Though my family has had first-hand experience with loved ones with Alzheimer's disease and dementia, my journey to Alzheimer’s and dementia planning has not been a straight path. I didn't grow up planning to go to law school or to be a lawyer. In fact, as I was preparing for college, I still wasn't really sure what I direction I was heading in. All I knew is that I had excelled in math and science and enjoyed it, so it seemed likely that I would end up doing something in that arena.
You Don't Know What You Don't Know
I was the first in my family to go to college, and when I got to MIT, I found it quite overwhelming at first. I was now among thousands of hard-working overachievers, many of whom came from prestigious prep schools and were far better prepared for college than I was. They came in already knowing how 'the system' works…asking professors for extra help or recommendations, starting to line up summer internships the fall before, and so forth. I quickly became aware of the disadvantage of not knowing what I didn't know. But I sought out mentors, and I learned ‘the system,’ and things got better.
As college progressed, I settled on economics as my major and I began finding that the policy-related classes were the ones that I enjoyed the most. During my junior year, when MIT added a public policy minor, I jumped on it. It was the public policy minor that eventually led me to law school. Though I still wasn't quite sure what I was going to do with a law degree, I figured it would give me an opportunity to continue to explore my interest in public policy and health and economic issues while also keeping other options open if something else caught my interest and I decided to go in a different direction.
When I got to law school, I saw the same patterns re-emerging. There was a real difference between those that were "in the know"—students that had a parent or family member that was a lawyer or judge and had the "right connections" and knew how law school and the legal world worked. I quickly realized that the same was true for the legal system in general. There are effectively two legal systems—one for those that were '"in the know" and had access to great legal knowledge and information and one for those that "don't know what they don't know."
That's when I started to feel the pull. I wanted to help other people navigate "the system" by helping others gain access to the valuable advice and assistance that well-heeled families have always had at their disposal.
Now, of course, there are lots of fields of law where I could help people navigate the system, but with my background in economics and finance, I found myself drawn to estate planning (at the time, most law schools had yet to start offering 'Elder Law' as a separate course offering).
Estate planning had a lot of traits that I found appealing. It's an area not only where I can help people, but it's truly an area where what you don't know can come back to bite you in the long run. Far too many people have been led to believe it's about having a checklist of "the right" documents without understanding that the documents are just the final byproduct a thoughtful and well-designed plan. It's also an area where I get to work with great clients. People who want to honor and protect their loved ones. It is a real privilege to be part of that.
During law school, I took as many courses as I could that would prepare me for a career in estate planning—wills and trusts, estate and gift tax, income tax, advanced estate planning, and so forth. I came out of law school bright-eyed and excited.
Traditional Estate Planning & Elder Law Have Shortcomings
A life-long learner, I continued to read, study, and devour books, articles, and continuing education materials that would help me do the best work possible for my clients. I began to see there was a real problem with traditional estate planning: Traditional estate planning focuses primarily on what happens when you die. Any documents or instructions relating to what happens to you during your lifetime are almost an afterthought to most people or just thought of as 'a few documents' that you're supposed to have. I kept seeing case after case where these 'basic documents' had failed people.
You see, here's the problem: Modern medicine has made miraculous strides. As a result, we’re living longer than ever. But it has come with the tradeoff that we have a much higher likelihood of needing significant health care and long-term care later in life. For example, a heart attack or stroke that previously might have been deadly might not kill us any longer, but it could leave us alive and needing care for an extended period of time. In addition, the need for long-term caregiving has skyrocketed as we face a rising tide of Alzheimer's disease, Parkinson's disease, dementia, stroke, heart disease, COPD, and so on.
Driven by my desire to help clients live better lives, I kept digging, and I found there was an emerging area of law known as 'Elder Law.' Even in the mid-2000s, 'Elder Law' was still a relatively new area of law. However, due to the rapidly increasing need, awareness of Elder Law planning began to grow and many attorneys began advertising themselves as "Elder Law attorneys."
