Caregivers come from every walk of life and 29% the American population, or 65 million people, are engaged in providing care for another person. Conferences and special events continue to be held to spotlight the increasing predicament of Caregivers and the psychological and financial costs on their lives.
Last summer, The MetLife Mature Market Institute® published a comprehensive research paper on Caregivers – The MetLife Study of Caregiving Cost to Working Caregivers: Double Jeopardy for the Baby Boomers Caring for Their Parents. The Mature Market Institute - MMI - produced the report in conjunction with the National Alliance for Caregiving and the Center for Long Term Care Research and Policy at New York Medical College.
The study analyzes data from the 2008 panel of the National Health and Retirement Study (HRS), and is a relevant review of Caregivers and those who depend on them.
Table 1: Who Are the Caregivers?
RetirementHomes.com spoke with two experts in the Caregiving field to assess the MMI report.
- Denise Brown, certified professional coach, founder of Caregiving.com, and author of four books for family caregivers.
- Bart Mindszenthy, co-author of Parenting Your Parents: Support Strategies for Meeting the Challenge of Aging in the Family (Dundurn Press, 2nd Revised) and founder of mycarejourney.com.
Double jeopardy is a familiar situation for millions of giving and compassionate people who may be managing three lives simultaneously: their children, a parent and their own. They are the ‘sandwiched generation’ – assisting their children through university and maintaining the health of aging parents. Our experts identified with the main problem: how do the Caregivers care for themselves?
Denise Brown remarked, "How does today’s family caregiver have money to pay for their future care?" Caregivers, she said, are 'tapped out' because of the costs of caregiving, the loss of wages because of time spent caregiving, and the impact of a recession. "For many family caregivers, the greatest sacrifice is the security of their own future."
Bart Mindszenthy said, "Those 40 to 60 year olds are more frequently finding that sons and daughters are moving back home for a while." He categorized it as either a post-college job hunting period, or maybe a failed marriage or lost job. "Whatever the reason, they’re back for a period of time and they will need some measure of support."
"Meanwhile," he continued, "those parents are now caring for their own aging parents, so they're in a bind.” Mindszenthy calls them 'the Shoulder Generation’, shouldering responsibilities, in some way helping both their grown children and their aging parents.
The 65 million caregivers in the US represent a tripling over the past 15 years. The Boomer Generation is the largest in North American history, and it has fallen on them to care for their parents who are living longer and want to age in place. What does it say about the character of Baby Boomers who provide these services to their parents and the older generation who rely on them?
"Baby boomers are activists," said Brown. "They step in to improve a situation, to solve a problem." She added that they work on behalf of aging parents, to ensure their parents receive quality care and to provide quality of life.
Mindszenthy remarked that Boomers are "the last loyal generation.” They have ethics and values. "That makes us more sensitive of people’s needs, and more patient and tolerant overall."
According to Brown, societal reasons are at play: "Health care providers do what they can to reduce costs,” she said, “but hospitals are discharging patients sooner and with greater care needs.” She proposes that the costs of long-term care are rising, which means aging relatives may have to rely more and more on family members for help. “Their budget limits how much help they can hire or if they can move to an assisted living facility or nursing home."
According to the report: “The total estimated aggregate lost wages, pension, and Social Security benefits of these caregivers of parents is nearly $3 trillion.”
Results from The MetLife study confirm that daughters are more likely to provide basic care and sons are more likely to provide financial assistance. The study states: “Women who provide care often reduce their hours worked as a result of the burden of caregiving”.
Mindszenthy considered the results were due to 'stereotypical role play'. "Women do the caring. Women are more emotional, intuitive, and sensitive." Men”, he said “do banking and errands.” More men are assuming increasing roles in caring for the elderly, "but it’s still a woman’s world."
