In the ten long years that Broadway’s Spring Awakening star Jonathan Groff watched his grandmother decline and die from Alzheimer’s, the young man was struck with admiration at his mother’s tender care for her. “It was amazing to see my mom’s patience with my grandmother,” he said, “her ability to take things day by day, her sense of humor and the way she honored my grandmother and her life. It was a very moving time,” the 23-year-old Groff said, making time from filming director Ang Lee’s Taking Woodstock to talk to me about his experience with Alzheimer’s.

Twenty-seven-year-old Meghann McKale also witnessed her mother’s constant and loving care for her mother as Meghann’s grandma became confused, stopped recognizing her, and gradually lost control of her bodily functions. Like Groff , McKale admired her mother tremendously. But she had another powerful response as well. “Seeing my Mom interact with my grandma as a non-person all those years,” she said, “I was thinking about me with my mother. How would I handle that? It’s just a nightmare.”

McKale, now a membership officer at the Metropolitan Museum of Art and President of the Junior Committee of the Alzheimer’s Association, New York City Chapter, says she worries about this possibility all the time. No one can predict whether her mother will get Alzheimer’s (although having a close family member with the disease increases the likelihood). Yet unless a way is found to prevent, effectively treat, or cure the disease, Meghann’s nightmare will come true — if not for her, then for millions of others in her generation. In their own horror-movie lingo, the message of Meghann’s experience is: Be scared. Be very, very scared.

“If we don’t cure Alzheimer’s,” said Lou-Ellen Barkan, Chapter President & CEO, “their parents will be the great wave of Alzheimer’s. These young people are the ones who will bear the burden of the coming epidemic. It is they who will be caring for their parents — the ten million Baby Boomers who are projected to get Alzheimer’s or another dementia in their lifetime. In New York City alone,” Barkan warned, “by the year 2050, one of every five New Yorkers will either have Alzheimer’s disease or be caring for someone who does.”

The burden for today’s young people will be staggering, since it is families who provide 70% of Alzheimer’s care. On a personal level, these young adults may be on-call constantly as caregivers, even forced to give up their jobs to provide care. Many will have to balance the demands of young children with the urgent needs of their failing parents. Even now before the tidal wave of Boomers’ Alzheimer’s hits, almost twenty percent of dementia caregivers are under age 35. Some still in their twenties are already primary caregivers for parents with dementia, risking the high levels of stress and depression that many caregivers experience.

Until her father died from Parkinson’s disease in 2002 and her mother from Alzheimer’s in 2004, 32-year old Tricia Amy, an executive recruiter, was the primary caregiver for both her parents. Working at a high-pressure job in Manhattan, she hired and supervised round-the-clock care and spent weekends at her parents’ home in Westchester County helping with feeding and hygiene, among a multitude of tasks. Emergencies were frequent, forcing her to miss work. Most upsetting, though, she said, was seeing her sweet mother turn into an agitated angry person, a personality change that Alzheimer’s can cause. “We had to lock the door from the inside,” Amy said. “If Mom saw a forest fi re on the television news, she might open the window and scream, ‘Fire!’”

Fortunately, Amy’s parents had enough money for her to hire 24-hour help. But most families do not. In the coming years, these children of the Baby Boomers will be caught in the crisis of a society vastly unprepared for what Barkan calls “the greatest health care crisis of the 21st Century.” Looking ahead only a few years, the NYC Chapter’s CEO sees a potential shortage of every vital resource, including nursing home and hospital beds and trained health care workers. She foresees the devastating consequences for this next generation of today’s infl exible family leave policies and inadequate insurance coverage for caregiving needs.

These are dilemmas today’s caregivers, young and old, face daily. If, for example, a caregiving daughter spends down or transfers all her mother’s resources, her mom can get into a nursing home funded by Medicaid, and public assistance will cover the expenses. But, in many states, if this daughter tries to keep her mother in the home where she has lived for many years, Medicaid will not pay for her care. (Medicaid will pay for up to 24 hours of home care services based on medical need in NYC.) This Catch-22 forces many caregivers out of the workforce. They end up on public assistance, no longer paying taxes. Nobody wins.

“The system is broken,” Barkan laments. “Some young people even have to drop out of college to care for a parent with Alzheimer’s. The ramifi cations can be devastating.”

Liz Nickerson, 35, a clothing designer and another Junior Committee member, witnessed her father’s struggle to care for her mother, who died of early-onset Alzheimer’s in 2007 at the age of 60. To afford the $10,000 a month for her nursing home, her dad continued to work even after a quadruple-bypass operation at age 60. “He was so stressed from his job and taking care of her that his health was at risk,” Nickerson said, “but he couldn’t afford to retire.”

Nickerson was unable to assist her father with money, but she helped in other ways. For example, she did research for him, attending every one of the Chapter’s educational meetings — on finances, for example, patient care, and selecting a nursing home. She also persuaded her father to attend an Alzheimer’s Association caregiver support group. “He said it was the best thing he ever did,” she reports.