Just like doctors may specialize in certain medical disciplines, most lawyers concentrate on just one or two practice areas. Elder Law is a broad umbrella term to describe a practice area that focuses on legal issues that affect aging populations which may include senior housing, social security planning, estate planning, guardianship, government benefits planning, long-term care planning, nursing home neglect, and more. Most Elder Law attorneys tend to focus primarily on government benefits planning for nursing home care. In our office, we call this “crisis planning” because many people do not seek out the assistance of an Elder Law until there is a health care crisis and they need help.
It's no wonder that, up until the 2000s, planning ahead for the possibility of long-term care wasn't really talked about. Families with a spouse or parent with Alzheimer's, dementia, or similar diagnosis were usually so caught up in the day-to-day, that it didn’t occur to them to seek out help until they had no other choice. They would do the best they could to care for their loved one until the care needs became too great. When it finally became too much, they would start looking into assisted living, nursing home, or other care options, only to find out how exorbitantly expensive it can be. That's when they would finally seek out help from an Elder Law attorney. Often by that point, government benefits planning such as planning for Medicaid or veteran’s benefits were the only options remaining. This type of planning usually centers around “spend down” plans and depleting the individual’s assets in order to qualify for assistance.
Many years ago, my firm, Carolina Family Estate Planning, began offering 'long-term care planning' services in addition to our estate planning and Elder Law services. We were trying to spread the message that if people would plan ahead for the possibility of long-term care, we could achieve better results and avoid future stress, headaches, and expenses for the family. But this planning was still largely centered around government benefits planning and nursing home planning. The reality is that most people don’t want to end up in a nursing home, so they don’t want their long-term care plan to be centered solely on future nursing home care.
We also began taking a hard look at our planning and documents to figure out how we could make them more effective for our clients during their lifetime instead of just focusing on what happens upon their death. We realized that a lot of the problems that come up during a person’s lifetime are not just about how to pay for care, but also about working with people.
For example, during planning, many clients tend to make statements like “Just pull the plug,” or, “I don’t want to be on a machine,” or, “My spouse/child knows what I want.” On the flip side, time and again, we see distraught spouses or children who don’t know what to do. They don’t know what their loved one’s wishes really are. Or the family ends up feuding because everyone has a different opinion about what should be done. You see, medical issues rarely black and white. With dementia and Alzheimer’s disease, there is no “plug” to pull.
I realized that there were probably two reasons why our planning clients tend to make such glib statements about pulling the plug. First, these are unpleasant topics that none of us want to imagine happening to ourselves and second, most people need guidance in understanding what sorts of issues might arise and what the health care and caregiving options might be.
I also observed that health care crises tend to bring out the worst in families. It is often a time of incredible stress, guilt, shame, frustration, resentment, and exhaustion. Even the most amicable of families will end up fighting over something. Sometimes they disagree about what the person’s wishes are, or about what the care plan should be. Finances are another big point of contention. Often, family members get frustrated or resentful that other family members aren’t "doing their share." Most of the time, miscommunication or misunderstanding comes into play as well.
As if family dynamics weren’t enough, add in the dealing with the outside world and bureaucracy. The doctors, nurses, and staff at the hospitals and nursing homes generally have the best of intentions and are just trying to be helpful, but they often give family members quasi-legal advice that is flat out wrong. Banks and financial advisors err in this regard as well. Though it comes from a good place, often that "help" does more harm than good. For example, a bank representative or financial advisor might think he’s saving you money by telling you to get a power of attorney online. But doing so can cost you thousands more in the long run when the document doesn’t have critical long-term care planning or other needed provisions.
A lot of attorneys and financial professionals try to make estate planning and Elder Law all about money—saving your assets from the nursing home, reducing taxes, keeping costs down, leaving an inheritance to your family. But what good is all of that if your family is left torn apart by family in-fighting and resentment? What good is that if their lasting memories of you are the mess that you left behind?
