As Alzheimer’s Prevalence Increases, a New Patient-Centric Care Model Is Needed

The Alzheimer’s Association released its 2024 Facts and Figures Report, including a special report on dementia care navigation. The complexity for patients and their caregivers in navigating care results in more emergency room visits, longer hospital stays, decreased quality of life and increased physical and emotional stress for the patient and their caregiver and increased costs to the health care system. A new dementia care navigation model explores how to streamline the path to complete care and improve outcomes for all. 

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By Alzheimer's Prevention Bulletin

Did you know the brain changes leading to Alzheimer’s disease begin 20 or more years before memory loss and other symptoms develop? That’s just one of many facts reported in the Alzheimer’s Association 2024 Facts and Figure Report.   

An estimated 6.9 million Americans are living with Alzheimer’s dementia. As the size of the U.S. population age 65 and older continues to grow, so too will the number of Americans living with this disease. Alzheimer’s and related dementias take an incredible toll on the patient and family members.  The Special Report explores how to improve dementia care navigation. 

Navigating the complex health system 

Alzheimer’s care involves interactions with primary care providers, medical specialists, social services, medication management, insurance and more. This complex maze can result in:  

  • Delays in diagnosis and treatment 
  • Increased hospital and emergency department visits 
  • Not getting needed support  
  • Decreased quality of life  
  • Higher emotional and physical stress levels for caregivers 

A national strategy to support family caregivers 

The Recognize, Assist, Include, Support, and Engage Family Caregivers Act of 2018 put into motion the first national strategy to support family caregivers. In 2022, the National Strategy to Support Family Caregivers highlighted four core principles:   

  1. Placing the family and person at the center of all interactions 
  2. Addressing trauma and its impact on families 
  3. Advancing equity, accessibility and inclusion for family caregivers in underserved communities  
  4. Elevating direct care workers as family caregiving partners 

The current state of care navigation 

A survey to understand how caregivers interact with the health care system and how care navigation is currently employed was commissioned by the Alzheimer’s Association. Key findings included: 

  • Caregivers have trouble interacting with the health care system. 
  • Cost and care coordination are top stressors. 
  • Most health care workers providing navigator-type services do not focus exclusively on dementia or care navigation. 
  • Training in dementia care navigation is lacking and not standardized. 

Some of the dementia care navigation services caregivers said would be most valuable include: 

  • 24/7 support or help line 
  • Coordination of care between medical specialists and help scheduling appointments 
  • Help understanding and managing the patient’s condition, behavioral symptoms and medications 
  • Assistance with insurance, public benefits, and community support services 
  • Emotional and cultural support and finding respite services 
  • Arranging transportation and meal delivery 
  • Help planning for end-of-life decisions 

Caregivers and health care workers agreed that cultural competency, in-person or telephone communication, and non-medical individuals as dementia care navigators were important. 

Mapping a better future for dementia care navigation 

The goal of care navigation is to improve the quality of life for people living with dementia and enable them to live in their homes as long as possible and reduce caregiver stress. In 2023, experts convened by the Alzheimer’s Association defined dementia care navigation as “a program that provides tailored, strengths-based support to persons living with dementia and their care partners across the illness continuum and settings to mitigate the impact of dementia through collaborative problem solving and coaching.”   

The Special Report survey surfaced three themes to advance dementia care navigation efforts:  

  1. Formalizing the dementia care navigator role and increasing proficiency in dementia care 
  2. Scaling and expanding access to dementia care navigation programs 
  3. Creating direct lines to dementia care navigators 

Read the full report for more details about the findings and the latest statistics on Alzheimer’s disease. 

Looking for other ways to take action? Find a study looking for participants, like you!