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National Policy Milestones for Dementia Care and Support: A Roadmap for Families

This article explains the key national policy milestones that experts recommend for improving dementia care and support in the United States. These milestones are like a roadmap for creating a better system—one that is person-centered, coordinated, and accessible. While policy can feel distant from daily caregiving, understanding these goals can help you advocate for your loved one and know what services and supports should be available. There are concrete steps you can take now to align your family's care with these best-practice recommendations.

Key points

  • National policy milestones for dementia care and support focus on person-centered care, provider training, and care coordination.
  • These milestones were developed by the Alzheimer’s Association workgroup and published in 2016, providing a 10-year roadmap.
  • You can use these milestones as a practical checklist to evaluate and advocate for better care for your loved one.
  • Non-drug approaches should always be tried first for behavioral symptoms, as emphasized by multiple guidelines.
  • Dementia-specific advance care planning (using tools like the University of Washington directive) is critical while your loved one still has capacity.
  • Caregiver support, including respite and education, is a key part of the milestones—don’t hesitate to ask for help.

Why National Milestones Matter for Your Family

The U.S. National Plan to Address Alzheimer’s Disease has clear goals for biomedical research, but until recently, there were no similar milestones for the care and support that families like yours rely on every day. A workgroup convened by the Alzheimer’s Association reviewed the literature, looked at how other countries handle dementia care, and identified the public policies needed over the next ten years to build a more ideal system. These milestones are not just abstract ideas—they are practical targets for things like better-trained healthcare providers, coordinated care across settings, and meaningful support for caregivers. When you understand these milestones, you can better navigate the system, ask the right questions, and push for the services your family deserves.

The Core Goals: Person-Centered Care, Training, and Coordination

The proposed milestones focus on three big areas: making care truly person-centered, ensuring all healthcare providers have proper dementia training, and coordinating care so it doesn't fall through the cracks. Person-centered care means that your loved one’s preferences, values, and life story guide every decision—not just a checklist of symptoms. For example, the milestones call for national curricula for primary care doctors by late 2016, for geriatricians and hospitalists by 2017, and for nurses, social workers, and healthcare administrators by 2018. This training would cover how to identify the root cause of challenging behaviors, how to use non-drug approaches first, and how to manage medications safely. For you as a caregiver, this means that when you walk into a doctor’s office or a hospital, the staff should know how to communicate with someone with dementia, how to assess pain without relying on words, and how to involve you as a partner in care.

What This Means for Caregivers Day-to-Day

These policy milestones also address the practical supports that make a huge difference in your daily life. They call for better access to adult day services, respite care, and support groups—things that can prevent caregiver burnout and keep your loved one at home longer. They also emphasize the importance of advance care planning, including dementia-specific advance directives, so that your loved one’s wishes are known and respected even as the disease progresses. When care is coordinated—meaning your loved one’s primary care doctor, neurologist, home health aide, and adult day center all share information and work together—you spend less time repeating the same story and more time focusing on what matters. The milestones also push for services to be accessible to people who don’t have a caregiver, who lack transportation, or who have other responsibilities like work or children. Knowing these goals can help you ask your local Area Agency on Aging or your loved one’s healthcare team: 'Are you working toward these standards? How can I help make sure we get there?'

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

Step-by-step

  1. Use the milestones as a checklist when evaluating providers—ask whether they use person-centered care, have dementia-specific training, and coordinate care with others. If they cannot answer, consider looking elsewhere.

  2. Complete the University of Washington dementia-specific advance directive while your loved one still has capacity, covering pain management, life-sustaining treatments, and living preferences at each stage.

  3. Request a care coordinator from your loved one's insurance (Medicare, Medicaid, or private) or contact your local Area Agency on Aging to align care with the milestones.

  4. Push for non-drug approaches first when behavior changes occur—ask if the root cause has been identified and whether an occupational therapist or behavior specialist has been tried before medications.

  5. Connect with your local Alzheimer's Association chapter for support groups, the 24/7 Helpline (800-272-3900), and state-level advocacy opportunities.

  6. Keep a portable care plan that travels with your loved one—maintain a binder with the advance directive, medication list, and provider contact information.

  7. Watch for Medicare hospice eligibility signs (e.g., weight loss, recurrent infections, needing help with all ADLs) and ask the clinical team about the PAINAD scale to assess pain when your loved one cannot speak.

What not to do

  • Do not assume all doctors and hospitals follow these milestones—ask direct questions about their practices rather than waiting for them to volunteer information.

  • Do not go it alone—join a support group, use respite care, and ask for help before you reach a breaking point.

Practical tools

  • Alzheimer's Association Milestones Report (2016)

    Read 'Report on milestones for care and support under the U.S. National Plan to Address Alzheimer's Disease' (Alzheimer's & Dementia, 12, 334-369). Focus on Goal 2 (care) and Goal 3 (support) tables, and use them as a checklist to evaluate providers and advocate for improvements.

  • University of Washington Dementia-Specific Advance Directive

    This form documents wishes for pain management, life-sustaining treatments, and living preferences at each dementia stage. Download, complete with your loved one while they can participate, and share copies with their doctor, hospital, and family.

  • PAINAD Scale

    A tool to assess pain in non-verbal individuals using five indicators: breathing, vocalization, facial expression, body language, and consolability. Each is scored to give a total pain rating guiding relief decisions.

  • Alzheimer's Association 24/7 Helpline (800-272-3900)

    Call anytime for confidential support, resource information, care consultation, crisis assistance, and state-level milestone implementation guidance.

Discuss with your clinician

Ask your clinician: 'Based on the national milestones, what training have you and your staff completed in dementia care? Can you share your approach to person-centered care?'

Discuss with your clinician: 'When should we start advance care planning using a dementia-specific advance directive? Can you help us complete it and ensure it is in the medical record?'

Ask your clinician: 'What non-drug approaches do you recommend for my loved one’s behavioral symptoms? Can you refer us to an occupational therapist or a dementia behavior specialist?'

Discuss with your clinician: 'Based on Medicare hospice criteria, when might my loved one be eligible for hospice? Can you help us monitor for signs like weight loss or recurrent infections?'

Ask your clinician: 'How do you coordinate care with my loved one’s other providers (e.g., neurologist, home health, adult day center)? Can we set up a care conference to align everyone on the same plan?'

Related guides

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