In the United States, a small but mandatory payroll deduction for a public long-term care insurance program would go a long way toward preventing that meltdown. If everyone had long-term care insurance, Medicaid would cease to be the fallback long-term care insurance program for millions of older Americans. The federal government and the states would be released from the catastrophic burden of Medicaid spending for elder care; the system could focus again on its original, and much less costly, intention from the 1960s—to aid poor women and children.
As the boomers enter late old age—when, again, fifty percent of those over age 85 have Alzheimer’s disease—public long-term care insurance could mean the difference between government solvency and implosion.
Appendix I:
Long-Term Care in an Intentional Community
With long-term care insurance, Ben and I would be more likely to be able to continue to live at home in our intentional community if one or both of us became disabled. If one of us becomes the primary caregiver for the other, we will be able to afford some home care assistance to give the caregiver much needed respite. We know that, even though we live in community, our neighbors are too busy with their work and children to volunteer many hours of companionship, let alone offer hands-on care.
Even in elder cohousing, a relatively new kind of intentional community where residents are all 50 or older, few people are willing to offer daily hands-on assistance with activities of daily living (ADLs) such as bathing, dressing and toileting. In his book Senior Cohousing: A Community Approach to Independent Living, Charles Durrett writes about elder cohousing in Denmark, where it is well established, and in the United States, where it is growing in popularity. He says that “people will only give the type and amount of care that they feel like giving...Most residents just want to be neighbors, after all, not health aides.” Usually the help they are willing to give will fill the gap before family members can arrange additional help, and allow the person who needs assistance to live in their home longer than they could if they didn’t live in cohousing.
Ben and I expect that, like our neighbor Rita, if we need regular hands-on assistance, we will need to hire private aides. We hope that if others in our community need help with ADLs that we could share the cost. Durrett describes how some cohousing communities in Europe hire a resident nurse or nursing student to live in a studio apartment in their Common House. The nurse becomes a true member of the community, eating with the residents, sharing their celebrations and sorrows. When it comes time for a resident to need help, the hope would be that the nurse would treat them with true affection and respect. As long as we need help with at least two ADLs, or we need assistance or supervision because of a cognitive impairment, long-term care insurance might cover some of the cost of a shared nurse.
If either Ben or I—or both of us—must move to a facility off-site to get the care we need, good long-term care insurance coverage would protect us from impoverishment. We hope. Private long-term care insurance in the United States is a considerable gamble.
Appendix J:
Confronting the Epidemic at the National Level and Beyond
Research Funding
Along with early diagnosis, affordable care for those who have dementia, and more assistance for family caregivers, we need an immediate increase in research funding. According to the Alzheimer’s Association, “For every dollar the government spends on the costs of Alzheimer care, it invests less than a penny in research to find a cure.” In their May 2011 report Penny Wise, Pound Foolish: Fairness and Funding at the National Institute on Aging, the Alzheimer’s Foundation of America, a coalition of over 1,600 organizations, warns of a “substantial risk that geriatric researchers will move on to other areas of science with greater prospects of funding...If the NIA [the National Institute on Aging, part of NIH] funding is not significantly increased, we stand to lose a generation or more of young and emerging investigators in aging and Alzheimer’s disease.” The AFA quotes Sam Gandy, M.D., Ph.D., Professor of Neurology and Psychiatry, Mount Sinai Chair in Alzheimer’s Disease Research, and Associate Director, Mount Sinai Alzheimer’s Disease Research Center:
“We can no longer, in good conscience, recommend that our trainees plan for a career in Alzheimer’s research unless they can establish their first labs in China, Korea, Europe, Australia, or South America.”
In February 2012, the Obama administration announced an immediate increase in the federal budget of $50 million for Alzheimer’s research, with $80 million added for the fiscal year 2013 budget. An additional $26 million will help provide community support for family caregivers, improve the training of health care providers, and raise public awareness.
