By Angela Stringfellow on May 9, 2018, 12:21:29 PM
Caring for a loved one with Alzheimer’s disease can be challenging, not only emotionally but also financially. As the costs of assisted living, nursing home care, and memory care continue to rise, many families struggle with managing the financial aspect of care. More families are opting to keep their loved ones at home, but these family caregivers often find that they need to cut back on their hours at work or stop working altogether in order to provide the care their loved one needs.
Because Alzheimer’s disease is a progressive disease, a person diagnosed with Alzheimer’s disease may live for several years – as many as 20 years, in some cases. As the disease progresses, however, a person with Alzheimer’s disease will gradually require more care and assistance with activities of daily living (ADLs), or routine daily tasks such as bathing, dressing, meal preparation, and ambulation.
Due to the progressive nature of the disease, many families find that they need to take advantage of a variety of different programs and services over time. The broad landscape of care options, services, payment sources, and financial implications can be overwhelming for many families. We’ve created this guide to help family caregivers and other family members understand the various care options for people with Alzheimer’s disease, as well as the financial implications and payment options available. Below, you’ll find 50 expert tips and insights on topics such as sources of funding for Alzheimer’s care, financial planning tips, and other strategies for managing the cost of Alzheimer’s care.
Facts and Figures About Alzheimer’s Care Costs
- The cost of living independently with an informal caregiver skyrockets to five figures when a loved one is moved to a senior living community. “The family of a patient living independently or with an informal caregiver pays about $850 a year in related costs. But once that loved one is moved to a health care facility, the families' costs skyrocket to $20,535 per year, according to the Shriver Report. This money goes toward adult day care, nursing home, assisted living and paid caregivers such as companions and home health aides. And that care can go on for years — one-third of caregivers have been in their role for more than five years, says the report.” - Cynthia Ramnarace, The High Costs of Caring for Alzheimer's Patients, AARP; Twitter: @AARP
- Memory care is more expensive compared to traditional senior living options, but the care provided is more comprehensive. “Regular assisted living provides seniors with personal care support, such as meals, help with bathing and dressing, and medication management. It costs, on average, about $3,300 per month for a one bedroom apartment. The average cost of memory careis about $5,000 for a single resident, but such facilities go quite a bit further to effectively provide care for those with Alzheimer’s or other dementias, with 24-hour supervised care for patients at all stages of the disease.” - Sarah Stevenson, The 7 Things You Need to Know About Memory Care, A Place for Mom; Twitter: @APlaceforMom
- Many people with Alzheimer’s disease end up on Medicaid to cover healthcare needs. “If you are one of the estimated 15 million Americans caring for someone with dementia, you know that it's a uniquely devastating disease. Dementia—the most common form is Alzheimer's—robs you of the person you love. It attacks memory, personality, language, and physical abilities. It can last for years, even decades. And it has no cure.
“The financial toll can be nearly as large as the personal loss. Over the last five years of life, the average out-of-pocket cost of care for dementia patients totaled $61,500—81% more than for people without dementia—according to a new study in the Annals of Internal Medicine. Nearly half of the dementia patients ended up on Medicaid, the government health care program for impoverished Americans, compared to about 20% of patients suffering from heart disease or cancer.” – Donna Rosato, Coping With the Costs of Dementia: The Early Stage, Time.com Money; Twitter: @TIMEMagUSA
- Prescription medications add to the overall cost of care. “Regardless of the location in which the care is provided, many individuals with Alzheimer's or dementia require prescription drugs. Consumer Reports finds that the average individual with Alzheimer's pays between $150 - $200 / month for their medications.” - Payment Options & Financial Assistance for Alzheimer's / Dementia Care, Paying for Senior Care; Twitter: @PayForElderCare
- Senior living communities that specialize in memory care are more expensive than standard senior living options. “Relatives often try to place their loved ones in a dedicated facility that specializes in treating patients with dementia. Those beds cost far more than a typical assisted living facility — up to several thousand dollars a month more, depending on the quality and location. But that’s typically an all-inclusive package.
“When there aren’t any available rooms in specialty facilities, Alzheimer’s patients often end up in assisted living facilities that only cover the basics — food and shelter. In most facilities, any additional need comes with a price tag.
“And patients with dementia have many additional needs.” – Megan Thielking, $75 for reminders to eat: Alzheimer’s patients face flurry of fees while waiting for specialized care, STAT; Twitter: @statnews
- Family caregivers incur costs associated with caring for a loved one with Alzheimer’s disease. “The average dementia caregiveris a woman in her mid-forties, usually the daughter of the person with dementia. Statistics show that caregiving families are more likely to live in poverty — and that working caregivers may lose as much as $109 per day in wages and benefits because of the demands of caregiving.
