The Underestimated Caregiver Burden

The number of family caregivers is declining.By Henry Moss (original at American Society on Aging)

Caregiver burden is emotional and subjective. We try to measure it by looking at rates of depression and anxiety disorders in the caregiver population, and at the seriousness of these disorders. We know the highest rates of emotional burden and the deepest levels of depression are felt by caregivers who experience entrapment—a sense of powerlessness, aloneness and suffering associated with long periods of caregiving for the most difficult elders, especially those with dementia. We are aware of the many studies showing how excess stress and emotional burden can impact a caregiver’s health, finances and family life, creating even more anxiety and depression.

We already know that the 45- to 64-year-old population will grow only 1 percent between 2010 and 2030, while the age 80 and older baby boomer population increases by 79 percent. As the age 80 and older baby boomer cohort grows, the number of family caregivers available to assist them drops dramatically, from 7.5 in 2010 to 2.9 in 2050, a more than 50 percent decline. Alarm bells have been going off and researchers and advocates have been busy estimating the impact on the long-term-care system.

But not enough attention has been paid to the impact this will have on caregivers. The tacit assumption is that the adult children of baby boomers will bear roughly the same level of burden when their parents turn 85 as baby boomers face now in dealing with their own parents. The poor demographics will be offset, analysts suggest, by the expectation that higher education levels, greater wealth and advancing medical technology will lead to better health and less disability for baby boomers when they become the oldest old. A recent study by the National Bureau of Economic Research has even detected a potential trend toward the elusive compression of morbidity over coming decades. This is where the diseased state is compressed into the period just before death, leading to longer life, but less rapid medical spending.

There are good reasons, however, to expect that stress and emotional burden will substantially worsen for caregivers, largely their adult children, as baby boomers enter their 80s. Favorable developments may be overwhelmed by unique circumstances adult child caregivers will face when the true impact of the demographic crisis hits.

Fewer to share the burden

While we know there will be a shortage of family caregivers when baby boomers become the oldest old, we may be underestimating the psychological burden. There are factors that will magnify the impact:

  • The divorce rate for those older than 50 has doubled over the last 20 years, canceling decreases in widowhood. In 2009, one in three baby boomers was unmarried. With fewer spouses, the burden for adult children will be greater, and there will be a greater likelihood that living parents will be separated geographically because of divorce and that a parent will be living alone.
  • The number of baby boomers without children is higher than that of previous cohorts. Nephews and nieces, already facing the burden of dealing with their own parents, will be put into an uncomfortable position when their parents’ siblings become disabled.
  • Children of baby boomers, like baby boomers, will be more highly educated than previous generations and more likely to engage a national and regional labor market. They will continue the trend of being less likely to live near their parents—and each other—than previous caregiver cohorts, diminishing the availability of siblings and others who might share the burden.
  • There is not a strong expectation in the United States that daughters-in-law will be primary caregivers. With fewer siblings, there will be increased pressure on wives and husbands to be involved in care. This will worsen family distress.
  • Boomers and their children show declining rates of affiliation with local religious institutions and other organizations that might provide support for families dealing with eldercare issues.
  • The projected significant shortage of trained geriatric professionals will reduce the availability of support from those who know how to manage burden. A shortage of geriatric psychiatrists may have the most impact.

In sum, the adult children of baby boomers are more likely to have to “go it alone,” especially given the near universal aversion to consigning parents to a nursing home. This will add to stress, worsen depression and magnify the sense of entrapment.

Dementia creates the greatest burden

Also, despite better education and improved healthcare, the prevalence of dementia will be at best stable and probably increase in coming decades. The average number of years living with dementia will likely rise, however, as medical technology extends lifespans.

Dementia is the most difficult chronic condition to manage as evidenced by caregivers’ higher rates of stress disorders and depression when caring for people with dementia. Dementia is progressive and unforgiving and creates great tension in families. Elders with dementia are less likely to contribute to their own care, may display inappropriate and erratic behavior, are more likely to have co-morbidities and become increasingly unable to engage in meaningful conversation with caregivers. Dementia poses serious safety problems and is more likely to require close attention, including 24-hour care.

Even small increasing rates of dementia in the 2040s and 2050s will disproportionately increase caregiver burden and overwhelm family caregivers. Such caregivers will already face limited support from others and a limited ability to pay for 24-hour care or institutionalization.

EDITOR: Dementia occurs when brain cells die, but there are things we can do to encourage brain health, including getting more Sleep and natural Sunlight, and taking Melatonin supplements.