There Must Be a Better Way
Determined that we must do better, I set out to address these issues.
My firm has invested enormous amounts of time, money, and energy in developing special tools and custom documents to better address these issues. How could we help our clients better capture their wishes and clearly communicate those wishes to family members and future caregivers? How can we arm family members with the right tools in advance so they'd be less likely to fall prey to bad advice from outsiders? How could we give those family members guidance so they would understand what's expected of them in their role? How can we reduce family miscommunication and enhance family harmony?
We started by customizing our health care documents to address common issues we were seeing. For example, issues with swallowing reflexes can be common in the later stages of Alzheimer's and dementia, and when that time arrives, many nursing home want to resort to feeding tubes or liquid diets because it's "better" (translation: it's easier and faster for the nurses to just pop in an IV bag or feeding tube). However, studies show that manual stimulation to aid in swallowing food is better for the patient, and it has the added benefit of providing the patient with more human interaction, despite requiring more of the nurse’s time. This is an issue we address in our planning.
Or another example: Numerous studies show that most people would rather pass away in their own home surrounded by loved ones than to die in a hospital or nursing home. Yet the reality is the opposite. Far more people pass away in a hospital or nursing home than in the comfort of their own home. This is another issue we address in our planning, including empowering health care agents to discharge their loved ones against medical advice if needed, to return them home and honor their wishes.
Similarly, we examined the common issues and roadblocks that would arise on the financial and legal side of things. When it came to "crisis planning," far too many families found that their loved one only had basic "cookie cutter" power of attorney documents that were practically useless when doing government benefits planning, long-term care planning, tax planning, or other advanced tactics. So, just like we honed our health care planning, we did the same on the legal and financial side.
And as we worked with more clients with Alzheimer's and dementia, we saw other issues emerging. For example, a durable power of attorney allows you to appoint a "helper" (your agent) to help you with managing your finances and paying your bills, but a durable power of attorney doesn't stop you from handling your own finances.
Now, that might sound like a good thing. If you're healthy, you may not want to give up control of your own affairs. But we kept running into instances where a loved one with dementia was repeatedly falling prey to scams, writing checks to anyone and everyone, and making an overall mess of their finances. By that point, a power of attorney wasn't enough. The only option left was to go to court and ask a judge to legally declare the person incompetent and unfit to manage their own affairs—a process that can be time-consuming, expensive, and stressful for everyone involved.
To address these issues, we’ve developed planning and tools that go beyond the durable power of attorney, to greatly reduce the likelihood of needing to petition the courts for guardianship.
But there was still a problem plaguing me. We had made great strides toward empowering our clients to weather any storms to come, but I still felt there was more we could do on the financial side of things. At this point, most long-term care and Elder Law planning was still centered around Medicaid planning and veterans benefits planning. While we can do great work planning for those benefits, both programs have several significant shortcomings.
For example, veterans benefits are only available to wartime veterans who meet specific requirements or their surviving spouse. Further, the benefits are capped and are generally not enough to pay for the amount of care many of our clients need.
For those that don’t qualify for veterans benefits, Medicaid is usually the only remaining option. In North Carolina, Medicaid long-term care benefits are primarily for skilled nursing facility care (i.e., a nursing home). Assistance for in-home care, assisted living, or memory care is extremely limited and most people do not qualify. Particularly for dementia and Alzheimer’s disease, it’s common to need assisted living or memory care for several years (the average length of long-term care need for Alzheimer’s and dementia is eight years). In the Wake County area, it’s not uncommon for assisted living or memory care to cost between $7,000 to $9,000 per month. Most families cannot afford to pay $85,000 or more per year for several years.
Of course, there’s still the issue that most people do not want to end up in a nursing home and would rather receive care in the privacy and comfort of their own home.
It really bothered me to know that most of our long-term care legal planning still had these holes in it. We could develop an excellent Medicaid or Veterans benefits plan, but there would still be holes in the plan. What if our client needed extended in-home care, assisted living, or memory care?
