Four Kinds of People: The Universal Experience of Caregiving

I recently attended two symposiums on elder care. One was in the wilds of Maine, and the room was heavily laden with plaid shirts, fleece, and sensible shoes. The second was in New York City and attended by sleek, well heeled Manhattanites. The events and the attendees could not have been more different, except for the common experience of caregiving. At both events, people shared their personal experiences of caring for a loved one. In those moments, I realized that we are all united at some time in our lives by one of the most challenging and precious responsibilities that we ever will face: caregiving. The deeply human condition of caregiving inspired me to explore the subject further. In this blog post, I share some of what I learned about caregiving and offer recommendations to improve care for the elderly and support for the workers and family members who provide this vital care.

As the global elder population grows, so does the need for caregivers.

The growing elder population has created an increasing need for caregivers globally. The rates of dementia and other chronic illnesses rise as populations live longer. In the US alone, ten thousand baby boomers turn sixty five each day.[ref]AARP[/ref] The global elderly population is increasing by eight million per year and is projected to increase by twenty four million per year beginning in the year 2030. Today, there are thirteen million caregivers in America. That number is expected to quadruple to meet the needs of the growing population with dementia.[ref]Gillespie, L. (2015). Advocate for Alzheimer’s research says aging baby boomers face big threat from disease. Kaiser Health News.[/ref]

The acute dearth of caregivers is a global problem that affects health systems, communities, and families. Some governments are embracing immigration to create a supply of caregivers. The Japanese parliament recently passed a law allowing ten year work visas for a special class of workers in selected economic zones that include Tokyo, Osaka, and Kawasaki. The first three thousand caregivers have already been trained. In the United Kingdom, nearly one in every five care workers is foreign born.[ref]Franklin, B. & Brancati, (2015). Moved to care: the impact of migration on the adult social care workforce. International Longevity Center UK and Independent Age.[/ref] For many countries, introducing foreign workers as caregivers can be a sensitive issue, both socially and politically, but the need will inevitably motivate adaptation.

Countries vary in the ratio of informal caregivers to formal caregivers, due to cultural norms. In lower and middle income countries, two thirds of those with dementia live with family or extended multigenerational family.[ref]WHO Dementia: a public health priority, 2012[/ref] In Europe, thirty percent of those fifty five years and older live alone.[ref]KPMG (2013). An Uncertain Age. Reimagining long term care in the 21st century, p.11.[/ref] Fewer children are able to care for their elders, due to an array of factors, including lower birthrates. In some countries, evolution in female equality has enabled women to participate in the workforce and move from the rural family home to the city. In these countries, parents are experiencing a lack of care in their older years. As a result, there is a shift in the burden of care from private or informal care to public or formal care.

How can our spending priorities be such that those caring for our precious loved ones are not paid a living wage?

One reason for the lack of caregivers is that caregivers are underpaid for their stressful, physically demanding, and meaningful work. The median caregiver’s wage in the United States is less than eleven dollars per hour. The national average wage is more than twenty one dollars per hour.[ref]Occupational Employment and Wages, (2014). United States Department of Labor, Bureau of Labor Statistics.[/ref]

Caregivers are often not given benefits or paid vacation. These factors contribute to the high turnover rate of the caregiving workforce. Those in need of care are all to often forced to hire unskilled and unregulated help, putting loved ones at risk for neglect or even abuse.

San Francisco based company Honor has creatively used technology to make caregivers’ jobs more efficient. Honor also pays its caregivers more than the national average.

New York City is currently engaged in a discussion around raising the hourly wage for fast food workers. If this happens, it is likely that many home health workers will leave their jobs for a better wage. Lack of adequate pay for caregivers is a serious issue that needs to be addressed. We need policy changes to ensure that caregivers are paid a living wage and receive benefits, including respite and paid vacation. Caregivers also need access to proper support and training.

The Care Burden of Dementia

Caring for someone with dementia can be stressful and overwhelming. Dementia is the number one cause of dependency and disability for the elderly.[ref]Integrated Model of Dementia Care. Champlain 2020: Making Choices Matter[/ref][ref]Dementia A Public Health Priority, World Health Organization, 2012[/ref] The care needs for a person with dementia are unique and often challenging. Anxiety, paranoia, memory loss, and confusion, along with other chronic conditions that often accompany dementia, place a difficult emotional and physical burden on the caregiver. Dementia care demands increase dramatically as the disease progresses.

