America Has a Major Misconception On Aging

What Percentage of Americans Will Need Long-Term Care?

It's Time for a Senior Care Reality Check

Laura Mitchell
"Don't wait until the crisis happens before putting on the seatbelt. Be proactive and enjoy the ride!"

Dr. Bill Thomas
"People who are not prepared get care that is chosen by someone else."

Kathy Birkett
"The greatest consequence of not being fully prepared for experiencing a long term care need is becoming unable to live our elder years the way we want."

Senior Care Includes More Than Nursing Homes

American's Have More Options Now Than Ever Before

Projected Care Choices of Those Needing Long Term Care

But We Must Prepare

Most Care Must Be Paid Out-of-Pocket

Over 72% of those needing long term care must use their own funds - that's half of everyone in America. Of those that need care and have to pay for it out-of-pocket, average costs are over $25,000 (2015 dollars) over their lifetime.

Medicare Covers Little of the Costs

Medicare is projected to only cover 12% of the nation's long term care costs

Few Qualify for Medicaid

Medicaid is projected to only cover 30% of the population

Most Haven't Had Family Discussions

Over 75% of people have not discussed care options with their family

We Asked 44 Industry Experts About the Issue

From Leading Organizations and Companies

Key Findings

Why is there a drastic difference in people's perception vs reality?

  • People are in denial over aging and what comes along with It.
  • Consumers are optimistic in our youth-oriented culture. Why worry now anyway?
  • People equate aging and long term care with death and defeat.
  • The reality of aging is not a powerful enough motivator until it hits close to home.
  • Care has been driven by crisis management versus proactive and preventative care.
  • There is not enough discussion on what long term care is. It's not just "nursing homes".

"Human beings have a very limited ability to accurately predict or even imagine the needs of their future self. It is especially true when that future contains scary possibilities."
-- Dr. Bill Thomas

"Needing long-term care signifies a major step towards end of life, something a great many of us would prefer to postpone or ignore altogether."
-- Christina L. Selder

"We all want to think that we will live forever and not need care. We will spend lots of time comparing wines, cars and homes, but not this."
-- Tami Neumann

"There is not a lack of information about aging issues, but there is a lack of knowledge on the part of the consumer about dealing with aging at various stages."
-- Tom Burke

What are the consequences for not being prepared?

  • If you are prepared, you can choose the care you receive. If you are unprepared, care is chosen for you.
  • Without proper preparation, the financial and emotional stress on the family to be the caregiver can be devastating.
  • For the unprepared, the need for long term care can result in a complete depletion of assets and/or bankruptcy.
  • Proper planning gives consumers control of their care options and also eases the burden of family members.
  • Most people falsely believe Medicare will cover the costs of long term care services they will need.
  • Most people don't have enough money to pay for long-term care out-of-pocket, but have too much to qualify for Medicaid.

"Social security won't save us, our kids won't house us, and our savings won't cover us. We risk state-institutionalization on a massive scale."
-- Rhonda Harper

"The greatest consequence of not being fully prepared for experiencing a long term care need is becoming unable to live our elder years the way we want."
-- Kathy Birkett

"If we treated and respected our aging population in the same way we treat the children we love, we wouldn't wait for the accident to happen before ensuring preventative safety."
-- Laura Mitchell

"The entire family can be wiped out financially, emotionally, and otherwise. That's a high price to pay for keeping your head in the sand."
-- Joy Loverde

How would you close the discrepancy gap?

  • The best long term care education comes from experience - when people have loved ones living the experience.
  • Society, starting at a young age, needs to remove stigmas associated with aging. It's okay to admit natural aging.
  • Long term care needs to get more mainstream media attention, and not just the risks, but the consequences of aging.
  • Build more public awareness about aging and long term care through real life examples of people receiving and giving care.
  • Human resource departments should address the need for long term care planning in addition to retirement planning.
  • Consumers need to understand chronic diseases and make lifestyle changes to reduce the associated health risks.

"Financial investment firms will continue to show the brilliant days of retirement walking on the beach with the one you love. They will not show the 85-year old languishing in a skilled nursing bed needing $8500 a month to survive."
-- Rhonda Harper

"People will always struggle with the issues that force them against their will to accept long term care. It's like trying to prepare for someone to take a hammer and smash your thumb. No matter how much you prepare, it's still going to really hurt.."
-- Dr. Steve Fuller

"We're all looking for better options than the ones that currently exist. As we... develop more choices and more suitable ways to support our elders, it will become less daunting to imagine, discuss, and prepare for the years in which we'll need help from others."
-- Eleanor Feldman Barbera, PhD

"Working families need better tools to plan and pay for their future care needs, and this can only happen when there is a groundswell of public support and dialogue."
-- Dr. Bruce Chernof

What advice do you have for consumers about their future care needs?

  • Become your own advocate. Put together a plan that includes the proper legal and financial planning paperwork.
  • Have consistent talks with your family about your long term care plan and maintain the ongoing dialogue.
  • Build your team of trusted advisors that includes family members, financial planner, estate planning attorney, etc.
  • Include long term care as part of your retirement planning. Begin saving and preparing for those needs.
  • Knowledge is power. Seek input and advice from those with both positive and negative long term care experiences.
  • Take care of yourself while you can. Make healthy choices to reduce risks and maximize your health.

"Find your trusted advisors or partners. Learn what they suggest. Take on the homework now. It is really true: knowledge is power. You will find you have more options both now and in the future."
-- Nancy Ruffner

"Get educated from multiple angles so you have all your bases covered. Build a team to protect your interests: Adult Children, Attorney, Accountant, Financial Planner, Doctors, Social Workers, Real Estate Agent... "
-- Lori La Bey

"Have several talks over time. Avoid one-and-done scenarios. Go slow. Be patient with your Mom or Dad. Know that this is a scary topic."
-- Tom Burke

"Family involvement is key... Care of our loved ones is a family responsibility, and I believe more people will be cared for at home like in many other cultures."
-- Judy Berry

Help Close the #SeniorCareGap
Make Sure Others Are Aware

Industry Leaders

Dr. Bill Thomas
Wall Street Journal Top 10 Americans Shaping Aging

Why is there a drastic difference in people's perception vs reality?

There is a river in Egypt, I think you know the name, that explains this.

Put more scientifically, human beings have a very limited ability to accurately predict or even really imagine the needs of their future self. This is especially true when that future contains scary possibilities and lies decades in the future.

What are the consequences for not being prepared?

People who are prepared get to choose the kinds of care they will receive and who will deliver that care.

People who are not prepared get care that is chosen by someone else.

How would you close the discrepancy gap?

We need to change the narrative surrounding aging in general. Your topic is actually just one (very tangible) example of the toll we pay for living in a deeply ageist society. Fixing this problem requires us addressing ageism head on.

What advice do you have for consumers about their future care needs?

People need to understand that these choices will be made. Preparing now, means that YOU get to make them! Not preparing means that other people (sometimes even people you don't know or don't like) will be making them for you.

Not preparing is choosing to let other people decide your fate.

Dr. Joanne Lynn
Director, Center for Elder Care and Advanced Illness

Why is there a drastic difference in people's perception vs reality?

Many reasons - but a major one is simple unfamiliarity, which will change in the next few years as Boomers take care of their parents. But we also need community stories.

What are the consequences for not being prepared?

The consequences for individuals and families now is terrific strain, but eventual rescue by Medicaid. The consequences for the society will eventually be crippling to the economy - unless we reduce per capita costs and work on serious savings to cover the costs.

How would you close the discrepancy gap?

Tell many more stories in the press - how is it that people live their last years needing support daily? What does it cost? How could society respond?

What advice do you have for consumers about their future care needs?

Save money. Save money. Assuming you don't have the opportunity to have more children! Move into more adapted housing. Become active in your community to assure good supplies of home-delivered food, adapted housing, caregiver support, transportation, personal care, and coordination of it all!

Tom Burke
Senior Director, American Health Care Association (AHCA)

Why is there a drastic difference in people's perception vs reality?

There is not a lack of information about aging issues but there is a lack of knowledge on the part of the consumer about dealing with aging at various stages. Of course what a person knows about aging depends whether they are the one aging, or if it is a loved one, close relative or someone else farther removed. Often the choice of a care setting is based on the lifestyle of the caregiver, say an employed daughter with a family. Her decisions will be different from someone who can stay at home to provide caregiving services to a loved one, such as a spouse.

All too often people will only deal with needing long-term care when a crisis happens, such as a parent falling and breaking a hip or becoming ill. In these cases there is often a scramble to deal with the situation, which is the least preferred state-of-mind to begin learning about long-term care be it nursing care centers, assisted living, or home care.

When people seek information it is there - on the web at many sites that offer free information, from the federal and state governments that offer information and comparisons between care centers on the internet and in publications. Still, many consumers only deal with health issues at transfer and admission time -- when it is time for a loved one to leave the hospital after an acute care stay of at least three days (to be eligible for Medicare).

It is all too easy to defer being prepared by believing that it won't happen to me. But it does. And when it does, professionals in various care settings can work with knowledgeable consumers or low information ones. Professionals know that the typical citizen can't imagine themselves being 85 years old and needing nursing home care because he or she has multiple infirmities and requires assistance with several key factors of daily living, such as bathing, dressing, eating etc.

Ultimately, care center, assisted living, or home care professionals are the safety net for individuals needing care, or the families that love them.

What are the consequences for not being prepared?

The consequences of not planning for future care needs falls into the financial realm, it affects choice, and shortens the time available to make decisions.

Financially, lack of preparation is felt most by individuals with a modest nest egg and hard-earned assets, such as a house. People without assets will most likely be immediately eligible for Medicaid, which is a means- tested state and federal poverty program. If a person plans to do estate planning, it has to be done well in advance. Medicaid will look back several years for large transfers of assets and can disqualify a person from receiving Medicaid benefits for many years into the future based on these calculations. Some states allow Medicaid officials to seize ownership of property upon the beneficiary's death to recoup funds for the state.

Planning enhances choice. Having a family conversation (over a period of time) about a parent's care needs and including that person in tours of facilities is preferred. Another choice issue is choosing a care center in proximity to a family member or caregiver's home.

Procrastinators lose many of these opportunities. Instead, when a crisis hits, families scramble to find any local nursing home; hospitals may only give a few hours' notice to families of discharge by the hospital discharge planner and told to choose one in a few hours. A person may not have prepared a will, a power of attorney or an advance health care directive and these omissions can be devastating to the family.

How would you close the discrepancy gap?

Inertia, procrastination, and human nature are the enemies of preparedness for caring for an aging parent. And this is not just for Choosing a Care Center, but even for the family of a dementia patient who is cared for at home. Information is available in abundance. Estate planners, financial planners, and attorneys are frequently holding seminars on these specialty topics. Many people seek the advice of medical professionals and clergy. A common source of information about local facilities is friends and neighbors.

What advice do you have for consumers about their future care needs?

Objectively assess your situation or that of your loved one. Start the conversation about the future with aging parents now so everyone can agree on a course of action before the unthinkable happens.

Have several talks over time; avoid one-and-done scenarios. Go slow. Be patient with your Mom or Dad. Know that this is a scary topic where adults are talking about giving up some independence and control over their lives to adult children or others they may not even know. To extend the time an elderly person can stay at home, assess their living arrangement and make it age and health status appropriate.

Think inclusion. Take potential residents on facility tours and include them in meetings that relate to their health and future. Always treat a person as an adult and as you would want to be treated. Cooperation is better than conflict and confrontation.

Know that upon admission to a care center, most everyone has a set back and is initially upset with their situation, even if it was their choice. Adult children may have a feeling of guilt. It takes time to adjust and make new friends and feel comfortable. Families that are frequent visitors usually find that they no longer need to be caregivers and can focus on being sons or daughters and socializing with Mom or Dad. This is a welcomed change in status.

It takes 30 or more days but better times will arrive for everyone.

Dr. Bruce Chernof
CEO, The SCAN Foundation

Why is there a drastic difference in people's perception vs reality?

While there are many factors, the Foundation's national polling and focus group work shows that most people don't like to think about aging, and in particularly the likelihood of growing older with needs. Americans like to think that as we grow older, we will be vibrant and healthy, and then one day die peacefully in our sleep. As a result, many people choose to not think about, let alone plan for, this time of their life. In addition, many feel that meeting the needs of older loved ones is simply a private family matter. However, seven in ten older Americans will need for long-term care at some time in their lives, and 20% will need care for five years or more.

What are the consequences for not being prepared?

As a physician, I've witnessed firsthand how so many families are thrown into turmoil as an older parent or grandparent takes a fall, suffers an injury, and experiences a sudden health decline. Unfortunately, many people find themselves in the midst of a crisis and suddenly have to navigate an incredibly complex and fragmented system of care and services, patching together a plan of care without knowing where to go for help or how much it will cost. Furthermore, about 3 out of 4 Americans are not confident about being able to pay for their long-term care needs, which means that getting needed care can seem out of reach.

How would you close the discrepancy gap?

At The SCAN Foundation, we are working with our national media partners, policymakers, and various community partners to engage the public on these issues and encourage a broader dialogue so that people recognize that most of us will need some help as we grow older. We work to educate and inform policymakers and elected officials whose constituencies are aging, transform health systems that provide care and services to those with chronic illness and daily living challenges, and encourage media outlets across the country to ramp up the national dialogue on how older people seek to age with dignity and independence and explore the obstacles they experience. It's time for more open and honest dialogue about this issue in public spaces too - communities of faith, women's organizations, academic institutions - because we are all touched by this issue. Finally, working families need better tools to plan and pay for their future care needs, and this can only happen when there is a groundswell of public support and dialogue.

What advice do you have for consumers about their future care needs?

Americans of all ages can start having conversations with their families about what aging with dignity means to them, and what their needs and values are as they age. The SCAN Foundation developed a series of publications to serve as a roadmap to help people through this process. The 10 Things You Should Know series explores what older adults need to know about their later years, what resources are available in their community, and what conversations to have with their families about their wishes.

