Caregiving by the Numbers

See resources at the end of this blog, including information for caregiving during COVID-19. 

A Caregiving Report by AARP’s Susan Reinhard and Lynn Friss Feinberg revealed that in 2017, about 41 million family caregivers in the U.S. provided an estimated 34 billion hours of care to an adult with limitations in daily activities. Support included basic functional activities (such as help with eating and bathing), household chores (such as meal preparation and help with shopping), and medical/nursing tasks, to help individuals remain in their homes and communities for as long as possible.

The estimated economic value of their unpaid contributions was approximately $470 billion. By comparison, all out-of-pocket spending on U.S. health care in 2017 was only $366 billion.

Here in the Garden State, nearly 2 million New Jersey residents — this writer included — provide varying degrees of unreimbursed care to family members or friends who are elderly or disabled and limited in their daily activities. Another AARP report noted that the services caregivers provided in the state had an annual value of more than $13 billion.

The prospect that someone will be a caregiver, or potentially need a caregiver, by 2030 is great because the nation’s population is changing and will mark a significant demographic turning point by then, according to the U.S. Census Bureau’s 2017 National Population Projections.

The year 2030 is when all baby boomers will be older than age 65 — meaning that one in every five U.S. residents in 2030 will be of “retirement age.”

In a press release revised in Oct. 2019, Jonathan Vespa, a demographer with the U.S. Census Bureau, said, “The aging of baby boomers means that within just a couple decades, older people are projected to outnumber children for the first time in U.S. history. By 2034, there will be 77.0 million people 65 years and older compared to 76.5 million under the age of 18.”

When it comes to being a caregiver, there appears to be few age boundaries. Of these nearly 41 million family caregivers nationwide, the majority are in their 40s and 50s, AARP reports, but about 1 in 4 is part of the millennial generation.

Conversely, a recent story in the Daily Record of Morris County spotlighted the 100th birthday of Carmela “Millie” Scarnato. A newly minted centenarian, Scarnato is still a caregiver for her son with special needs, who is 57.

COSTS AND CHALLENGES

The work of a caregiver, AARP notes, can often morph into a part-time job or more, and cost caregivers more than $600,000 in lost wages and missed Social Security benefits over a lifetime.

One of the greatest challenges of family caregivers though is training, noted Forbes Senior Contributor Howard Gleckman in his article titled “Compassion isn’t enough for family caregivers. They need training too.” Gleckman contends that family caregivers often provide aid with lots of love and compassion, but zero skills.

“That lack of training makes their lives more difficult and makes it more likely that those they are caring for will fall, get infections, or suffer from dehydration or malnutrition,” Gleckman says in the article. “And as family members increasingly are expected to provide nurse-like wound care or complex medication management, their need for training is even greater.”

Gleckman cites a study published in JAMA Internal Medicine indicating that 93 percent of family members caring for an older adult said they had never been taught how to do this difficult work.

WHAT’S HAPPENING IN TRENTON

In 2018, a bill was signed into law creating the New Jersey Caregiver Task Force to evaluate caregiver support services in the State and provide “recommendations for the improvement and expansion of such services ensuring that New Jersey is doing all it can to support caregivers who provide invaluable services to loved ones and friends.”

The NJ Caregiver Task Force consists of representatives from the public and private sectors.

“Studies show that the emotional and physical health of caregivers often suffers as a result of the stress and physical demands they encounter, particularly when it comes to caring for people with dementia or Alzheimer’s,” said Assemblywoman Vainieri Huttle, a co-sponsor of the bill, in a press release. “This task force will take an honest look at how we can better address these needs.”

The Task Force will:

  • Identify and survey caregivers in the state, in order to develop an aggregate summary of caregiver characteristics, including age, geographic location, the amount of time spent in caregiving activities and acting in the caregiver role.
  • Solicit testimony from caregivers on the nature and type of tasks they perform; the feasibility of task delegation; the availability and sufficiency of caregiver training programs, financial support services.
  • Submit a report to the Governor and the Legislature detailing its findings and providing recommendations for legislation, or for regulatory or programmatic changes.

“Caregivers devote their lives to their loved ones, often missing work and missing out on wages, and this is going to become more of a concern in the coming years with an aging population,” noted Task Force member and Commissioner, New Jersey Department of Human Services, Carole Johnson.

HELPFUL INFORMATION

If you’re a caregiver, or will soon become one, consider the following:

  1. Hire an elder-care attorney to draw up financial and medical power of attorney documents, plus determine if a loved one is eligible for other services. Watch episode 86 of NJFA’s “Aging Insights” TV program, “The Three Most Important Documents,” at https://youtu.be/axmetvdDQQ8
  2. Learn about expanded paid time off for caregivers. Watch “Take the Time You Need,” episode 95 of NJFA’s “Aging Insights,” at https://youtu.be/gJrnqz_Mehc
  3. View “Giving and Getting Support, episode 99 of “Aging Insights,” which is devoted to caregiving, at https://youtu.be/9T5ObyIkdRQ
  4. Visit NJ’s county-by-county Aging & Disability Resource Connection/Area Agency on Aging (ADRC/AAA) for resources  https://www.state.nj.us/humanservices/doas/home/saaaa.html
  5. Caring for a veteran? Check out resources available through Veterans Affairs at https://www.nj.gov/military/veterans/benefits-resources/
  6. Become familiar with the CARE (Caregiver Advise Record Enable) Act, which was enacted to help the growing number of family caregivers know what to do/how to do it after a parent or older loved one’s hospitalization. [Download a wallet card at https://www.aarp.org/caregiving/local/info-2017/care-act-aarp-wallet-card.html]
  7. Social workers and nurses at hospitals and medical practices who are treating your loved one can suggest appropriate local services.
  8. Visit the AARP’s caregiving resource area https://www.aarp.org/caregiving/
  9. Visit the Family Caregiver Alliance for NJ https://www.caregiver.org/state-list-views?field_state_tid=89
  10. Read more about caregiver burnout and ideas to help combat it https://www.aginginplace.org/caregiver-burnout/

Here are resources specific to caregiving and the coronavirus:

https://www.johnahartford.org/dissemination-center/view/coronavirus-disease-covid-19-resources-for-older-adults-family-caregivers-and-health-care-providers

https://www.hopkinsmedicine.org/health/conditions-and-diseases/coronavirus/coronavirus-caregiving-for-the-elderly

https://www.ncoa.org/covid-19/covid-19-resources-for-older-adults/

REFERENCES

Links to references are in the blog copy.

by Sue Burghard Brooks, Communications Manager for the New Jersey Foundation for Aging. A published author, Sue is also a caregiver for her Dad, who is a nonagenarian veteran and a Mason.

 

 

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