An Often Misdiagnosed Dementia

Lewey body dementia is an often misdiagnosed dementia.
Lewey body dementia is an often misdiagnosed dementia.

Many people had never heard of Lewy body dementia until it was reported in 2014 that this was the disease that afflicted Robin Williams. While Lewy body dementia and Alzheimer’s disease are the two most common types of dementia, those who have Lewy body dementia are often misdiagnosed as having Alzheimer’s disease or depression. As a result, they do not get the treatment and support they need.

Considerable’s recent article entitled “The second most common type of dementia often goes unrecognized” reports that in one study, nearly 70% of people diagnosed with Lewy body dementia visited three consultants before receiving the diagnosis. For 33% of people with the disease, the dementia was misdiagnosed and getting the correct diagnosis took over two years.

There are two different conditions associated with Lewy body dementia: dementia with Lewy bodies and Parkinson’s disease dementia. In dementia with Lewy bodies, problems with memory and thinking occur simultaneously with problems involving movement, like those associated with Parkinson’s disease. In Parkinson’s disease dementia, a person who has had movement problems resembling Parkinson’s disease for several years, then develops difficulties with memory and thinking.

In addition to memory, thinking, and movement problems, symptoms of Lewy body dementia include issues with alertness and concentration, hallucinations and paranoia, acting out dreams during sleep, low blood pressure when standing, daytime sleepiness and depression.

Because the symptoms of Lewy body dementia often resemble other conditions, research reveals that the first diagnosis is commonly incorrect. For example, in one study 26% of people who had Lewy body dementia were misdiagnosed as having Alzheimer’s disease, and 24% were determined to have a psychiatric diagnosis like depression.

We saw this first hand at our firm when a family member was suffering with this kind of dementia. It went undiagnosed until it was too late to treat it properly. We feel it’s important to get the word out to family members who might think their loved one is suffering from depression, Parkinson’s disease, or another kind of dementia.

Failure to properly diagnose a person with Lewy body dementia can result in delay in treatment specifically targeted for that condition. Also, with the correct diagnosis, patients and families can seek out resources, such as the Lewy Body Dementia Association, an organization dedicated to helping people living with this disease. This group provides education on Lewy body dementia, helps patients and families know what to expect, connects patients and families to support and resources and helps them find research opportunities.

For more information on dementia issues see https://galligan-law.com/some-common-drugs-may-increase-risk-of-dementia/

Reference: Considerable (Aug. 14, 2020) “The second most common type of dementia often goes unrecognized”

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How Does Planning for a Special Needs Child Work?

Planning for a special needs child requires considering long term needs and expenses while considering the care providers’ own needs.

Funding a Special Needs Trust (aka Supplemental Needs Trust) is just the start of the planning process for families with a family member who has special needs. Strategically planning how to fund the trust, so the parents and child’s needs are met, is as important as the creation of the SNT, says the article “Funding Strategies for Special Needs Trusts” from Advisor Perspectives. Parents need to be mindful of the stability and security of their own financial planning, which is usually challenging.

Before going to far, I’m going to assume you’ll have a basic understanding of a SNT.  In short, it is a trust that holds assets so that the disabled beneficiary may qualify for governmental assistance.  See here for more information.  https://galligan-law.com/what-should-i-know-about-a-special-needs-trust/

To start planning for a special needs child’s financial needs, parents should keep careful records of their expenses for their child now and project those expenses into the future. Consider what expenses may not be covered by government programs. You should also evaluate the child’s overall health, medical conditions that may require special treatment and the possibility that government resources may not be available. This will provide a clear picture of the child’s needs and how much money will be needed for the SNT.

Ultimately, how much money can be put into the SNT, depends upon the parent’s ability to fund it.

In some cases, it may not be realistic to count on a remaining portion of the parent’s estate to fund the SNT. The parents may need the funds for their own retirement or long term care. It is possible to fund the trust during the parent’s lifetime, but many SNTs are funded after the parents pass away. Most families care for their child with special needs while they are living. The trust is for when they are gone.