Donna Schempp
Former Director, Family Caregiver Alliance

Why is there a drastic difference in people's perception vs reality?

As you said, no one wants to think about slow declines, chronic illness or dementia. We all want to die peacefully in our sleep or of a heart attack and not have to deal with these other possibilities. Also, our culture prides itself on independence, and we all think we can remain independent into old age. There is also some belief, I think, that with the right diet and exercise, we will be able to be in control of our aging in a way that the generation that came before us didn't do or know to do. Or that we will be able to commit suicide and continue to have control if things get really bad.

What are the consequences for not being prepared?

The biggest issue is money. If you have enough money, you have options as you age. If you don't have any money, the system will help take care of you. The people in the worst place are those too poor to be rich and too rich to be poor. Few people realize the cost of being taken care of as they age. Without finances, your choices are limited and quality of life options are not necessarily available. The other piece, of course, is those who have not taken care of their health along the way now facing life limiting illnesses or disability due to things like diabetes, emphysema and other chronic illnesses that mostly come from life style choices that were made. They never expected this to "happen to me" and don't have ideas in place for what to do now. Most people end up "making it up" as they age and face issues, rather than having looked at the bigger picture and made plans and contingency plans.

How would you close the discrepancy gap?

Movies would be good; ones that show the real life aspects of aging, not just the death and dying ones or the vibrant old person ones. I think we need to have more opportunities for intergenerational interaction so that the age groups are not so separated that younger people don't know what to expect in old age. Doctors need to talk to their patients about long term effects of life style choices, not just treat people episodically, e.g. when someone is in danger of diabetes, they need to know about eyesight loss, neuropathy pain, amputation due to poor circulation, increased risk of Alzheimer's disease, etc. This is never talked about; people are told about getting their blood sugars lower and dealt with in the here and now. News shows and talk shows, particularly women's talk shows, like The View, should have this topic addressed every few months so it is in the public consciousness. 60 Minutes should do a segment on it once or twice a year. That is how it is seen by a larger group of people. It is the 40-50 year olds that you need to reach.

What advice do you have for consumers about their future care needs?

Looking at their long term care risks based on family history so they can predict at least a minimal level the kinds of things they might face. Living Well After 50 has a whole section on this. Having more opportunity to interact with older people will also bring it into focus. Getting architects and others to think about aging in place so that when homes are built, they are designed for older people to live there--pointing out those features will begin to get younger people aware that there are issues as you age. Having the medical profession talk about this with patients who are in their 40s and 50s.

Senior Advocates

Susan Baida
Co-founder and President,

Why is there a drastic difference in people's perception vs reality?

I am the co-founder of, a website devoted to caregivers facing the challenges of caring for an aging loved one, and I also live with and oversee care for my mother and my 3 young children. From my perspective, there are various reasons why perceptions of aging differ drastically from the reality:

- There is certainly lack of information and media coverage on the realities of aging. Many don't realize that it is mostly the norm that seniors will have either chronic illnesses and require long term care. Certainly websites like and eCareDiary are doing their part to educate on the importance of preparing for the future, but you don't see this covered in popular media and news. It's not a sexy topic in a youth-oriented American culture. I do believe that Gen Xers and baby boomers who are going through the experience of caring for an unprepared aging parent are learning the lessons and will shift this dynamic.

- Many people dislike discussing sensitive topics with their families or avoid it for so long that it doesn't get addressed until they are then forced to discuss it or the siblings have to deal with it amongst themselves. I've seen all too often how the discussion of long term care planning and assigning power of attorneys to one family member over the other can wreak havoc and tear families apart. This is where more information is needed to help families through these emotional issues around long term care. And the general public is unaware that professional assistance is available to help families.

- I also believe that many of our country's workers are struggling to make ends meet and living paycheck to paycheck that it is hard for them to think and plan that far ahead. Also, long term care insurance isn't even an option for the vast majority of workers when their first priority is to put food on the table.

- In some cultures, many seniors expect and assume that their adult children will take on the responsibility of caring for them.

What are the consequences for not being prepared?

I see so many tragic situations where unpreparedness has resulted in complete depletion of one's life savings, being cared for in a less than optimal nursing home situation, or the adult children's funds being depleted. I've also seen families torn apart over disagreements in end of life care because advanced directives were not expressed.

How would you close the discrepancy gap?

Certainly our country needs more media coverage on this as well as more grass roots efforts. Employers certainly have an opportunity to step up to the plate and help provide education and services through either Employee Assistance or Health & Wellness programs because the vast majority of caregivers in this country are employed.

What advice do you have for consumers about their future care needs?

Start gathering information starting with advanced directives, healthcare proxy, assigning a financial power of attorney. They should talk to people who've had positive and negative experiences with long term care and learn from those experiences. People need to ask themselves and lay out a plan for how they want to be cared for in the event they develop a chronic illness and are physically or mentally incapacitated. They should inquire with their employers if information is available on long term care and long term care planning. I would suggest visiting websites like ours to download advanced directives by state and learn more about long term care.

G. Spencer Schirs

Why is there a drastic difference in people's perception vs reality?

My experience has shown; people have a hard time accepting the inability to care for oneself. Time and again I have seen people, even in their 70's, have an attitude of never needing long-term care. Years ago, while in private practice, I attempted to introduce long-term care to those under 50, because the price is reasonable. Since it's less costly at that age, there is minimum reason not to have a basic coverage.

What are the consequences for not being prepared?

Simply put Medicaid and the hope of getting care. LTC is or can be an expensive product but the cost of not having it is bankruptcy and the surviving spouse can be left in a financial hardship. There are several topics clients do not want to talk about. From my observation, it requires facing one's mortality. The subject of LTC, Final Expense and Wills, Trusts and DNRs are topics that people want to avoid.

How would you close the discrepancy gap?

It's always education - an informed consumer is better prepared to face these issues.

What advice do you have for consumers about their future care needs?

Make a plan, although hiring a lawyer can be expensive, it is a small price to pay for peace of mind. Then ask your attorney for several recommendations of Certified Financial Planners as well as Long-Term Care specialists. If they tell you that they do it all in house, leave. If they only provide one recommendation leave. Shop around ask questions and make informed choices. I'd plug as a resource to locate service providers but sadly we only have a few attorneys. We do have every funeral home and Assisted living facility in the country so it's a free resource that does not harvest visitor data.

Steve Moran
Senior Housing Blogger

Why is there a drastic difference in people's perception vs reality?

I am kind of an industry contrarian about the 7 out of 10 number. For instance. If the day after I turn 65 I come down with the flu and my wife brings me a cup of soup, I have for the first time experienced my first episode of long term care by the studies definition. If it had happened two weeks before I would have just had the flu and my wife was taking care of me. What we really need to know if how many people over aged 65 will:

1. Spend more than 30 days in a nursing home.
2. Will spend time in assisted living/nursing home
3. Will receive long-term home health care.

I am particularly bothered by this study because it is misleading to the public. So at the end of the day, I think the public is closer to right than this study.

What are the consequences for not being prepared?

I don't think it is going to be a disaster. Families will figure out ways to cope. New options will evolve like cohousing and multigenerational housing.

How would you close the discrepancy gap?

Have the researchers paint a more accurate portrayal. Right now we are seeing the number of nursing home beds in this country decrease because of a lack of need. Further many of those who are in skilled nursing should have been allowed to die a long long time ago. It is not really living if all we are doing is putting nourishment in the top and taking waste out of the bottom. We need to eliminate the financial incentives for low probability low value end of life expensive treatment. We should never allow people with severe dementia or without any cognitive function be taken to surgery.

What advice do you have for consumers about their future care needs?

More than anything else. Think about and talk about how you want your end of life experience to be.

Michelle Seitzer
Writer, Editor, and Elder Care Specialist

Why is there a drastic difference in people's perception vs reality?

Long-term care as we know it today is quite different from even just 10, 15, or 20 years ago. I think part of the disconnect results from the fact that long-term care is still evolving -- both our perceptions and understanding of it, and the way it is delivered. Also, it's always easier to talk about long-term care for someone else other than ourselves.

What are the consequences for not being prepared?

It's hard to predict. You can't plan or prepare for absolutely everything, nor can you be sure you'll need any of the plans you put in place (or if you'll need a plan/solution you didn't make/prepare for). However, if you don't plan or prepare at all, consequences include added, unnecessary stress, family or relational rifts, caregiving shortages and major health care crises.

How would you close the discrepancy gap?

Continued LTC planning education and resources offered by healthcare professionals at every opportunity -- whether through appointment reminders or in conversation at the end of a visit -- may help, as well as education hubs and resource offerings in community settings (churches, for example). More media exposure wouldn't hurt either.

What advice do you have for consumers about their future care needs?

Start small. The 5 Wishes Document is a great place to start: outlining your five top preferences for care at the end of life sets the foundation on which to build the rest of your long-term care plan. After you've completed the document, share it with at least one other person.

Kathy Birkett
Registered Dietitian

Why is there a drastic difference in people's perception vs reality?

It may be that many people don't understand what a 'long term care need' really is. Many think that it means nursing home placement and don't understand the complexity of care needs before a facility placement is ever involved such as ADL needs and assistance with household tasks. Most long term care help is provided in the home not in a facility. Only 4% of the population lives in a nursing home.

As most of us age, our functional status will decline. We will all face struggles to meet all of our own needs and will need help from others either paid or family members. It seems that many are shocked when the time comes that they need help. Perhaps they are hoping for an outcome that doesn't involve needing care but that is unrealistic. The alternative is not what any of us want.

What are the consequences for not being prepared?

The greatest consequence of not being fully prepared for experiencing a long term care need is becoming unable to live our elder years the way we want. Those able to afford the care they need, either through savings, insurance or family help, are more likely to receive care in a manner that lets them continue living their lives. Those who cannot afford the cost of in-home care, medical costs, prescription drugs, and durable medical equipment will have to live how and where government care as the last resort provides.

As a population we are living longer which means that most of us will experience a need for long term care. Our nest egg was not designed to carry us through for over 20 years as it now has to be as the life expectancy is 78 years. We can't count on having all our needs met with government insurance alone. LTC insurance is no longer affordable for most people and many insurers have stopped issuing policies. Those who have LTCI policies are finding that it is only covering about 12% of their long term care costs according to data from AARP.

If a senior can't afford the care they need or doesn't have family who can step in to meet their needs, they often end up having to seek nursing home placement and accepting the benefits of Medicaid. This may mean not only leaving their home but also having little choice in the facility they enter and losing the future they dreamed of for their golden years. The loss of independence can be devastating.

How would you close the discrepancy gap?

People definitely need to understand the reality of aging and its effect on all parts of their life - medical, emotional and financial. Aging successfully and especially aging in place will take careful planning. Seniors need financial planning from a person who understands a wide range of options. Aging in place could mean a budget right now so that money can continue to be set aside for later. Understanding your health risks for development of chronic disease and making necessary lifestyle changes now to keep yourself at the peak of health so that you can prolong the physical effects of aging. Getting your legal documents in order, setting up a will, designating a health care power of attorney, and making end of life decisions including pre-need burial arrangements so that you can plan appropriately for the future.

Any way that seniors can get the information they need whether through media, printed literature, social media, or organizations will benefit them in the long run. What must happen is to motivate seniors to make changes and create a concrete plan. Just putting the information out there will not get people to espouse it for their own benefit. They have to see the value in making these decisions.

What advice do you have for consumers about their future care needs?

The first step in planning for future needs is to learn what those needs may be. Take a good solid look at your personal situation - health, finances, and goals. Are you living where you want to for the rest of your life, are you healthy, what are your future health risks, how is your retirement plan, how will you pay for future healthcare needs, what are your personal end of life wishes and many other questions need to be answered honestly. Discussions with the family about how these goals will be achieved can help seniors formulate a plan. Seek out the advice and experiences of others to ensure expectations and assumptions going into the plan are realistic. We need to put time, thought and resources into our own aging because it won't come naturally and be successful.

Laura Mitchell
Consultant on digital health and aging

Why is there a drastic difference in people's perception vs reality?

Nobody is actually aging, or at least nobody will admit it. Aging is something that 'only our grandparents do'. Boomers have not accepted that they too may need some additional care, like their parents. This is not an aging crisis, but more of a healthcare crisis. Younger populations greatly care and are concerned about the impending needs of their parents, resistance to support and the high costs associated with it. Our culture as a whole has been driven by acute needs and crisis management versus proactive and preventative care.

Cue the "I've fallen and I can't get up" versus the "I don't want to fall, what could I do to mitigate the fall before it happens" mentality. If we don't get some of our boomer population to stand up and embrace the beauty and grace of aging and healthcare, we will bankrupt our country. Enabling technology tele health, social engagement and activity monitoring solutions will help to preserve independence and empower individuals to be active in self-care and chronic disease management. Ignorance and denial will never be a winning healthcare and/or aging strategy.

What are the consequences for not being prepared?

There is a glaring and obvious consequence of failing to proactively address concerns, resulting in unnecessary accidents and Emergency room trips. If we treated and respected our aging population in the same way we treat the children we love, we wouldn't wait for the accident to happen before ensuring preventative safety. Also, the life stage talks should be an ongoing discussion and should start long before acute care is needed. Failure to communicate will result in caregivers acting as blind advocates, unneeded tension amongst family members, and an underserved loved one. This can be particularly problematic for end of life desires and requests.

How would you close the discrepancy gap?

We need trusted organizations and advocacy groups to find new ways to embrace aging and healthcare, being graceful yet truthful. I am not recommending we do a fear-based campaign, however, it is critical that we address the elephant in the room. Aging should not be a sentence and should instead be a gift, an honor. There need to be some public health campaigns that really engage people into the issue and let everyone know that it's okay to admit naturally aging and remove stigmas with some of the symptoms of aging (e.g. memory issues, mobility concerns, vision or hearing loss).

