After the Dementia Diagnosis: Signposts for Our Journey Together

We often meet the word “dementia” with silence. For one, silence often precedes the diagnosis: research shows that most people endure multi-year uncertainty before a proper diagnosis is made, and up to half will never even receive it. This is in part due to our very appropriate fear and trepidation, but also and often more importantly, it is due to inadequate attention from the healthcare system. In particular, primary care doctors, overworked and under-supported, often lack the time and tools to assist their patients experiencing cognitive impairment. One study in the Midwest found that over two-thirds of primary care providers (PCPs) had little to no confidence in delivering cognitive-related diagnoses for their patients.

As the Alula team has previously written, the answer to this first phase of silence is advocacy. Have an advocate, and be an advocate. Respectfully demand (of healthcare systems and of individual healthcare providers) the time and tools that it takes for an adequate diagnosis to be made. But too often, there is also silence that follows diagnosis. Here too, much fault lies at the feet of American healthcare, which is as underprepared for dementia care as it is for dementia diagnosis.

What do we do now? How do we provide the best support possible? These and other challenging questions, which inevitably follow diagnosis, need not be met with silence. While there is certainly no single roadmap that fits every single family’s needs, there are, to paraphrase the novelist (and former physician) Walker Percy, important signposts across the land of dementia. Below, I’ve divided these signposts into two groups: medical care, and family and community care. Consider them as guides for our dementia care journey.

Medical Care

The first signpost: you will need (and you deserve!) good medical partners along the way. What makes for a good partner? Whether it is a PCP or a memory care specialist, the most important quality in a medical partner is commitment to whole-person care. Dementia care is not just about the human brain. We are just as interconnected inside of our bodies as we are outside of our bodies. As a practicing geriatrician, I have consistently found that improving care for someone’s non-dementia medical conditions has tangible, positive effects on their cognition. If you do not have that trusted someone already, find a healthcare provider who sees, and cares for, the big picture. Once that partner is secured, ask for a post-diagnosis visit where, together, you can review whole-person needs.

At its best, partnership is team-based. If finances or other healthcare resources allow, finding a dementia care coordinator or consultant (DCC) can be a game-changer. Sometimes, DCCs are embedded in memory care clinics. They can also be found as independent practitioners in the community. Otherwise, they function as members of a team through companies that provide aging services. DCCs are outstanding guides with special training in dementia support.

The second signpost: Less is often more. Dementia often invites medical complexity into our lives. Perhaps it’s that our blood pressure seems off (are we taking our medications regularly?). Or arthritis: many living with dementia struggle with pain, more so than their counterparts. As medical care becomes complex, our collective tendency—both on the doctor’ side and the patient’s side—is to do more: see more specialists, take more medications, and seek more interventions. But—in alignment with the principle of whole-person care—this approach rarely leads to positive outcomes. The more we do, the harder it becomes to coordinate care in view of the whole person. We want care to be wise, not just smart. Parsimony and prudence can get us there.

Ideally, the first medical signpost in our journey should reinforce the second. Good medical care partners will work with an eye to getting the most out of the least. But there will be many sirens on our dementia care odyssey beckoning us to go astray. Keeping the second signpost in our minds is therefore indispensable to the journey.

Family and Community Care

The third signpost: What matters most to our loved one with dementia? This is, arguably, the most important signpost of them all, for how we answer it might further modify our goals as we approach medical, as well as family and community, care. To ask it invites two additional inquiries: What kind of life do we want to live with dementia? And for what experience of dying, and ultimately death, do we hope? These are hard questions, but that’s because their difficulty mirrors their significance for all of us. To break out of the silence, we must explore them.

Following this signpost is not just about clarifying one’s power of attorney, or diligently completing one’s advance care planning (important as those things are). It’s about clarifying our values, envisioning a future with dementia that aligns with who we are, and what we care about.

For example: the diagnosis of dementia involves medical language that focuses narrowly on what we can’t do. We may no longer be able to manage our finances or our medications by ourselves. We may need support for activities that previously were effortless for us. This language can feel very depersonalizing, both for the person with dementia and for their caregivers. Clarifying what matters most invites us to focus on what we can do and on what we want to do. And when we build daily routines and care plans around these things, everyone feels uplifted.

The fourth signpost: Dementia care is fundamentally about interdependence. We’ve written about the science of us-care before. This is not just scientific but also quite intuitive: the health of one person in our closest networks depends on many others in that network. The challenge is that a dementia diagnosis often feels profoundly constricting. We may withdraw in order to focus on caregiving. Maybe friends stop visiting as much. Suddenly the network feels smaller, and less reliable.

Interdependence may be natural, but when stressed, it must also become aspirational. Advocacy is not just for the world of medicine, but also for our families and communities. To ask for help, for support—from our family members and friends, our places of worship, our community organizations, and even our governments—is to emphasize our full humanity along the dementia care journey. Interdependence is our superpower, but we must learn to use it, consistently and cogently.