“Care begins with family members for many reasons. For one, families cover costs — in addition, many spouses and adult children simply don’t want to institutionalize a loved one if they can be cared for at home.
“In fact, says Shawn Herz, MSG (Masters of Science in Gerontology), director of programs at the Los Angeles Caregiver Resource Center, a program of the University of Southern California, many people with dementia would stay with family caregivers longer if it weren’t for the fact that caregivers burn out. A small investment in respite care services (funds to pay for someone to spend time with the dementia patient while the caregiver takes a break), caregiver retreats, and other community-based support systems can keep dementia patients from being placed in an elderly care setting before they truly need it, she says.” - Madeline R. Vann, MPH, Medically Reviewed by Pat F. Bass, III, MD, MPH, Juggling the Costs of Dementia Care, Everyday Health; Twitter: @EverydayHealth
- Unpaid caregivers account for an estimated 18.2 billion hours of care for loved ones with Alzheimer’s disease. “Caregivers of people with Alzheimer’s or other dementias are providing care for a longer time, on average, than caregivers of older adults with other conditions. Fifty-seven percent of family caregivers of people with Alzheimer’s or other dementias in the community report that they provided care for four or more years.
“According to the 2017 Alzheimer’s Disease Facts and Figures report, in 2016, unpaid caregivers of people living with Alzheimer’s and other dementias provided an estimated 18.2 billion hours of care valued at more than $230 billion.” – Robert Egge, Alzheimer's caregivers feel cost of care in multiple ways, The Hill; Twitter: @thehill
- Nursing home care is not the only long-term care option for people with Alzheimer’s disease. “You may have other long-term care options (besides nursing home care) available to you. Talk to your family, your doctor or other health care provider, a person-centered counselor, or a social worker for help deciding what kind of long-term care you need.
“Before you make any decisions about long term care, talk to someone you trust to understand more about other long-term care services and supports like the ones listed below. You might want to talk to:
- Your family
- Your doctor or other health care provider
- A person-centered counselor
- A social worker
“If you’re in a hospital, nursing home, or working with a home health agency (HHA), you can get support to help you understand your options or help you arrange care. Talk to:
- A discharge planner
- A social worker
- An organization in a "No Wrong Door System," like an Aging and Disability Resource Center (ADRC), Area Agency on Aging (AAA), or Center for Independent Living (CIL)
- There are three levels of care that a person with Alzheimer’s disease or dementia may need. “Levels of Care - In general, there are three levels of care that an individual may need — custodial, intermediate and skilled. These terms refer to the type and intensity of care that an individual requires.
“Custodial care - Custodial care is often referred to as basic or personal care. It assists a person with activities of daily living (i.e. assistance with bathing, eating, dressing and other routine activities). It is less intensive or complicated than intermediate or skilled care. Custodial care can be provided in many settings, including home, assisted living and nursing facilities. By definition, custodial care does not need to be provided by a skilled professional. Skilled professionals are defined as Registered Nurses, Physical Therapists, Speech Pathologists and Occupational Therapists. Although many health aides do have certification, they are not considered "skilled" professionals as defined by Medicare. Dementia care is often time considered custodial or basic care.
“Intermediate care - Intermediate care is designed for people who require assistance with activities of daily living, some health services, and nursing supervision. However, intermediate care does not include constant nursing care. This level of care may include assistance with personal care, periodic health monitoring (i.e. monitoring of blood pressure or blood sugar levels) and medication reminders.
“Skilled care - Skilled care is for individuals who need 24-hour medical supervision, skilled nursing care, or rehabilitation, but do not need to be hospitalized. A physician's order is required for skilled care provided at home and in a nursing facility.” – LiveandWorkWell.com, Care And Housing Options For People With Dementia, via AARP Medicare Plans.Healthline.com
Sources of Funding for Alzheimer’s Care
- There are four primary payment options for covering the cost of residential memory care. “There are four basic ways to pay for full-time residential memory care: Private pay (out-of-pocket), Long-term care insurance, Medicare and Medicaid.
“Many families pay for the cost of full-time residential memory care out-of-pocket. Check the long term care costs for your state to aid your planning. Medicare might provide some coverage, but it is usually only for limited periods of time following a specific medical event. Medicaid does offer long-term coverage, but eligibility varies from state to state. Check with your state medical services agency to learn more. Also, some communities may not accept Medicaid, which can limit a family’s options. For many, long-term care insurance offers a good way to ensure continuity of care at the memory care facility of choice. Do your homework, though, because several factors can affect your long-term care insurance costs and benefits.
