The State of Long-Term Care

Susan and Joe never thought that they would need long-term care. They were both healthy eaters, marathon runners, and world travelers. To their surprise, when Joe was 67 years old, he developed Parkinson’s. At first, it wasn’t too bad, and he continued enjoying his hobbies with his wife. But as his condition worsened, his motor skills diminished, and he began losing his memory (80% of those with Parkinson’s get dementia, as well). Joe had to eventually go into a nursing home, and despite leading a healthy lifestyle, he and Susan wished that they had better planned for the possibility of long-term care.

Joe and Susan’s children, who are both under the age of 40, were surprised when their dad’s condition declined so badly, and how much nursing home care cost for their father when the need arose. It was truly an eye-opening experience for them that it would cost more than $12,000 a month for a room in a local nursing home!

Joe and Susan’s situation is not unique; it happens to thousands of people every day. However, with knowledge about long-term care and proper planning in place, you can be prepared if it happens to you.

Who Needs Long-Term Care?

Did you know that the majority (at least 70%) of Americans age 65 and older will require at least some long-term care services and supports as they age, often as a result of chronic illness or disability? That means that most likely you will need assistance at some point with daily activities such as eating, bathing, and using the bathroom. This number isn’t going down either. In fact, the need for long-term care services is expected to dramatically increase over the coming decades, as the U.S. population of adults age 65 and older is projected to nearly double.

Poll Explores Long-Term Care in America

The AP-NORC Center’s sixth annual Long-Term Care Poll explores the experiences, expectations, and attitudes regarding long-term care. The AP-NORC Center for Public Affairs Research focuses on opinions regarding long-term care in the United States. The AP-NORC Center is a partnership between the Associated Press, a global news wire service, and the National Opinion Research Center, an independent research organization at the University of Chicago.

In prior years, the poll focused on Americans age 40 and older. It revealed that a majority in this age group hold misperceptions about the likelihood they will need long-term care services in the future, and about the cost of such services. For the first time, this year’s study also explored the perspectives of younger adults, those age 18 to 39, generating new insights on their views of long-term care and personal experiences with caregiving, and feelings towards telemedicine.

The 2018 survey included new topics, including preferences and concerns around telemedicine, a key component of the CHRONIC Care Act; perceptions of the number of older Americans who will need long-term care; and actions taken to plan for the long-term care needs of loved ones and caregivers.

To arrive at the findings, the researchers conducted 1,945 interviews with a nationally representative sample of Americans including 423 adults age 18-39 and 1,522 adults age 40 and older. Here are some of the findings:


Comfort with using telemedicine: Adults age 40 and older are just as likely as those age 18 to 39 to say they would be comfortable using at least one form of telemedicine, but they are slightly less comfortable communicating by text message for an urgent health concern compared to younger adults (22% vs. 29%).
Support for telemedicine is high among informal caregivers—87% of current caregivers age 18 and older say they would be comfortable using at least one form of telemedicine for their older loved one.
• When it comes to concerns around telemedicine, 47% of adults age 18 and older are concerned about receiving low-quality care, 39% are concerned about the security of their health information or technical issues, and 31% have concerns about privacy.

Long-Term Care

Americans aren’t prepared: Few older Americans have done substantial planning or saving for their future needs, and less than half have even talked about the topic with their family.
• Just 35% of adults age 40 and older are able to correctly estimate that 7 in 10 Americans will need some form of long-term care as they age, while 54% underestimate the figure and 11% overestimate it.
• Only 17% are very or extremely confident that they will have the financial resources to pay for long-term care.
Policy changes needed: A majority of those surveyed support a variety of policy changes that would help in the financing of long-term care, as well as supporting changes in practice that favor a person-centered care approach.
• Medicare Advantage should offer long-term care (LTC) insurance: 81% support allowing individuals to get long-term care insurance through a Medicare Advantage or supplemental insurance plan.
Employers should offer LTC insurance: Although few Americans have long-term care insurance, 84% of older adults say employers should offer it to their employees as a workplace benefit, similar to how some employers offer health, dental, or vision insurance. Please note that there are good alternatives to traditional Long-Term Care insurance, such as hybrid policies, which companies could also offer. Please read our article on the subject to find out more.


Who provides care: Forty percent of Americans have provided long-term care to an older relative or friend, a volunteer workforce that’s growing as the population ages. Nearly a quarter of them, especially caregivers who are over 40, the amount of time spent on caregiving duties is equivalent to a full-time job.
Caregivers need to take better care of themselves: Nearly 40% of caregivers have a health problem, physical disability, or mental health condition that impacts their daily life or limits their activities, the poll found. More than a quarter of caregivers say it’s difficult to manage their own health along with the caregiving duties.
Tax breaks for caregiving: The most widely favored policy is providing tax breaks for people who provide care to family members, which is backed by 84% of adults age 40 or older.
Support for policies: More than 3 in 4 older adults also support paid temporary leave programs to care for a family member (80%), a Medicare benefit that provides temporary care if the caregiver and the care recipient live together and are both Medicare beneficiaries (79%), tax breaks for employers who provide paid family leave (78%), and changing Social Security rules to give earnings credit to caregivers who are out of the paid workforce because they’re providing free care to a family member (76%).

More Perceptions About the State of Long-Term Care

The most recent AARP Scorecard concurs with the AP-NORC study described above, that most people are not prepared for the risk of needing long-term care or the potential costs they may face. While many are in denial and do not think they will need assistance, others believe that Medicare will pay for LTC (Medicare does not pay for long-term care, only short-term rehabilitation care). Due to lack of knowledge about long-term care and lack of planning in advance, many older adults are getting by with unmet needs, and many family caregivers are bearing unsustainable burdens.

The good news is that some states are leading the way in closing these gaps: providing more formal supports for family caregivers, improving the quality of care, and investing in public resources to create high-performing systems to meet growing demand. The 2020 Scorecard, which will be released next year, will explore this further. As a nation, we need to do more and do better to improve the experience of care for families and help older adults maintain a high quality of life as they age.

Planning in Advance for Long-Term Care

Knowing what costs to expect and how you will pay for them can prevent financial stress from adding to these difficult emotions.

The significant costs of long-term care can impact retirement plans, savings, and assets, and the level of care one receives. That’s why it’s so important that people speak with an experienced elder law attorney about long-term care preferences and to put a plan in place.

Medicaid Planning for Long-Term Care

Medicaid planning can be started while you are still able to make legal and financial decisions or can be initiated by an adult child acting as agent under a properly-drafted Power of Attorney, even if you are already in a nursing home or receiving other long-term care. In general, the earlier someone plans for long-term care needs, the better. But it is never too late to begin your planning.

To begin long-term care planning (and incapacity and estate planning) right away, please call us now to make an appointment for an initial consultation:

Fairfax Elder Law: 703-691-1888
Fredericksburg Elder Law: 540-479-1435
Rockville Elder Law: 301-519-8041
DC Elder Law: 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.

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