This week’s newsletter explores the need for better support for both the loved one and the caregiver throughout the journey.

We know more about dementia than ever before. We know it is not one disease, not simply “memory loss,” and not an inevitable part of aging. We know Alzheimer’s disease differs from vascular dementia, Lewy body dementia, frontotemporal dementia, and other conditions that can alter judgment, movement, language, mood, and personality. We can name the symptoms with greater precision than past generations could.

And yet, after the diagnosis is delivered, too many families hear the same unspoken message: Good luck.

That gap — between what medicine knows and what families are expected to endure — is where America’s dementia crisis now lives.

The public often talks about dementia as though it begins and ends with forgetfulness. A misplaced wallet. A repeated story. A name that slips away. But dementia is far more complicated than that. It can arrive as confusion, paranoia, hallucinations, impulsive behavior, poor judgment, personality changes, or difficulty speaking. For some families, the first sign is not that Mom forgot a birthday. It is that she became suspicious of the people closest to her. Or that Dad, once careful with money, suddenly fell for scams. Or that a spouse who had always been gentle became angry, restless, or afraid.

This matters because misunderstanding dementia can deepen the suffering around it. Families may mistake symptoms for stubbornness, cruelty, depression, or ordinary aging. They may spend months or years trying to reason with a disease that does not respond to reason. Better public understanding can reduce blame and shame. But understanding alone is not enough.

A diagnosis should be the beginning of support. Too often, it is the beginning of isolation.

Families may leave a doctor’s office with a medical term but without a practical roadmap. Who explains how to handle wandering, agitation, medication, finances, driving, bathing, legal documents, or the question no one wants to ask: when is home no longer safe? Who tells the adult child how to talk to a parent who insists nothing is wrong? Who tells the spouse what to do when sleep disappears for months at a time? Who helps the family distinguish between a bad day, a medical emergency, and a new stage of decline?

In the absence of a real system, families become the system. They become nurses, case managers, advocates, accountants, transportation coordinators, safety inspectors, and grief counselors. They learn by crisis. They Google at midnight. They make decisions with incomplete information and then live with the guilt.

The scale of this burden is enormous. The Alzheimer’s Association estimates that in 2025, 12.7 million family members and other unpaid caregivers provided 19.6 billion hours of unpaid care to people living with Alzheimer’s or other dementias. That averages nearly 30 hours of care per caregiver per week. Globally, dementia cost economies an estimated $1.3 trillion in 2019, and about half of those costs were tied to informal care by family members and friends. Women also provide about 70% of care hours for people living with dementia.

These numbers tell us something we should not ignore: unpaid caregiving is often described as love, but it is also labor.

Of course, families want to care for the people they love. There is dignity in helping a parent dress, sitting with a frightened spouse, or making a home safer for someone whose world is shrinking. But love does not make caregiving cost-free. It costs sleep, income, health, careers, marriages, and peace of mind. It can turn adult children into parents before they are ready and spouses into full-time caregivers while they are grieving the gradual loss of the person beside them.

The problem is not that families do not care enough. It is that we have built a system that assumes they can absorb almost anything. A daughter can reduce her work hours. A spouse can sleep lightly for years. A son can navigate Medicaid forms after midnight. A neighbor can check the stove. A granddaughter can translate medical instructions. Each act may be loving. Taken together, they reveal a care system held together by private sacrifice.

Some will say this is simply what families do. And they are partly right. Families have always cared for one another through illness, aging, and decline. That bond is not a weakness; it is one of the most humane things about us.

But family caregiving should be supported, not exploited. Dignity should not require abandonment by the health care system. No one should have to choose between keeping a loved one safe and keeping themselves afloat.

We need to treat dementia care as more than a private family matter. That does not mean turning every challenge into a government program or stripping families of responsibility. It means recognizing that dementia is a long, complex, expensive condition that demands coordinated support.