“The take-away is, if your family may someday face elder care responsibilities, whether Alzheimer’s-related or not, the sooner you discuss and plan for how such care will be paid for, the better.” - Alzheimer's Care, SeniorAdvisor.com; Twitter: @SeniorAdvisor_
- It’s not uncommon for families to have to dip into retirement funds or savings, and many family caregivers end up reducing their hours at work or giving up outside employment altogether. “First, Alzheimer's takes a person's memory. Then it takes their family's money.
“That's the central finding of a report published Wednesday by the Alzheimer's Association on the financial burden friends and families bear when they care for someone with dementia.
“‘What we found was really startling,’ says Beth Kallmyer, vice president of constituent services for the organization. ‘The cost of paying for care was putting people in a situation where they had to make really difficult choices around basic necessities — things like food, medical care, transportation.’
“The report, based on a survey of more than 3,500 Americans contributing to the care of someone with dementia, also found that:
- Friends and family spent, on average, more than $5,000 a year of their own money on the expenses of their loved one with dementia, ranging from food to adult diapers.
- More than one-third of these contributors to care who had jobs had to reduce their hours or quit.
- To make ends meet, about 13 percent had to raise money by selling personal belongings, such as a car.
- Nearly half of the care contributors surveyed had to dip into their savings or retirement funds.” – John Hamilton, Big Financial Costs are Part of Alzheimer’s Toll on Families, NPR; Twitter: @NPR
- Understand the various parts of Medicare and what types of services are covered under each. “Medicare is a Federal Government health insurance program that pays some medical costs for people age 65 and older, and for all people with late-stage kidney failure. It also pays some medical costs for those who have gotten Social Security Disability Income (discussed later) for 24 months. It does not cover ongoing personal care at home. Here are brief descriptions of what Medicare will pay for:
“Medicare Part A:
- Hospital costs after you pay a certain amount, called the "deductible"
- Short stays in a nursing home for certain kinds of illnesses
- Hospice carein the last 6 months of life
“Medicare Part B:
- Part of the costs for doctor's services, outpatient care, and other medical services that Part A does not cover
- Some preventive services, such as flushots and diabetes screening
“Medicare Part D:
- Some medication costs
“You can find more information about Medicare benefits at www.medicare.gov, or call 1-800-633-4227, TTY: 1-877-486-2048.” – Long Term Care: Paying for Care, National Institute on Aging; Twitter: @Alzheimers_NIH
- Medicare covers up to 100 days of inpatient skilled nursing care, but only following a qualifying hospital stay. Many Alzheimer’s patients, however, require what’s known as custodial care. “The basics of Medicare coverage confuse many people. If care isn’t deemed ‘medically necessary,’ then Medicare won’t pay for it, according to Linda Adler, founder and CEO of the patient advocacy group Pathfinders Medical.
“’The part that people have a challenge with is understanding what constitutes a medical issue and what constitutes assistance or custodial care,’ she says. Adler and others who represent patients are seeing growing demand as people, like those with Alzheimer’s, are faced with mounting costs, limited resources and often confusing insurance coverage.
“Custodial care is often what Alzheimer’s patients need most. The nonmedical care – either at home or in a long-term care facility – makes day-to-day life more manageable. Medicare doesn’t cover assistance with bathing, dressing, eating and preparing meals, changing bed linens and help using the toilet.
“Often, in the case of Alzheimer’s, a patient will become physically ill and require hospitalization for something like pneumonia or a broken hip. After inpatient treatment at the hospital, Medicare will cover some of the costs for a limited period of skilled nursing and custodial care at a nursing or rehabilitation facility. But when this period, usually 100 days, runs out, the patient is no longer covered.” - Elizabeth Renter, An Alzheimer’s Complication: Some Care May Not Be Covered by Medicare, U.S. News; Twitter: @USNewsHealth
- Medicaid is an option for some, but not all people with Alzheimer’s disease will qualify for Medicaid. Therefore, you should find out what your state’s criteria is for Medicaid and start planning long before your loved one may need Medicaid coverage, if possible. “People with dementia also may qualify for Medicaid through pathways targeted to people with LTSS needs.Some states extend Medicaid eligibility to people that require a certain level of care but have incomes above limits for other pathways. In addition to income and asset requirements, these pathways require that people meet certain functional eligibility criteria (e.g., need institutional level of care, determined by need for assistance with a certain number of activities of daily living such as bathing or eating and/or instrumental activities of daily living such as cooking or managing medications). These criteria vary across states and eligibility pathways. However, functional eligibility criteria may not always account for the full extent needs among people with dementia. For example, some functional needs assessments may only account for a need for hands-on assistance and may not recognize a need for verbal or written cues or monitoring to complete daily activities, which may be experienced by people with dementia. As a result, not all people with dementia are eligible for Medicaid; instead, eligibility depends on the number, type, and extent of their functional needs.” - Rachel Garfield, MaryBeth Musumeci, Erica L. Reaves, and Anthony Damico, Medicaid's Role for People with Dementia, The Henry J. Kaiser Family Foundation; Twitter: @mmusumec, @KaiserFamFound
- Many families mistakenly believe that Medicare will cover the cost of Alzheimer’s care in a senior living community. “The median annual cost for a private room in a skilled nursing facility in Tucson last year was $90,896, and for assisted living it was $45,000, says Genworth Financial Inc., a Fortune 500 company that sells long-term care insurance. In its 2015 annual Cost of Care survey, Genworth found that Americans paid approximately $16,060 more per year in 2015 for a nursing home than they paid in 2010.