The Search For More Options
I was already familiar with long-term care insurance and I would regularly advise my clients to look into it, but many of them would reply that they thought it was too expensive, or due to health reasons, they did not qualify for it. I explain that while it may seem expensive, in the long-run, it is far less expensive than paying out of pocket for months or years of long-term care, but my advice continued to fall on deaf ears.
Then I realized the problem: traditional long-term care insurance has always been a 'use it or lose it' proposition. Think of it like renting an apartment. Each month you pay rent, but you never accumulate any equity in the apartment. Even worse, the landlord can raise the rental rates on you in the future. It’s the reason many people prefer to own their own home. Even if they have a mortgage, they know what the mortgage payment will be each month and with each payment, they accumulate equity in their home.
Traditional long-term care insurance is like renting an apartment. It can provide great protection if you need long-term care. However, the sore spot for most people is that if they end up not needing care, then over the years they would have paid thousands of dollars in insurance premiums and have nothing to show for it, because the policy doesn’t build any equity. And to add insult to injury, the insurance company can increase the rates.
Then in 2010, along came the Pension Protection Act. (Well, technically, it was the Pension Protection Act of 2006, but a portion of it didn't go into effect until 2010.) As the name implies, most of the Pension Protection Act had to do with pensions, but as Congress often does, they threw some "little extras" in there. One of those "little extras" was a set of provisions that made a huge impact in the long-term care insurance arena. Acknowledging that we have an aging population, Congress wanted to give individuals more options and incentives to plan for their own long-term care needs, rather than relying on government benefits. The new provisions allowed insurance companies to offer new long-term care insurance options. Some of those options were given favorable tax treatment to make them more enticing.
Disappointed with Advisors Lack of Expertise on Long-Term Care Planning
My firm works with a lot of terrific financial advisors in the area. Most of them do a great job helping people with accumulate wealth, save for retirement, and make investment decisions. But many advisors focus more on the accumulation side of things and less on the protection side of things. As I asked around about long-term care planning options, it quickly became apparent that many financial professionals were not nearly as well-versed on long-term care planning as I would want them to be if they were advising my own family.
Some advisors had no knowledge of these new products. Some had general knowledge but would limit their product knowledge to one insurance company rather than shopping around or understanding the strengths and weaknesses of the different products and companies. Other advisors were held 'captive' by their company and were only allowed to offer specific products from specific companies. I had several advisors tell me, "I don't bother talk to my clients about long-term care insurance anymore because I can't get anyone to buy it."
I'd ask them how they planned for their clients to afford to pay for long-term care. They would cite statistics about the "average" length of care being 2.5-3 years and proudly assert that their clients have enough savings to cover them. It was clear to me that they didn't know the rest of the story.
Did you know that 20% of individuals age 65+ are expected to need long-term care for 5 years or longer?! Did you know that the average length of care for an individual with Alzheimer's disease is eight years (which also means a lot of individuals with Alzheimer's need long-term care for more than eight years)?!
The Alzheimer’s Association reports that the average cost of total lifetime care for someone with dementia is estimated to be $341,840. A MetLife study found that the average lifetime cost a family caregiver between lost wages which then leads to lost social security and retirement benefits is over $300,000—this figure was not specific to Alzheimer’s and dementia which I would expect to be higher since the average length of care for Alzheimer’s and dementia is significantly longer.
I certainly don't consider it to be sound financial planning to develop a plan that will potentially fail for the 20% that need care for 5 years or longer. I don’t consider it to be sound financial planning for families to work hard to afford to send their children to college if it's later going to cost their children over $300,000 in caregiver-related costs because the parent neglected their own long-term care planning while they were paying for college.
When I would bring up the issue of long-term care planning with our clients' financial advisors, some of the advisors would claim, "Don't worry about it. We'll be able to generate enough income in market returns on your portfolio to cover long-term care." Here's the thing: They cannot guarantee that. They simply can’t guarantee market performance. They can't guarantee that there won't be a market correction right when you need those funds to pay for your long-term care and you can no longer wait for the market to recover.