Informal caregivers are unpaid and are often family, friends, and neighbors. In 2013, informal caregivers in the United States provided 17.7 billion hours of unpaid care for dementia patients.[ref]Alzheimer’s Association, 2014 Alzheimer’s Disease Facts and Figures[/ref] The Alzheimer’s Association estimates the value of informal care to be 220.2 billion dollars annually. The annual global costs of informal care varies from 651 billion dollars for minor help with activities of daily living to more than one billion dollars for all activities of daily living and supervision.[ref]Alzheimer’s Disease International World Alzheimer’s Report 2015. The global impact of dementia. Analysis of prevalence, incidence, cost & trends.[/ref]

Caregiving costs and burden vary by gender, both for caregivers and those receiving care. In America, more than sixty percent of caregivers for dementia patients are women. Twenty one percent of those women are sixty five years or older.[ref]Alzheimer’s Association, 2014 Alzheimer’s Disease Facts and Figures[/ref] The economic burden of advanced dementia for women is estimated to be around six times that of a man.[ref]Yang, Z & Levey, A. (2015). Gender Differences: A lifetime analysis of the economic burden of Alzheimer’s Disease. Woman’s Health Issues 25(5):436-440.[/ref] This is a result of two cost factors. Women are more likely to develop advanced dementia. Women are more likely than men to care for someone with dementia, therefore incurring higher informal care costs when they themselves fall ill.

Informal caregivers of those with dementia suffer more physical and mental problems, along with higher rates of premature mortality than caregivers of those with other diseases.[ref]Chmielewski, E. (2014). Perkins Eastman. Excellence in design: Optimal living space for people with Alzheimer’s disease and related dementias.[/ref] Surveys show that seventy percent of dementia caregivers experience stress. Forty percent suffer from depression.[ref]Huckle, P.L. (1994). Families and dementia. International Journal of Geriatric Psychiatry, 9(9), 735-741[/ref]Sometimes caregivers or family members are so stressed, frustrated, and depressed that they resort to elder abuse.[ref]Alzheimer’, Alzheimer’s and Dementia Caregiver Center.[/ref]

Caregiver support interventions can lower the cost burden of dementia and elder care at home.

The New York University Caregiver Intervention (NYUCI) began as a trial study, from 1987-2009. The study tested whether support and counseling helped the 406 participants who were caregiving for a spouse with dementia. Participants received six individual and family counseling sessions over a specific period of time. After the six counseling sessions were complete, participants attended regular support groups. On demand phone counseling was also available to participants and their family members. Comprehensive assessments were taken from the caregivers. Caregivers who participated in the program were able to reside in their home and provide care for their spouse for an average of 557 days longer than those in the control group.[ref]Mittelman, M.S., Haley, W.E., Clay, O.J., & Roth, D.I. (2006). Improving caregiver well-being delays nursing home placement of patients with Alzheimer’s disease. Neurology, 67(9), 1592-9.[/ref] Participating caregivers experienced a decrease in depressive symptoms and stress.[ref]Mittelman, M.S., Ferris, S.H., Shulman, E., Steinberg, G. Ambinder, A., Mackell, J.A. et al. A comprehensive support program: effect on depression in spouse-caregivers of AD patients. Gerontologist, 35(6): 792-802.[/ref][ref]Mittelman, M.S., Roth, D.L., Clay O.J. & Haley, W.E. (2007). Preserving health of Alzheimer caregivers: impact of a spouse caregiver intervention. American Journal of Geriatric Psychiatry, 15(9): 780-9.[/ref] In 2003, the intervention methods were detailed in a book that is used a resource for healthcare professionals.[ref]Mittelman, M.S., Epstein, C. & Pierzchala, A. Counseling the Alzheimer’s caregiver: a resource for health care professionals. Chicago (IL): AMA Press: 2003.[/ref]

The Administration on Aging and the Veterans Administration have adopted the New York University Caregiver Intervention in Minnesota, California, Georgia, Florida, Utah, Wisconsin, Massachusetts, and New York. The number of participants in each state ranges from seventy one to four hundred. In a 2014 white paper, Act on Alzheimer’s detailed the estimated cost savings results from the intervention in Minnesota.[ref]Foldes, S.S., & Long, K.H. (2014). The Minnesota economic model of dementia: demonstrating healthcare cost savings with the New York University Caregiver Support Intervention. Act on Alzheimer’s.[/ref] The authors estimated that five percent more adults would stay in their homes or communities, beginning in the third year of the intervention. The authors also estimated that over nineteen percent fewer people with dementia would die in an institutional setting from 2010 to 2025. The authors projected the direct healthcare cost savings over those fifteen years to be 1.24 billion dollars.