Brown's thoughts were similar. "Women feel comfortable in a caregiving situation," she responded. "What's hardest about a caregiving situation? It's managing the emotions - the guilt, the anger, the resentment.” She describes caregiving as an emotional roller coaster. "It may be that women are more comfortable on that roller coaster of emotions than men". Men, she feels may find it easier to be involved with the less emotional tasks, paying the bills and managing the money.
But the MMI report also stated: “For all working caregivers, it is not unusual also to report missed opportunities for promotions, business travel, relocation, and education as workplace effects of providing care. Overall, both current wages and retirement income can suffer as a result.”
From the report: “Caregiving responsibilities may have a dramatic economic impact on both men and women through lost wages due to either reduced hours worked or leaving the labor force early and diminished Social Security benefits or private pensions.”
The MetLife Study found that 50+ adult children who work and provide care to a parent are more likely to have fair or poor health than those who do not provide care to their parents.
Figure 7: Percent of Workers in Fair or Poor Health, by Caregiving Status and Gender
The motivation? Mindszenthy said that 50+ adult children from safe, sound homes with caring parents are more likely to be active caregivers to their aging parents without feeling compelled. "They just do." he remarked. "It’s part of their paradigm of what a family is all about. And this pattern is even more pronounced in cultures such as Asians and southern Europeans."
Brown held similar ideas: "Most family caregivers feel a responsibility to an aging relative," she replied. "Some do it out of love, some as a way to give back to a parent. Some step up to provide care simply because they couldn't live with themselves if they didn't."
An important focus of the Study was on "opportunity costs” of caring for parents, including health effects, and psychosocial and behavioral impacts, such as depression or chronic disease.
Brown considered the very real possibilities of caregiving depression. "Family caregivers can feel like they grieve over and over,” she said. In Coping When Retiring Also Means Caregiving, a February 2, 2010 article for RetirementHomes.com, Brown writes: “The dream of your retirement day was something like a best friend. That retirement dream was awesome." To offset failed expectations, Brown recommends: "Create a caregiving mission statement. Your mission statement reflects your caregiving goals and your caregiving personality. It will serve as a reminder of what you can and cannot do as a family caregiver, as well as what’s most important to you and to your care recipient."
Brown pointed to the American Journal of Epidemiology publication, April 2009: ‘Caregiving Intensity and Change in Physical Functioning Over a 2-Year Period: Results of the Caregiver-Study of Osteoporotic Fractures’ (Oxford Journals) which posits:
"Caregivers consistently report higher levels of stress than noncaregivers do. According to theories of stress and health caregivers should have higher rates of health decline because of chronic stress. Furthermore, health decline should be greater among caregivers who perform more caregiving activities (i.e., high-intensity caregivers) because they are more stressed as a result of spending more time caregiving, caring for persons with more debilitating illnesses that require more care, or trying to balance caregiving and other responsibilities."
The publication confirmed the plight of Caregivers in terms of health and illness.
Mindszenthy referred to 'numerous studies' that reveal family caregivers pay a price for their caregiving: financially, psychologically, physically, and emotionally. "In fact," he said "family caregivers who spend a lot of time giving care tend to die younger." He estimated the actual price Caregivers pay is determined by their makeup. "However, there is no doubt, that the stress of caregiving and the mental and emotional pressures, along with the perpetual sense of guilt that too many experience, all add up to more instances of depression and other illnesses.”
What can caregivers do to avoid depression or chronic disease?
Brown says, “Reach out to other family caregivers, either through a support group in the community or one online. When you connect with others in a similar situation, you lessen the loneliness."
She also recommends taking regular walks and journaling. She also advised that caregivers understand their limits and find help, through social service organizations, home care agencies, friends, neighbors and family members.
Mindszenthy encouraged that caregivers build in ‘me time’, away from caregiving, work, and other family demands. "Caregivers need to ensure they get enough sleep and physical exercise. Read books and watch movies to turn off the mind from its regular processing."
