Aging Advocate: Millennials Adapt to the Role of Alzheimer’s Caregivers
By Acanthus Fairley, LCSW; Natasha Burton, LMSW; and Linda Mockler, LMSW, MEd
Social Work Today
Vol. 21 No. 3 P. 28

According to the Centers for Disease Control and Prevention (CDC), nearly 80% of individuals with Alzheimer’s disease and related dementias are receiving in-home care. Given the aging population, this statistic may not be all that surprising. However, the public may fail to realize that these caregiving roles are increasingly being assumed by members of the millennial generation.

A 2019 national poll found that one-third of millennials expect to provide care for an aging family member or friend within the next five years. Members of this generation are currently between the ages of 25 and 40, having been born between the years of 1981 and 1996.

Some associate the millennial generation (as a whole) with such stereotypes as denial, recklessness, and evasiveness, all of which could suggest they are ill prepared for this undertaking. Conversely, others argue that millennials are uniquely positioned to advocate for change. Historically, they were the first generation to grow up with computers in the home, making them more inclined to integrate technology into their everyday lives. This proclivity to access information and resources is extremely beneficial when assuming the role of a caregiver.

Understandably, caring for someone with Alzheimer’s disease is demanding and may temporarily pull millennials out of the workforce or reduce the number of hours spent working or developing their careers. However, millennials have the advantage of having many years to save, invest, and accumulate wealth, along with being more likely to possess an advanced degree, which would allow for higher incomes to support this vast undertaking.

Millennials were found to rate happiness and friendships as more important than power and money. Additionally, a 2017 study evaluating young adults’ perceptions of end-of-life care found that 54% of millennials had already conversed with a family member about such a situation. This suggests a predilection for planning, which contradicts the notion that millennials would be quick to abandon responsibility and/or fail to plan. These are just a few of the protective factors that could support millennials as they transition into caregiving roles.

According to a recent AARP study, 23% of caregiving adults are millennials who are caring for a parent or grandparent with a long-term physical condition in a "moderate- to high-intensity care situation" for an average of 25 hours a week. Historically, familial caregiving was geared toward providing emotional support as well as coordinating and delivering long-term services and supports. According to the Journal of the American Society on Aging, focus has now expanded to include “... navigating the health care system, coordinating communications across multiple providers, and performing complex medical and nursing tasks in the home.”

This is a large undertaking that encapsulates time, energy, and resources. Where can this generation of caregivers look for psychoeducational support along their journey? The answer can be intergenerational support, geriatric professionals, and looking inward toward their own resilience.

Learning From History
The contextual knowledge of how to navigate the complexities of caregiving and practicing self-care is vast. Millennial caregivers, many of whom have immediate or extended family in the Baby Boom generation, can look toward the literature and narratives they have provided. Baby boomers, born between 1946 and 1964, are still the largest generation of caregivers, making up at least 38.5% of all U.S. caregivers. Compared with caregivers of previous generations, those born in this generation experienced role strains unlike any other: caring for their children, many of whom are Generation X (those born between 1965 and 1980); caring for their parents, many of whom are of the Greatest/Silent Generation (those born between 1928 and 1945); and working full time while straddling personal lives.

 In books such as Learning to Speak Alzheimer’s by Joanne Koenig Coste and The 36 Hour Day by Nancy L. Mace and Peter V. Rabins, the authors document their experiences as baby boomers. Millennial caregivers provide a similar level of care in terms of hours per week (40 or more) in addition to being more likely to be employed full-time.

Millennials have straddled life before the inception of technology and learned to navigate it. Having used rotary and pay phones prior to the first smartphone, and dial-up internet service prior to Wi-Fi, millennials lead the way for social revolution and innovation within the Information Age. Having the unique position of melding the past, present, and future, resilient millennials can play to their needs as caregivers.

Millennials are becoming the new wave of geriatric social workers, geriatricians, and neurologists. They are equipped to advocate for stronger social programs to support the exploding aging population and push for medical innovation to slow down the progression of dementia. Leaning inward to their strength of adaptation, they can be the biggest support in caregiving.

Taking Advantage of Technology
As millennials take on caregiving roles, there are many technological tools available to support their efforts. Technology is a part of everyday life for this generation, who likely are familiar with the many free apps available to caregivers, monitoring tools (home cameras, door alarms, tracking tools such as smart wrist bands and shoe inserts), telemedicine, tech-enabled pharmacy services, and online concierge services.

Connecting with others in similar situations is an important part of successful caregiving. Millennials can go online to find caregiver support groups, stores that provide materials for activities and safety devices, virtual activity programs for loved ones—the list is infinite. Social media is another important source of support and information.

Jennifer Levin, host of the podcast Millennial Caregivers: Voices You Should Hear, established a Facebook group called Caregiver Collective after she began caring for her father in her early 30s. More than 500 members from around the world, most under 40, have since joined the four-year-old group in search of community and practical advice.

This is particularly important during the pandemic, which has further complicated the challenges of caregiving and isolation. Being a caregiver can be a lonely experience; COVID-19 only exacerbated the situation. According to Levin, since the pandemic’s onset, members are attending the group’s online video chat in record numbers. A new Global Carer Well-Being Index from Embracing Carers reports that 20% of caregivers were new to caregiving during the pandemic and 60% of them were Generation Z (those born after 1996) or millennials.

 An online training program that provides information about a variety of caregiving disciplines through video tutorials, CareAcademy is another useful program millennial caregivers can use for support. Topics include fall prevention, dementia care, and elder abuse.

The Alzheimer’s Foundation of America also provides a number of different support services for caregivers, including a free monthly Care Connection webinar, a national helpline (866-232-8484) staffed by licensed social workers, telephone-based support groups, informational fact sheets, and daily virtual activity programming for individuals living with dementia (www.alzfdn.org/afatealroom).

Let’s Give Them Help
Aging and illness are part of the fabric of society. As time goes on, federal and state governments will have to meet the challenge of incorporating more supports and infrastructure for millennial caregivers. Workplaces will have to recognize the necessity of supporting caregiving employees. A number of states are already introducing legislation for paid family sick leave, an issue that will become increasingly important as the population ages. The CDC estimates that the number of people living with Alzheimer’s will nearly triple by 2060 to more than 14 million.

Despite the responsibilities, challenges, and nuances of caregiving, a recent study found that millennials are the most likely group to say caregiving was rewarding: 91% in the United States and 88% internationally. Fortunately for everyone, they are armed with the tools to be a strong caregiving generation.

— Natasha Burton, LMSW, is a part-time Alzheimer’s Foundation of America Helpline social worker who is trained in dementia care. She is also an outreach social worker with Physician Affiliate Group of New York Health & Research Foundation —  Teen Options to Prevent Pregnancy Program.

— Acanthus Fairley, LCSW, is a part-time Alzheimer’s Foundation of America Helpline social worker who also facilitates an adult child caregiver support group. Her research interests lay at the intersection of trauma, mental health, and aging. 

— Linda Mockler, LMSW, MEd, is an Alzheimer’s Foundation of America Helpline social worker. She is particularly focused on research and literature in the Alzheimer’s field as well as providing caregiver support.

Resources
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