According to a new report released by #UsAgainstAlzheimer’s and the #University of South California’s Edward R. Roybal Institute on Aging in December 2017, #Millennials and Dementia Caregiving in the United States, one out of six millennial caregivers cares for someone with Alzheimer’s disease or other dementia, and the need for care is on rise.
The Youth Against Alzheimer’s Coalition formed to position Alzheimer’s as an urgent economic and public health issue impacting families across generations. With the prevalence of Alzheimer’s disease and other dementias expected to reach nearly 16 million in the U.S. by 2050 from 5 million today, more millennials and young Americans are expected to face caregiving responsibilities in the future.
The report contains a first-of-its-kind analysis and information about: (1) the characteristics of millennials caring for someone with Alzheimer’s disease or other dementias, (2) the caregiving activities millennials perform and the burden they experience through caregiving, and (3) how millennial caregiving activities interfere with their workforce participation. The report also makes policy and programmatic recommendations for addressing these challenges.
Alzheimer’s, the most common form of dementia, is the only disease in the top ten cause of death in the U.S. with no cure, no means of prevention, and no disease-modifying treatments. It is always fatal and individuals with the disease typically live for years or even decades. Alzheimer’s and other dementias are characterized by a profound deterioration in memory, language and communication abilities, problem-solving capabilities, and other aspects of cognition that affect a person’s ability to perform everyday activities.
According to Dr. Maria Aranda, associate professor and interim executive director at the USC Edward R. Roybal Institute on Aging–“Caregiving to family members with dementia can approximate a full-time job. Providing information, services, and supports to millennial caregivers is a societal investment with the potential of delaying family burdens and healthcare costs in the future.”
Key Findings of the Report
• Generational Status. About one out of six millennial caregivers is caring for someone with dementia, with an average age of 27 years.
• Gender. More female (53%) than male (47%) millennials provided care for someone living with Alzheimer’s disease or other dementia
• Sole caregiver. Roughly 42% of millennial dementia caregivers are sole caregivers and the overwhelming majority (79%) reported that accessing affordable outside help was very difficult.
• Travel and transportation. Most millennial dementia caregivers (84%) do not live in the same household with their care recipient/partner, and 16% had to travel more than an hour to provide care.
• Caregiving activities. The most common caregiving activities for millennial dementia caregivers includes helping with transportation (79%), grocery shopping/shopping for other items (76%), and communicating with health care
• Emotional distress. Millennial dementia caregivers feel emotional distress (79%) was a major caregiving burden and wanted more help to deal with this hardship.
• Interference with work. About one out of two millennial dementia caregivers stated that caregiving interfered with work, and 33% reported severe interference with work (e.g., cutting back hours, losing job benefits, being fired).
“As someone deeply affected by Alzheimer’s disease, the worst parts of my journey were the years that I didn’t talk about it,” said Lauren Miller Rogen, co-founder of Hilarity for Charity. “Young caregivers face isolation and emotional distress at alarming rates and we must talk about it and do more to engage and support young people in this fight.”
Policy and Programming Recommendations
The report outlines solutions to address the challenges faced by young adults who act as caregivers for individuals living with Alzheimer’s or other dementias, including:
• Improving transportation solutions by developing in-home medical services for the patient and telemedicine options, partnerships between share-riding providers and medical systems, and piloting of autonomous cars to connect caregivers and care partners to medical and social services.
• Increasing access to information through the development of tailored training programs and support groups that account for the cultural and age-specific needs of millennials. Develop psychosocial and emotional support interventions that address the unique challenges and needs of younger caregivers.
• Enhance communication with health care providers by developing online communication platforms, technologies, and tools that help young caregivers track symptoms, medications, and execute care strategies for their care partners.
• Introducing flexible work arrangements, including flexible work hours and telecommuting to make alternative work arrangements more widely available, including at the beginning of employees’ careers. Expanding paid leave policies to support family caregiving is another critical step.
Launch of #Youth Movement Against Alzheimer’s
The complex challenges of caregiving for someone with dementia creates a compelling need for greater support for this community. To answer this charge UsAgainstAlzheimer’s and The Youth Movement Against Alzheimer’s is launching the #Youth Against Alzheimer’s Coalition (YAAC) to position Alzheimer’s as an urgent economic and public health issue impacting families across generations by mobilizing young people and youth-serving
organizations through storytelling, advocacy, and coalition building.
YAAC founding members include:
• Active Schools
• Generations United
• Hilarity for Charity
• National Human Services Assembly/National Collaboration for Youth
• The National Youth Leadership Council
• Purple Orchard
• Undergraduate Student Association Council of the University of California Los Angeles (UCLA)
• University of Pittsburg Student Government Board
• Youth on Board
In this December 2017 report, millennials are defined as the generation of young adults born from 1980 to 1998. At the time of the initial data collection on which this report was based, millennial caregivers were defined as persons between the ages of 18 and 34 years. The report analyzes data from the nationally representative study conducted by the #National Alliance for Caregiving and #AARP, #Caregiving in the U.S. 2015,