Despite the overall dark picture, Caregivers maintain strong beliefs and steadfast ethical standards. They are willing to sacrifice their personal lives to help aging loved ones. With proper lifestyles they can maintain a sense of well-being, against the odds. Caregivers are a brave, dutiful, generation. Within an aging society, they are on the front lines of America’s health care.
The study’s Executive Summary states: “Nearly 10 million adult children over the age of 50 care for their aging parents. These family caregivers are themselves aging as well as providing care at a time when they also need to be planning and saving for their own retirement.” Perhaps an agenda behind the study is an alert to plan and save for retirement, developing a position paper by Metropolitan Life Insurance Company, NY, and positive reinforcement from an insurance company about Caregiver retirement funds. Caregivers are offering care at a time when they need to plan and set aside for their own retirement, a key message for an insurance company.
The MMI’s respondents are all at least age 50. It admits to being non-reflective of “the entire spectrum of caregiving.” Also, the study’s only focus is on caring for a parent. Assistance to “a spouse, grandparent, sibling child with special needs, or other relative or friend, is not included.”
Similar to a lot of studies, Met Life plays it safe and provides comprehensive data without enough analysis. Readers – caregivers – who are in greatest need of the information must read between the lines. More interpretation, as provided by complex news stories would have been beneficial. Ultimately, MMI is a study in numbers, not impact. There’s no solution from the public/private sector to head off the Caregiver tsunami.
Can technology lessen the Caregiver burden? The MetLife study didn't address the growing number of e-enabled devices that could be of assistance. Baby Boomers are heavily engaged with mobile devices such as iPhone, BlackBerry and Android.
In early 2011, The Wall Street Journal reported more than 8,700 apps can supplement caregiving responsibilities. Functions include medication management, such as alerting the user about times for different pills to be taken, to storing medical records and keeping information organized. Another app acts as a GPS when a caregiver has it downloaded on his or her own phone.
A 2010 eMarketer report predicted growth in Smartphones by older adults because of these apps, which could lead to more independent lifestyles.
In a March 2008 article, Elinor Ginzler, AARP Sr. Vice President for Livable Communities, wrote "the ground is fertile for the use of caregiving technology to flourish." She continued, "Almost nine in ten older Americans want to be able to stay in their own homes and they are willing to use technology that can help them do that. Cost, however, is the elephant in the room-how to pay remains a big obstacle."
And in an April 2011 AARP Press Release, More Older Americans Aware and Open to Caregiving Technology, Jody Holtzman, AARP Senior Vice President for Thought Leadership wrote: “Home safety, monitoring, and communications technology are coming of age at a key time for a new generation caring for their loved ones.”
He added, “This could be the first generation of caregivers for whom technology could provide seamless access to communications and real time information about how well their loved ones are doing as they continue to live on their own."
The PERS (Personal Emergency Response System) phenomenon could hold out tech-enabled possibilities for caregivers to remotely monitor their parents when they've fallen. But tech savante Laurie Orlov writes none of these devices prevents a fall, which – according to the Center for Disease Control and Prevention – is experienced by one-third of those aged 65+ each year – and is the leading cause of injury death among older adults. (Aging in Place Technology Watch: Can innovation push limits of traditional PERS, December 2010).
The MetLife Study fails to clarify the myriad of legal issues faced by caregivers who must be clear on critical legal documents for future planning: a Will, Power of Attorney and Advance Medical Directive – a Living Will and a Durable Power of Attorney for Health Care. A consultation with a lawyer is advised.
On many occasions, the study resorts to the ‘not in the scope of our study’ justification. Despite these limitations, The MetLife Study of Caregiving Cost to Working Caregivers is an excellent and comprehensive report – required reading for all Caregivers.
Table 1: Who Are the Caregivers? and Figure 7: Percent of Workers in Fair or Poor Health, by Caregiving Status and Gender are sourced from Caregivers – The MetLife Study of Caregiving Cost to Working Caregivers.