What advice do you have for consumers about their future care needs?

Don't be afraid to embrace aging and longevity as a gift that not every human is granted. Recognize changes that occur with natural human progression, however, look to existing resources, enabling tools and technology solution that can make life better as we age and healthcare changes occur. Don't wait until the crisis happens before putting on the seatbelt. Be proactive and enjoy the ride!

Richard Wexler
President and CEO, Points of Life, LLC

Why is there a drastic difference in people's perception vs reality?

Most have not even thought about this point in their life. Based on age there are many more important things going on. The new job, the vacation to Maui, the new car. Most Boomers don't think they will ever age. Hula Hoops forever! More mature folks think their spouse or kids will just care for them at home, no big deal! Many still think Medicare will pay for care.

The bottom line, there really is no issue. Why worry about it?

What are the consequences for not being prepared?

Caring for someone seems easy, it is not! You balance your own life, your children, your spouse or partner, your career and a loved one(s) that needs help. What happens when that loved one lives miles if not many states away? Many just say, "I'll figure it out if it happens".

Care costs a great deal. Most have no idea, how much we are talking about. This is true whether it is in a community or at home.

We plan our trip to Maui, the flight, the rental car, hotel, restaurants, beaches. The trip will last a week, 10 days. Care can last many, many years!

Many families struggle to communicate every day, add the need for care and the struggles multiply significantly! Caring for a loved can tear a family apart

Which brother or sister is giving up their life to care for Mom?

How would you close the discrepancy gap?

We need much more national exposure about this issue and more education. Aging is complex, education truly alleviates much of the complexities. Talking about this issue can be hard for many but it needs to happen. Points of Life provides this education per our Conversations about Aging.

Families need to wake up and realize we are aging and a need for care will very likely happen. There is a very good chance care will be needed for multiple family members.

What advice do you have for consumers about their future care needs?

I would strive to learn about this point in their life. 95% of us will need some form of care, whether it is an hour, years or something in between. I would try to engage their family in a discussion about aging in general and care specifically. If they struggle doing this, reach out for help to accomplish this goal. Aging is reality, it must be talked about, understanding someone wishes and the realities around those wishes, are key. Putting a Family Plan in place is critical!

Christina L. Selder
Co-founder, Consumer Advocates for RCFE Reform

Why is there a drastic difference in people's perception vs reality?

While the trajectory of aging for any individual is unpredictable, advanced age makes all of us vulnerable and being vulnerable can be quite a scary concept. But more intimidating than simply reaching advanced ages, is to specifically discuss aging in terms of long-term care. Needing long-term care signifies a major step towards end of life, something a great many of us would prefer to postpone or ignore altogether. This understandably creates an aversion to pre-planning for our long-term care needs, but I submit that given the current "Greying of America", this discrepancy between perception and reality could be considered a mere structural lag to be narrowed over time.

Greater Need, Greater Options, Greater Awareness

In previous decades, those 75+ represented less than 4% of the population and to fill the need for long-term care meant largely two things: (1) living out one's days in a family home or (2) nursing home care. Fast forward to present day, however, and we find a number of influences that are changing this status quo. Gains in life expectancy (the 75+ cohort is now 6% of the population), the baby boom bubble, the sandwich generation and significant advances in medicine, technology, policy and, even financial investments, are swiftly bringing us to a point where we now have far more elderly with far more options.

This is the first time in American history where we, as a nation, are experiencing the realities of long-term care forced upon our everyday lives in such volume. This momentum and pressure is simultaneously affecting both perceived and real need. For instance, as the 76.4 million baby boomers watch their parents' age, experiencing firsthand the ups and downs, they will be compelled to consider their own care and comfort in later life. As more well-educated women become caregivers and need care themselves, they will most likely take to coordinating their final years as meticulously as they coordinated their families and careers. And, as senior services and associated marketing campaigns abound, savvy consumers will increasingly understand the need for due diligence in order to ensure their safety and satisfaction.

This is the first time we can expect to spend this much time in our 'third age', so we are still coming to understand what it takes to successfully age in the 21st century. As a greater number of us begin to personalize the aging experience, we will likely see perceptions about long-term care transform into expectations. To fulfill these expectations, we will need to actively consider and plan for our long-term care needs. Based on my professional experience, I believe this anticipation and level of involvement among consumers is already occurring and over time we will begin to tangibly see the noted discrepancy between perceived and real need narrow.

What are the consequences for not being prepared?

Today, disability and disease mean something different than in previous decades--where once we could expect the relief of death, we now can expect a reduced quality of life for an extended period of time. This suggests that long-term care planning should be more than just securing support in the last few years of life.

Long-term care planning starts with a lifelong commitment to a healthy lifestyle to increase one's active life expectancy. Not preparing in this way could result in a greater number of dependent years and reduced quality of life. But as aging is inevitable, we should all expect a reduction in our capacity at some point. Failure to anticipate and prepare for all facets of our long-term care needs--physical, mental, social and financial--will expose us to greater risks unnecessarily. The consequences for failing to establish a comprehensive plan include (1) a reduced, and less coordinated support network when you need it most, (2) limited care options due to lack of knowledge or unaffordability, and (3) ultimately, less safety and security (i.e. higher likelihood of falling through the cracks).

How would you close the discrepancy gap?

Current efforts to promote consumer awareness and to encourage public and private discussions about long-term care must continue. However, the current focus of these efforts is largely limited to the impending need of long-term care. The actual use of long-term care services for any individual is unpredictable. To see the discrepancy between perceived and real need narrow more rapidly, the discussion about long-term care must be moved from a hypothetical scenario in the minds of consumers to one with greater context.

The biggest risk to consumers of long-term care services is the fragmentation that currently exists within the long-term care continuum. Consumers need to be educated on (1) how challenging it can be to navigate the various service options, payer systems, legal issues, etc., (2) how advanced planning can significantly reduce the likelihood of "falling through the cracks" and can significantly improve quality of life and safety when they are most vulnerable, and (3) the breadth and various combinations of long-term care service options available to suit their personal preferences and changing needs.

The ideal formula to maximize such an effort would include the establishment of a committed coalition of key, long-term care consumer advocacy organizations to create a nationwide or statewide initiative (complete with objectives, measures, slogan, and literature), with each organization localizing the initiative by consolidating and incorporating local gaps and solution- based resources with regard to long-term care. A broad but localized movement such as this would help consumers understand why attention to long-term care is essential to ensuring their individual comfort, health and safety and how to move towards action.

What advice do you have for consumers about their future care needs?

To get better prepared for your future long-term care needs, CARR, a San Diego-based consumer advocacy organization, recommends consumers:

1. Talk: Have extended and ongoing dialogue with family and friends about fears, expectations, preferences, and absolutes.
2. Take An Inventory: Take a look at your current location, and ask yourself what will it take for you to stay there? Your "location" could be your own home, but should also expand to include local services, facilities, family support, etc.
3. Research, research, research: While you are still able do your own homework, ask and answer your own tough questions and then record those results in the event you require others to carry out your wishes (i.e. POAs, Wills and Trusts, Advance Healthcare Directives, facility options, end-of-life care, etc.)
4. Predict & Save: Try to plan for both the best case and worst case scenarios to avoid a crisis situation with regard to your long-term care needs.
5. Secure An Advocate: Above all, make sure you have someone you trust (who has both courage and conviction) to advocate on your behalf. The current long- term care system is not setup in favor of consumers; when your voice can no longer be heard, you will need someone who can affect meaningful change on your behalf.

Lori La Bey

Why is there a drastic difference in people's perception vs reality?

Denial - We are a society that thinks life is supposed to be only about perfection and independence. That's what we are sold and pitched by advertisements. Long Term Care is viewed as end of life vs. living life well. Until companies are willing to invest in a brand change or maybe even a name change to help shift perceptions, I don't think people will invest in the policies. The image has to be one of living well, living smart, being able to tap into supportive services as needs change in one's life. The showing of positive benefits to enhance life is a must to shift perceptions.

What are the consequences for not being prepared?

Devastation for some families. Living in substandard housing, choosing between buying medications, food and services for others. In some cases increased health concerns due to additional stress. Others are forced into bankruptcy, still others pool funds or share housing to support someone they love. The range of effects of people not being prepared is far reaching. It goes way past the borders of one's home and reaches out into the community.

How would you close the discrepancy gap?

Education and remove the stigmas associated with Long Term Care.

I believe this has to be done in a multi-media fashion along with in-person education, consulting and conferences for the public. The base work on this shift must include at the minimum the following players to work in collaboration: Those selling policies, senior housing, state and local initiatives, financial planners, elder law attorneys, accountants, social workers and even doctors.

What advice do you have for consumers about their future care needs?

Investigate your options. Get educated from multiple angles so you have all your bases covered. Build a team to protect your interests: Adult Children, Attorney, Accountant, Financial Planner, Doctors, Social Workers, Real Estate Agent... Take control of the rest of your life, instead of letting life happen, crisis arise and giving your power of decision-making away.

Jill Thomas
Managing Partner, Clinical Compliance Concepts

Why is there a drastic difference in people's perception vs reality?

When a person is moved from a hospital to a Long Term Care Facility (Nursing Home), patients and or families often believe they should stay in the hospital. The hospital staff then tells the family and/or patient that they are better and they do not need to be in the hospital any longer. Unfortunately, this sets up false expectations, they may have heard they are better and have forgotten or do not wish to acknowledge the fact they may never be better. Hospitals are for acute illnesses, while some nursing homes deal with acute needs, their focus is generally long term needs. Therefore, the belief is they will be getting better which frequently is not the case.

What are the consequences for not being prepared?

If you are not prepared financially, you may have to go to a nursing home as opposed to the luxury of being cared for at home. In addition, not having sufficient funds may limit your choices of nursing homes and locations to go to.

How would you close the discrepancy gap?

Definitely more public education is needed. I think it would be great to have a sitcom about real life in a nursing home.

What advice do you have for consumers about their future care needs?

Take care of themselves while they can. By, managing any medical or psychological issues they may have. Do all the recommended strategies, e.g., exercise, and maintain your brain, eating right. Complete advance directives for the end of life. In addition, consider the possibility that they may live for many years under the care of others. With that acknowledgement they will need to prepare a comprehensive list of their lifestyle, history, values, preferences and routines. Whether you have money or not, you cannot receive the best care if the care giver does not know who you are and you are unable to communicate. For example

Dale C. Carter
Founder and Owner, Transition Aging Parents

Why is there a drastic difference in people's perception vs reality?

Unless a person comes face-to-face with the aging crisis of a loved one, the subject is simply not on their radar, not a priority. The typical perspective (at least from the people I meet) is this. "I have always taken care of my health. I eat organic, I exercise each day, I stay engaged in my career, family and the world. I am doing everything I can to stay healthy. I have no health issues." It is beyond their comprehension that one day dementia could suddenly strike them and that they would need long term care. I know of several Ironman triathletes who are in end-stage Lewy Body dementia. These personal stories need to be shared. The general public needs to see real people and hear their stories.

What are the consequences for not being prepared?

Depending on the state in which one lives, the lack of planning and need for Medicaid spend-down, can wipe out a spouse's life savings. In Indiana, a spouse gets to keep his/her own IRA, home, one vehicle. In Maryland, this is not the case! A spouse may only keep up to $113,640 (in 2012.) So, a person/family is at the mercy of state law. The financial consequences can be truly devastating for the remaining spouse and their family.

Another great consequence is the loss of choice and control over long-term care placement which ultimately affects quality of care and quality of life for the person. It saddens me greatly to think that the choice of end-of-life care can be taken away from an individual.

How would you close the discrepancy gap?

I would say more media exposure. I just saw a news segment where a financial planning company invested in software that would give a person the face of themselves at age 70, 80, 90. Seeing their aged face increased that younger person's perception of need for planning for retirement.

Why not do this to show that same face/person in a nursing home setting. Each person needs to be able to see their future self in such a place. Otherwise I don't think they can or will want to think about their late life situation.

Also education from an early age. As a society, we need to do more to raise the status of elders. In so many other cultures, elders are an important focal point of respect, wisdom and handing down of stories and traditions. Our "old old" just don't need to have their bodies cared for. Geriatrician Bill Thomas is a big advocate of "caring for soul." This can start in our schools at an early age. I recall back in early 1960's when we all received science class education that smoking could cause death. This was absolutely drilled into us. Get this information now into school curriculum or as special programs through the PTA organizations. The children of today are going to have a huge burden as caregivers of tomorrow given our aging demographics.

What advice do you have for consumers about their future care needs?

Right now, go and speak with an asset preservation attorney and your financial planner. Learn the laws of your state or state that you plan to move to.

I just had these conversations after my husband was diagnosed with Lewy Body disease. And, for us, "it is what it is."

Recognize that dementia and other diseases can strike without warning and no one is immune. These diseases that require long term care placement cross all demographics, age, gender, race, educational. No one is immune. So, today reach out, assess your situation with professionals and assume you too will need long term care one day in the future.

Judy Berry
Owner, Dementia Specialist Consulting

Why is there a drastic difference in people's perception vs reality?

I do believe that in the last several years, with the huge change in focus from nursing home environments, most consumers think that the rapid expansion of home care & hospice services available and the opportunity to be living in their own apartment in residential care actually will provide whatever they need vs before people were looking at skilled nursing home care as the only alternative. I believe perception of most consumers has changed considerably and the disconnect may come from the fact that now many don't consider staying home with home care and hospice services or living in their own apt with home care services as a need for long term care if they can stay OUT of the nursing home.

I think perception has changed on the part of the consumer, brought about by significant improvements in medicine, treatments and cures for many diseases that not too long ago would have required a person receive skilled care in a nursing home. I believe this has created a false sense of security, surrounding declining health issues and extended life expectancy. I believe this a consumer perception change not necessarily with the professionals in the field of aging.

