When Governments Drop the Ball: Understanding the Dementia Care Crisis in the US and Canada

You're not imagining it: the systems meant to help are often missing in action. Dementia has long been treated as a social issue rather than a medical priority, leaving families to navigate a fragmented, underfunded care landscape with little support. Across the US and Canada, government inaction has meant too few trained providers, patchy access to non-drug strategies, and a crushing financial burden on families. While the big picture is frustrating, understanding why this happens can help you advocate more effectively and find the workarounds that do exist.

Key points

• Governments in the US and Canada have treated dementia as a social issue, not a medical priority, leading to chronic underfunding and lack of a coordinated care system.
• Healthcare providers are rarely trained in practical, non-drug strategies for managing dementia behaviors, leaving families without the tools they need.
• Family caregivers provide billions in unpaid care each year, yet receive little formal support or training.
• COVID-19 made the crisis worse by isolating people with dementia and accelerating cognitive decline in many.
• You can advocate for change at the policy level while also building your own support network and learning evidence-based strategies.
• Prioritize your own health—caregivers are at higher risk for dementia and burnout.

Dementia as a 'Throwaway Diagnosis'

For decades, dementia has been treated as a low-priority condition—something to be managed, not cured. Experts like Teepa Snow describe it as a 'throwaway diagnosis' where, unlike cancer or diabetes, there is rarely a coordinated care plan or a game plan for the family. This mindset dates back to the 1950s and 60s, when healthcare systems viewed dementia as a social care issue rather than a health care issue. As a result, politicians and policymakers have not understood the challenge, and funding has consistently gone elsewhere.

A System That Fails to Train or Support

When a doctor gives a dementia diagnosis, families are often handed a pamphlet and told to 'blow it off and divert to an activity.' That is not enough, and it never has been. The medical and memory care industries have failed families for decades by not providing real, practical solutions for everyday challenges: how to get someone to shower, take pills, or get into a car for an appointment. Providers are trained on what dementia is and what causes it, but not on how to manage the behaviors that break caregivers. Meanwhile, family caregivers in the US provided an estimated $257 billion in unpaid care in 2020 alone—a staggering hidden subsidy that governments have not addressed.

The Economic and Human Toll of Inaction

Worldwide, dementia care costs topped $818 billion in 2015 and are projected to exceed $1 trillion. In the US, total payments for Alzheimer's and other dementias were $226 billion in 2015, with nearly 70% paid by Medicare and Medicaid. Yet the system remains reactive, not proactive. There is no national infrastructure for dementia care, no coordinated approach to keep people at home, and no requirement for providers to learn non-pharmacologic strategies. The result: families are left to figure it out alone, often at great emotional and financial cost.

COVID Made a Bad Situation Worse

The pandemic pushed dementia even further onto the back burner. Public health messaging ignored people living with brain changes, socially and physically isolating them, and putting families under extreme stress for long periods. When the pandemic ended, we discovered a whole new group of people whose cognitive decline had accelerated due to isolation and lack of stimulation. Governments had not read the writing on the wall before COVID, and they certainly did not catch up afterward.

General caregiving information, not medical advice. Check medications and major care changes with your clinician.

Discuss with your clinician

Ask your doctor: 'Are there any reversible conditions (like vitamin B12 deficiency, thyroid issues, or medication interactions) that could be mimicking dementia? Should we run tests to rule those out?'

Ask your doctor: 'What are the risks and benefits of the medications you're prescribing for dementia symptoms? Are there non-drug alternatives we should try first?'

Ask your doctor: 'Given my loved one's stage and type of dementia, what is the expected progression? How can we plan for future care needs?'

Ask your doctor: 'Are there clinical trials or research studies that might be appropriate for my loved one? What are the potential benefits and risks?'

Ask your doctor: 'How can I get a referral to a dementia care specialist, a geriatrician, or a memory clinic?'

Related guides

• Advocating for a more accurate dementia diagnosis
• navigating the healthcare system after a diagnosis
• caregiver leadership and self-advocacy
• Non-drug first: deciding when medication is needed for dementia behaviors
• assessing whether a person with dementia can still manage finances
• Hiring a caregiver for a loved one with dementia
• Finding and Paying for Respite Care: A Practical Guide for Dementia Caregivers
• Government Benefits That Help Pay for Dementia Care
• cross-cultural learning from elders with dementia
• Finding Your People: A Caregiver's Guide to Dementia Support Groups

Sources

• NICE
• PubMed
• PMC
• Alzheimer's Association
• Am Academy of Neurology
• betterhealthwhileaging.net
• Teepa Snow's Positive Approach to Care
• All Home Care Matters
• Answers About Alzheimer's