“Medicare, the federal government insurance program for Americans over the age of 65, does not pay for long-term care, including home care, aside from 100 days skilled services or rehabilitative care.
“Families must then contend with how to pay. The options include long-term care insurance, public assistance through ALTCS (or other similar Medicaid programs for people over 65 in other states), Veterans Aid, or private pay.” – Stephanie Innes, Costs pile up fast for dementia care, Tucson.com; Twitter: @TucsonStar
- Respite care grants are available through various programs and organizations for eligible families. “Caregiver respite programs provide trained caregivers that attend to an individual in need of care in order to give their primary caregiver time to relax and attend to their own needs. Care is provided by third party agencies, which are funded by grants from two national organizations; the Alzheimer’s Foundation of America and the Alzheimer’s Association.
“The Alzheimer’s Foundation of America (AFA) provides “Family Respite Care Grants” by funding local, non-profit, member organizations. These organizations work directly with the families to administer the grants. These local organizations sometimes combine funds with other sources, so each chapter may not always use the name “Family Respite Care Grants”.
“The Alzheimer’s Association (AA) has a Respite Grant Program, which is also administered by the local chapters, not the national organization.
“Alone, respite care is not a solution to paying for senior care, but when combined with other care options and tax credits, respite care might make the difference that enables an Alzheimer’s patient to continue receiving care in the home instead of moving to a residential community.” - Alzheimer’s Respite Care (Assistance for Caregivers), Paying for Senior Care; Twitter: @PayForElderCare
- People with early-onset Alzheimer’s disease may be able to withdraw from retirement accounts early. “If your loved one is younger than 59½ and has been diagnosed with dementia, Alzheimer’s, Parkinson’s or certain other illnesses, he or she may be able to withdraw from an IRA or employee-sponsored retirement plan early, without incurring the usual 10 percent tax penalty. You should consult with a qualified CPA or financial professional who can guide you on the finer points.
“Some pension plans also pay disability benefits to early-onset dementia or Alzheimer’s patients. If your parent is a member of a pension plan, you should check with the plan provider to find out what he or she might be eligible for.
“Early-onset dementia may also qualify your loved one to receive Social Security disability income (SSI or SSDI) which, in turn, would provide Medicaid eligibility (after assets are spent down).” – Bryan Reynolds, How to Pay for Care for a Loved One with Alzheimer's or Dementia, Marjorie P. Lee Senior Living Blog; Twitter: @bryanrey
- Members of the armed forces may qualify for the Federal Long Term Care Insurance Program (FLTCIP) if they meet eligibility criteria. “You may qualify to purchase long term care insurance through commercial insurance programs or through the Federal Long Term Care Insurance Program (FLTCIP).
- Eligible beneficiaries include active duty and National Guard members activated (called or ordered to active duty service for more than 30 days in a row) for more than 30 days, retired uniformed service members (Includes active duty and retired members of the: U.S. Army, U.S. Air Force, U.S. Navy, U.S. Marine Corps, U.S. Coast Guard, the Commissioned Corps of the U.S. Public Health Service and the Commissioned Corps of the National Oceanic and Atmospheric Association), and members of the Selected Reserve.
- Eligibility and enrollment requirements are complex. Not everyone who applies for this insurance will be approved for it.
- For complete details, please visit the FLTCIP website.” – Long Term Care, TRICARE; Twitter: @TRICARE
- VA Benefits may cover some of the costs of Alzheimer’s care for eligible Veterans. “Eligible veterans with dementia who seek care from the VA can participate in the full range of health care services including in-home care, community-based, outpatient, inpatient acute and long-term care services.
