A new Portrait of Dementia - Brush to Canvas

Evolve at Rye Alzheimer’s residents are creating new portraits of dementia. For many who suffer from Alzheimer’s disease and related dementias, while their short-term memories may be fleeting, their long-term memories are still often intact.  Evolve’s activity director Lori Wiswell believes that reaching those long term memories is often a matter of channeling their attention to target familiar images that we all hold onto during our lives.  There is a palpable sense of enthusiasm bubbling from Lori “Here at Evolve at Rye we offer a therapeutic, multi-faceted interdisciplinary approach to activities and social and leisure programming,”  “Our goal is to provide specialized stimulation to create structure and support in meeting the physical, psychosocial, cognitive and spiritual needs of each resident, in this case it’s through the imagery of art therapy.”  Every week art therapy imagery comes to life. The artwork of the Evolve at Rye residents are on display at the community rooms for everyone to enjoy.  “We focus on the resident’s wellness and the holistic needs, rather than the losses that the disease causes,” explains Lori.  By focusing and building upon remaining abilities, projects such as these can build the confidence of the residents, rather than reminding them of what they may be losing.  All program components are designed to provide “failure-free” stimulation according to the cognitive ability of each resident.  The intimate homey environment offers unique structure for early and later stage residents separately which enables staff to individualize programming for each resident.  “Our programming is designed to provide stimulation within each resident’s capabilities that is confidence building and success oriented,” concluded Lori. 

Dementia is not always Alzheimer's disease

Dementia is a neurological disorder that affects your ability to think, speak, reason, remember and move. While Alzheimer's disease is the most common cause of dementia, many other conditions also cause these symptoms. Some of these disorders get worse with time and cannot be cured. Other types can be treated and reversed.

The three most common forms of dementia are Alzheimer's disease, vascular dementia and Lewy body dementia. Sometimes, a person can have more than one of these problems at the same time. You can have dementia without having Alzheimer's disease but everyone with Alzheimer's disease will have dementia.

Alzheimer's disease involves a loss of nerve cells in the areas of the brain vital to memory and other mental functions. This loss is associated with the development of abnormal clumps and tangles of protein in brain cells. The first sign of Alzheimer's disease is usually forgetfulness. As the disease progresses, it affects language, reasoning and understanding. Eventually, people with Alzheimer's lose the ability to care for themselves. The precise cause of Alzheimer's disease is unknown, but risk increases with age. Ten percent of the population over the age of 65 has Alzheimer's, while nearly half of the population over 85 has the disease.

Another common form of dementia, vascular dementia occurs when arteries feeding the brain become narrowed or blocked. The onset of symptoms usually is abrupt, frequently occurring after a stroke. However, some forms of vascular dementia progress slowly, making them difficult to distinguish from Alzheimer's disease. Some people have Alzheimer's and vascular dementia at the same time. Vascular dementia often causes problems with thinking, language, walking, bladder control and vision. Preventing additional strokes by treating underlying diseases, such as high blood pressure, may halt the progression of vascular dementia.

Lewy body dementia: Has Alzheimer's-like and Parkinson's-like features. In this form of dementia, abnormal round structures - Lewy bodies - develop within cells of the midbrain, beneath the cerebral hemispheres. Lewy body dementia shares characteristics with both Alzheimer's disease and Parkinson's disease. Like Alzheimer's disease, it causes confusion and impaired memory and judgment. And it often produces two distinctive physical signs typical of Parkinson's disease - a shuffling gait and flexed posture. Lewy body dementia can also cause hallucinations.

Lewy bodies contain a protein associated with Parkinson's disease, and Lewy bodies often are found in the brains of people who have Parkinson's disease or Alzheimer's disease. This suggests that the three ailments are related, or that Lewy body dementia and Alzheimer's or Parkinson's disease sometimes co-exist in the same person. Some people with Lewy body dementia have experienced dramatic improvements in symptoms when treated with Alzheimer's or Parkinson's medications.

Several less common brain disorders also can result in dementia.

•    Frontotemporal dementia. Because it affects the lobes of the brain that are responsible for judgment and social behavior, frontotemporal dementia can result in impolite and socially inappropriate behavior. Symptoms of this form of dementia usually appear between the ages of 40 and 65. The disease seems to run in families.