What are the consequences for not being prepared?

Studies and surveys over the last 25 years show that consumers have not been as readily concerned with saving for retirement, and paying for long term care insurance, especially through the last 10 years with the economic crisis that has caused many to dip into retirement savings just to save their homes and provide for their families as the job market crashed around them. Although now there is a big push on strengthening the healthcare workforce, raising wages for the critical front line staff positions, and trying to create a career path, I believe it's too little too late.

There is another huge economic crisis looming around the corner, since people my age (70) far outnumber the available younger persons who would be the caregivers for my generation.

How would you close the discrepancy gap?

Yes I do believe there is a drastic need for targeted consumer, professional and staff education that average people can afford. Much of the training offered is priced far above what the average person can afford. Providers need to commit to higher staff ratios and ONGOING support for their staff. Frontline staff ARE the ones really responsible for the quality of life of those in their care. Those in management need to realize who is responsible for their success and recognize them for the amazing job they do. Mandatory training needs to include meeting the emotional & spiritual needs of each individual in addition to their physical needs. Most of the staff are undertrained, underpaid and not committed because they are not afforded the recognition of a profession in their own right . This MUST change

Family Involvement is KEY. We all need to be thinking of ways to fill this upcoming huge gap in available services. Care of our loved ones is a family responsibility and I believe more will have to be cared for at home like is done in many other cultures. I also believe somehow we need to encourage families to stand up to the system, that has through the years turned into a money making machine, and demand that their loved ones are taken care of appropriately and are once again guaranteed their human rights will be restored. Scandinavian countries treat medicine and care as necessities NOT a business aimed at maximizing shareholder profit and meeting budgets at any cost!!

We must somehow create the media hype necessary to bring to light and to shock the general public into action, by exposing the sad conditions that many of our seniors are forced to live under, especially low income seniors, where their basic human right to dignity, choice and the highest quality of life possible, is being violated on a daily basis. Identifying and meeting the Emotional needs, validating feelings and recognition of each individuals value & humanness right until death, is critical to quality of life. We need to create a power organization like PETA. We could call it PETE! PEOPLE for the ETHICAL TREATMENT of ELDERLY! As a culture I believe we must take back responsibility for ourselves and our families.

What advice do you have for consumers about their future care needs?

I believe consumers need to start thinking proactively about how they want their own future to evolve. They need to look into options available and the find the funding they will actually need to support their needs. . Recognize the value of their life experience and use that experience to advocate for themselves and others to make sure we all can have a life of purpose. My motto has always been


When I started the Ranch at 55 to try to develop a model of specialized dementia care that would meet emotional & spiritual needs in order to prevent the behavior issues that caused my mom to be kicked out of 12 places in 7 years for her aggressive behavior. She had to live out her life medicated into compliance, because providers would not staff at appropriate levels and refused to spend the money on training and ongoing staff support.

At 70 I just started a consulting/training business so I can share what I have learned over the last 15 years developing the Lakeview Ranch Model of Specialized Dementia Care for which I was awarded a 2010 RWJF Community Health Leaders Award.

Meral Clarke
Founder and Exec. Director, EngAGE Senior Advocacy

Why is there a drastic difference in people's perception vs reality?

I believe most folks who aren't well-versed or familiar with caring for the elderly, or are not elderly themselves, simply do not possess a frame of reference regarding this issue. As our population ages, more people will become familiar with various aspects of caregiving as well as the needs of the senior population including affordable healthcare, housing, and transportation.

What are the consequences for not being prepared?

Unfortunately, if families are not prepared, and many are not, they will find themselves ill-equipped to take care of family members in need; financially as well as emotionally. People today are living longer than ever before and we need to ensure that our parents and grandparents are receiving the care they require. It's not about children taking in their elderly parents any longer. Most families are comprised of two or more individuals working full-time and cannot readily leave their income-producing jobs to take care of a family member. Conversely, the majority of assisted living facilities are beyond the financial reach of the average American family. The Aging in Place movement is attempting to address these needs but unless there are substantive and concrete changes on the legislative level in most states, we will see a burgeoning senior population unable to access needed and oftentimes, life-saving, measures. It truly is a matter of survival. And, the economic cost is staggering.

How would you close the discrepancy gap?

Education and exposure are vital, no doubt. However, we need to reinforce and enhance these measures by providing affordable alternatives for those individuals who have too many financial resources to qualify for Medicaid but not enough to live out their golden years in comfort and safety. ESA is advocating for a sliding scale, based on income, so our mothers and fathers and grandparents do not have to choose between purchasing their medications or turning on the heat in winter. As a society, we are failing this growing segment of the population, miserably.

What advice do you have for consumers about their future care needs?

I suggest they plan family meetings where all members of the family come together to discuss their needs and formulate a plan of action. Everyone should have an Advance Directive (Living Will), Will and/or Estate Plan, and Powers of Attorney in place which can be activated when needed. Many folks are fearful of this subject matter but it must be addressed while all parties are competent and able to make their own decisions without coercion or under duress. The sooner families come together to work out aspects of the aging scenario, the better off they will be. Legal and financial planning are necessary and could potentially avoid disaster moving forward. Do it and do it now. Before it's too late.

Care Providers

Alex Chamberlain
Administrator, EasyLiving Home Healthcare

Why is there a drastic difference in people's perception vs reality?

No one likes to think that their body or mind will deteriorate over time. It not just an individual issue of denial, it is our health care system as a whole. We begin training our minds from a very young age that we are healthy and okay; only when "something" happens do we go see a doctor. There is now a shift toward preventative medicine as more people (and our system) realizes this flaw. Yet, when it comes to aging or chronic care needs, everyone thinks they will be ok or that they have family to take care of them. Without having prior experience with it, perception will always be different than reality.

What are the consequences for not being prepared?

Unfortunately as an owner of a home health business, I have seen the good, the bad, and the ugly. I have seen families' quality of life disappear due to being unprepared for the challenges of long-term care.I have seen loved ones and family members never speak to one another again because they weren't prepared and began fighting over everything. This can range from one sibling taking on the burden of care and feeling resentful of other siblings (and/or the non-caregiver siblings becoming angry over decisions or perceived influence of the caregiver) to fights over money and healthcare decisions. When families have fewer options due to lack of preparation and financial constraints, it just makes conflict and hard choices more likely.

I have also seen clients' wishes not being met, because a lack of planning took away their options. By being in denial, we unfortunately don't prevent things from happening; we just prevent our ability to have much or any control. On the flip side, I have seen it done right many times. There is no one right way to provide care, but the families who navigate the challenges successfully did their homework, got help from quality professionals, and availed themselves of the choices that were best for them.

How would you close the discrepancy gap?

I personally believe that the Baby Boomer generation will blaze the trail for future generations. Boomers have been perfectly fine with outsourcing and planning and I believe they will set the standards (and make all the mistakes) that future generations will learn from. With the growth of the internet and social media these subjects are getting more press and being shared with friends (stories usually mean more to people than stats). Because of demographics, many Boomers and their children have experienced long-term care's effects up close and personal, so they know the downside of not being prepared.

Large corporations are adding "care management" services to their HR benefits because they are seeing the toll it takes on their employees with lost productivity and stress. As a society we are becoming more proactive with our healthcare. Technology has paved the way to make getting information and help easier than before. This will continue to close the discrepancy gap.

I think it's also useful to reshape the discussion. For many people, the best motivation is to focus on doing this for your family. Yes, you may never need it, but just like buying life insurance, you do it as a gift to your loved ones so you don't leave them in a difficult situation.

What advice do you have for consumers about their future care needs?

Think about what you want as you age and then learn a little bit about the realities. Sure, you always want to live in your own home, but what will you do when you can't take care of it anymore? What will it cost you to get help? Do you want your daughter bathing and toileting you? Can a family member give up a job and their own retirement savings to do this? What does Medicare provide? What do retirement facilities cost? You can do research on the web to get some background, but ideally take the time to meet with professionals to ask questions and get personalized advice.

Our care managers have begun engaging more people proactively through our care consultations where we talk through future planning. Sometimes this is done in conjunction with their trusted advisor, like a financial planner or estate planning attorney. Together, the professionals can be especially effective in creating plans that cover your bases. If you understand the value of planning with your financial advisor or attorney, care planning should be given the same priority.

As a starting point, we have written a number of blog posts on our sites, and also created a Comprehensive Aging Wisely Checklist. The checklist has a Preparing Ahead section which also covers practical tips like organizing your paperwork and medical history (it can be found at

Laurie Miller
President, Apple Care and Companion

Why is there a drastic difference in people's perception vs reality?

This is very complicated, as you know. A lot of people bury their head in the sand and prefer to ignore the future and the reality of aging...whether it is healthy aging or unhealthy aging. The anti-aging movement has not helped the situation. People are bombarded with messages that youth (or apparent youth) equals health and the message that old equals illness. People don't like to admit they are aging or it will look like defeat. Most older Boomers did not witness their parents and grandparents age in long term care situations. They died from cancers and other health issues that are routinely treatable in this day and age. The older Boomers are unprepared for what long term care looks like now. As the adult children deal with their parent's long term care situation, I believe they will take notice for themselves.

What are the consequences for not being prepared?

I see this all the time in my non-medical home care agency. People are shocked that in home care, unlike home health care, is not covered by Medicare, that it is an out of pocket expense. They are surprised with the lack of affordable options in senior housing. They are surprised that assisted living is private pay. This lack of preparedness can lead to rash decisions that usually don't work out. The poor first decision often means a second and more stressful and expensive move or decision. Being prepared allows one to think things through and make better decisions.

How would you close the discrepancy gap?

Education and awareness are critical but so is reality based thinking. People need to understand that aging is okay and not a negative. As a society, we should show more respect to our elders and discourage anti-aging messages. The message should be that aging equals wisdom! People need to prepare not only financially but also in healthy lifestyle choices. People need to take control of their own health and eat right, exercise, stop smoking and continue working. So many seniors are suffering from chronic debilitating diseases that could be controlled with healthy lifestyle decisions. Planning ahead with healthy choices will save money and help keep seniors out of costly long term care settings.

What advice do you have for consumers about their future care needs?

People need to be their own advocate. They need to review their finances and lifestyle choices. They need to face the facts that they may need assistance and need to figure out what that may look like for every situation is different. Will family be able to help, can they afford long term care insurance, do they qualify for veteran's benefits, are their advance directives prepared and a host of other questions. Understanding Medicare and Social Security is also important because most people think that their long term care needs will be taken care of by these two programs.

Julie C. Westcott
COO/ Administrator

Why is there a drastic difference in people's perception vs reality?

Education is the short answer.

I am a true believer that the future of the industry (LTC) is in community based and home based care and not SNF settings. I feel primarily the difference in perception comes from a fear and a lack of knowledge or understanding of what the options and what available mechanisms there are for support.

A healthcare professional's definition of a LTC need will be completely different than someone that has little or no knowledge of the industry. The reality is, when you say Long Term Care, most people automatically assume nursing home. Which we all know is not the only option on the menu. There are many factors and variables that come into play when determining what level of need will be required. That term nursing home creates for most people, a negative feeling and impression which is permanently embedded in our minds from experiences that individuals remember and associate with elders in their past.

People are simply not educated on how developed the LTC industry is and what exactly that term encompasses.

What are the consequences for not being prepared?

Financial Burden and unnecessary stressors for everyone involved.

Not being prepared for long term care needs has many negative consequences. Without any long term care insurance, savings or trust funds , the future LTC patient or resident will be left with little or undesirable options for care or living arrangements. The cost of LTC will continue to rise. Income from pensions and retirement alone will not be enough to provide.

Individuals that are not financially prepared will end up having to live with other family members, (creating other issues) or they will end up spending down any resources they do have, so they qualify for low income options. It's the wonderful Catch 22 Medicaid scenario. Many times, in this situation home becomes a small room, shared with a stranger in a SSI bed or a low income housing unit. This becomes the only option available.

Without resources, the financial burden alone is many times placed on the children or the caregivers of the individual. Many children supporting their parents end up remortgaging their homes, taking out loans, sometimes even having to use their own children's college funds to support the unexpected cost of their parents care needs. People don't realize the consequence of not preparing for their future. Parents don't realize the potential burden it may place on their children.

How would you close the discrepancy gap?

Again, Education. Anything that works to educate the consumer.

Provide information at wellness appointments, waiting rooms in physician's offices, send out flyers. The baby boomers are going to inundate our communities over the next 20 years and no one is prepared for the financial burden this is going to create.

There is a huge government focus on ensuring affordable healthcare for all. Why not also encourage people to invest now and participate in the funding of their future needs? People don't even realize Long Term Care insurance is available. It should be something as common as life insurance and health insurance, but it is not. I cannot begin to tell you how many times I have been discussing finances with families and they say I wish my parents were more prepared or I wish I had known about LTC insurance. Consumers that do not have to go through this type of experience with a loved one do not realize that these options are even out there. Unfortunately, the ones that do experience it are recognizing that at that point, it's too late.

What advice do you have for consumers about their future care needs?

Have a financial plan.

Contact a broker or agent, begin investing in your future now and look into LTC insurance options.

Review your life insurance policies for coverages, update your will.

Involve your children in your plans so there no surprises and expectations are set.

Educate yourself on all the different levels of care that are available and the variables of possible needs.

Know your family's medical history, is there a possibility of dementia or Alzheimer's needs, disabilities, heart issues etc. This all will play a huge part in what type of LTC setting you may require and financial burdens vary depending on that need.

You may never know exactly what will happen but you can educate yourself and be prepared.

Shelly Sun
CEO and co-founder of BrightStar Care

Why is there a drastic difference in people's perception vs reality?

People do not want to consider the inevitable - they prefer to think that everyone ages healthily and will remain independent forever. As much as we would like it to be, this is just not the case. Everyone ages differently, and there are a thousand different factors that contribute to how healthy and independent you remain.