I’m excited by the funding for family caregivers and public awareness of the disease, but I doubt that this increase in research funding will make a difference. Many experts agree. Consider the fact that, in 2011, the federal government allotted only $450 million for Alzheimer’s research through the National Institutes of Health, compared to over $3 billion for HIV/AIDs, over $4 billion for heart and cardiovascular disease, and nearly $6 billion for cancer. An addition of $130 million over two years would bring the total for Alzheimer’s research to only $580 million—a paltry sum. Unless this imbalance is corrected—unless we agree as a nation to fund a wide spectrum of research, over many years, in hundreds of laboratories—we are unlikely to see a major breakthrough.
The National Plan to Address Alzheimer’s Disease
In May of 2012 the U.S. Department of Health and Human Services (HHS) released its first National Plan to Address Alzheimer’s Disease. Using “Alzheimer’s disease” as an umbrella term for all dementias, the Plan includes five main goals:
1) Prevent and effectively treat Alzheimer’s disease by 2025;
2) Optimize care quality and efficiency;
3) Expand supports for people with Alzheimer’s disease and their families;
4) Enhance public awareness and engagement; and
5) Track progress and drive improvement.
Although it’s a lengthy and complex plan, its main elements look promising. For example, the Plan supports the education of health care providers about services available for people with Alzheimer’s disease and their caregivers, so that patients and their families receive “counseling, support, or information about next steps.” HHS will work with the Centers for Medicare and Medicaid Services to promote smoother transitions between care settings. The Plan champions more support for people with dementia who face unique challenges, such as racial and ethnic minorities, people with Down’s syndrome (who almost always develop Alzheimer’s disease as they age), and people with early-onset Alzheimer’s disease. Offices for the Aging throughout the country will be encouraged to learn more about how caregivers can be connected with support services such as respite. And HHS will conduct a national survey to figure out why so many middle-aged people do not plan for long-term care.
I can see that one element of the National Plan falls short, however. While it calls for more training in dementia care for professionals such as physicians, nurses, social workers, and aides, it does not specify how many hours of training are ideal. I’m sure that both my mother and I would have felt less stress over the past seven years if every health care provider and professional caregiver we encountered had received at least a minimum number of hours of training in the specifics of dementia care. Currently, individual states may or may not require dementia education, and their regulations vary by industry (home care, adult day care, assisted living, nursing homes, hospitals, and hospice). Some states, for example, require absolutely no dementia education for staff in the dementia units of assisted living. The National Council of Certified Dementia Practitioners recommends a national standard of a minimum of 12 hours of initial dementia education for all health care professionals and front line staff in every industry, and then ongoing dementia education throughout the year. They also recommend that HHS study existing state regulations, and if HHS were to find
that some states require more than 12 hours of training for dementia education, NCCDP recommends that federal regulations be developed to match the highest level of training.
Pending Legislation
HOPE
The Health Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act, in both the Senate and the House of Representatives, would increase early diagnosis, and improve access to information, care and support. According to the Alzheimer’s Association, “Although Alzheimer’s disease is diagnosed correctly up to 90 percent of the time by physicians with specialized training, as many as half of individuals meeting specific diagnostics for dementia never receive a diagnosis—and some evidence suggests it could be as high as 80 percent. The absence of a formal diagnosis of Alzheimer’s deprives individuals of treatments and services that could help people and families facing Alzheimer’s by improving symptoms, prolonging independence, and reducing caregiver stress. A formal and documented diagnosis opens access to valuable supports and services.” The HOPE Act would also provide care planning visits with primary care physicians to discuss medical and community support services: “These valuable services help individuals with the disease and their caregivers better manage medications, engage in financial planning, and assess driving and safety issues in advance.” These are exactly the kinds of issues (minus, perhaps, the medication coordination) that my mother needed help with years ago. If Dr. Gavin had been encouraged by federal legislation to have had these discussions with my mother on a regular basis, perhaps Mom would have given him permission to talk to me about these issues before she could no longer live alone, and I could have helped her that much earlier.