It became apparent to me that many of our clients simply weren't getting the long-term care planning advice they needed—either because they didn't have a trusted financial advisor, or because their financial advisor wasn't knowledgeable enough on the issue. I think some of the advisors had great intentions, but they didn’t know the long-term care world the way we do. I felt that some other advisors just wanted to keep as much assets under management as possible so they could keep getting paid year after year managing their clients’ portfolio. I felt this was irresponsible and contrary to their clients’ best interests.
So I decided to take matters into my own hands. I found a mentor who had been in the long-term care insurance world for over 30 years, and I got insurance licensed. I've since invested enormous amounts of time, money, and energy traveling to different trainings and continuing education. I've visited the headquarters or offices of some of the companies. I broadened my search to find the right financial tools and the right financial professionals that were truly versed on long-term care planning matters.
The more I learned, the more the pieces started coming together. I finally started to feel we had the full spectrum of tools, resources, and knowledge available to help our clients develop well-rounded, multi-disciplinary, meaningful long-term care plans. We were no longer just talking about nursing home planning and impoverishing clients so they could qualify for government benefits. Instead, we now had a full toolbox of options to help meet our clients objectives of remaining in their home for as long as possible or mitigating their risk if they were to need long-term care for an extended period of time.
National Alliance of Attorneys for Alzheimer's Planning & The Alzheimer's Planning Center
In 2018, my husband, Dan, and I, along with a small group of colleagues from across the nation, formed the steering committee for what would become the National Alliance of Attorneys for Alzheimer's Planning (N3AP). While still in its start-up phase, the mission of the organization is to trade ideas on how to better serve individuals and families impacted by Alzheimer's and dementia, keep them informed about medical and financial trends, and collectively educate the community about the importance of high-quality, multi-disciplinary, meaningful Alzheimer's and dementia planning.
To that end, at Carolina Family Estate Planning, we have created The Alzheimer's Planning Center as a special division of the firm. It is a place to share information, events, and resources with our local community relating to Alzheimer's and dementia planning. The Alzheimer's Planning Center is also your source for a well-rounded, multi-disciplinary, meaningful approach to Alzheimer's and dementia planning.
We took a step back and examined the common issues that arise for individuals and families impacted by Alzheimer’s and dementia—issues such as susceptibility to senior scams, financial exploitation, safe driving, family caregiving, family communication, and more. We then rebuilt our planning around these issues and how to better address them. The result is a set of planning options we call Memory Safeguard Planning.
Whether you have a loved one currently in the advanced stages of Alzheimer's or dementia, or if you or a loved one have recently been diagnosed with 'mild cognitive decline', or you are simply concerned about a family history of the disease: We are here to help.
Call us at 919-440-3035. One of our friendly Client Welcome Specialists will be happy to tell you more about The Alzheimer’s Planning Center, to help you determine the best path forward, and to help you take the next steps toward a more secure future and a better life.
 Long-Term Care: Current Issues and Future Directions, U.S. Government Accountability Office, April 1995.
 2019 Alzheimer’s Disease Facts and Figures, Alzheimer’s Association.
 2018 Alzheimer’s Disease Facts and Figures; Alzheimer’s Disease: Financial and Personal Benefits of Early Diagnosis.
 The MetLife Study of Caregiving Costs to Working Caregivers, June 2011.
Alzheimer's Planning Series
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How Do I Deal Effectively With Agitation for My Loved One With Alzheimer's Disease or Dementia?
Long-Term Care Planning Series
This article series explores how a well-rounded long-term care plan can help protect and preserve your independence and dignity while avoiding financial devastation and unnecessary stress to your family. This article series explores long-term care planning options ?beyond government assistance planning such as planning for eligibility for Medicaid or Veteran's Benefits.