What are the consequences for not being prepared?

The consequences that result from not preparing for long-term care are found in the level of quality. When it comes time to think about long-term care, it's easy to feel lost and overwhelmed by the quantity of options available, and it can be challenging trying to figure out how to discern the quality difference among those options. The key is to do the research ahead of time so that when the time comes for you or for your parents to make a decision, you know all of the options and the differences in the levels and types of care -- and you've had the right conversations to identify which options are the right options.

How would you close the discrepancy gap?

Too often, you will find that information on long-term care services is hard to come by and it quickly gets overwhelming. At BrightStar Care, our care teams led by Registered Nurse Directors of Nursing are experts at listening and providing person-centered solutions for families and their loved ones. Those looking for care for themselves or for their parents should feel as though the highest quality care is readily available and best suited to fit their needs. The reason my husband and I founded BrightStar Care was because we were looking for quality care for his grandmother and saw an extreme gap in the availability of quality care -- care that we felt we could trust. That experience drives our mission of providing A Higher Standard of Care in communities across the country.

What advice do you have for consumers about their future care needs?

We suggest thinking about the topic sooner rather than later. It seems that the issue sneaks up on people, and the sooner you plan for long-term care, the better. If it is for a parent, start by having the conversation about what they personally want. Be sure to consider all of the options like staying in the home with the help of professional caregivers or going to a care community. Every person will want and need something different so it is best to find something that suits their needs, specifically. A company like BrightStar Care can help you begin the conversation to see what type of care is needed and will help you go from there. It is never too early to start thinking about long-term care and the sooner you begin talking about it, the less stressful it will be for all parties involved.

Lisa Blaskie
President, Innovative Personal Home Care

Why is there a drastic difference in people's perception vs reality?

I believe "denial" is the primary reason Unless there are long term health issues we all think we are healthy and it won't happen to us. Many of us just don't want to consider the issue. That is especially true of the "baby boomers" In healthcare we deal with two common types of people

1. Those that we know are going to need LTC and plans need to be made by the government, family and insurance companies to address that for sure outcome.

2. The rest of the population is going to need creative education follow-up by providers reaching all of the population including their families.

By doing this we will address the immediate and the future generation needs and we should be better prepared

What are the consequences for not being prepared?

Severe emotional, physical and financial drain on governments, families, caregivers, insurance and the general public

How would you close the discrepancy gap?

More education, media involvement and commercials reaching out to all of the general public. This is not a senior problem it is every ones problem. Insurance companies need to provide incentives for people to stay healthy such as reductions in cost for preventative medicine

What advice do you have for consumers about their future care needs?

Live more healthy lives, diets, exercise and less stress situations. Media education as this is a universal population problem

Daniel M. Parker
President, Right at Home of Sacramento

Why is there a drastic difference in people's perception vs reality?

Today approximately 85% of care provided to seniors in their homes is provided by family members. Our culture is changing and has been changing since World War II to a mobile society, meaning families are scattered all over the country making care support to family members difficult if not impossible. The market place began filling the void in the late 80's and early 90's with new home care services that had typically been only provided by government programs. This new industry has expanded rapidly over the last 15-20 years providing a range of services to clients in their homes, and with the advent of new technology a combination of hands on care and technology tools for family monitoring.

I believe the reason that there is a drastic difference in how people perceive what they will need to be prepared for their own long-term care is because the entire landscape of how this care is now being provided has changed fundamentally. Just in the last few years legislative changes related to health care and health care employment rules have significantly escalated the cost on aging in place in one's own home. Even those who have been planning for the eventuality for many years are now finding themselves with resources that will fall far short of the new reality in terms of the cost of care in their own home. The loss of the Personal Care Attendant overtime and sleep time exemptions in California has more than doubled the cost of 24 hour care almost overnight, from an average of $250 per day to over $500 per day or $182,500 annually. Most long-term care policies pay between $125-$250 per day meaning after all of the planning people have done, that planning will now fall short. However, this is not just a California issue, the Department of Labor is seeking to do the same thing for the rest of the country and the only reason this has not yet occurred, is lawsuits from industry organizations like Home Care Organization of America (HCOA). These suits have, for a time at least, halted that effort.

As an agency operating in California, I have seen the planning devalued to a point that their plans for aging in place will have to be changed dramatically. Our office is in Sacramento, CA which is the state Capitol and there are a great number of retiree's from the state government that purchased long-term care insurance through the CalPERS system. These policies once would have paid a very large share of the cost of home care, but have now been so devalued by the state legislature that the entirety of their plan for aging in place has to be reconsidered. For many, who are already retired, there is no time to make changes to deal with the changing landscape. Basically, they are stuck facing a decision to move into residential facilities to reduce the cost of their care. Given that there is already a shortage of care home beds, and there are projections of even greater shortages as the baby boomers retire, the question is how will the care needs of all of our citizens be met?

What are the consequences for not being prepared?

I believe the greatest consequence will be a substandard experience in the care and environment when they can no longer take care of themselves. In my experience, over the last seven years in the home care industry, people want to stay in their homes through their passing. You often hear stories of families being asked to promise not to place Mom or Grandma into a nursing home. I lived this experience with my mother-law which was a motivator for me to open my own home care agency. I strongly believe that the best and most healthy way to age is in one's own home.

How would you close the discrepancy gap?

There has been a near explosion of information on planning for end of life care on the internet, television, and in print. Too often people do not want to think about or deal with planning for the end of their life.

The pressure will continue to build and the senior care and health care communities will continue to provide the opportunities that people need to educate themselves regarding end of life planning. Regardless of the drumbeat on this topic in our society there will be those that fail to plan.

Many of the changes wrought by our state and federal governments have been counterproductive with regards to helping people to be ready to manage their own end of life care. It has been very sad to speak to families that as we explain the changes in the legislative landscape to them, they are shocked to find what thought was going to be a good plan, is no longer reality. Without the governments help to ease the pressure on spiraling costs of both medical and non-medical care due to changes brought about through their legislative efforts; the future end of life experience for many American's will not be as they would have wished.

What advice do you have for consumers about their future care needs?

If you are a young person, planning for end of life care must be an integral part of your planning for retirement. Relying on Social Security is risky and at best will only maintain a subsistence type of existence. If you are nearing retirement, you need to re-evaluate your end of life planning, expecting costs to continue to rise. Getting professional advice on your financial, retirement, and end of life planning is not just for the wealthy. As a matter of fact it is even more crucial for those with less resource to properly plan for the future. Find a financial planner that you like and trust and meet with him/her annually to review your progress and adjust as required by circumstances.

Take responsibility for educating yourself on what will happen when you can no longer drive. This is often the first major loss of independence for people and signals the beginning of the need for assistance whether that is from family or from an Agency. What will that cost, how will you pay for it if you need to bring in outside help? If family will be involved with your care, do they have the right legal authorization to represent you? You may want to meet with an attorney to plan for providing power of attorney for financial and medical matters. If you do not have family that can assist when you are no longer able to manage your own affairs, make sure there is someone designated to make decisions on your behalf when you are still able to do so. Allowing this to happen to you after you are no longer able means that your wishes may no longer count. Seek out a fiduciary that can insure your wishes are known and respected.

Financial Professionals

Alex Dunn
Independent Insurance Broker Agent

Why is there a drastic difference in people's perception vs reality?

Great question! This perception is one that is very real and encountered often. Unfortunately, it is human nature to think that unexpected medical issues, illness or accidents will not happen to them. In addition, a large percentage of the populous believes that these events only affect the elderly. While it is true that more than 70% of people living past Age 65 will require some level of Long Term Care assistance at home, in a nursing home or assisted living facility, it is less known that 41% of the population UNDER Age 65 will need similar Long Term Care services.

Compounding the difference between perception and reality is the wide spread confusion or lack of education on what Long Term Care coverage itself is exactly. It is often confused with Short Term Disability or Long Term Disability insurance, which are benefits commonly provided by employers or paid for by the employee with pre-tax dollars through their payroll. These are very different products used for different reasons or situations.

What are the consequences for not being prepared?

Due to advances in technology, medical research and improved living, the life expectancy of humans is on the rise. In short, we are living longer as a whole. It is common knowledge that women typically live longer, on average, than men. In fact, approximately 70% of nursing home residents are women. Therefore, the consequences for not being prepared for long term care can run the gamut.

On one end of the spectrum, there is a small percentage of the general public who are affluent, can afford the best long term care and retain control of the decision on where they receive this care. On the opposite end of the public spectrum, you have a large percentage of individuals with very low fixed income. These individuals often end up utilizing or depending on the Medicaid system to provide, administer and cover the cost of their long term care. These low income individuals and their families often have very little say or control over where they receive long term care. It is common for these individuals to be sent to a facility many miles from their families, due to a lack of space or required medical help. In the middle of the spectrum, you have the larger segment of the public who may have the financial means and assets to initially cover the cost of a family member's long term care, which can vary from a few months to many years.

However, this can have a devastating impact financially, emotionally, and logistically. Family members often find themselves being put into the caregiver role, either in their own home or that of the family member needing assistance. The family member(s) providing the care can also find themselves paying out of their own pocket for their family member's care. And who wouldn't? However, we encounter people every day that are faced with this financial pitfall because they were not prepared.

How would you close the discrepancy gap?

As a local broker insurance agency specializing in the Long Term Care industry, we are licensed, trained professionals who view our expertise as a community responsibility. We are on a constant mission to close this gap between the public perceptions and harsh realities surrounding the ever-increasing need for Long Term Care protection.

We are actively involved within the local and regional community where we live and work, providing no obligation, one-on-one consultation and organizing educational seminars about Long Term Care. We also participate in various community health fairs and tradeshows, reaching out to individuals, companies and service provider organizations, as a whole. By educating the public and creating more media exposure around Long Term Care, our agency's hope is that by providing education and expertise on these important products and services, it will help families pay for the care they need, where they want it and when they need it.

What advice do you have for consumers about their future care needs?

Our advice is simple and straightforward. This is a need which a majority of consumers will experience at some point in their lives. Everyone knows someone (i.e. a family member, friend or co-worker) who has needed some level of health care or supervision at home, been moved to a nursing home, entered an assisted living community or been relegated to a hospice facility.

Contrary to popular belief, age itself is NOT the only reason for this need! With the influx of more Baby Boomers entering into their retirement years, we are seeing an increase in cases of cognitive impairment, such as dementia and Alzheimer's, as well as strokes and other brain injuries among a wide age range. Since Long Term Care protection can be viewed as confusing, it is often dismissed, ignored completely or deemed a lower priority than say, homeowners insurance or car insurance. Therefore, it is often needed after the fact, when it is too late.

The recommended advice for individuals, families and companies is recognize the need is real, purchase a Long Term Care policy and retain control of their future care. With a few minor changes on some expenses, most folks can find a way to incorporate Long Term Care insurance protection into their monthly budget without really changing their lifestyle. Like a lot of important insurance, such as Life Insurance, Long Term Care protection will almost always cost less if you buy it when you are younger, healthier and can qualify.

Kai Stinchcombe
Founder and CEO, True Link Financial

Why is there a drastic difference in people's perception vs reality?

Let's face it, nobody likes to think about aging. Families are thinking about choosing where to go to college practically from the moment they're born, and yet when you're moving into a retirement home it's like it caught you by surprise - everyone goes home for Thanksgiving one year and it's like, "Holy cow, mom's OLD! When did that happen?"

What are the consequences for not being prepared?

Well, it's going to be one of two things - somebody steps in, or nobody steps in. If somebody steps in, typically a family member, it's going to be an uncomfortable situation on both sides. And often the emotional aspects are a bigger deal than the financial aspects - it's bringing your daughter in to play a role that you didn't necessarily anticipate and that you both might have mixed feelings about. And if nobody steps in, even worse - it's a situation where you might face tough choices you didn't anticipate and may not be able to maintain the quality of life you imagined.

How would you close the discrepancy gap?

I think the biggest thing is a change in how people talk about aging and how it's perceived. Until people are comfortable with the fact that they too will age, you're not going to prepare. And the media lionizes youthfulness, associating it with being attractive, sharp, hip, active, and so on. There's this dread around it.

What advice do you have for consumers about their future care needs?

Talk to your family! Get on the same page now about what resources are available, how you want the finances to be managed, and what the plans are for all of the different things that might happen along life's crazy journey. And bring in the experts early, like a financial planner or a care manager, to make sure your plans make sense.

Raymond Lavine
Owner, Lavine Long Term Care Insurance

Why is there a drastic difference in people's perception vs reality?

It used to be that Long Term Care Insurance was sold as nursing home insurance and progressed to where products are comprehensive for the home or various care centers.

This was a product which was sold to older people in their 60's or 70's.

Underwriting was not as difficult as it is in 2015 and beyond. In addition, the presumption that most would use the benefits for a few years and then die.

Lots of statistics and facts were provided to people with the probability of them needing some level of care. Many purchased but many did not because they decided, it isn't going to happen to me.

There are other excuses:
1. I have sufficient capital or cash flow to pay for care
2. My children will take care of us
3. Everyone in our family dies young
4. I don't like insurance companies, they are crooks
5. I heard or read that the companies do not pay the benefits after years of paying premiums
6. I have never had or know anyone who has needed care giving
7. I will end my life
8. My wealth or financial planner told me I had enough capital to pay for caregiving expenses. I have no idea what it costs and neither does my wealth manager but I don't need it.

The risk model and marketing is to provide over and over and over and over again statistics and the public isn't interested. If they were, it would be an order taking business with call centers to take orders as they do for automobile, home, and term life insurance.

The way it should be presented is to have a consultative engagement rather than a fact-based conversation.

People will own a long term care plan if they accept these ideas 2 consequences:

1. The emotional and physical well-being of loved ones is impacted. What this means is impairments eventually become all-consuming to family, friends, and loved ones.

a. The best way to keep families together is to keep them apart
b. Providing care to chronically-ill family members makes family emotionally and physically ill and exhausted.