•    Huntington's disease. Symptoms of this hereditary disorder typically begin between the ages of 30 and 50, starting with mild personality changes. As the disorder progresses, a person with Huntington's develops involuntary jerky movements, muscle weakness and clumsiness. Dementia commonly develops in the later stages of the disease.

•    Parkinson's disease. People with Parkinson's disease may experience stiffness of limbs, shaking at rest (tremor), speech impairment and a shuffling gait. Some people with Parkinson's develop dementia late in the disease.

•    Creutzfeldt-Jakob disease. This extremely rare and fatal brain disorder belongs to a family of human and animal diseases known as the transmissible spongiform encephalopathies. A new variety of Creutzfeldt-Jakob disease has emerged - particularly in Great Britain. It's believed to be linked to the human consumption of beef from cattle with mad cow disease (bovine spongiform encephalopathy).

Many other conditions, some reversible, can cause dementia or dementia-like symptoms.

•    Reactions to medications. Some medications have side effects that mimic the symptoms of dementia. A single medicine may trigger such a reaction in an older person or in someone whose liver fails to eliminate the drug properly. Interactions among two or more drugs may lead to reversible symptoms of dementia as well.

•    Metabolic abnormalities. Decreased thyroid function (hypothyroidism) can result in apathy, depression or dementia. Hypoglycemia, a condition in which there isn't enough sugar in the bloodstream, can cause confusion or personality changes. Pernicious anemia - an impaired ability to absorb vitamin B-12 - also can cause personality changes.

•    Nutritional deficiencies. Chronic alcoholism can result in deficiencies of thiamin (vitamin B-1), which can seriously impair mental abilities. Severe deficiency of vitamin B-6 may lead to pellagra, a neurological illness with features of dementia. Dehydration also can cause confusion that may resemble dementia.

•    Emotional problems. The confusion, apathy and forgetfulness associated with depression are sometimes mistaken for dementia, particularly in older individuals.

•    Infections. Meningitis and encephalitis, which are infections of the brain or the membrane that covers it, can cause confusion, memory loss or sudden dementia. Untreated syphilis can damage the brain and cause dementia. People in the advanced stages of AIDS also may develop a form of dementia.

Seek evaluation and treatment

Dementia isn't always due to Alzheimer's. Before you conclude that a loved one's memory loss and confusion stem from an irreversible disease process, get a thorough medical evaluation. Even if the evaluation uncovers no underlying condition that, with treatment, can reverse dementia, options may be available for easing its symptoms. Knowing the likely cause of dementia, however, is the essential first step toward managing it.

Finish that Phrase Americana

"Secret Dollars" Veterans Aide and Attendance

Elder Law attorneys, have only recently learned how to help clients who may need an important VA benefit available to wartime veterans who may be facing substantial medical and care expenses. A veteran who is confined to their home or needs an assisted living facility care may qualify for benefits.  The Department of Veterans Affairs recently reported that the VA is reaching out to veterans and spouses to alert them to an underused benefit called “Aid and Attendance” (A and A).  It has been reported by the VA that tens of thousands of veterans across the country may not be receiving the VA disability benefits they are entitled to.  One of the VA’s best-kept secrets, which is an excellent potential source of funds for long-term care (either at home or in an assisted living facility) are veteran’s benefits for a non-service connected disability.  Most VA benefits and pensions are based on a disability, which was incurred during a veteran’s wartime service.  This particular benefit, A and A, is available for individuals who are disabled due to the issues of old age, such as Alzheimer’s, Parkinson’s, multiple sclerosis, and other physical disabilities.  For those veterans and widows (ers) who are eligible, these benefits can be a blessing for the disabled individual who is not yet ready for a nursing home.  This benefit can be as high as $1,954.00 per month for a married veteran.  This money can potentially be used for home healthcare or assisted living facilities. We were shocked to learn that so many veterans may be missing out on this valuable benefit, which they have a legal right to receive.  The benefit is not generally used for the cost of nursing home benefits.  

