Dementia Guide Expert

Transforming the Alzheimer's Experience with an App: Dementia Guide Expert

Background & Goal

According to Alzheimer’s Disease International, more than 46 million people worldwide have dementia. This number is estimated to increase to 131 million by 2050. In the US in 2017, an estimated 5.7 million Americans aged 65 and older were living with Alzheimer’s disease (AD). By 2050, the prevalence of AD in the US is expected to triple.

Though most Americans live without dementia, they often feel uninformed and fearful of the disease. One study found that 44% of Americans fear AD more than any other disease, including cancer, and 75% report not being knowledgeable about AD. Providing care for a family member with AD or a related dementia is not a role for which most are prepared, but one that they will likely have to play in the future. AD is a chronic condition, typically lasting 8 to 10 years, during which the needs of people with dementia (PWD)change necessitating different management, services, and required ongoing care coordination. Accessing services and resources is a daunting task, and family and caregivers often struggle to meet the changing needs of PWD.

There have been numerous calls for initiatives to create infrastructure, programs, and policies to meet the needs of PWD and their families, most notably the CDC’s Healthy Brain Initiative. Nearly all of these plans include public health recommendations and strategies for increasing public awareness and early detection and diagnosis of dementia.

While there is clearly national momentum toward creating dementia-friendly communities through education and awareness, dementia information and caregiver support are fragmented and provided through various sources, including primary care physicians and national organization websites. Many older adults are unable to navigate complex health websites and struggle with reconciling information from diverse sources. Research also indicates a need for more coordination of health and social care provision for older adults, including utilizing care pathway technologies and creating technologies designed to be user-friendly for older adults (e.g., touch screens that are more usable than keyboards for older adults with arthritic hands).

Program Description

The Dementia Guide Expert mobile app is a unique centralized resource where PWD and caregivers can find evidence-based expert information on what dementia is, types, contributing factors, risks, symptoms, stages, diagnosis, tests, treatment, management, communication techniques, and links to resources and support services. The Dementia Guide Expert mobile app thus serves as a unique resource that uses a dementia-positive approach to provide resources, tools, and interventions to support caregivers and care recipients as they confront the challenges of dementia.

The Dementia Guide Expert mobile app is free and user-friendly. It is currently available for download to iOS devices through the Apple App store and iTunes and to Android devices through Google Play.

Building on the success of the English version which had over 34,800 downloads/views in 2.5 years, and upon user request, the app content was recently translated into Spanish and is currently being translated into Korean. The 5-year goal (funded by HRSA) is to translate the app into the most popular global languages (one new language each year): Chinese (Mandarin), Hindi/Urdu, Arabic, Malay, and Russian. This will help in global adoption of the Dementia Guide Expert mobile app, increasing dementia awareness and providing the world population with skills to better understand and manage the challenges of dementia.

Ultimately, the Dementia Guide Expert mobile app has the potential to create a dementia-friendly community on a global scale, one that is informed and better prepared for the challenges of dementia care through increasing public understanding and empathy for PWD.

Evidence of Success

The “Test Flight” app released to 20 clinicians for beta testing found that 50% strongly agreed and 50% agreed the app provided valuable information, offered practical advice, provided valuable resources, and was useful for people with dementia and caregivers. 67% agreed and 33% strongly agreed the pictures enhanced their experience and the text was sufficiently large.

This initial usability and functionality testing with community-dwelling older adults and clinicians led to improvements in the design and presentation of the content. The app was refined, and Prototype 14 of the Dementia Guide Expert was launched in December 2017. Since its launch in December 2017, the app has been downloaded/viewed over 34,000 times in 12 countries (Australia, Brazil, Canada, China, Germany, Japan, Korea, New Zealand, Spain, Taiwan, UK, and US). As previously mentioned, the app is available in Spanish, “Guia Experta Sobre La Demencia,” and both the English and Spanish versions are available for free download on iOS and Android devices.

For More Information Contact:

Valerie Gruss, PhD, APRN, GNP-BC, FAAN

Principal Investigator, Director, and Creator
University of Illinois at Chicago, College of Nursing