Why the National Alzheimer's Project Act's Alzheimer's-Only Focus Hurts Families Like Yours
The National Alzheimer's Project Act (NAPA) was created with good intentions, but its narrow focus on Alzheimer's disease alone leaves millions of families facing other dementias without a national plan. If your loved one has Lewy body dementia, frontotemporal degeneration, or vascular dementia, you may feel invisible to policymakers. The good news is that understanding this gap helps you advocate for better care and connect with resources that serve all dementias. This article explains what's wrong with the Alzheimer's-only approach and gives you concrete steps to navigate the system.
Key points
- NAPA's Alzheimer's-only focus leaves out 40% of people with other dementias, leaving their families without a national plan.
- Dementia is not one disease — each type has unique symptoms, treatments, and care needs.
- Push for a specific diagnosis; vague labels delay appropriate care.
- Advocate for a five-fold balance: prevention, treatment, rehabilitation, compensation, and palliative care.
- Join disease-specific support groups for tailored resources and community.
- Contact your representatives to demand a national plan that covers all dementias.
The Problem with an Alzheimer's-Only Lens
NAPA was signed into law in 2011 with a goal to 'prevent and effectively treat Alzheimer's disease by 2025.' But as dementia care expert Teepa Snow points out, this is like creating a national plan against asthma while ignoring COPD and emphysema. Dementia is not one disease — it's an umbrella term for many conditions, including Alzheimer's, Lewy body dementia, frontotemporal degeneration, and vascular dementia. Each has different causes, symptoms, and care needs. By focusing only on Alzheimer's, NAPA leaves out the 40% of people with dementia who have another type. This means research funding, care guidelines, and support services are skewed toward one disease, while families dealing with other dementias struggle to find tailored help.
Why This Matters for Your Family
If your loved one has a non-Alzheimer's dementia, you may have already felt the effects. Doctors often misdiagnose or take longer to identify the condition because training and diagnostic tools are geared toward Alzheimer's. As one physician noted, many clinicians feel uncertain when working up a cognitive complaint, and that uncertainty can delay care. Additionally, medications approved for Alzheimer's — like donepezil or memantine — may not work the same way for other dementias, and some can even be harmful. For example, certain antipsychotics can be dangerous for people with Lewy body dementia. Without a national plan that addresses all dementias, families are left to piece together care from fragmented resources.
The Cost of a Narrow Focus
The Alzheimer's Association reports that total payments for care of people with Alzheimer's and other dementias were $226 billion in 2015, with nearly 70% paid by Medicare and Medicaid. By 2050, that cost could reach $1 trillion. But these figures lump all dementias together, masking the specific needs of each type. NAPA's goal of a cure by 2025 also sets an unrealistic expectation, diverting attention from the immediate need for better care and support. As Teepa Snow argues, we need a five-fold balance: prevention, treatment, rehabilitation, compensation for lost skills, and palliative care. Without this, families are left without a roadmap for managing symptoms that don't fit the Alzheimer's mold.
General caregiving information, not medical advice. Check medications and major care changes with your clinician.
Step-by-step
Push for a precise diagnosis: request a specialist evaluation (neurologist or memory clinic) with detailed cognitive testing, brain imaging, and possibly a spinal tap or PET scan. When meeting any provider, say: 'My loved one has [specific dementia type]—what treatments and supports are available for this condition?' The exact type changes treatment, medication choices, and care planning.
Learn symptoms specific to your loved one's dementia: Lewy body often includes visual hallucinations, movement problems, and sleep disturbances. Frontotemporal affects behavior and language first. Vascular may come with stepwise declines after strokes. Write down what you observe and share it with the doctor so care strategies are tailored to the real picture.
Ask whether each medication is appropriate for the specific dementia type. Drugs like donepezil and memantine are approved for Alzheimer's but may be ineffective or cause serious side effects in other dementias—particularly Lewy body, where antipsychotic sensitivity can be life-threatening. Ask: 'Is this medication right for my loved one's specific type, and what reactions should we watch for?'
Build a multidisciplinary care team: occupational therapists help with daily tasks, speech therapists with communication challenges, and social workers connect you to respite care, financial aid, and legal planning.