THE BREAKTHROUGH ACT
A second pending piece of legislation, the Breakthrough Act—reintroduced into the House of Representatives in 2011—called for “a federal commitment to Alzheimer’s disease research to advance breakthrough treatments for people living with Alzheimer’s disease.” When I compared the original text of the 2009 version of the Act to the 2011 version, I found it discouraging that while the 2009 version called explicitly for an increase in Alzheimer’s research funding in the NIH to $2 billion (from the current $450 million), the 2011 version has back-pedaled, omitting any specific request for an increase in funds. According to the 2011 Act, “The medical and research communities have the ideas, the technology, and the will, but need the Federal Government to commit to an innovative research approach, to find breakthroughs that will provide significant returns on investment and will save millions of lives.”
Unfortunately, this version includes no dollar amount to support an “innovative research approach.” It requires only that the NIH come up with budget estimates to carry out each of its recommended actions, “without regard to the probability that such amounts...will be appropriated.”
In October 2011, the Alzheimer’s Foundation of America published a bold report extolling the United States to catch up with the seven countries that already have national plans in place for Alzheimer’s research, treatment, and support services, and to significantly increase our research funding. AFA played a large role in the passage of NAPA, and members serve on the new federal Advisory Council on Alzheimer’s Research, Care, and Services.
The AFA also supports an increase in funding for the Cures Accelerations Network at the NIH, which would help reduce the delay—now an average of fourteen years—between the research of drugs and treatments and Food and Drug Administration approval. They recommend a substantial increase in funding not just for a cure for Alzheimer’s disease, but for clinical research on earlier diagnosis and prevention, “safety issues; non-pharmacological behavioral interventions; end-of-life care; and support and dementia care training for family caregivers of all ages and ethnic backgrounds, clinicians—including primary care physicians, and direct care employees.”
All of these research topics would have benefited both my mother and myself.
In October, masses of people in Canberra, Australia, took to the streets and marched on their capital, demanding more support for Alzheimer’s research. In November, the Alzheimer’s Association published a summary of the concerns of over 43,000 Americans affected by the disease. As part of the National Alzheimer’s Project Act, 132 public input sessions over four months gathered comments and pleas from people across the country—people living with Alzheimer’s, caregivers, researchers, health care providers, elder care professionals, community leaders, and others.
In his introduction to this report, Harry Johns, President and CEO of the Alzheimer’s Association, writes, “We need a transformational plan. We need it urgently. It’s time to roll up our sleeves and get it done.”
I couldn’t agree more.
Resources
For further information and support. These are some of my favorite books on dementia and caregiving, reports on dementia research and public policy, and organizations and Web sites supporting caregivers, but it is by no means an exhaustive list. For an annotated list of resources, please visit the Web site for this book, www.insidedementia.com.
BOOKS
Basting, Anne Davis. Forget Memory: Creating Better Lives for People with Dementia. Baltimore, MD: The Johns Hopkins University Press, 2009.
Bell, Virginia, and David Troxel. The Best Friends Approach to Alzheimer’s Care. Baltimore, MD: Health Professions Press, 2003.
Berman, Claire. Caring for Yourself While Caring for Your Aging Parents: How to Help, How to Survive. New York: Owl Books, 2005.
Borrie, Cathie. The Long Hello: The Other Side of Alzheimer’s. Vancouver, B.C.: Nightwing Press, 2010.
Boss, Pauline, Ph.D. Loving Someone Who Has Dementia: How to Find Hope While Coping with Stress and Grief. San Francisco, CA: Jossey-Bass, 2011.
Bryden, Christine. Dancing with Dementia: My Story of Living Positively with Dementia. Philadelphia: Jessica Kingsley Publishers, 2005.
Caposella, Cappy, and Sheila Warnock. Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill. New York: Fireside, 2004.