“This may include:
- Home-based primary care, such as homemaker/home health aide services, respite care, adult day health care, outpatient clinical care, inpatient hospital care, nursing home, or hospice care.
- In addition to general care for veterans with Alzheimer's or dementiain VA outpatient and inpatient settings, some VA facilities have developed specialized dementia care programs such as outpatient dementia clinics and inpatient memory care units.
“There are no separate VA eligibility criteria for veterans with dementia. The standard eligibility criteria and application process should be followed.” - Veterans Benefits for Alzheimer's and Dementia Care, AgingCare.com; Twitter: @AgingCare
- There are several programs for Veterans with Alzheimer’s disease. “The U.S. Department of Veterans Affairs' Geriatrics and Extended Careresources include an overview of eligibility, and details on home- and community-based services, nursing homes and other residential care.
“The U.S. Department of Veterans Affairs offers support and resources to caregivers.
“National Council for Aging Care - Complete Guide for Veteran Seniors
Few senior veterans take advantage of the numerous health, career, educational, and financial resources available to them. We cover the resources that can help improve comfort and quality of life.
“Additionally, there are other options available aside from private pay including: Long Term Care Insurance, Veterans Benefits, and Medicaid as well as to preserve one's estate.” - Alzheimer's Disease Statistics: Paying For Alzheimer's Memory Care, Elder Options of Texas; Twitter: @ElderOptionsTX
- Some states have non-Medicaid assistance programs for people with Alzheimer’s disease who have low incomes. “There are many state-funded or state-managed assistance programs that are designed for low-income individuals that require assistance with activities of daily living. While not specifically designed for Alzheimer's patients, given that many Alzheimer's patient are not working, have low incomes and require daily assistance, it is fairly common for these individuals to qualify for these programs. See a complete list of state non-Medicaid assistance programs.
“In addition to the more generalized assistance programs, several states have programs designed specifically for individuals with Alzheimer's, dementia or related conditions. Unlike the programs described above, these programs usually don't consider an individual's financial income or assets as an eligibility factor. They simply require a diagnosis of Alzheimer's, dementia or other related memory disorder to qualify for the program.” - Payment Options & Financial Assistance for Alzheimer's / Dementia Care, Paying for Senior Care; Twitter: @PayForElderCare
Financial Planning Tips for a Loved One with Alzheimer’s Disease
- Have a family meeting to discuss options. “Care costs will vary depending upon where you live. Have a family meeting to discuss how much future care might cost and to make financial plans. Consider using professional legal and financial advisors for guidance.” - Planning for Care Costs, Alzheimer’s Association; Twitter: @alzassociation
- Plan ahead for future costs. “Don't wait to create a financial plan for caring for a loved one with Alzheimer's disease. Because of the potential length of the disease, it's important to minimize expenses from the beginning to limit the disease's overall cost.
"’One of the best tips is don't wait until something happens,’ advises Mari Adam, a financial planner based in Boca Raton, Florida. ‘We urge people to plan ahead and think ahead. First, what can (Alzheimer's sufferers) still do? What are they having difficulty doing that they shouldn't be doing?’
“Planning for future needs in the early stages of the disease can help prevent financial shortfalls down the road.” - Lucy Lazarony, 7 tips for managing Alzheimer's costs, MoneyRates.com; Twitter: @MoneyRates
- Alzheimer’s disease is a disease that progresses over many years, so having conversations with aging parents early on how to plan for unexpected life events is key. “Because Alzheimer’s is slow to progress, the disease can linger for years — even decades in some cases, prolonging the strain on your finances at the same time as you’re trying to care for a loved one.
“’A lot of people think that when they’re fighting Alzheimer’s, the expense is centered around the idea of needing long-term care,’ says Dave Harris, vice president of the Nationwide Financial Retirement Institute. ‘That’s a major part of the expense, but it doesn’t really end there.’