Melatonin — It’s nature’s strongest antioxidant by far, is critical to cell health, and is produced by the pineal gland as part of the circadian rhythm regulated by the day-night cycle. But as we age, we produce much less of it, and that’s worsened by the fact that artificial lights interfere with our biological clock. According to Dr. Russ Ritter, the world expert on melatonin, there’s no such thing as taking too much. It does not lower production of more from the pineal gland, since that’s entirely driven by the day-night cycle, actually by darkness. He takes 30mg/day and keeps 150mg on hand in case of an emergency (heart attack or stroke), with strict instructions to give him melatonin before oxygen.


Obesity and baby boomer mobility

In many respects, baby boomers will be the healthiest of cohorts, even when very old. Cardiovascular disease, lung disease and many other diseases are in decline and medical technology and drugs have extended lifespan and reduced the onset and level of disability.

When looked at through the eyes of the family caregiver, however, the health situation is not nearly so bright. Baby boomers have the highest rates of obesity, and extreme obesity, of any generation. Even the non-obese are disproportionately classified as overweight. Baby boomers also have been obese or overweight from a much younger age, caused by a sedentary lifestyle and, in turn, causing a sedentary lifestyle.

Of greatest concern to the caregiver is obesity’s effect on mobility. Obesity is creating a rise in the prevalence of osteoarthritis and chronic back pain. A recent study shows that even rheumatoid arthritis may be increasing in concert with obesity, striking older women particularly hard. And there is the full range of disability associated with the concurrent rise in diabetes. Mobility problems may be magnified by co-morbidities, which are rising and will rise further with extended life span. Someone with arthritis-induced mobility problems, for example, will be worse off if they also have congestive heart failure, even if effectively controlled.

Loss of mobility impacts nearly all activities of daily life (ADL’s and IADL’s) and creates the greatest demand for caregiving. It also creates the greatest risk for falls, particularly for elders living alone. While hip and knee replacement surgery will somewhat mitigate the loss of mobility, life after rehabilitation will continue to be sedentary as physical therapy tapers off. When baby boomers hit their mid-80s, the long-term effects of chronic musculoskeletal problems, including muscle atrophy from inactivity, may lead to higher-than-expected frailty and disability and greater need for longer hours of care.

Worsening financial burden

Baby boomers have more personal wealth than previous generations. It has been assumed that this will enable them to afford the resources needed to remain in the community. However, researchers studying baby boomer finances paint a less optimistic picture:

  • The recent recession cut baby boomer assets by a third, mostly due to the housing crisis. Even with a recovery, there will be slower asset growth during retirement than previously expected.
  • In 2010, only 60 percent of families of those between ages 55 and 64 had a retirement account.
  • Baby boomers are outspoken about their desire to make personal use of their savings in retirement. According to surveys, they are less likely than previous generations to put aside money for their kids or their own eldercare needs. They have invested little in long-term care insurance and grossly underestimate the cost of long-term care.

There is a strong belief among analysts that, despite their wealth, baby boomers have not saved enough for retirement.

The adult children of baby boomers are faring worse. They are expected to have less net worth when they become caregivers. According to the Bureau of Labor Statistics, more women older than 55 will be in the workforce than ever before. Needing to be available to support a frail elder may require reducing work hours or leaving a job. Such employees will also need to provide support for their own children as baby boomer children have continued the trend of marrying and having children later in life. And, baby boomers and their children underestimate both the cost of keeping a parent living independently and  the cost of having a parent move in with a child.

Financial insecurity is a major source of stress. The financial impact of caring for elders will peak at the same time the burden of caregiving peaks, further magnifying the emotional burden for entire families.

Policy implications

We have described a possible future in which the stress and suffering of adult caregivers of baby boomers will reach intolerable levels. The sense of entrapment will be palpable. The family disruption and financial distress will exacerbate the physical and mental health of caregivers.

While policy approaches that emphasize providing caregivers with financial support, counseling and respite services are well intended, anyone who knows the suffering of caregivers for frail elders also knows that this will provide minimal relief and not address the real problem. Only an army of well-paid, well-trained personal care aides and other caregivers can really have an impact, deployed into the community to manage ADL’s for the oldest old, including 24-hour care, if necessary. Such personal care aides should also be deployed into nursing homes to assist woefully insufficient staff. Housing must be built or retrofitted to accommodate aides.

Medicare or a new funding mechanism should cover the expense. The silent suffering of caregivers is a national embarrassment that will become a national crisis over the coming decades and must be ended. This will allow adult children to do the kind of things that will keep them productively involved with the care of their parents by providing emotional comfort, managing IADL’s, supporting aides and coordinating care, without the intolerable emotional burden.

About the Author

Henry Moss is a recently retired educational administrator. He works with an aide who provides 24-hour care for his 90-year-old mother with multiple chronic conditions, including Parkinson’s-related dementia, in her apartment and paid for by Medicaid. He and his wife manage the IADL’s.


Copyright – American Society on Aging – Republished with permission from the author.

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