The asset mix to fund the SNT for most families is a combination of retirement assets, non-retirement assets and the family home. The parents need to understand the tax implications of the assets at the time of distribution. An estate planning attorney with experience in SNTs can help with this. The SECURE Act tax law changes no longer allow inherited IRAs to be stretched based on the child’s life expectancy, but a person with a disability may be able to stretch an inherited retirement asset, depending on their needs.

Whole or permanent life insurance that insures the parents, allows the creation of an asset on a leveraged basis that provides tax-free death proceeds.  Life insurance is often utilized for special needs planing because it may be low cost during life but provide a sizable fund for the beneficiary when his or her parents can no long provide for them.

Since the person with a disability will typically have their assets in an SNT, a trust with the correct language—“see-through”—will be able to stretch the assets, which may be more tax efficient, depending on the individual’s income needs.

Revocable SNTs become irrevocable upon the death of both parents. Irrevocable trusts are tax-paying entities and are taxed at a higher rate. Investing assets must be managed very carefully in an irrevocable trust to achieve the maximum tax efficiency.

It takes a village to plan for the secure future of a person with a disability and that is certainly true with planning for a special needs child. An experienced elder law attorney will work closely with the parents, their financial advisor and their accountant to ensure proper planning for your disabled loved one.

Reference: Advisor Perspectives (April 29, 2020) “Funding Strategies for Special Needs Trusts”

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Is Long Term Care Insurance Really a Good Idea?

Clients are often concerned that long term care insurance is too costly, but it may not be compared to the cost of private paying long term care.

Forbes’ recent article entitled “Is Long-Term Care Insurance Right For You?” says that a big drawback for many is the fact that long term care insurance (“LTCI”) is expensive. However, think about the costs of long term care. For example, the current median annual cost for assisted living is $43,539, and for a private room in a nursing home, it’s more than $92,000.  In many urban areas it is much higher, so utilizing long term care insurance my be best.

Another issue is that there’s no way to accurately determine if in fact you’ll even need long term care. Much of it depends on your own health and family history. However, planning for the possibility is key and unfortunately most clients don’t plan for long term care either with insurance, retirement or in their estate plans.

Remember that Medicare and other types of health insurance don’t cover most of the cost of long term care—what are known as “activities of daily living,” like bathing, dressing, eating, using the bathroom and moving. Medicare will only pay for medically necessary skilled nursing and home care, such as giving shots and changing dressings and not assisted-living costs, like bathing and eating. Supplemental insurance policies generally don’t pay for this type of care.  Those who meet financial guidelines may receive care provided under Medicaid or other benefits such as Veterans benefits.

It is important to shop around as there are no one-size-fits-all long term care insurance policies. Check the policy terms and be sure you understand:

  • The things that are covered, such as skilled nursing, custodial care, assisted living and in home care
  • If Alzheimer’s disease is covered as it’s a leading reason for needing long-term care
  • If there are any limitations on pre-existing conditions
  • The maximum payouts, including if maximum payouts are by day or year
  • If the payments are adjusted for inflation, which depending on the time of purchase might be key
  • The lag time until benefits begin
  • How long benefits will last, including whether there are lifetime caps on the amount paid or time periods paid
  • If there’s a waiver of premium benefit, which suspends premiums when you are collecting long-term care benefits
  • If there’s a non-forfeiture benefit, which offers limited coverage even if you cancel the policy
  • If the current premiums are guaranteed in future years, or if there are limits on future increases
  • How many times rates have increased in the past 10 years
  • If you purchase a group policy through an employer, see if it is portable (if you can take it with you if you change jobs).

Typically, when you are between 55 to 60 is the most cost-effective time to buy LTCI, if you’re in good health. See my prior blog on this point.  https://galligan-law.com/when-should-i-consider-long-term-care-insurance/   The younger you buy, the lower the cost. However, you will be paying premiums longer. Premiums usually increase as you get older and less healthy. There’s a possibility that you’ll be denied coverage, if your health becomes poor. Therefore, while it’s not inexpensive, buying LTCI sooner rather than later may be the best move.

The best thing to do is to consult your financial advisor and your insurance agent on whether a LTCI policy, and which, will work best for you.

Reference: Forbes (April 17, 2020) “Is Long-Term Care Insurance Right For You?”

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