“That’s why it is important to begin planning ahead and having that conversation on how to best prepare for unexpected life events, especially when it comes to Alzheimer’s Disease and other forms of dementia.” - Kathleen Coxwell, Paying for the Booming Costs of Alzheimer’s Care, NewRetirement; Twitter: @NewRetirement
- State of residence
- Population density (rural vs. urban)
- Agency vs. independent caregiver
- Local laws and ordinances
- Demand (especially for residential care)
- With which activities of daily living is assistance required
- Tax credits and deductions” – Cost of Dementia Care at Home, in Adult Day Care, in Assisted Living, or in Nursing Homes, Dementia Care Central There are many factors that influence the cost of caring for a loved one with Alzheimer’s disease. “Without question, using outside assistance to care for a loved one with dementia or Alzheimer’s can be very expensive. Of course, costs vary depending on the type of care used. Home care, adult day care, assisted living and nursing home care all provide vastly different services and have dramatically varying costs. However, there are many subtle factors that influence that cost of care, such as:
. Assess family resources and funds. “First and foremost, take stock of family resources and funds. Make sure that your family member’s legal and financial affairs are up to date, that you know where various accounts and funds are located, and that a trusted party receives a durable power of attorney to handle finances. Because persons with dementia can make bad decisions and even become victims of fraud, be vigilant in monitoring accounts and protecting remaining funds.” – David Troxel, How can I afford Alzheimer’s services? Long-term care?, For Alzheimer’s Families
- Evaluate if your loved one may qualify for Medicaid at least five years before they may need assistance. “The time to start investigating whether an Alzheimer’s patient might qualify for Medicaid – the federal health program for indigent Americans – is at least five years before he or she might need assistance. That’s because Medicaid reviews five years' worth of financial records to determine if someone would be eligible.
“Medicaid doesn't make direct cash payments to individuals or pay for the unskilled home care many Alzheimer's patients need. It does, however, pay all or a portion of nursing home costs for people with Alzheimer's who meet eligibility guidelines for income and assets.” - Elizabeth Hanes, How to Cut the Caregiving Costs of Alzheimer’s Disease, Next Avenue; Twitter: @NextAvenue
- It’s important to consider all options, as in-home care can be as costly as residential care in a senior living community in some cases. “People living with Alzheimer’s and other forms of dementia are among the highest users of long-term care, with more than 75 percent of people with the disease admitted to nursing homes by the age of 80(as compared to just four percent of the general population), according to a report from the Alzheimer’s Association. While in-home care represents an increasingly popular option for independence-minded seniors, these costs can be equally if not more crippling for older adults and their families.” - Alzheimer’s Drives Up the Cost of In-Home Care, The Senior List; Twitter: @SeniorList
- If you suspect a loved one has Alzheimer’s disease or dementia, talk to an elder law attorney as soon as possible. “If you even suspect Alzheimer’s, investigate planning immediately. There’s a variety of possible planning procedures that need to be considered in light of your particular situation, in order to obtain an optimal result. Most of these techniques also require drafting of detailed legal documents to protect your assets and income.
“Time is of the essence when planning involves Alzheimer’s disease because, by law, you need to have sufficient mental capacity to understand and approve the plan designed for you, or to sign documents authorizing others to act on your behalf. It’s vital to realize that the sooner you act, the greater control you’ll have over the legal and other decisions that determine how your financial future will unfold.” - Top Ten Elder Law Strategies for Alzheimer’s Patients and Their Families, Lamson & Cutner, P.C.; Twitter: @LamsonAndCutner
- If your loved one is covered by a private health insurance plan, find out what (if anything) related to Alzheimer’s care may be covered. “For most individuals 65 or older, Medicare is the primary source of health care coverage. However, private insurance, a group employee plan or retiree health coverage also may be in effect.
“If the person with dementia is younger than 65 years old (considered younger-onset Alzheimer's), he or she may have private insurance, a group employee health plan or perhaps retiree medical coverage. If he or she changes policies, check how soon Alzheimer's disease expenses will be covered under the new policy.” - Paying for Care, Alzheimer’s Association; Twitter: @alzassociation
- Read insurance policies closely. “If a life insurance policy provides for ‘accelerated’ or ‘living’ benefits, you may be able to recoup half or more of the face value of the policy. Or the policy may offer a ‘life assurance’ benefit, which pays directly for long-term care, although at a much lower cost than the value of the policy.” – Paula Spencer Scott, Paying for Memory Care: 7 Things to Know, Caring.com; Twitter: @Caring
- Long-term care insurance works best when purchased well in advance. “This works well if you planned ahead. However, most seniors don’t have long term care insurance, and if the diagnosis is Alzheimer’s it’s too late to apply for this type of coverage because you won’t pass the insurance companies’ underwriting process. Plus, traditional long term care insurance has proven challenging for many seniors because the monthly cost (premium) is experience-rated. Just like your car or homeowners’ insurance cost (premium) is based on the insurance carrier’s “experience,” so is long term care insurance. This means that if too many people put in claims while you are still paying, then the price you started with is not necessarily the future cost. The insurance company can increase the price by going to the State Insurance Commissioner and showing that they need a rate adjustment; but to you that’s a price increase. A new generation long term care coverage called “asset-based long term care” can be very effective.” - How to Get Help Paying for Alzheimer’s Care In These Troubled Economic Times, Alzheimer’s Hope
- Choose a Medicare Part D prescription drug plan that covers the most medication-related costs. “While Medicare offers little by way of custodial care, it does provide diagnostic and medical treatment that Alzheimer's patients need. The new annual wellness physical exam, which is free and part of the health care law, includes testing for cognitive impairment. "This is a critical, yet hardly known, provision," Steinberg says. Medicare also covers visits to a geriatric assessment clinic.
