become more complex? Families spend enormous energy piecing together answers from scattered sources, coordinating between providers who rarely speak to each other, at a time when they most need support.

At Hebrew SeniorLife, we’ve decided that’s not good enough — and we’ve built something different.

Our approach to memory care isn’t defined by a single program or a single building. It’s a continuum. One place families frequently start is our Deanna and Sidney Wolk Center for Memory Health, which brings neurology, psychiatry, diagnostics, treatment, wellness, social work, and family support together as a coordinated team — not a referral chain. For those who need some support in their daily lives, we offer specialized memory assisted living. For those with the most complex needs, our long-term chronic care and hospice teams bring that same integrated philosophy to every stage of the journey. We believe families shouldn't have to start over at each transition.

I’ve seen this firsthand. During a recent visit to the Wolk Center, I watched our team move seamlessly from clinical assessment to family conversation to treatment — not as separate handoffs, but as a continuous, coordinated whole. For families who’ve spent months bouncing between providers, walking through our door can feel like finally being caught.

That integration is clinically necessary, not just logistically convenient. Dementia is rarely straightforward, and caring for someone with it rarely is either. Most people living with cognitive decline are also managing heart disease, diabetes, depression, or physical frailty — each of which can complicate the picture in ways no single specialist can fully track. That complexity is one of the reasons families struggle so much. It’s also why a team-based approach isn’t optional. It's the difference between care that manages a diagnosis and care that supports a life.

Nowhere is that more true than in how we think about caregivers. Dementia doesn't happen to one person — it happens to a family. The spouse who hasn’t slept in weeks. The adult child trying to coordinate care from another city. The partner who is grieving someone who is still here. I saw this up close in my own family. My grandmother was my grandfather’s primary caregiver through his long illness, and the toll it took on her was profound. By the time he passed, the years of caregiving had worn her down physically and emotionally in ways that couldn’t be undone.

Research tells us that caregiver well-being isn’t just a quality-of-life issue — it directly affects the person living with dementia. A patient whose caregiver is overwhelmed and burned out will experience a significantly worse disease course than one whose caregiver feels supported and equipped. Caregiver support isn’t an add-on to good dementia care. It is good dementia care.

At Hebrew SeniorLife, this is a core responsibility and a growing focus. Our clinical teams provide caregiver education, coaching, and navigation from the very beginning — helping families understand not just the medical dimensions of the disease, but the financial, legal, and emotional terrain ahead. And our researchers at the Hinda and Arthur Marcus Institute for Aging Research, in partnership with the IMPACT Collaboratory co-housed at Hebrew SeniorLife and Brown University, are studying the toll that caregiving takes — psychologically, physically, and financially — because better research leads to better support.

Currently, the Wolk Center alone serves more than 450 patients and conducts more than 3,400 visits each year. But memory care at Hebrew SeniorLife extends far beyond those walls, and so does our ambition. We are committed to expanding what’s possible — not just in treatment, but in prevention.

There is also a growing body of evidence that the right interventions, applied early enough, can meaningfully reduce the risk of cognitive decline. We take that seriously. Alongside our clinical care, we are increasingly focused on brain health and prevention — bringing evidence-based guidance on sleep, nutrition, exercise, and cognitive engagement directly to older adults and their families. This work is grounded in the science happening at the Marcus Institute, not in wishful thinking. And it reflects our belief that the best time to engage with memory health is before a crisis, not after.

My grandfather didn’t have access to anything like what we’re building. I wish he had. I wish my family had. That’s part of what drives me — the knowledge that the care and support we’re developing today is what families like mine needed then, and that countless families need right now.

Memory loss doesn’t have to mean invisibility. It doesn’t have to mean navigating alone. At Hebrew SeniorLife, we believe that every person living with dementia — and every caregiver walking alongside them — deserves to be seen, supported, and treated as the full human being they are. That isn’t just a belief. It’s a standard we’re building our future around.