Cohen, Elizabeth. The House on Beartown Road: A Memoir of Learning and Forgetting. New York: Random House, 2003.
Coste, Joanne Koenig. Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing with the Disease. New York: First Mariner Books, 2003.
DeBaggio, Thomas. Losing My Mind: An Intimate Look at Life with Alzheimer’s. New York: The Free Press, 2002.
Geist, Mary Ellen. Measure of the Heart: A Father’s Alzheimer’s, a Daughter’s Return. New York: Springboard Press, 2008.
Genova, Lisa. Still Alice. New York: Pocket Books, 2009.
Gillies, Andrea. Keeper: One House, Three Generations, and a Journey into Alzheimer’s. New York: Broadway Paperbacks, 2009.
Gleckman, Howard. Caring for Our Parents: Inspiring Stories of Families Seeking New Solutions to America’s Most Urgent Health Crisis. New York: St. Martin’s Press, 2009.
Goldman, Connie. The Gifts of Caregiving: Stories of Hardship, Hope and Healing. Minneapolis, MN: Fairview Press, 2002.
Greenblat, Cathy Stein. Alive with Alzheimer’s. Chicago: The University of Chicago Press, 2004.
—————. Love, Loss and Laughter: Seeing Alzheimer’s Differently. Guilford, CT: Lyons Press, 2012.
Gross, Jane. A Bittersweet Season: Caring for Our Aging Parents—and Ourselves. New York: Alfred A. Knopf, 2011.
Hadas, Rachel. Strange Relation: A Memoir of Marriage, Dementia, and Poetry. Philadelphia, PA: Paul Dry Books, 2011.
Jacobs, Barry J., Psy.D. The Emotional Survival Guide for Caregivers—Looking After Yourself and Your Family While Helping an Aging Parent. New York: Guilford Press, 2006.
Kane, Robert L., MD. The Good Caregiver: A One-of-a-Kind Compassionate Resource for Anyone Caring for an Aging Loved One. New York: Penguin Group, 2011.
Kane, Robert L., MD, and Joan C. West. It Shouldn’t Be This Way: The Failure of Long-Term Care. Nashville, TN: Vanderbilt University Press, 2005.
Keith, Cindy. Love, Laug
hter and Mayhem: Caregiver Survival Manual for Living with A Person with Dementia. Port Charlotte, FL: BookLocker, 2010.
Kessler, Lauren. Dancing with Rose: Finding Life in the Land of Alzheimer’s. New York: Penguin Group, 2007.
Kind, Viki. The Caregiver’s Path to Compassionate Decision-Making: Making Choices for Those Who Can’t. Austin, TX: Greenleaf Book Group, 2010.
LaPlante, Alice. Turn of Mind. New York: Atlantic Monthly Press, 2011.
Levine, Judith. Do You Remember Me? A Father, a Daughter, and a Search for the Self. New York: Free Press, 2004.
Lokvig, Jytte. Alzheimer’s A to Z: Secrets of Successful Caregiving. Santa Fe, NM: Endless Circle Press, 2003.
Lokvig, Jytte, and John Becker. Alzheimer’s A to Z: A Quick-Reference Guide. Oakland, CA: New Harbinger Publications, 2004.
Loverde, Joy. The Complete Eldercare Planner, Revised and Updated Edition: Where to Start, Which Questions to Ask, and How to Find Help. New York: Three Rivers Press, 2009.
Mace, Nancy L., and Peter V. Rabins. The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life. New York: Warner Books, 2006.
Marriott, Hugh. The Selfish Pig’s Guide to Caring: How to Cope with the Emotional and Practical Aspects of Caring for Someone. London: Piatkus, 2003.
McCullough, Dennis. My Mother, Your Mother: Embracing “Slow Medicine,” the Compassionate Approach to Caring for Your Aging Loved Ones. New York: HarperCollins, 2008.
McGowin, Diana Friel. Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s. New York: Dell Publishing, 1994.
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