2. Paying for care disrupts your plans to keep future commitments

Paying for care causes a reallocation of resources starting with income. Successful people live all or close to their income in retirement as they did during their working years. Shifting income to pay for care has a direct impact on a person's ability to keep financial commitments such as:

a. Helping a child who has not made the best decision in life
b. Providing care for a child with special needs
c. Continuing obligation to a former spouse
d. Helping pay for a grandchild's education
e. Lifestyle expenses, e.g.. vacation homes, travel, philanthropy, membership in organizations, and other lifestyle activities.

What are the consequences for not being prepared?

It will probably disrupt your commitments and plans towards the future. Asking people to pay with their cash flow (income) for their lifestyle and care giving is double counting.

1. It will disrupt your estate planning.
2. Your children and family who you promised to love and provide will now have to postpone or give up their job and career opportunities.
3. Families of those children who are providing care will feel abandoned.
4. It will affect their savings, their retirement, their emotional well-being.

How would you close the discrepancy gap?

People are in denial about care giving. I ask people to observe their environment when they travel, go shopping, are at a restaurant, or other activities. Observe that many people are with another person, are using canes, walker, wheel chairs. They have portable oxygen tanks and other devices attached that you may not see. Or people are frail but want to be driven for shopping, travel, and other activities. I like to think of extended care benefits as freedom benefits. It provides people with the freedom to do their activities with a little help from their friends.

Extended care benefits is about you, your family, your money, and your commitments towards the future. Financial writers, the media, writers and news programs have written and provided videos stories which tell of a risk based but seldom write or speak about the consequences. Being Alice just won the Academy Award to Julienne Moore. It is the story of a woman who has the on sought of cognitive issues.

Too often the need and who should own LTC benefits is simplified to those who are not affluent but those who do not need Medicaid.

My approach is that these plans are of value:

1. If you are in reasonably good health - these plans are medically underwritten. No health, no plan.

2. You need to have sufficient sources of income to pay the premiums to cover a percentage of potential care giving costs. In the past, it may have been all of the costs - now if a plan will pay for most of your home care and 60-70% of care facility, you have a quality plan.

3. If you believe that you have a few million dollars or more and that will pay for your care giving here are questions that I would ask:

a. Do you have sufficient liquidity to cover the costs?
b. Have you considered the tax consequences of selling qualified or lost based assets?
c. Market timing is another concern. What would it mean to your estate if you sold in a down market?
d. Lost investment opportunity on these assets
e. People would but they would be sad if they had to sell the family home or some possession which is important in people's lives in order to pay for care giving expenses.
f. It is not what LTC benefits is what it accomplishes to fund a plan.

The middle class and affluent need to understand the consequences of not having a funded plan to pay for possible care giving. They are used to owning insurance and LTC benefits is another insurance which transfer the risk from their cash flow to the insurance company should care giving services be needed.

Have the conversation with your family about your care giving needs. To begin the conversation go to and use the starter kit which offers useful ideas with how to have the discussion.

What advice do you have for consumers about their future care needs?

Financial Planners, Wealth Managers, and other advisers would benefit with collaborating with an agent who is focused and knowledgeable about LTC - extended care benefits.

It used to be that there were many plans available and underwriting was not as thorough as it is now. There are fewer companies offering LTC plans. Gone are relaxed underwriting and actuarial assumptions which support unrealistic pricing. In its place are underwriting and pricing that bring financial discipline. There are a variety of plans which are still available and there are plans which can be designed to provide benefits even if they have a number of health issues.

In the event you needed care services for an extended period of time, which of your assets will you sell in order to pay for care?

Extended care plans provide freedom to live a useful life whether you live at home and need care or by choice or circumstances you desire to reside in a care center. It allows people to travel on cruises or on trips, visit friends, participate in activities which are interesting and pleasant. There are also plans for the more affluent - linked, hybrid, and asset based plans which provide both life insurance to beneficiaries and/or extended care benefits if you need care services whether at home or in a care center.

Stephen Forman
Senior Vice President, Long Term Care Associates

Why is there a drastic difference in people's perception vs reality?

We can turn to the field of behavioral economics, a favorite of mine is

This disconnect is called the optimism bias, and is not unique to long-term care. As humans, not only do we underestimate the chances of bad things happening to us (eg. getting divorced, being diagnosed with cancer), but conversely we overestimate the odds of good things happening to us (eg. that we'll be blessed with gifted children or that we'll live exceptionally long lives).

Here's the kicker: even in experiments when subjects were shown the correct odds of experiencing positive or negative life events (like winning the lottery or dying in a car crash), when they were subsequently asked to rate their own chances of experiencing these events, the optimism bias prevailed. People absorbed the stats for the good news and made the necessary adjustments, but completely tuned out the negative news!

Turning back to the LTCI industry, we see the same thing when we try to reach consumers using statistics. If we say 3 out of 4 people will someday use long-term care services, it's perfectly natural to reply, "Oh, 3 out of 4 people need long-term care? Then it will be those 3 people over there. I'll be the 4th person who's as healthy as a horse!"

What are the consequences for not being prepared?

This is another topic I've written about before, in an article titled "Long-Term Care Insurance and Medicaid: Why 9 out of 10 People Make the Wrong Choice." (article source:

The consequences are very simple. If you do not choose an insurance company, one will be chosen for you. I call it "The Medicaid Insurance Company", and our LTC service and delivery system in this country is dependent on it, even though we wish we weren't. Because of how thinly the program is stretched, Medicaid underpays providers $24/day less than the cost of providing care (2014 was a record). Utter dependence on such a low reimburser puts enormous pressure on providers to offer high quality care. It is hard to recruit and retain staff, and difficult to find institutional investment. Among the other consequences are cost-shifting onto private payers (which leads to higher LTC insurance costs), notorious problems of access (eg. over 400,000 individuals on the wait list for Home & Community Based services across 39 states), and institutional bias (eg fewer opportunities for Assisted Living and Residential Care).

The Medicaid Insurance Company is also very difficult to make plans around. Our Big 3 Entitlements are over $100 trillion in the red (infinite horizon), so when we forecast which services will be covered in the future, and what the eligibility criteria might be, it is reasonable to assume they will be less generous than today. For consumers who have the good health and financial means to take control of their own destiny, I recommend they make their own plans.

We always say, you don't have to have long-term care insurance, but you DO need to have a plan for long-term care.

How would you close the discrepancy gap?

The tobacco industry hung around as long as it did because it had powerful interests promoting pseudoscience. Nowadays what's more important than accuracy is publicity: we've witnessed how a preponderance of experts can settle an issue, but a vocal minority with a microphone can indefinitely keep the debate alive. I would argue that LTC insurance hasn't suffered from lack of awareness. Dozens of states have run Own Your Future campaigns, the federal government promotes LTCI to its employees, we're over a decade into LTC Awareness Month, and Social Security statements have been sent to hundreds of millions of Americans since 2008 warning us that Medicare does not pay for long-term care. Any financial advisor worth his or her salt now recommends LTC insurance as a retirement protection vehicle one should review. No one says it's for everybody, but it's a basic part of life stage planning like life insurance, a will, or a POA. The debate is settled.

Here's the problem: we've got to pull out by the roots the skeptics and deniers. Look no further than this rant sent to the New York Times (source: The falsehoods and misinformation in this letter are rampant, but worse than that--they are damaging and have real consequences. Essays like this letter can be difficult to reverse--a minority opinion with a microphone that reaches hundreds of thousands more people than I can reach in a year.

What advice do you have for consumers about their future care needs?

You needn't feel rushed, you needn't feel stressed, but you should begin your research sooner rather than later. Fortune favors planners, who have many more--and more affordable--options, than those who postpone.

Don't believe the hype--the news is filled with "Man Bites Dog" (see stories in order to sell papers. And finally, although you've been told to check the ratings of your insurance company (AM Best, etc.) there's a more important decision than this: that of your agent. Not only will this individual help simplify what is perceived as a complex decision, but he or she can also play a significant role at claim time. Claims are where the rubber meets the road, after all, so make sure you ask your agency what kind of experience they have in this regard.

Patricia Bennett
President, Longevity Planning

Why is there a drastic difference in people's perception vs reality?

I think that is human nature to always think of ourselves as being young and capable. We can accept our parents are aging. We may know of a friend with a serious illness or a neighbor who was injured in an accident. We hear on the nightly news about a famous person battling a well-known disease, yet when our feet hit the floor in the morning, we still feel invincible. The good news is that attitude gets us out of bed and keeps us going. The down side is that denial of our own mortality keeps us from planning ahead.

People need long term care all around us - but we still have a hard time imagining that we could be one of the 40% of working age adults that need long term care under the age of 64. When we see Roger, a 55 year old leaning against a cane, we immediately think knee surgery. We don't think of a stroke. Most people would be shocked to know that one third of the 700,000 stroke victims each year are under the age of 60.

When we see Ruth, we see the kind woman down the street. What we may not realize is she is now being cared for by her husband because she has dementia. She is part of our neighborhood. We don't equate her to the estimated 5.2 million Americans who had Alzheimer's disease in 2014. With 8,000 baby boomers are turning 65 every day, America is aging. While this doesn't have the same shock value as a house fire, there is a hidden toll that caregiving and long term care is taking our lives.

What are the consequences for not being prepared?

First, there is the emotional toll of coming to grips with your changing health or that of a loved one. Whether you are facing a physical or a cognitive decline there is an emotional adjustment that must be made. No sooner are you struggling to come to grips with these new limitations, you then very quickly are faced with the financial implications as well. Most people aren't aware that neither group health nor Medicare or Medicare supplements pay for extended chronic care. These policies were designed to pay for acute care, the type that most often occurs at the hospital or doctor's office. What they don't pay for is extended home care within the home, any type of assisted living, or anything beyond 100 days of skilled care in a nursing home. The only other program that pays for long term care is the Medicaid program. This however, is a means based program which means that you have to spend your assets down to your states poverty level to qualify for benefits. Most families fall somewhere in the middle. They don't have enough assets to self-insure, but they have too much in assets to qualify for Medicaid assistance.

With the average cost of care in excess of $75,000 per year, they soon find themselves quickly burning through even the best laid financial or retirement plans. The one thing they were missing was a longevity plan. We are all living longer. Those extra years come with a price tag. It isn't just a financial cost that is born by the family. Just ask anyone who has been a caregiver. Whether you live with someone who needs 24 hour supervision due to dementia or you are the daughter who makes the hour commute three times a week to help out her parents, there is a physical price to be paid. But families do it, day in and day out. When you love someone you do what needs to be done - no matter the cost. The high price the caregiver often pays is with their own health.

How would you close the discrepancy gap?

Professional advisors, employers and the media all play a key role in getting the message out to consumers of the importance of pre-planning. Long term care insurance is definitely not for everyone. It depends upon your age, health, assets and income. But, everyone can start having the conversation with their loved ones about where they would like to receive care and how they plan to pay for that care. You can ask your financial advisor to run projections on what the cost of care will do to your retirement plan. You can talk to your attorney about importance of having healthcare and financial powers of attorney in place should you not be able to speak for yourself someday. You can talk to your accountant about the tax deductibility of a long term care plan. A long term care specialist can show you various different companies and the types of policies that are available. The National Association of Insurance Commissioners publishes a Shoppers Guide to Long Term Care that makes comparing policies much easier for consumers.

Employers can also help play a key role in getting information out to employees about the importance of planning for long term care. With one in four workers caring for an elderly parent, many companies now offer employee assistance programs. The National Alliance for Caregiving and the MetLife Foundation reports that workers who care for elderly relatives cost U.S. businesses about $34 billion annually in absenteeism, replacement costs and lost productivity. In addition, many employers are now being proactive by offering discounted long term care policies to their workforce. These policies can be offered to employees without any employer contribution required. The full cost of the policy is paid by the employee. While there is no direct cost to the company, it can be considered productivity insurance for the business. If I am a 40 year old employee and I talk to my 60 year old parents about their long term care planning, I may not have to quit my job to take care of them. Likewise if my spouse or I need care, the plan I purchase today can make all the difference in the years to come.

What advice do you have for consumers about their future care needs?

Long term care policies have changed dramatically since first introduced in 1967. Most policies today cover all levels of care: home care, assisted living and nursing home care. How they do this is quite different from contract to contract. Some policies have premiums which can increase over time. Other policies have guaranteed premiums. Some policies only cover one person, others are designed for couples. Some policies pay unused benefits to your heirs, while others do not. You can talk to your tax advisor as to if the policy you are considering is tax deductible. Some states offer Partnership Qualified policies that give additional asset protection if your policy meets certain minimum requirements. The most important thing is to do your research. While you don't want to rush into a decision you also don't want to live in denial. Change is inevitable. The more planning you do, the more you can face the future feeling confident and prepared. Start those conversations today. Talk to your family. The aging population and long term care is a silent national crisis that needs to be heard.

Authors and/or Speakers

Caryn Isaacs
Professional Patient Advocate

Why is there a drastic difference in people's perception vs reality?

I call this the elevator talk. When I am leaving the hospital, nursing home, assisted living facility or a home with aides, children of my clients say some variation of this, If I get to need that kind of care, just shoot me! The problem is that in some cases, the need for long term care arises suddenly, caused by an incident like a fall.

But, in most cases, as with dementia or memory loss, people have a hard time understanding or facing the progression of the disease. People think that they will need to get put in long term care or die. The lack of insight into the disease process prevents them from facing the reality that most people get a diagnosis years earlier than when their symptoms become truly debilitating. Where once the patient or family could not imagine accepting help, they usually have a change of heart as to what is important to them when the only option is to get help or suffer.

What are the consequences for not being prepared?

