The plaques and tangles associated with Alzheimer”™s are fitting metaphors for the financial morass and legal twists that await those who care for patients with this terrifying disease and other forms of dementia. This is especially true if you happen to be a member of the middle class.
“If you”™re at the high end of the spectrum, you get whatever care you want,” said Paul Anderson-Winchell, executive director of the Grace Church Community Center in White Plains, whose social programs include the Neighbors Home Care Services. “If you”™re at the other end, there are significant services available to you. It is mostly people in the middle who feel the greatest stress.”
Why? Experts say it is a combination of the high cost of dementia care and the limitations of two major government programs mistakenly thought to be catchalls ”“ Medicare, designed for short-term care rather than a long-term condition like dementia, and Medicaid, which generally assists the poor.
The figures are daunting: A nursing home such as the Schnurmacher Center for Rehabilitation and Nursing in White Plains ”“ which has the capacity for 270 dementia patients ”“ can run about $350 a day, or $128,000 a year. A home health aide employed through an agency such as Grace Church”™s Neighbors program costs on average $23 an hour. It can be more economical to hire an aide privately. And riskier, Neighbors director Lesma Howard-Zepeda said.
“If you go through an agency, you have a backup plan if the aide doesn”™t show up and oversight, with heavy references and criminal-background checks.”
Sticker shock
In dementia care, there is a growing trend to facilities that specialize in the disease, such as Potomac Homes ”“ 12 communities in northern New Jersey for patients in all stages of Alzheimer”™s and other forms of dementia. (See accompanying story on trends in dementia care.) The base rate is $5,060 a month for those in the early and middle stages of the disease and $6,050 a month for those in the later stages.
Potomac Homes President and CEO Benjamin Pearce, a Warwick resident, said that 90 percent of his clients convert their assets ”“ homes, pensions and investments ”“ to cover the expense. The remaining 10 percent use long-term care insurance, which costs thousands of dollars a year.
For the dementia caregiver, sticker shock is doubled by the cold, hard reality of Medicare and Medicaid”™s inadequacies.
“Most people in general don”™t realize that traditional insurances like Medicare don”™t apply to people with dementia,” said Karen Blick, administrator at Schnurmacher. “Most supplemental insurances to Medicare meet the same needs as Medicare.”
Medicaid restricts the amount of income and assets a participant can have. The dollar value of these restrictions varies from year to year and state to state, said Susan Slater-Jansen, a partner in the White Plains firm of Kurzman Eisenberg Corbin & Lever L.L.P., who specializes in trusts and estate planning. What remains consistent nationwide is Medicaid”™s five-year look-back period, so that you can”™t just decide overnight to give your house and money away to your children to meet the criteria. To qualify today, you would”™ve had to restructure your finances in 2005.
Plan now ”“ or pay later
Given the high price tag of dementia care and the limits of government assistance, it”™s not surprising that many try to game the system by transferring assets, particular to a healthy spouse; sheltering funds in various trusts or setting up a life estate that enables the dementia sufferer to remain at home for the rest of his life while transferring ownership of the house to a caregiver who has lived there for at least two years.
But while income can be spent down, assets can”™t always be, Slater-Jansen said.
She and other experts agree that the time to plan is not when someone is in the throes of dementia. By then a veil has descended that may not part long enough for the sufferer to act rationally. Rather, Christine Metsch, a Briarcliff Manor attorney specializing in trusts and estates, recommends that everyone already have four items in their legal arsenal: a will; a living will, which specifies your wishes for end-of-life care; a health-care proxy, designating someone to make medical decisions for you should you become incapacitated; and a power of attorney, designating a person to deal with your assets in the event of impairment. Slater-Jensen advocates caution with the power of attorney as it can be abused by unscrupulous caregivers.
When it comes to planning for life”™s final chapters, people are more than cautious. They”™re in denial.
Said Metsch: “There”™s a general reluctance. It”™s difficult to get people to face up to this.”
And yet in the case of dementia care, an ounce of legal and financial prevention can be all the comfort there is in the face of a disease that has no cure.
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Trends in caregiving
One person”™s sunset can be another”™s sunrise. As Alzheimer”™s and other forms of dementia threaten members of the Greatest Generation and baby boomers alike, new careers and whole industries are springing up to confront the diseases”™ dreaded specters.
One of the most in-demand careers is elder-care law.
“Most firms are looking for elder-law practitioners,” trusts and estates lawyer Susan Slater-Jansen said. “When I counsel law students, I tell them about elder-care law, and they”™re very interested.”
To find an elder-care lawyer in your area, visit the National Academy of Elder Law Attorneys Inc. (NAELA) at naela.org
Another bustling profession is the home health aide, along with the agencies who facilitate hiring them. Chris Schwartz, director of development for the Grace Church Community Center, said: “There aren”™t enough trained aides to meet the demand.”
To counteract this, Grace Church opened its own training center in August of last year, offering 90 hours of classes that use a curriculum established by the state Department of Health.
Not everyone is able to care for a dementia patient at home. Instead they turn to facilities such as Potomac Homes, 12 communities in northern New Jersey that represent the trend to more individual care. Each home has 16 residents, with a 4-to-1 ratio of patients to caregivers.
Potomac President and CEO Benjamin Pearce said: “The smaller the environment, the better the care.”
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Tips for caregivers
Consult an elder-care lawyer who will take you through the legal and financial dos and don”™ts of caregiving. Elder-law practitioner John J. Gochman of Croton-on-Hudson, whom this reporter has consulted in the past, said: “It”™s something you have to work at and do systematically.”
Create a team ”“ lawyers, doctors, nurses, aides, family members, household workers ”“ that will assist you in caring for the dementia patient. The team is key, said Paul Anderson-Winchell of Grace Church Community Center.
Be aware of the hidden costs of caregiving ”“ the diapers and other supplies that won”™t be covered by Medicare, the increased electrical usage (for the semi-electric hospital bed and the washer and dryer, among other appliances).
Aim for excellence rather than perfection. Let go of the naysayers and the guilt.
Do something you enjoy every day, even if it”™s just a five-minute walk. Karen Blick, Schnurmacher nursing home administrator, said: “As caregivers you also need to take care of yourselves.”
