Welcome to the first issue of the ALZ Media Insider, a new media resource from the Alzheimer’s Association featuring emerging news and trends related to Alzheimer’s, dementia and brain health.

The Fall 2016 ALZ Media Insider focuses on recently released research from the Alzheimer’s Association on the biggest challenges and needs for dementia caregivers.

Enclosed are data points, collaterals, resources and expert spokespersons available for perspective.  

Failure to Recognize, Acknowledge Signs Delays Diagnosis for People with Alzheimer's

A recently released survey found the top three reasons dementia caregivers delayed contacting a physician about dementia symptoms were: the person with disease (PWD) insisted they were fine; the caregiver thought it was a normal part of aging; and the caregiver didn’t want to upset the person. This means many caregivers and people with dementia don’t go to the doctor until their disease has progressed to the later stages, often after symptoms worsen.  Further, more than 1/3 of people with dementia were given only a general ‘memory loss’ or ‘dementia’ diagnosis because physicians believe families will “lose hope” after hearing the term Alzheimer’s. That can mean lost opportunities to treat symptoms, plan for the future or participate in a clinical trial.  

  • How to Identify Warning Signs: Know the 10 warning signs and when to consult a physician
  • Hear from Caregivers: Current caregivers are available for interviews to discuss their reactions, feelings and experiences following diagnosis of a family member. 
  • Expert Interview: Ruth Drew, Director of Family and Information Services at the Alzheimer’s Association, on how caregivers can talk about these signs and how to handle anger or denial from a person with dementia

Dementia Caregivers Want High-Touch and High-Tech Help

After an Alzheimer’s diagnosis, caregivers want basic information about the disease and advice on how to keep their loved one healthy and maintain quality of life. More than half of caregivers surveyed expressed a strong desire for help from a care consultant at the time of diagnosis and beyond to help navigate the disease. However, more than half of caregivers (51%) reported that their physicians did not provide critical information at the point of diagnosis. Further, while 83% of caregivers use online resources to learn more, nearly a third were unsure where to look and which sites had the best information.

  • Where to Find Resources and Support: A diagnosis of Alzheimer’s raises many questions. The Alzheimer’s Association has several free, online tools to help find answers, local resources and support. Learn more here.
  • Caregiver Insights: Caregivers are available to share what they’ve learned through the diagnostic process and important resources they use to navigate the disease.

Care Consultants Valued Almost as Highly as Healthcare Professionals

Nearly 70 percent of the caregivers surveyed said they would definitely use or probably use an in-person care consultant. Further, healthcare professionals and care consultants were ranked the top 2 most useful resources for caregivers. Care consultants help prepare caregivers for the changes and challenges ahead, including helping with decision-making support, crisis assistance and education on the issues families face every day. 

  • CMS to Cover Care Planning for People with Alzheimer’s: Help is on the way for individuals and families confronted with an Alzheimer’s diagnosis. The Centers for Medicare & Medicaid Services (CMS) finalized its decision recently to pay for cognitive and functional assessments and care planning for people living with Alzheimer’s disease and other cognitive impairments. This announcement comes after growing bipartisan support in Congress for the HOPE for Alzheimer’s Act, which has been a top legislative priority for the Association and the Alzheimer’s Impact Movement. It will go into effect in early 2017, and the Alzheimer’s Association will continue to take an active role in its successful implementation.
  • How to Find a Dementia Care Consultant: Call the Alzheimer's Association 24/7 Helpline, 1-800-272-3900, which provides confidential care consultation by master's level clinicians. Many local Alzheimer’s Association chapters also offer care consultations services in-person or over the phone.
  • Expert Interview: Ruth Drew on how to find a care consultant and what services they typically provide

About the Survey Methodology

The survey was conducted via phone and included 2,000 primary caregivers for someone diagnosed with dementia. Survey respondents were well-distributed across gender, race/ethnicity, location and annual household income. Adult children and other relatives or close friends made up more than 70 percent of the caregivers surveyed. The Boston Consulting Group conducted the survey on behalf of the Alzheimer’s Association. The complete caregiver survey can be found here.

Media Contact
Mike Lynch
Media phone line: 312-335-4078
Email: media@alz.org