Today, even someone with a million dollars, who has a major illness that requires a medium to high level of care, will only have enough money for a decade at the most. The difference between what I can do to help a client who has prepared with long term health insurance or one who doesn't, is heaven and hell, even for those with substantial savings. The cost of home care vs. facility care is about the same. In either case you can quickly run through the money you thought you would be using for a comfortable retirement. By having long term care insurance paying for part of the costs, you won't have to turn to government assistance where your options for care and living arrangements will be very limited.

How would you close the discrepancy gap?

I think the information is out there, but people, even senior services professionals don't want to face the facts. I see better alternatives for living arrangements, technological improvements in home health delivery, care sharing and social media as the best hope for a change in the way people think about aging. There will be a natural progression to more efficient and cost effective ways of delivering care, just as there has been from hospital style nursing homes to assisted living. Ideally, universal health insurance would be expanded to include options for chronic care, but without that there will still be better insurance options for young people to opt in to long term care insurance programs through the exchanges or through private companies.

What advice do you have for consumers about their future care needs?

Everyone needs to fill out a Health Care Proxy and Power of Attorney form. This will start you thinking about what might happen should you have an illness or incident that could cause you to require long term care, even if you are still a young person. I have a quiz you can use to help to determine if the person you are designating to speak for you is the right one. The younger you are when you purchase long term care insurance, the cheaper it will be for the remainder of the time before you need to use it. If you are purchasing a life insurance policy or putting money into a retirement plan to protect your family, consider adding a long term care policy to your monthly payment.

Joy Loverde
Author, The Complete Eldercare Planner

Why is there a drastic difference in people's perception vs reality?

We tell people not to smoke, and they do. We tell people not to overeat, and they do. We tell people not to shoot heroin, and they do. Obviously, reality is not a powerful enough motivator when it comes to making good decisions.

Perhaps the messenger is the problem. Pushy sales people, ineffective advertisements, and government warnings among other information vehicles have a history of turning people off.

What are the consequences for not being prepared?

The entire family can be wiped out financially, emotionally, and otherwise. That's a high price to pay for keeping your head in the sand.

How would you close the discrepancy gap?

For starters, I question the premise that the consumer is dead wrong as the title of your article suggests. An attitude of this nature is a problem in itself. Over the past four decades, I have interacted with thousands of elders and family caregivers who are in denial about everything under the sun. Consequently, I learned early on that in order for me to succeed with them, I must start with their reality, not mine.

The question then becomes are the experts willing to fine-tune their relationship and communication skills, and practice patience for the long-haul? Many experts think that selling someone else on the concept of long-term care should be a slam-dunk sale, and it's anything but.

What advice do you have for consumers about their future care needs?

Take a walk through several assisted-living communities. Ask residents if they ever thought they would end up there. Ask them how their families are holding up. Also ask residents what they would do differently if they had the chance to do anything over when it comes to planning for long-term care.

Tami Neumann
Executive Producer and Host, Conversations in Care

Why is there a drastic difference in people's perception vs reality?

Denial and Fear come to mind as the root causes of this drastic difference in perception. We all want to think that we will live forever and not need care. We will spend lots of time comparing wines, cars and homes, but not this. If we do not think about it and prepare for it, it will not happen.

What are the consequences for not being prepared?

Preparing yourself and your family or personal designee, is important. If they or you are not prepared for the future, even in the most basic of ways this can cause confusion, regret and last minute decisions.

Having to make a decision when you are pressed for time may lead to inappropriate or inadequate care, Which could lead to bigger problems in the future. Including additional moves, or additional visits to the hospital.

How would you close the discrepancy gap?

My first and initial, thought is to provide education, however, I think that we need to look at this differently. What are the learning styles, is this something they are more comfortable learning and understanding in the comfort of their own homes? Those are a few of the questions I would ask before creating and providing education.

I do believe that more media exposure is needed, but this also needs to be framed in a way in which we not only catch their attention and provide a place for them to go. This also needs to be provided in a way that is free from the pressure of needing to buy or use something.

Currently, most of what we are learning about LTC is from commercials for Namenda and Lawyers looking to make a quick buck. I would love to see PSA announcements that lead consumers to the bloggers, podcasters that are telling their stories, or bringing you the stories that others have to share about their experience.

Peer education to me is where it is at. We are seeing more people that have been through the experience and sharing their insight as a client or patient. This type of education is worth its weight in gold.

What advice do you have for consumers about their future care needs?

I suggest to take it slow.

Ask yourself some initial questions. (Looking at - best possible outcome. Not needing any care. What does this look like to you and then also look at the worst possible outcome. If you need care what does this look like to you.)

Do a google search.

Find bloggers that are talking about their experience

Look for podcasters that are talking about these topics, ask them to provide the information that you need.

Keep a note book of your research.

Share this information with the people that you love, so that they understand your wants when you need the care.

Start taking tours before you need it, and take your loved one with you. This way they know what you like, even if they cannot make that same choice because of location, or needs. They will then have an understanding and can do their best to get the best possible fit for you.

Eleanor Feldman Barbera, PhD
Author, Founder of My Better Nursing Home

Why is there a drastic difference in people's perception vs reality?

It's a basic human tendency to be overly optimistic and think, "It won't happen to me. In addition, we don't often see people receiving personal assistance because they're being cared for out of sight -- at home or in LTC facilities. This makes it easier to ignore the likelihood that we'll become one of the 70% of individuals who will need long term care at some point in our lives.

What are the consequences for not being prepared?

As a psychologist in long-term care, I'll focus on the mental health aspects of this question. People are emotionally unprepared for the experience in many ways, such as needing physical help from others, relearning tasks like walking in rehab, relying on family members to take care of finances, etc. It can be incredibly stressful, especially if they didn't prepare for the possibility that this could occur. My book, The Savvy Resident's Guide, addresses the emotional and practical aspects of a long-term care stay so that readers experience less isolation and upheaval.

How would you close the discrepancy gap?

As the Baby Boomers age and more people are dealing with eldercare decisions, it's becoming a societal issue as much as a personal or family issue. Media exposure is increasing because of this demographic shift, with movies such as Still Alice and Amour, columns such as The New Old Age section of The New York Times, and many other outlets that focus on aging issues. We're all looking for better options than the ones that currently exist. As we as a society develop more choices and more suitable ways to support our elders, it will become less daunting to imagine, discuss, and prepare for the years in which we'll need help from others. It's much easier for people to prepare when they know they can choose from among several reasonable choices than when the options are limited, frightening or nonexistent.

What advice do you have for consumers about their future care needs?

We can assume that it's more likely than not that we'll have a period of time in our lives when we'll need help. It's much easier to prepare in advance when we have more control over making the decisions than to wait until a health crisis forces decisions and/or necessitates others making decisions for us. Some things readers can do to prepare include:

o Downsizing, so that you can choose a manageable home (without steps!) in a place where you want to live and can make connections with neighbors and community organizations

o Make adjustments to your current home so that it's more elder-friendly -- better lighting, no throw rugs to trip over, grab bars in the bathtub, bedroom/bathroom/kitchen on the ground floor, etc.

o Investigate possible shared housing arrangements so that you have support at home

o Talk to your family members about advance directives, health care proxies, and all the tough stuff so that you have more control over the decisions in your life

Care Managers

Rhonda Harper
Founder and CEO, Penrose Check-in Services

Why is there a drastic difference in people's perception vs reality?

When it comes to prevention and inevitability, humans tend to error on optimism and invincibility: It only happens to them, not me. Thinking about losing our mobility and our mind is more than we can take alongside managing our day to day lives. Why worry now anyway? By then, scientists, doctors, senior care experts, and technologists will have solved whatever issues there are with needing or using long-term senior care.

The problem is that the future is getting here sooner than we thought. There are no pending social or scientific miracles, no technological breakthroughs, few senior care innovations, and limited shifts in preventative behavior. Just people living longer, a social security and Medicare system getting sicker, and a younger generation ill-equipped to manage the daunting task of fixing long-term senior care.

We look at the good-looking smiling faces in the senior care brochures. The happy people actively participating in life. We marvel at the timber beam architecture and the amenities, wishing we could live in a country club environment. We drop mom off, hoping, no believing, the fantasy that marketing departments have created. On the way to the door, realism hits as we see the far-away stare from an aging woman, someone's mom, parked in her wheelchair. We notice the dank smell of urine and the stains on her clothing. We hear her faint cry asking to leave. Deep to our bones, we didn't want to know.

What are the consequences for not being prepared?

The lack of societal preparation for long-term care is devastating. We are facing a catastrophic shift downward in the standard of living for the majority of people in the United States. Social security won't save us. Our kids won't house us. And, our savings won't cover us. We risk state-institutionalization on a massive scale.

How would you close the discrepancy gap?

There is no magic solution, no silver bullet to engage and awake the aging masses moving closer to long term care. The problem is that the entire social construct is built on aspiration, not reality:

- Financial investment firms will continue to show the brilliant days of retirement walking on the beach with the one you love. They will not show the 85-year old languishing in a skilled nursing bed needing $8500 a month to survive

- Innovative product companies will continue to market and sell assortments of helpful aides to help you cope and lead a normal life as you age, complete with satisfied, thriving seniors in the marketing materials

- Politicians will continue partisan debates over the future of Medicare, Medicaid, health care, and social security - not the harsh realities of what citizens really need to be doing now to protect their own futures

- Senior Care Communities will continue to expand Disney World / Country Club fantasies through even more elaborate complexes and marketing - showing the happy, athletic seniors looking like they are in the prime of their life

The advertising association needs to take this on as an issue, every bit as seriously as they did Drug Abuse and AIDs.

What advice do you have for consumers about their future care needs?

Consumers need to do four things:

1. Demand reality - from marketers, senior care communities, politicians, and financial planners
2. Save for retirement AND save for long-term care
3. Begin to communicate with your loved-ones about your expectations and needs.
4. Put together a plan.

Melora L. Jackson
Dementia Care Trainer, MS Dept. of Mental Health

Why is there a drastic difference in people's perception vs reality?

I think a part of it is denial. Our culture is so focused on preserving our youth, that to think about growing old is a foreign concept for many. Even for those who are thinking about long term care, the perception seems to be that long term care consists of nursing homes, losing all power over one's life and decaying. Very few know what all the options are, how to financial plan for long term care possibilities.

What are the consequences for not being prepared?

Medicaid, loss of choices for optimal long term care and a major reduction in quality of life.

How would you close the discrepancy gap?

I think a strong public awareness campaign about long term care is a start, but I think there needs to be a more work toward fighting ageism.

A coordinated effort of media, aging service agencies, governmental agencies like NIA, elder law services, long term care providers, etc. would be ideal. Another avenue would be to get financial management services who advertise about planning for retirement to include planning for the possibility of long term care, as well.

What advice do you have for consumers about their future care needs?

Get your legal and financial planning done/updated. Seek out information about long term care options and encourage folks to record their preferences for long term care.

Nancy Ruffner

Why is there a drastic difference in people's perception vs reality?

Perception and reality rarely converge and this is certainly true when it comes to the need for long term care. The murky waters separating the two are rife with fear: fear about death, or life, or money or familial issues, past experiences, lack of knowledge and more. Who would not wish to kick the can down the road?

I may work with a family whose need is that of education and coaching. Others are being hindered by fear (the emotion) and the denial (often the result of fear). In some families there are power struggles or jockeying for position and control as to who will or must initiate or carry out care. A politician may downplay a societal need so that taxes will not be raised in an election year, choosing to downplay any issues for their own jockeying or party gain. (Would that they would use planning for our aging parents as a platform, eh? Look at all the voters, and the good that may come from Starting The Conversation).

Our clients come from and are influenced by many factors. As professionals we must recognize these influences. Understanding the dynamics helps us to have conversation and to provide coaching that is meaningful for the other party. We are able to bring folks along, to help them navigate murky waters and obtain that best outcome we all seek.

What are the consequences for not being prepared?

We see a lost opportunity when folks don't prepare for long term care. Ironically, a senior's reticence may seem justified by wanting to retain independence, not to not relinquish control. However planning IS control, by action. This is how one retains power, calls the shots, has say so, can design or impact fate.

It is important to note the role of conversation at this point. Because The Conversation (planning) is rarely held among families its members do not have the opportunity to grasp this vantage point. Individuals and families alike need to talk and need to remain open about taking a look at shifting old perspectives that may no longer be serving them.

The consequences can be the chaos, the crisis, the stymie, the shoot-from-the-hip (and you may be a bad shot), the take-what-is-available. Reaction not action. There is no power in that, there will likely be undue stress, fewer options, the opportunity for error and poor decisions. And it stings to later realize that calamity was invited by not planning. Folks give away their power when they do not plan or when a decision, conscious or unconscious, is made not to address this responsibility.

How would you close the discrepancy gap?

A big part of advocacy, every bit as big as direct work with clients and their families, is raising awareness. I am compelled to start The Conversation, as I teach or present, through use of written or spoken word, in social media, water cooler talk, whenever. Advocacy can be quiet and strong. I will gently challenge a viewpoint or provoke thought by asking questions of a client or physician. When the situation calls for it I will bang the drum or sound the alarm.

Media can help with raising awareness. I am nearly always welcome discovery, enjoy learning about folks working through challenges, that's part of what I call normalizing aging. Folks will learn to recognize an issue and determine some solutions, kind of an if this-then that. Aging can become more assumptive, more matter of fact and solution-oriented in its regard. On the other hand with greater volume from and frequency delivered by the media we will likely experience increased noise that we must then as consumers learn to sift and navigate. If we are smart we will also recognize that it's possible the messages might be altered for personal or business gain (Buy this, Live here, Ask your doctor for this Rx, Hello I'm a Movie Star and you should do/get/buy this, today).
Talk. Think. Ask. Learn.

What advice do you have for consumers about their future care needs?

Build your team. Educate yourself and those you love. During your study or while in your school of life you may either sift through the noise yourself or learn who will know the answers when you need them. Oddly, it is not just the answers you need to learn, sometimes it is formulating the questions and where to carry them.