The pension benefits provided by the Veterans Administration generally fall into two categories:  service connected and non-service connected.  This article focuses on non-service connected benefits which are available to certain wartime veterans (or their dependents) who are disabled because of a non-service connected condition and who are in financial need due to their unreimbursed medical expenses.  Once the veteran’s eligibility requirements are met, a family member may be able to obtain benefits based on his or her status as the veteran’s dependent.  

There is a specific portion of the pension program, which is of particular importance.  This program is “Aid and Attendance” (A and A) and is available to a veteran who is not only disabled, but has the additional requirement of needing the aid and attendance of another person in order to avoid the hazards of his or her daily environment.  What that means in English is someone needs to help you to prepare meals, to bathe, to dress and otherwise take care of yourself.  

Under this program, a veteran can receive a maximum of $1,954.00 per month in benefits and a widow or widower can receive up to $1,056.00 as a maximum benefit for A and A for the year 2008.  The applicant must be determined to be “permanently and totally disabled”.  The applicant does not need to be helpless – he/she need only show that he/she is in need of aid and attendance on a regular basis.  Someone who is housebound or in an assisted living facility and over the age of 65 is presumed by the Veterans Administration to be in need of aid and attendance.  

This particular program does have substantial limitations related to the income and assets that are held by the applicant.  It is very important to meet with a knowledgeable veteran’s service officer or an experienced elder law attorney for a pre-filing consultation to determine whether or not you may qualify for this benefit and to review the estate planning work that may be done to assist you in qualifying for this particular benefit.  It is very confusing to many individuals in determining what is the countable income that is measured by the Veterans Administration.  It may appear on first blush that anyone who has a countable income in excess of $18,000.00 per year is not eligible for this benefit.  However, the countable income for veterans’ benefits is determined by taking an individual’s gross income and subtracting from that all of their unreimbursed medical expenses to determine a lower income, which is their income for Veteran Administration purposes.  Income for Veteran Administration purposes is the countable income, which is used to determine whether or not a person qualifies.  

In computing the income of the applicant, certain items can be deducted.  Specifically, unreimbursed medical expenses (UMEs) paid by an individual may be used to reduce the applicant’s income.  

Home attendants or aides are an allowable medical expense deduction, as long as that attendant is providing some medical or nursing services for the disabled person.  

The cost of an assisted living facility, and even part or all of the cost of an independent living facility, can also be an allowable medical deduction to reduce your gross income to a much lower net countable income that may qualify you for veterans’ benefits.  To file a claim for this benefit, it is wise to seek the involvement of a trained veteran’s service officer.  A Veteran’s Service Officer is critical to the filing of an application with the local VA regional office.  It is also important to seek the guidance of an experienced elder law attorney who is familiar with estate planning, disability, Medicaid and veterans’ benefits.  An attorney skilled in elder law can provide a veteran and the veteran’s family with appropriate pre-filing consultations to determine the appropriate steps that must be taken to be able to determine if it would be right to apply for this VA benefit.  

Is Alzheimer's Care a Tax Deductible Expense?

Over the years I have been asked countless times by residents and families "Are the costs associated with the care they receive tax deductible?" While much of the tax code is subject to varied interpretations, and each individual should seek competent advice from their own professionals, it appears that the answer to this question is "likely."

Section #213 of the publication Selected Federal Taxation Statutes and Regulations states "There shall be allowed as a deduction the expenses paid during the taxable year not compensated for by insurance or otherwise for medical care of the taxpayer, his spouse or a dependent to the extent where that expense exceed 7.5 percent of adjusted gross income." The exact definition of medical care has been further explained in Section 1016 "If an individual in a nursing home or a home for the aged because of his physical condition and the availability of medical care is a principal reason for his presence there, the entire cost of maintenance, including meals and lodging is deductible." The key distinction is the purpose of living there. If it is for personal or family reasons, then only the portion of the cost attributable to medical or nursing cost is deductible. The reason that the deductibility becomes cloudy is that service fees in assisted living facilities bundle the medical care component with room and board, making it difficult to determine or justify what portion of the rent covers the care of the resident. Further, most assisted living facilities go out of their way to advertise that they are not a medical care facility. Officially it is defined as: "Assisted living facilities are a type of living arrangement which combines shelter with various personal support services, such as meals, housekeeping, laundry, and maintenance. Assisted living is designed for seniors who need regular help with activities of daily living (ADLs), but do not need nursing home care." Under this definition the deductibility of costs associated with these facilities may be hard to justify.