“Alzheimer's patients and their families need to carefully choose a Medicare Part D prescription-drug plan or private Medicare Advantage plan. Alzheimer's medications are generally covered under Part D, but plans vary regarding co-payments. Use the Medicare Plan Finder to compare the total costs of your drugs under each policy. The Alzheimer's Association offers a guide about coverage for common Alzheimer's drugs.
“If you choose an Advantage plan, make sure your neurologist and other physicians you see often are covered as in-network providers. Otherwise, you will pay higher out-of-pocket costs. You can compare Advantage plans by using the Plan Finder.” – Kimberly Lankford, Does Insurance Cover Alzheimer's Care?, Kiplinger; Twitter: @Kiplinger
- Make sure you have the proper legal documents in place to oversee your loved one’s care. “In general, planning for long-term careis like planning for dementias like Alzheimer’s disease. While many of the same planning steps apply, certain steps take on added importance. The loss of executive function associated with dementiacan create hardships for caregivers in arranging or paying for care. The ability to comprehend finances and care choices is often among the first signs of dementia. To avoid problems in planning, the following steps can be taken:
- Advanced Care Directive — to make sure care choices reflect preferences
- Medical Power of Attorney— to make sure decisions can be made for persons no longer able to communicate their wishes
- Power of Attorney — to make sure financial and estate decisions can be made to pay for care, apply for assistance (i.e. Medicaid, state based programs) or for the ongoing management of an estate.” – Alzheimer’s, LongTermCare.gov
- If your loved one receives VA benefits, they’ll need to assign appropriate financial representatives. “If you receive compensation and pension from VA or other federal benefits, you may also need to assign:
- A fiduciary.This is a person who can receive and manage a Veteran’s VA benefits for him or her. You can pick a person to apply for the role. The person must then be approved by the VA. The role is active when the VA is notified that you are no longer able to manage your own benefits. The VA may be notified with medical documents from a hospital. Or the VA may be informed by documents from a court. To learn more about the VA Fiduciary Program, go to benefits.va.gov/fiduciary.
- A representative payee.This person has the same role as a fiduciary, but for other federal benefits. The person can manage your benefits from Social Security. And he or she may manage state agency benefits. To learn more about the duties of this role, read Managing Someone Else's Money: Help for Representative Payees and VA Fiduciaries.” – Caring for Dementia: Legal and Financial Planning, Veterans Health Library; Twitter: @DeptVetAffairs
- Find out if your loved one’s health insurance plan has lifetime limits and/or exclusions. “If your parent or grandparent has just been diagnosed with Alzheimer’s or dementia, and has private health insurance and/or long-term care insurance, one of the first calls that should be made is to his or her agent or insurance provider.
“It’s likely that his or her policy has a lifetime maximum on coverage. You need to know what that is, and when to expect that maximum will be reached.
“It’s also possible that there are specific coverage exclusions listed in the policy. You should review the coverage with your loved one’s agent so that there are no surprises when a charge is disallowed.
“If you know what the limitations are on the coverage, you may be able to work with doctors and retirement care providers to avoid them altogether, without compromising the standard of care.” – Bryan Reynolds, How to Pay for Care for a Loved One with Alzheimer's or Dementia, Marjorie P. Lee Senior Living Blog; Twitter: @bryanrey
- Be aware that your loved one’s needs will change as Alzheimer’s disease progresses. “As Alzheimer’s progresses, care needs of your loved one will mount. From meal preparation and dressing, to bathing and personal care, everyday tasks will become more difficult. During these later stages, you might consider one of these residential care options:
“1. Assisted living: For individuals who require assistance with tasks such as dressing or preparing meals but do not need skilled medical care, assisted living might deliver the right amount of support. In these communities, residents can have their own apartment or suite or share a residence to help reduce costs. Along with a 24-hour staff, typical assisted living services include recreational activities, housekeeping, laundry and transportation.
“2. Nursing home: When your loved one reaches a point of needing skilled nursing care, you might consider a nursing home. These facilities offer room and board, plus round-the-clock medical care and supervision. They will also work with you regarding care planning, special nutrition issues, other medical concerns and spiritual needs.