Create a written 'dementia directive' covering medical, legal, financial, and daily living needs. Review and update it as the disease progresses so it always reflects current wishes.
Monitor for complications common in non-Alzheimer's dementias: people with Lewy body are at high risk for falls and dangerous medication reactions; those with frontotemporal may develop swallowing problems. Watch for coughing during meals—aspiration pneumonia is a leading cause of death across dementias.
Join a support group for your specific dementia type (e.g., Lewy Body Dementia Association, Association for Frontotemporal Degeneration) for online groups, helplines, and educational materials.
Speak up to policymakers—contact elected representatives and tell them NAPA's Alzheimer's-only focus leaves out millions of families. Share your story with a local newspaper or at a public hearing.
What not to do
Don't expect a cure soon—NAPA's 2025 goal is unrealistic for most dementias. Focus on managing symptoms, improving quality of life, and planning for the long term.
Don't ignore financial and policy gaps: because NAPA focuses on Alzheimer's, research funding for other dementias is limited. Advocate for balanced funding and check whether your state's dementia plan covers all types.
Don't forget to care for yourself: 15 million unpaid caregivers provided 17 billion hours of care in 2014. Join a caregiver support group, seek respite, and protect your own health.
Don't rely solely on Alzheimer's-focused resources—some support groups, materials, and care protocols are built around Alzheimer's and may not fit other dementias. Seek out organizations that cover all dementias and disease-specific groups.
Practical tools
Dementia Type Advocacy Script
When talking to a doctor or case manager, say: 'I understand my loved one has dementia, but I need to know the specific type. Can we do further testing to determine if it's Alzheimer's, Lewy body, frontotemporal, or vascular? This will help us choose the right treatments and plan for the future.' If they resist: 'I know different dementias have different treatments and risks. I want to make sure we're not missing something.'
Five-Fold Balance Care Plan Checklist
Based on Teepa Snow's framework, build a care plan that addresses: (1) Prevention—reduce risk factors like high blood pressure and diabetes. (2) Treatment—use medications and therapies appropriate for the specific dementia. (3) Rehabilitation—work with occupational and speech therapists. (4) Compensation—use memory aids, calendars, and simplified routines. (5) Palliative care—focus on comfort and quality of life. Review this with the care team every 6 months.
Dementia Directive Document
Create a written directive covering medical preferences, legal authority, financial arrangements, and daily living needs. Include the specific dementia type, current medications and known reactions, care goals, and names of all care team members. Update at every major transition: new diagnosis, hospitalization, change in care setting, or significant decline.
Non-Alzheimer's Symptom & Complication Tracker
A weekly log tailored to the specific dementia type. For Lewy body: track visual hallucinations, sleep disturbances, falls, and any medication reactions (especially antipsychotics or anesthesia). For frontotemporal: note behavior or language changes, swallowing difficulty (coughing during meals), and weight loss. For vascular: record sudden stepwise declines, blood pressure readings, and post-stroke symptoms. Bring to every medical appointment.
Discuss with your clinician
Ask your doctor: 'What specific testing can we do to determine the exact type of dementia my loved one has?' This may include brain imaging, cognitive tests, or lumbar puncture.
Discuss: 'Are the medications we are using appropriate for this specific dementia type? For example, are cholinesterase inhibitors safe for Lewy body dementia?'
Ask: 'What are the signs of aspiration pneumonia, and how can we prevent it? Should we see a speech therapist for a swallowing evaluation?'
Discuss: 'What advance care planning documents do we need? Can you help us complete a dementia directive or living will?'
Ask: 'Are there clinical trials or research studies that might be relevant for this specific dementia type?'
Related guides
- Advocating for a more accurate dementia diagnosis
- Supporting meaningful risk-taking in Lewy body or Parkinson's dementia
- Frontotemporal dementia (FTD) behavioral changes and caregiver response
- Involving people with dementia and caregivers in policy
- Single-sensory care techniques for late-stage dementia
- Understanding Aspiration Pneumonia Risk Factors in Late-Stage Alzheimer's
- joint reminiscence groups for person and caregiver
- Your Legal Roadmap for Dementia: Essential Documents for Advance Care Planning
- Sleep medication safety in dementia
- learning complex medical care tasks from the hospital team