The Reality of Long Term Care in the U.S.

If you find yourself in the majority that needs this type of care at some point in your life, how will it look?

Fact Checked by

Matthew Schwartz, CFP®, CRPC®

The Reality of Long Term Care in the U.S.

The Harsh Facts

In 1906, Alois Alzheimer studied the brain of a 50 year old female who showed signs of dementia and recognized the microscopic plaques and tangles that are a hallmark of the disease that bears his name.1  Fast forward to today and more than 6 million Americans are living with Alzheimer’s dementia. In 2020, the care provided to these individuals represents a value of approximately $257 billion, and that is only counting unpaid care for only those who have Alzheimer’s dementia!2  In fact, according to a 2017 AARP study, 52% of people turning 65 will have a severe disability that will require Long Term Care sometime in their lifetime.3 These people are not only those struck with Alzheimer’s dementia, but also those who cannot complete functional activities known as Activities of Daily Living, or ADL’s. There are 6 ADLs: Eating, Bathing, Dressing, Transferring, Toileting, and Continence.

What about me?

The question becomes, if you find yourself in the majority that needs this type of care at some point in your life, how will it look? Who will be taking care of you? Where will your care take place? When a family member requires care, we would expect families to come together and support one another. However, all too often, the opposite happens. Families are ripped apart, seeds of discord are sown, and relationships are forever soured.  Expectations between family members may be drastically different in this emotional time and loved ones often do not see eye to eye. For this reason, it is important for you to take control over your care decisions by designing a plan for your care in the event that you need it.

Our experience creates our perspective. 

Creating a plan starts with understanding what your desired care scenario entails. Often, this is created from the experience of observing someone else who is in need of care. This may be a loved one, a friend, or someone you heard about through the grapevine.

From Kid to Caregiver

For some families, there is high value placed on taking care of each other. For generations, mothers and fathers have been  cared for by sons and daughters in their home. For many people , this is now either unrealistic or undesirable. In order for this to work, it is best that the family member providing care has experience in providing care; a nurse, CNA, home healthcare aide, or other medical professional. Additionally, this family member must have flexibility in their life to attend to their loved one around the clock. A person with Alzheimer’s dementia is at great risk if they are left alone. In addition to the logistical challenges of a family member providing care, there can also be a  feeling of relying on your family or your children  that feels less than ideal for many people.

What are my options?

Many times when you and I think about the idea of long term care our minds immediately jump to a situation where we are fully dependent on a nursing staff for our care. While this is the case for many individuals, the process of extended health care does not often start there..

Community based care, like home health aides and adult day care, could be an attractive option when full-time care is not yet needed. This allows you to stay home in comfortable surroundings and be cared for by a professional that would either come to you or that you would visit when needed. This would require that your home is conducive to this type of care. Having one level, wider doors, custom shower or bath surroundings and a ramp to the door are examples of needs in your home.  If this is something that sounds appealing to you, it could be wise to begin looking for a potential property that could be a fit or pricing out renovation costs to prepare your home for the transition.

What if staying in my home isn’t an option?

While the idea of staying in our homes can sound appealing it may not always be an option. If that is the case, facility based care might be the best option. Facility based care refers to Assisted Living Facilities, Nursing Homes, or Memory Care Facilities. These locations are custom designed to provide the care that you need.  While the operators of these facilities strive to provide a community atmosphere and a comfortable environment, it still isn’t your home. For some, the idea of living in a facility like this, especially after the COVID-19 pandemic, is the least desirable option. For others, the convenience of having all care provided in one location and a community of peers is attractive.

So how much are we talking? 

In all scenarios, there are costs that will need to be paid. Genworth, an insurance company based in Virginia, publishes an annual survey of costs associated with Community and Facility based care. The costs for these services vary widely based on geographic location, so it is important to understand the costs in your desired location. You can find the cost of care in your area by visiting this link:

Wouldn’t I save money by having family help instead?

If you decide that family is your best plan, there are still costs that should be considered. According to AARP, “more than three-quarters of family caregivers contribute financially, an average of $580 per month ($6,954 per year). Roughly 20 percent of caregivers with the most intense level of responsibility—21 or more hours of care per week and helping someone with two or more ADLs—report that they are reducing work hours, taking a less demanding job, or giving up work entirely.”

With that in mind, the question that needs to be asked is whether or not your son or daughter can afford to reduce their work hours to help. How does that impact their family budget?


Now that you know the harsh realities of long term care needs, the impact it can have on the family, the options to consider, and the cost to account for, it’s time to start the conversation.

Everyone will end up somewhere but not everyone will end up somewhere on purpose. Taking the time to be purposeful in your conversations with family members about planning out extended health care needs can create a sense of peace and relief that might not be achieved if we wait until we actually need extra care.

In our next article we are going to breakdown how to plan for long term care costs in your retirement plan. Get ready to get organized!

Have a Question?

Do you have specific questions about your next life phase? How can we help?