Caregivers are indispensable in helping Alzheimer’s patients to manage their conditions. In the United States alone in 2019, there were an estimated 16.3 million unpaid caregivers (friends and family) of people living with Alzheimer’s disease, which cost an estimated $244 billion in unpaid care (together with an additional $305 billion in the costs of Alzheimer’s care paid by Medicare, Medicaid, private insurers, and out-of-pocket). Yet too often their critical role goes unsung.

Greg O’Brien, author of “On Pluto: Inside the Mind of Alzheimer’s”

In his powerful and poignant memoir, “On Pluto: Inside the Mind of Alzheimer’s,” journalist Greg O’Brien provides readers with a gift–the opportunity to see his deeply personal experience with Alzheimer’s disease through his eyes and those caregivers who most closely help him manage his condition: his family. “When one in the family has Alzheimer’s,” says O’Brien, “the entire family suffers from it.” His voice is both fierce and courageous as he chronicles the progress of his encounter with early-onset Alzheimer’s disease, a condition that also affected his mother.

“Those with early-onset,” he writes, “with an acuity of what’s to come, hold a collective breath, awaiting progressions of the loss.” Later, he observes sharply, “I have a formidable enemy—my mind. It used to be my best friend. I don’t see any chance now for reconciliation.”

O’Brien’s narrative is both arresting and instructive. Perhaps because of the stigma that still causes many to deny the impact of Alzheimer’s disease and other dementias on our friends and family, collectively we don’t understand the human toll of this disease—“the terrifying, disconnected, debilitating, hostile nature” of the disease, as O’Brien’s wife, Mary Catherine McGeorge O’Brien, describes it. People living with Alzheimer’s disease all have differing needs. As their conditions progress from mild cognitive impairment to serious impairment of their cognitive function, their ability to manage activities of daily life deteriorates variably. And the needs of individuals with Alzheimer’s are as varied as the roles that their caregivers must take on.

Greg O’Brien and his family

These caregivers help Alzheimer’s patients at different stages of the illness with a wide range of activities—bathing, dressing, diet and nutrition, paying bills, shopping, transportation, managing their health, coordinating their care, providing emotional support, and helping them to maintain social interactions—yet the emotional stress that caregiving imposes on loved ones and friends is underestimated and often unaddressed. The burden of Alzheimer’s falls disproportionately on women—not only are two-thirds of those living with the disease women, but also an estimated three-fifths of those who are unpaid caregivers.

As Mary Catherine McGeorge O’Brien notes in “On Pluto,” when she began to care for her husband Greg, “I had no sense of where to turn for help, support, or even how to express the diagnosis with family, friends or co-workers. I was lost and crept further inward. There is no single handbook one can read to prepare; each journey is different, each course of the disease takes different, meandering turns—no two are alike, the experts will tell you, an observation that is clearly numbing in so many ways.”

Another aspect of caregiving for Alzheimer’s disease that is becoming increasingly obvious is the burden for the “sandwich generation,” children of aging parents who themselves have children; estimates suggest that as many as one-fourth of all unpaid caregivers are in this situation. They experience the challenges of being in the middle, providing care to both their children and their parent living with dementia. And there is also a growing number of young caregivers, caring for a parent or other relative while juggling their own jobs, relationships, and life in general.

Kamaria Moore-Hollis

Kamaria Moore-Hollis, a caregiver in her early 30s from Weymouth, Mass., is one: in telling her story to Megan Thielking of STAT in November 2019, she likened the situation to “the ‘child is the parent relationship now’—which has its own challenges.” Moore-Hollis also shared that she finds it easier to help her mother with activities of daily living—like dealing with paperwork, finances, or medicines–than the emotional side of the caregiving relationship, which can be frustrating for both of them.

A 2017 survey by UsAgainst Alzheimer’s found that 80% of young Alzheimer’s caregivers said it was difficult to get affordable help. Moore-Hollis’ experience has also shown that it is difficult to get the support she needs: she was the only person of color in the support group to which she was referred, and they often discussed issues like coordinating in-home care, which were irrelevant to her mother’s needs because they simply couldn’t afford to hire outside help. Caring for a mother with Alzheimer’s disease, says Moore-Hollis “is still super, super hard—people should know that.”

As the experiences of the Moore-Hollis and O’Brien families show, different communities approach caregiving in different ways. Planning necessary support for caregivers must take these social, cultural, and economic differences into account to ensure appropriate care is available to individuals and families whatever their racial, ethnic, or socioeconomic status.

Kamara Moore-Harris and her mother, Mary

Although the patient journey takes many paths, there is a shared experience for caregivers. As Brendan McGeorge O’Brien, Greg O’Brien’s son, says in “On Pluto”, “The torment of Alzheimer’s doesn’t start in a nursing home … instead, it’s a tireless journey with no predictable direction, and it commences long before one is prepared to embark.” As Alzheimer’s disease becomes more prevalent with aging populations (the number of people living with Alzheimer’s in the United States is expected to grow to 13.8 million by 2050), society needs to pay more attention to the critical roles of caregivers as members of the teams helping individuals and families navigate their Alzheimer’s journeys.

For more information:

Greg O’Brien, On Pluto: Inside the Mind of Alzheimer’s (Brewster, MA: Codfish Press, 2018)

A Place Called Pluto, a documentary film by Steven James, www.livingwithalz.org

Alzheimer’s Association. 2020 Alzheimer’s Disease Facts and Figures, https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf 

Megan Thielking, “For millennial caregivers, becoming the “parent for a parent” with Alzheimer’s comes with agonizing challenges,” STAT News, November 4, 2019. https://www.statnews.com/2019/11/04/millennial-caregivers-agonizing-challenges/

USAgainstAlzheimer’s: www.usagainstalzheimers.org

Alzheimer’s Association: www.alz.org

If you are caring for someone living with Alzheimer’s disease, some helpful sources to find caregiving resources include the Alzheimer’s Association and its local chapters, https://www.alz.org/help-support/caregiving; and the National Association of Area Agencies on Aging, which has a resource locator on its website: https://www.n4a.org/