Dementia’s toll on families is greater and more complex than can be measured in the 8.4 billion hours of care family members devote annually to a dementia suff erer (according to 2007 figures) and the approximately 33% that experience depression. In researching Twilight of the Family, my upcoming book on sibling dynamics over parents’ aging, I interviewed many people who had a parent suff ering from Alzheimer’s. These adult children coped with the intense emotional responses any parent’s decline awakens in their children: fear of mortality, heightened yearning for a parent’s love and approval, and reawakened sibling rivalries. But the children of Alzheimer’s sufferers were also beset by the special psychological toll that dementia takes on family dynamics.

The length of the disease and the overwhelming burdens of caregiving make working together as a family essential. But dementia can wreak havoc on family unity. As family members deal with the gradual loss of the person they love, each one asks internally, is my loved one still present — or gone? To resolve this painful ambiguity, said family therapist Pauline Boss, author of Ambiguous Loss: Learning to Live with Unresolved Grief, family members often decide arbitrarily in opposite directions. Many feel a need to grieve yet feel guilty about grieving before their parent’s death. Among adult siblings, misunderstandings, hurt, and anger can result, frustrating the family’s ability to cooperate on care. These are just some of the emotional issues that can stress families as they cope with the massive issues of Alzheimer’s care.

Many of the Chapter’s services — the 24-hour Helpline, care consultation services, caregiver support groups and other off erings — help families through these difficult issues. Additional services — MedicAlert® + Alzheimer’s Association Safe Return®, educational meetings, and the family caregiver training series and more — provide practical assistance and guidance with the disease and its consequences. These services are invaluable. Nevertheless, to avoid the nightmare scenario that looms over this current young generation, funding research for a cure is the most critical priority.

Although many new treatments are currently receiving clinical trials, said Dr. Sam Gandy, Mount Sinai Professor of Alzheimer’s Disease Research, at the 21st Annual Chapter Meeting in September, “I don’t see anything dramatic to modify the disease coming out in the next fi veto- ten years.” The Alzheimer’s Association, the largest private contributor to research on the disease, has funded $220 million in research grants since 1982. Yet only the federal government can fund research on the scale that it is needed. That’s why the Alzheimer’s Association is advocating for a $1 billion funding goal for the NIH’s Alzheimer’s disease research.

In the last five years government spending on research has not increased; it has remained flat, not even keeping up with inflation. In 2008, only 20% of eligible NIH research projects were funded. Freshly minted scientists applying for their first grants had a less than 10% success rate. “We’re losing a generation of scientists,” lamented Dr. Gandy. Academic research is particularly important, he explained, because drug companies do not share their findings, limiting the ability of scientists in the field to make new breakthroughs. “You need a pipeline of new scientists coming along,” Dr. Gandy said. “If you don’t have the manpower coming in, then nothing is coming out.”

Funding this research is critical not just to Alzheimer’s sufferers and their families, experts say, but to society at large. Government spending for Alzheimer’s, which is already costing billions in Medicare and Medicaid expenses, can only skyrocket once Boomers begin getting the disease in epidemic numbers. “Medicare spending could reach $160 billion in 2010,” said Dr. Elemer Piros, Senior Biotechnology Analyst for Rodman & Renshaw, at September’s Annual Chapter Meeting.

Medicare, which spent $91 billion in 2005 on people with Alzheimer’s and other dementias, is projected by the Alzheimer’s Association to double its spending to $189 billion by 2015. In addition, spending by Medicaid is one of the fastest growing parts of state budgets and is close to the breaking point in many states. Yet within five years of a discovery that would delay the onset or slow the progression of the disease, the Alzheimer’s Association projects, Medicare and Medicaid spending would drop by more than $60 billion.

“As policy-makers address health care reform and universal health care,” said Ann Berson, Director of Public Policy for the New York City Chapter, “how will longterm care come out? It’s critical that we address this.”

Young people are not waiting for their elders to act. Increasingly, as greater numbers of twenty- and thirty-somethings are touched by the disease, they are taking action. The Chapter’s Junior Committee has been growing. When Meghann McKale joined in 2002, the group’s e-mail listserve had 60 names. Now it boasts 150. These Junior Committee members raise money for research and do even more; they are forceful advocates for change. McKale was one of several Junior Committee members who lobbied Congressmen Charlie Rangel and Jerry Nadler, among others, when she attended the Alzheimer’s Association Public Policy Forum in the nation’s capital in 2007 and 2008. “What I say,” she noted, “is not as important as my presence. In the last two years as a substantial contingent of young people have gone on these visits, the congressman sees his future constituents and future voters there — and interested in this particular concern. We’re showing that Alzheimer’s is not just an old person’s disease, that it affects everyone.”

“Right now is a great moment,” McKale said, “because young people are becoming conscious in so many ways, the green movement, for example. You see it with this election, for example, with the candidates advocating for change. Young people are concerned about their own futures and the future of the world they live in. And Alzheimer’s is a critical part of that.”

		Francine Russo is a former Time magazine columnist and reporter on Boomer issues. Her book on sibling dynamics over aging parents, Twilight of the Family, is due out from Bantam in 2009.   Previous | Next