The United States, England, and Australia collaborated in a three country replication of the New York University Caregiver Intervention. The results of the collaboration demonstrated that participating caregivers experienced decreased levels of depression and their loved ones were able to remain at home longer.[ref]Mittelman, M.S., Brodaty, H., Wallen, A.S. & Burnd A. (2008). A 3 country randomized controlled trial of a psychosocial intervention for caregivers combined with pharmacological treatment for patients with Alzheimer’s disease: Effects on caregiver depression. American Journal of Geriatric Psychiatry, 16: 893-904.[/ref] The intervention is being translated to various languages. It is also being modified to support caregivers of those with other chronic conditions.

The Administration on Aging created a caregiver support toolkit and compendium of promising models of caregiver support. This is a useful resource that profiles innovative and effective caregiver support programs around the nation. For another example, see our interview with the founder of the Support for Relatives program in Sweden.

Women are caregivers living the sandwich and the boomerang generation reality.

Global informal or unpaid caregivers are mostly women.[ref]lzheimer’s Disease International World Alzheimer’s Report 2015.[/ref] Those who are caring for an elderly relative while raising children are known as the sandwich generation. The strain that the sandwich generation experiences is not sustainable. The rise of the boomerang generation, children in their twenties and thirties moving back home, puts an additional burden on the ability of a family to take in an older relative. Informal caregivers are likely either to leave their careers or work part time. Great female talent is often lost because there is little flexibility and acceptance in the workplace for this additional responsibility borne by women.

It is vital that we build a workforce to address our elders’ care needs.

One workforce development program that I profiled is the Geriatric Career Development Program at the New Jewish Home in New York. The New Jewish Home has created an innovative program that recruits at risk youth from the community and fosters their education and training in geriatric care. In my forthcoming interview with Toni Sexton, she details their training model.

Where have all of the geriatricians gone?

The world is experiencing a shortage of doctors and nurses trained in geriatrics. Those over sixty five react differently to medications and disease than younger patients. Healthcare professionals who are not trained to recognize these differences can misdiagnose and give an improper or unsafe course of treatment.[ref]Lynn, J. (2004). Sick to death and not going to take it anymore. University of California Press. Berkeley, Los Angeles, London.[/ref] The American Geriatrics Society recommends one geriatrician for every seven hundred people over sixty five.[ref]The American Geriatrics Society (March, 2013). The demand for geriatric care and the evident shortage of geriatrics healthcare providers.[/ref] In the United States, it is estimated that by 2030, there will be one geriatrician for every 4,485 adults age seventy five and older.[ref]Cottrell Houle, M. (September, 2015). An aging population without the doctors to match.[/ref] According to the Institute of Medicine, fewer than one percent of registered nurses, pharmacists, and physician assistants and just over two and a half percent of advanced practice registered nurses are certified in geriatrics.[ref]IOM, (2008). Retooling for an Aging America: Building the Health Care Workforce.[/ref]

There are a variety of reasons that there are too few geriatricians. One reason is that they do not earn as much as other specialties. In 2013, geriatricians earned an average 184,000 dollars per year, while radiologists earned an average 473,000 dollars during that same period.[ref]McNaughton, S. (2013). Portrait of the geriatrician as and endangered specialist.[/ref] The field of geriatrics can be less appealing due to other factors as well, such as the stigma of aging. Treating elders can be discouraging because they often demand more time, and their treatment often does not involve a cure. Policy incentives should be put into place to address this considerable care gap.

The inequality of access to healthcare in our elder population is often overlooked.

The global rate of poverty among the elderly was heightened by the last economic crisis. In America, approximately one third of senior households are either in debt or run out of money each month after paying for necessary expenses. In 2013, nine and a half percent of Americans over age sixty five were living in poverty, representing over four million people.[ref]US Census Bureau, Income, Poverty, and Health Insurance Coverage in the United States:  2013, Table 3,[/ref] These statistics are worse in less developed countries and countries hit hardest by the recent economic crisis in the European Union. Out of pocket healthcare costs, including caregiving, are often cost prohibitive. This cost burden prevents elders from seeking necessary medical and caregiving attention.

Advocacy and attention to the rights of caregivers matter.

Ai-Jen Poo, the director of the National Domestic Workers Alliance, advocates for the rights of caregivers through her speaking engagements and the Caring Across Generations movement. She details the plight of caregivers and the need for policy changes in her passionate and informative book, The Age of Dignity: Preparing for the Eder Boom in a Changing America. It is an important read when exploring caregiving.

The former first lady Rosalynn Carter has a foundation dedicated to caregiving. The foundation makes available a wealth of research and support materials. Her often quoted thoughts on caregiving say it all: “There are only four kinds of people in the world. Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers. Those who will need a caregiver.”

We must never lose sight of the value of caregiving and the incredible sacrifices that caregivers make to keep our elders safe and well. The trials, the defeats, the heartache, and the blessings of caregiving are life changing universal experiences that unite us all.