Publication 502 by the Department of the Treasury, Internal Revenue Service entitled Medical and Dental Expenses helps to clarify the question. "You can include in medical expenses the cost of medical care in a nursing home or home for the aged for yourself, your spouse, or your dependents. This includes the cost of meals and lodging in the home if the main reason for being there is to get medical care. Do not include the cost of meals and lodging if the reason for being in the home is personal. You can however, include in medical expenses the part of the cost that is for medical or nursing care." This means that in an assisted living facility, unless the purpose of the stay is to receive medical care, the cost of lodging and meals may not be deductible.

However, if the individual is chronically ill, as defined under the section entitled Qualified long-term care services all costs associated with the care and supervision of the individual may be tax deductible subject to the 7.5 percent adjustment. Chronically ill is defined in Publication 502: "A chronically ill individual is one who has been certified by a licensed health care practitioner within the previous 12 months as: 1) Being unable for at least 90 days, to perform at least two activities of daily living without substantial assistance from another individual, due to the loss of functional capacity. Activities of daily living are eating, toileting, transferring, bathing, dressing, and continence or 2) Requiring substantial supervision to be protected from threats to health and safety due to severe cognitive impairment." With the enactment of the Kennedy-Kassebaum bill, the law is now clear. Congress stated clearly that the tax code should provide equal consideration for persons with Alzheimer's disease or other irreversible dementia. The only cloudy area remaining is the fee structure of the facility in which they reside.

Another important consideration is the entrance fee, lifecare fee or "founder's fee". "You can include in medical expenses a part of the lifecare fee or founder's fee you pay either monthly or as a lump sum under an agreement with a retirement home. The part of the payment you include is the amount properly allocable to medical care." Many of today's assisted living communities charge an entrance or maintenance fee. This fee is intended to cover administrative processing and maintenance of the property, rendering it a non-tax deductible expense according to the Internal Revenue Service.

Memory Care Units, which are dedicated to caring for people with Alzheimer's disease and related dementia rendering substantial supervision to protect residents from threats to health and safety due to severe cognitive impairment, meet the test. Residents fall under the care of licensed health care practitioners who certify their status. In units specifically designed for the care of those with Alzheimer's disease and related dementia, the care, meals and lodging are in integral part of the complete service plan to constitute "medical care." An entrance fee, if it is intended to cover the cost of the initial assessment, and development of the plan of care for the resident and relates completely to medical care, should qualify it as tax deductible under the definition.

What does all this mean? Well, depending upon your personal income, the deductibility of your monthly fees in a special care unit properly qualified can result in an annual after tax savings of between 15 and 20 percent. If you are looking at several different providers offering similar environments and care, this after tax savings could be a deciding factor on who to choose. So it might be more than worth your while to check this out with your accountant or financial advisor prior to making your decision on where to place your loved one.

Hidden Liabilities of Home Companions

At-home care using home companions or home health aides is the single largest, yet informal system for the delivery of healthcare services in this country today accounting for an estimated 95% of care delivered. Families that hire caregivers or outside contractors such as home health aides or home companions to perform a variety of services may unknowingly be exposing themselves to a variety of risks that may not be covered through their homeowner's or general liability insurance policies. In addition, as an employer, there are certain tax consequences associated with the employment of a home companion for which they may be unaware.