Every dementia diagnosis should come with care navigation: someone who can help families understand symptoms, plan for legal and financial decisions, identify local resources, and prepare for what may come next. Respite care should be easier to access, not treated as a luxury for those who know how to find it. Primary care doctors, emergency rooms, and first responders need better training to recognize dementia-related behaviors and respond with skill rather than confusion. Employers should also acknowledge that caregiving is part of modern work life, not an inconvenience workers should hide.

Communities have a role, too. Adult day programs, memory cafés, caregiver support groups, dementia-friendly faith communities, and senior centers are not sentimental extras. They are part of the social infrastructure that helps families remain intact. A society that can build hospitals and research laboratories should also be able to build places where caregivers can breathe.

We should measure progress not only by how precisely we can diagnose dementia, but by what happens next. A diagnosis should open a door to support, not leave a family standing alone in a hallway with a pamphlet and a crisis they are expected to manage in private.

We know more about dementia than ever. Now we need to prove that knowledge can translate into better care throughout the journey for both the loved one and the caregiver.

You can access the complete article here. Additionally, we have 100's of other senior care and health-related articles here.

Video: ReThinking Support After a Dementia Diagnosis

This webinar challenges the way dementia care is often framed after diagnosis. Dr. Lynne Philipson introduces the session as part of the Forward with Dementia program, which aims to improve diagnosis and immediate post-diagnostic support for people with dementia and their carers. Professor Lee-Fay Low argues that dementia should not be understood only as cognitive decline but also as a condition that affects everyday functioning, social participation, communication, relationships, and well-being.

The presentation highlights a major gap between what people need after a diagnosis and what they often receive. Survey and interview findings from the Forward with Dementia/Cognisance work suggest that many people feel dissatisfied with post-diagnostic information, receive no clear care plan, and struggle to navigate disconnected services. Low reframes post-diagnostic support as “post-diagnostic rehabilitation and support,” pointing to evidence for interventions such as cognitive stimulation therapy, cognitive rehabilitation, occupational therapy, exercise, and some psychological supports.

The broader significance of the webinar is its call to make rehabilitation and practical support routine after dementia diagnosis. Rather than leaving people and carers in a “void,” the speakers argue for written plans, accessible information, service navigation, allied health access, emotional support, and realistic hope focused on maintaining function and quality of life.

View the video here:

Highlights:

• (00:00) — Dr. Lynne Philipson introduces the Forward with Dementia webinar series as a program focused on improving diagnosis and immediate post-diagnostic support.
• (00:28) — The webinar asks why people diagnosed with dementia receive so few health treatments and psychosocial supports despite dementia being a major cause of disability in Australia.
• (07:49) — Low explains that dementia is often framed mainly as cognitive decline, while its impact on everyday independence and function is frequently underemphasized.
• (11:23) — The Cognizance study is introduced as a five-country project examining experiences of diagnosis and support in the first 12 months after dementia diagnosis.
• (12:14) — Survey findings show that more than three-quarters of respondents were dissatisfied with information after diagnosis, and only about 30 percent received a care plan.
• (16:49) — Low proposes reframing post-diagnostic care as “post-diagnostic rehabilitation and support.”
• (22:13) — Cognitive stimulation therapy is described as a structured group activity for people with mild to moderate dementia, with evidence of benefits for cognition and other outcomes.
• (23:56) — Cognitive rehabilitation is presented as an individualized, goal-based approach focused on meaningful functional goals such as using email, cooking, dressing, or managing daily tasks.
• (26:26) — Occupational therapy interventions are described as improving daily functioning, quality of life, and carer outcomes in some studies.
• (36:20) — Low describes a major gap between evidence that rehabilitation can help and the limited services people with dementia can actually access after diagnosis.
• (41:47) — The panel emphasizes that clinicians should offer realistic hope by focusing on quality of life, function, and practical plans rather than promising to stop dementia progression.
• (56:27) — Low concludes that people should leave diagnosis with written information, a plan where possible, Dementia Australia contact details, Forward with Dementia resources, and a clear next step.