The Caregiving “Crisis”: Findings from a New Genworth Study

Mary has been providing care for her father with dementia for several years, in the home she shares with her husband and three small children. Things have gotten stressful for Mary lately as her father’s condition is getting worse, and she is having trouble dealing with his verbal aggression and wandering. Despite the difficulties of providing care to both her family and her father, Mary is committed to continuing to care for her father as long as she is able to.

Don is a caregiver for his wife, who suffers from Parkinson’s disease. He is 75 years old himself and has a hard time physically due to a decline in his own health. Initially, Don was very apprehensive about asking for help and about his wife’s possible response to home visits from a health aide, but caregiving for his wife was becoming too much of a burden to bear. Don learned that there was help available for both him and his wife, and he became better able to cope with their situation. His wife stayed at home as long as possible until nursing home care was needed.

Who Are Our Nation’s Caregivers?

Similar to Mary and Don in our examples, 65.7 million Americans (or 29 percent of the adult U.S. adult population involving 31 percent of all U.S. households) serve as family caregivers for an ill or disabled relative, according to estimates from the National Alliance for Caregiving. Caregivers provide care to people who need some degree of ongoing assistance with everyday tasks on a regular or daily basis.

Caregiving can be a rewarding experience for loved ones. At the same time, the physical, financial, emotional, and psychological strain of caregiving can have a wide-reaching impact on them. The 2021 Genworth Caregiving study explains the current state of caregiving in the United States.

Results from Genworth’s Caregiving Study

To understand the perspectives of caregivers and care recipients, Genworth conducted its latest Beyond Dollars Study in 2021, titled “How Caregiving Impacts Families, Communities, and Society” and recently released the results. The study looks at information and insights provided by 1,325 family caregivers, care recipients, and family members.

These are some of the findings from the study:

  • Forty-nine percent of caregivers reported that their loved one required assistance with “most facets” of daily living.
  • Forty-eight percent of caregivers are female, while 52 percent are male.
  • Fifty-four percent of caregivers are between the ages of 25-54, with an average age of 51.
  • Forty percent of caregivers are likely an adult child taking care of an aging parent.
  • Fifty-seven percent of caregivers have children under the age of 18 at home.
    • Thirty-one percent of caregivers with children said caregiving negatively affected their relationship with their children.
  • Seventy-two percent of caregivers are married or in long-term committed relationships.
    • Forty-three percent of partnered caregivers said caregiving negatively affected their relationship with their spouse/partner.
  • Fifty-five percent of caregivers were employed full-time when their loved one required care.
    • Fifty-one percent of employed caregivers said caregiving negatively affected their ability to do their jobs.
  • Forty-eight percent of caregivers reported high levels of stress.
  • Fifty-one percent of caregivers reported having their health and well-being impacted.
  • Sixty-six percent of family caregivers are paying for care with their own savings/retirement funds.
  • Fifty-three percent reported that caregiving is reducing their base quality of living (financially).
  • Twenty-seven percent reported repeated absences from work.
  • Twenty-four percent reported missed career opportunities.
  • Even among those who had prepared, over 78 percent of caregivers wish they had taken steps sooner.
  • Caregivers of people with dementia or Alzheimer’s are particularly at greater risk for anxiety, depression, and lower quality of life compared to caregivers of people with other chronic conditions.

How Things Have Changed

Compared to in the Beyond Dollars 2018 Study, participants in 2021 reported:

  • Care needs are more severe and longer lasting. Fewer care recipients are receiving care in a loved one’s home.
  • Less money was spent out of pocket in total, but more was spent on home modifications specifically.
  • Spending had a greater toll, from “using savings/retirement funds” to “reducing base quality of living” — being chosen more often in 2021 compared to 2018.
  • Employers’ flexibility may have reduced the negative impact of caring for loved ones.
  • Study participants reported the existence of better resources, improved access to training, and more flexible work arrangements.
  • Where planning for long-term care was involved, parties reported less stress and lower out-of-pocket costs.
  • Given COVID-19, use of web-based training went up while use of hands-on training decreased, but notably, compared to 2018, family caregivers were more likely to feel “qualified” to provide the care needed of them.

View Genworth’s “How Caregiving Impacts Families, Communities, and Society” study here.

Be Prepared: Create Your Own Comprehensive Long-term Care Directive, Dementia Directive, and Legacy Letter

As you can see from the study described above, planning in advance is quite helpful. The CDC offers a very simple care plan that can help both older adults and caregivers. Our firm offers to our clients a much more comprehensive Long-term Care Directive®, Dementia Directive, and Legacy Letter.

The Farr Law Firm’s combination Long-term Care Directive®, Dementia Directive, and Legacy Letter summarizes a person’s health conditions and current treatments for their care. The plan should include information about:

  • health conditions;
  • medications;
  • health care providers;
  • emergency contacts;
  • caregiver resources.

When developing a care plan, you can ask the doctor of the person you care for to help you complete it. At that time, you can also discuss advanced care plan options such as what follow-up care is necessary, end-of-life care options, and resources that are available to help make things easier for you as a caregiver. Try to update the care plan every year or if the one you care for has a change in health or medications to keep the care plan current, and remember to respect the care recipient’s privacy after reviewing their personal information.

How Do You Develop a Care Plan?

To develop a care plan, it is a good idea to begin with a conversation about care planning with the care recipient. If your care recipient isn’t able to provide input, anyone who has significant interaction with the care recipient, such as a designated family member or home nurse aide, can help complete the form.

Be sure to talk to the doctor of the care recipient or another health care provider for input, as well. A physician can review the form you started and help to complete it, especially if there is a conversation about advance care planning. Ask the doctor about what care options are relevant to the care recipient. Be sure to discuss any needs you have as a caregiver, as well.

What Are the Benefits of a Care Plan?

Care plans can reduce emergency room visits, hospitalizations, and improve overall medical management for people with a chronic health condition, resulting in better quality of life for all care recipients. Care plans can also provide supportive resources for you, the caregiver, to continue leading a healthy life of your own. At the Farr Law Firm, we offer a long-term care directive, dementia directive, and legacy letter to our clients.

Click here for a sample form.

Are You a Family Caregiver?

If you are a caregiver for a loved one, it is wise to plan in advance. Nursing homes in the DC Metro area cost $12,000-$14,000 a month, which can be catastrophic for most families. Life Care Planning and Medicaid Asset Protection is the process of protecting your assets from having to be spent down in connection with entry into a nursing home, while also helping ensure that you or your loved one get the best possible care and maintain the highest possible quality of life, whether at home, in an assisted living facility, or in a nursing home. Please call us today to make an appointment for an initial consultation:

Elder Care Fairfax: 703-691-1888

Elder Care Fredericksburg: 540-479-1435

Elder Care Rockville: 301-519-8041

Elder Care DC: 202-587-2797

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.