Tax Consequences

Domestic employment practices first received media attention when Attorney General-designate Zoe Baird, was unable to secure what was expected to be a unanimous approval during her January 1993 Senate confirmation hearings due to the failure to pay employment taxes and violation of immigration laws relating to the employment of her domestic help. She was also found to be subject to penalties and fines relating to her employment practices. The Internal Revenue Service requires payroll tax filings by a domestic employer who pays a caregiver more than $1,200 cash wages in a calendar year. These payroll tax obligations may include: Social Security and Medicare Taxes (7.65% of Gross Wages), Federal Unemployment Tax (FUTA), State unemployment and disability insurance taxes levied on the employer, and advance payment of earned income credit for eligible employees. The employer (often the family of the elderly person in need) is required to collect the employee's social security and Medicare taxes. Should the employer fail to collect, they still remain responsible to remit these taxes for the employee. Congress revised the "Nanny Tax" legislation in October 1994, offering employers alternative means to remit the federal payroll taxes for wages paid. This legislation requires employers to disclose the wages paid to household staff on the employer's personal income tax return. Failure to disclose this information will compromise the integrity of your personal tax return. Additionally, there is no statute of limitations on the failure to report and remit federal payroll taxes. You are most likely to be "caught" when a former employee files for unemployment, disability or social security benefits. The state then realizes that the person was receiving unreported compensation. Employers are generally required to pay back taxes, penalties and interest charges, and usually professional fees for an accountant and/or attorney. Employers are required to give their employee a wage and tax statement (Form W-2) no later than January 31.

Additionally, domestic employees must be paid at least the Federal minimum wage, currently $5.15 (9/1/97). Live-in employees must be paid for every hour worked; all employees must be paid overtime for any hours exceeding 40 hours per week. If the person lives on site then the Department of Labor assumes 8 hours sleeping or 16 hours working per day, or 112 hours per week. Since anything in excess of 40 hours per week is required to be paid at time and one half, this situation would result in 72 weekly hours of overtime. This translates to $2,600 per month for 24-hour coverage, not including loading for payroll taxes, which is comparable to the cost of assisted living. For a live-in, fair value of room and board can be deducted from straight pay. Failure to observe employment regulations relating to the payment overtime can subject the employer to multiple damages for the unpaid amounts. Also you are legally required to verify your candidate's employment eligibility under immigration laws using Form I-9.

Insurance

While most home health agencies normally carry comprehensive general liability insurance and professional liability insurance each with separate limits of $1 million per occurrence, and workers compensation insurance, most independent home companions do not. This means that if the home companion that you hired is injured on the job while providing care for your family member you may be liable personally for their injury. New Jersey is one of several states that take the decision for workers' compensation insurance out of your hands by mandating the coverage. Prices vary, but a typical policy costs around $400 for employees making at least $15,000 annually. A typical back injury, which is very common among caregivers, can easily reach $50,000 in medical expenses and lost wages. If the injury results in a disabling condition the employer may be liable for long-term loss of income. Additionally, should there be no workers' compensation insurance in place, the injured caregiver's remedy could entail a law suit against the employer claiming negligence, and typical homeowners policies will not cover any injury to an employee. Be aware that experience among employers has proven that, caregivers tend to have a high incidence of injuries when they realize that their employment may be coming to an end.

Personnel Screening

It is estimated that over 2 million older adults are mistreated each year in the United States. Elder mistreatment first gained attention as a medical and social problem about 20 years ago, when the term "granny battering" first appeared in a British medical journal. The American Medical Association defines elder mistreatment as "an act or omission, which results in harm or threatened harm to the health or welfare of an elderly person." Recognizing mistreatment is often very difficult. The older adult may be unable or unwilling to provide information due to a cognitive impairment or out of fear of retaliation by the abuser. Older adults are often fearful of being placed in a nursing home, and some may prefer to be abused in their own home rather than moved to such a facility. The elderly have been found to be taken advantage of, stolen from, verbally and even physically abused. Most states now require employers to perform a criminal offender record information check prior to providing employment to caregivers. This is a simple procedure that is often overlooked by families hiring home companions. Often these individuals are available for employment because they failed the screening process and were unable to secure full time employment due to past employment difficulties. It is also important to verify the status of your companion's certification, and if they are qualified or trained to provide the services that the elderly person requires. Many home companions may be forced to provide treatments or medication administration that is not permitted by state law under their license simply because there is no one else available to provide it.

Understanding your liability exposure when employing independent home care companions can be a complex task. While the access to this apparently inexpensive pool of help for an aging parent may at first glance be an attractive option for many families seeking to help their aging parents remain at home, the ultimate risks to the family could be devastating. Further, as the level of care increases over time, it is often much less expensive and more advantageous to seek healthcare professionals to deliver this care in a safe, homelike environment where the quality of life can be very high.