Find your Trusted Advisors, partners. Learn what they suggest, take on the homework now. It is really true: Knowledge is power. You will find you have more options both now and in the future. You will immediately know what's been tried, what might work and what can be taken off the table. This streamlines and simplifies your tasks during times of high emotion. By limiting the focus you can mitigate the overwhelm. Plan what you can now to set you and your family members up for success. Doing so can deliver that peace of mind now and later also.

Medical Professionals

Jeanne M. Baus
RN, BSN, Masters in Gerontology

Why is there a drastic difference in people's perception vs reality?

Cultural Diversity:

The U.S. is considered the melting pot of the world. Our citizens are diverse and represent every country. Each family brings forth its own values and cultural expectations of support in their old age. The University of Minnesota study reveals one out of four older adults believe their family will provide for their needs in older age (University of Minnesota, 2015). Many of the older adults living in the U.S. were not born in this country or are first-generation. In countries such as Japan, China, Korea, Armenia, and South America they still retain a strong cultural expectation of family piety, which include aging parents living with one of their children. Cultural expectations of aging adults directly impact their perception of the need to prepare for long-term care. This is supported by a recent study by Henning-Smith & Tetyana. Results report, "Respondents living with minor children were the least likely to expect to need long-term services and supports and to require paid care if the need arose" (2015, p. 2, abstract).

The Chinese culture places are great deal of importance on respect and the expectation of filial care, which expects the bulk of primary care to be provided by the daughter(s) (usually the eldest) (Dong, Zhang & Simon, 2014).

Family filial piety has a strong influence in the Korean American families and can be linked to expectations of reciprocity in old age. Many older Koreans are not prepared for retirement due to the financial educational expenditures/support provide to their children. Older Americanized Koreans wish not to depend on their adult children as they age, as set forth in the Korean culture, yet many are not financially prepared for retirement much less the expense of long-term care (Yoo & Kim, 2010).

In the Hispanic/Latino culture many older adults expect to live with family members and receive personal care from their daughters. First and foremost they turn to all family members to assist with ongoing elder care, and studies reveal this group commonly underuse's governmental social service support (Kao, McHugh & Travis, 2007).
Common Oversights that Impact Family Planning/Support:

Many American households are divorced and adult children do not have available finances to help meet the monthly costs for "formal" caregiver out-of-pocket services for their declining parent(s).

Many adult children require two full-time working adults to meet monthly financial obligations and will not be able to take a short or extended "Family Leave of Absence" to care for an ailing parent. Adult children, especially if they are single, cannot bear the loss of earnings nor savings into their own retirement plans provided through employment.

Adult children may offer assistance or housing in old age when they are single or newly married. If they remarry the structure of a "blended family" may present challenges to fulfilling this promise.

Common factors influencing the ability for adult children to assist their aging parents have been associated with geographical distance (which is very common these day for children to move to another state or country for employment advancements), financial ability, the overall health of the parent, the sex of the child (daughters provide more care on average to ailing parents), and the number of children available to assist with care and financial support (Kivett & Atkinson, 1984).

Longevity is increasing the percentage of older adults affected by dementia and Alzheimer's. It is estimated that 46% of adults over the age 85 years will be affected by Alzheimer's disease (Day, 2014). Currently, approximately 14.9 million caregivers take care of a family member with dementia related diseases (NCPC, 2013). Half of these caregivers are married females working full-time over the age of 50 years, 59% are women and over half do not live with the parent(s) or family member they provide caregiving assistance to (Messinger-Rapprt, McCallum & Hujer, 2006). Again, cultural beliefs may impact if the older adult with dementia is admitted to a long-term care facility; statistics demonstrate Hispanic and African American with the lowest percentage of admission (Messinger-Rapprt, McCallum & Hujer, 2006). Reviewing these statistics, aging adults must be prepared for the possibility of a dementia-related disease impacting their ability to safely care for themselves or their spouse.

Another common oversight is aging couples assuming they will be healthy enough to care for one another without outside assistance. As a past Director of Nursing, for a large assisted living community in the Los Angeles County, the number one reason for a spouse seeking long-term care assistance for their ailing partner was due to their inability to the physical and emotional meet demands of 24/7 full-time care. A number of spouses who were the primary caregivers reported feeling exhausted; their own physical health was declining and they lacked the physical strength to continue, commonly referred to as, "caregiver burnout".

As a nurse who has serviced patients in the home healthcare sector for over the past ten years, the preponderance of older adults insist on receiving their medical care while remaining in their home. Meeting this desire in many instances becomes unsafe as the older adult declines in their abilities to perform basic activities of daily living (ADL's) (grooming, toileting, feeding self, bathing, walking & transferring, maintaining continence) and instrumental activities of daily living (IADL's) (complex skills such as meal preparation, managing finances, managing medication, driving, housework) and demonstrates mild to moderate cognitive decline (memory loss in varying degrees). Chronic conditions that present the most common challenges for older adults to manage while living at home include hypertension 57%, dementias 42%, cardiac disorders 34%, depression 28%, arthritis 27% and diabetes 17% (NCAL, 2010). Older adults must prepare for debilitating diagnosis's that will impair their ability to safely care for themselves as they age.

In fact, for the 900,000 older adults currently living in assisted living communities across the U.S., 70% moved into the facility from their private home, 72% require assistance with bathing, 52% require assistance with dressing, 36% with toileting and 81% receive help managing their daily medications (NCAL, 2010). These statistics present a realistic picture of the most common reasons older adults and their adult children seek safe supportive services in long-term care facilities such as in assisted living communities.

What are the consequences for not being prepared?

The consequence of not preparing for our long-term care needs can and does have a dramatic impact on those who love us the most. Our closest friends, neighbors and family members end-up becoming our "informal" caregivers. In the U.S., it is estimated that there are approximately 20 to 50 million informal caregivers and two-thirds of this group is working full-time (NCPC, 2013). Older adults must honestly think through the impact of their future informal care needs on their adult children and the high probability for the need of formal caregivers (paid provider services).

Not preparing for long-term services may result in the older adult living in a facility they would not otherwise choose to live in. Long-term care planning provides future choices and a feeling of control over some of the most importance decisions we will all face in our final years.

How would you close the discrepancy gap?

Policymakers could begin to close this gap by aggressively educating human resource departments in the small and large corporations across the U.S., addressing the need to educate their employees not only on the need for retirement planning but as well as long-term care planning. This could be accomplished by providing a "pre-designed" PowerPoint presentation created by government organizations that cite current statistics of long-term care needs, associated healthcare costs for projected extended longevity, estimated cutbacks and gaps in governmental support programs. Government assistance is only provided to older adults when they have depleted their savings, do not own a home and can prove no outside retirement income. In fact, a mere 16% of services required for long-term care are covered by government programs (Winegar, 2014).

Studies reveal that persons who have direct contact with a friend or family member who have required assisted living or skilled nursing facility services demonstrate a greater understanding of the need for long-term care financial planning. This type of information, such a personal experience examples, have been found to be immensely powerful in community education programs (Regents of University of Minnesota, 2015).

Clarification of what long-term care services entail must be clarified to the general public. Most older adults believe long-term care means they will live in a nursing home, which conjures up feelings of abandonment, giving up control over their life, having no privacy, the fear of receiving poor care and possibly living in a dirty foul-smelling environment. Education should include all types of long-term care services that may include living in a home-like environment such as an assisted living community, alternative residential home or independent retirement community.

Promotion of the most comprehensive online educational program available for resource assistance and clarification is called, "Guide to Long Term Care Planning". Written by 8 experts, 34 chapters with 670 printable pages are available for available for free at

What advice do you have for consumers about their future care needs?

Start the education process. Speak with retirement counselors about available programs, the differences in programs and associated plan costs. A common confusion noted when I spoke with older adults in need of assisted living services were that they were very surprised and angry to find out their "long-term" care insurance did not cover assisted living communities, only skilled nursing facilities. Since 70% of older adults move into assisted livings from their homes, and 9% from nursing facility, 9% from an independent living community and 5% from other assisted living communities. The majority of older adults move into assisted living communities, it is essential to ensure these locations are covered in the policy (NCAL, 2010).


*Day, T. (2014). Long-term care: An impending crisis for the elderly. Retrieved from

* Dong, X., Zhang, M., & Simon, M. A. (2014). The expectation and perceived receipt of filial piety among Chinese older adults in the Greater Chicago area. Journal of Aging And Health, 26(7): 1225-1247. doi:10.1177/0898264314541697

*Henning-Smith, C.E. & Shippee, T.P. (2015, January). Aging & Health. Expectations about future use of long-term services and supports vary by current living arrangement. Health Affairs, 34(1):38-47.

Dr. Steve Fuller
Chief Medical Officer at ACRA

Why is there a drastic difference in people's perception vs reality?

LTC is an intangible concept for many people that does not have immediate impact. The effects of any decision made in this moment about LTC isn't felt for many years in the future. Also, the threat of losing independence and current lifestyle contribute to people overestimating how good their current health is.

What are the consequences for not being prepared?

Not having the finances to be able to afford an acceptable LTC setting, family discord in forcing a reluctant senior to accept the necessity for LTC, family stress about paying for LTC, the heart wrenching decision of being forced to move from a home into LTC without being psychologically prepared.

How would you close the discrepancy gap?

This gap will never be closed optimally. People will always struggle with the issues that force them against their will to accept LTC. It's like trying to prepare for someone to take a hammer and smash your thumb. No matter how much you prepare, it's still going to really hurt, and preparing doesn't lessen the pain.

What advice do you have for consumers about their future care needs?

1. Prepare financially by saving for your future health needs in something like a 401K for health.

2. Take very good care of your health NOW in order to minimize the need for LTC in the future.

3. Make out a Will now and address end-of-life preferences now so that these important details will be on autopilot when you need them.

Dr. Steve Leuck

Why is there a drastic difference in people's perception vs reality?

I feel that the issue lies in communication. We simply do not talk about long term care as much as we should. Somehow it gets hidden behind the walls of facilities, or worse, behind the doors of lonely apartment buildings. Pharmacists are in a unique position to discuss this issue with patients. When the opportunity presents itself, I will regularly ask middle aged (30-60 yo) if they have discussed with their parents what their plans are when they are unable to take care of themselves. My feeling is, if we get the adult kids talking with their parents about the subject, it will then allow the same individual to think about the topic for their own future.

What are the consequences for not being prepared?

As a community pharmacist, I can really only answer this questions as it relates to prescriptions. What I have found, regularly, is that at some point during a patients care they get to the point where they are no able to manage their own medications. If they have not had a conversation with a family member or caregiver about this subject, they will be left on their own trying to manage an unmanageable situation for a period of time.

At some point, some type of care will be given to or administered to the patient and their medications will get sorted out. The trouble is, the potential for significant medication related issues exists during the unmanageable stage and quite often this leads to hospital admissions.

How would you close the discrepancy gap?

In my practice, I encourage everyone to develop what I like to call a "Take Charge" plan. Everyone needs to do this; however, in my experience it is quite often overlooked. Pick someone, either a family member or a caregiver, and have a conversation with them about your medications. You are picking someone who will agree to handle your medication for you when you are no longer able to handle them yourself. This is a push to have you be an active participant in creating your plan, so that a plan is not created for you

What advice do you have for consumers about their future care needs?

In my practice, I encourage everyone to develop what I like to call a "Take Charge" plan. Everyone needs to do this; however, in my experience it is quite often overlooked. Pick someone, either a family member or a caregiver, and have a conversation with them about your medications. You are picking someone who will agree to handle your medication for you when you are no longer able to handle them yourself. This is a push to have you be an active participant in creating your plan, so that a plan is not created for you.


Erin Read
Erin Read, Director of Strategic Planning, Creating Results

Why is there a drastic difference in people's perception vs reality?

I think it is a complex mix of things, including:

1) That feeling of invulnerability isn't limited to teenagers. We all think we will be the exception to the rule of aging.

2) If we acknowledge the reality of need, we have to acknowledge the reality of how unprepared we are for the need. An overwhelming and scary proposition.

3) People's natural unease with the topic of money and their conditioning not to discuss private financial situations.

4) Long term care providers don't help the consumer truly understand. They are so afraid of turning off prospects that they refuse to post prices in their marketing, they dance around the subject, the obfuscate the true costs.

What are the consequences for not being prepared?

Diminished quality of life, increasing stress and burden on families.

How would you close the discrepancy gap?

What advice do you have for consumers about their future care needs?

Put on your big girl panties and talk frankly about finances. Force long term care providers to give you straight answers about the costs you face. Be straight about your own resources. Don't leave assumptions or stereotypes unchallenged. Visit a wide variety of senior living / senior care offerings far, far before you think you need it. Talk to a wide variety of people about their journeys to finding care.

Marla Levie
Owner, Focus on Aging

Why is there a drastic difference in people's perception vs reality?

I think all of us have the tendency to ignore potential conflicts, challenges, health issues, etc. until we are faced with them. In my opinion, long-term care needs fall into that category.

Until faced with a situation, the general public, (those not in the aging field) are overwhelmed by the many different options available to them, the choices within those options and the costs associated with them.

What are the consequences for not being prepared?

I am a firm believer that it is hard to know exactly how to prepare for our aging futures because one never knows what our aging will look like. Some people live to a ripe old age with good health. Some require care at an early age and some never need it.
That said, I think it is important to know that there are many different services to help people as they age. There are individuals, care managers, that can help families navigate every step of the way. There are elder care agencies in many communities.

How would you close the discrepancy gap?

I think education is important and the key is to find a creative way to inform people before they have a problem and are ready to learn about long-term care services. This past year there were many movies and books that shed light on aging and featured older characters. This is education at its best! This includes two related to Dementia - Still Alice and the Glen Campbell movie, I'll Be Me.

What advice do you have for consumers about their future care needs?

Become informed before there is a crisis, know when to ask for help, and of course, know who to ask! Easier said than done!