Quiet the Guilt

Feeling a Little Guilty?

There are few people on earth better equipped with the natural innate ability to make us feel guilty than our mothers. In our culture guilt has been instinctively crafted to an art form designed to influence our behaviors. It is a learned behavior passed on from generation to generation. Feelings of guilt can be self-inflicted or can be imposed upon us by other people. When guilt is legitimate, it spurs us to do better. When it is unwarranted, it only causes anxiety and hinders our ability to make sound decisions and provide quality care.

As a parent's care needs increase while they undergo the natural aging process, the amount of time and energy required of the caregiver increases exponentially. It is very normal to have feelings of resentment as demands on our time begin to radically change our daily routines. Often adult children already have their hands full caring for the needs of their own children. The average woman in America today will spend more time caring for her parents than for her children. She is typically 45 to 65-year-old married female with children at home, in college, or with families of their own and thus can feel herself sandwiched between two generations. As her parents' needs for assistance increase over time, she often feels as though she simply cannot do enough for them. Often she will become frustrated when her efforts to try to "fix" things that go wrong in her parents life begin to create conflicts in her own life, and the fixes never seem to last. Ultimately she begins to feel that she is losing control of her life and realizes that things that were once routine for her and easily manageable are quickly becoming more than she can handle. Conflicting priorities can often lead to feelings of helplessness and guilt that she is not doing anything well. This self-imposed guilt then becomes her constant companion.

Others can also impose guilt upon us. Failures in our elder caring duties, and obligations to our own families can lead to criticism from those whose opinions we value most. One is never really prepared to accept responsibilities thrust upon them by their aging parents. Few people understand the complexities of health problems, insurance coverage, assisted living and nursing homes, drug plans, Medicare, legal obligations and other senior-related issues. Caregivers continuously bombarded by these issues are bound to make mistakes, which will frustrate them even further. Uninformed family members, and siblings seeking to offer help, often only serve to highlight the primary caregiver's shortcomings. Just remember, there is nothing out there that you can't learn, seek out the advice of professionals such as Geriatric Care Managers, Eldercare Attorneys, local support groups, and the local library.

Feelings of responsibility set us up for the probability of occasional feelings of guilt. We must be able to distinguish between legitimate guilt that motivates us to do better and harmful guilt that might be undeserved and leave us dispirited.

Sometimes it might be helpful to write down the things that make you feel guilty. Examine the underlying reasons and determine if a solution is within your power. Sometimes compartmentalizing a large problem into several smaller, issues can make things more manageable. Constantly fretting over what seems to be an insurmountable responsibility can only lead to more anguish and more guilt. Tackling and completing a few problems can give you a sense of accomplishment and build your confidence to handle those never-ending new surprises as they arise. Consider that your parent may be feeling guilty because of they are imposing on you, while you are feeling guilty that you don't have the time to do more.1 Also, it is never helpful anguish about the past, concentrate on what can be done now and resist the temptation to allow old conflicts to create guilt today.

To determine if the guilt you are feeling is warranted, ask yourself if you have done everything that is practical and necessary within your own limitations. What is important is ensuring the quality of life and meeting the realistic needs of the elderly. It is not your role to insure everyone's happiness, only your own. Perhaps much of the guilt comes from thinking that you have more influence than you really do.

Often as the caregiver is pulled in conflicting directions, she may invite her aging parent to come live with them. Caring for a loved one at home may not be the best solution for either. Many people have made promises to each other about their elder care when they are young thinking the day will never come, but it always does. Often the caregiver struggles to meet the ever-increasing needs of their loved one at great personal sacrifice. Be realistic about what level of care that you can safely provide. Financial resources should be applied before the caregiver themselves begin to weaken. Often the decision to move out of the home is delayed until a nursing home is the only option. Consider using the financial resources while she can still gain some benefit from them in a more social environment. Once the funds are exhausted, the Medicaid alternative is always available in the nursing home setting. Many senior living environments can provide the additional cushion of care for your parent when they really need it. This way professionals can deal with the issues that may be unfamiliar to you and when you visit your parent, your time with them can be spent more relaxed. This will help to relieve the stress that may be building in your relationship, and help to quiet the guilt.