“3. Alzheimer’s special care units (SCU’s): Special memory care units within residential facilities are designed for people with memory problems. Generally, these units group together residents with Alzheimer’s or dementia on their own floor or wing of a larger care residence. Among the many services in an Alzheimer’s SCU, you should expect that staff has received specialized training in care needs for people with Alzheimer’s, programming caters to the needs of people with memory problems and safety measures, such as secured exits, are ensured.” – Jennifer Wegerer, 6 Care Options for Alzheimer’s Patients, Alzheimers.net; Twitter: @Alzheimersnet
Strategies for Managing Alzheimer’s Care Costs
- Consider long-term care insurance. “For those unable to pay for assisted living out of pocket, private insurance, Medicare or Medicaid may help — but these services generally don’t pay for everything. Long-term care insurancecan address that gap, and estate planning can give you greater access to financing long-term care.” – Sarah Stevenson, 10 Ways to Beat the High Cost of Assisted Living, A Place for Mom; Twitter: @APlaceForMom
- If your state offers Medicaid Waivers, find out how to get on the waiting list or how to qualify for a waiver. “Most states also offer Medicaid Home and Community Based Services Waivers, which are often abbreviated as HCBS Waivers. As the name indicates, services are provided in the home and community. This is especially ideal for those with dementias who do not require 24-hour supervision and prefer to remain living in their home. A perk of these HCBS Waivers, like the state Medicaid plan, is that many of them allow for consumer direction, also called self-direction, when it comes to choosing a personal caregiver. This means that a family member, often an adult child, is able to come into their parent’s home and assist with everyday tasks. This might include helping the senior with dementia pick season appropriate clothing to wear, reminding him or her of doctor appointments and providing transportation, choosing and preparing healthy meals, and doing laundry and light housecleaning.
“However, it’s important to note, unlike the personal care services provided via Medicaid, which are entitlements, HCBS waivers are not entitlements. This means that there are only a certain number of allotted spots for each waiver program and waiting lists may exist.” - Programs that Pay Family Members to Care for Loved Ones with Alzheimer’s and Related Dementias, Dementia Care Central
- Supplemental Security Income (SSI) may be an option for some people with Alzheimer’s disease. “In addition to public insurance and medical assistance programs, the government provides help for some people who can no longer work because of a disability.
“In most cases, Alzheimer's disease qualifies as a disability.
“To qualify for Supplemental Security Income, though, a person must have less than $2,000 in net resources. A couple cannot have more than $3,000 in net resources. The term net resources refers to money in bank accounts, cash, investments and real estate earnings.
“It does not include burial plots, a family's house or, in most cases, the family car. Contact a Social Security Administration office to learn more about the program. The national office can be reached by calling (800) 772-1213.” – Betsy Lee-Frye, Using Government Assistance to Help Pay for Alzheimer's Care, Verywell; Twitter: @Verywell
- Medicare’s comprehensive hospice benefit may be useful for people in the very late stages of Alzheimer’s disease. “While nursing home care may be required, Medicare will only pay for 100 days of care and it must be following a hospital stay. Medicare will pay for home health care for up to 35 hours a week, but the individual must be certified as ‘homebound.’ While some late-stage Alzheimer’s patients may be physically able to leave their homes, they may still qualify as homebound because they are psychologically unable to function outside their home. Then again, they may not qualify because home health care is not supposed to be for a ‘continuous’ need.
“Finally, Medicare provides an all-inclusive hospice benefit for individuals determined to have less than six months to live. Very late stage Alzheimer’s patients will qualify for this program which includes all doctor, nursing and personal care, prescription drugs, homemaker services and counseling for the individual and their family.
“Despite its shortcomings, Medicare, when used fully – and especially when augmented with Medicare Supplemental Insurance – can make a significant contribution towards the expense of caring for a loved with Alzheimer’s. Readers may want to explore this article which discusses other Medicaid and Veterans’ benefits for Alzheimer’s.” - Alex Guerrero, What benefits does Medicare provide for Alzheimer’s patients?, MedicareResources.org; Twitter: @MedicareMonitor
- Find out if your loved one is eligible for the PACE program. “PACE is a government program available in certain states to people with Medicare or Medicaid who:
- are at least 55 years old;
- live in an area serviced by a PACE program;
- have been assessed to be frail enough to meet the state’s standards for nursing home care; and
- sign and agree to the PACE enrollment agreements.
“If you qualify, PACE will cover all the medical, social and rehabilitative services you need, including items that Medicare does not cover, such as social work services, meals and nursing home care. You will receive all of your health care (Medicare and Medicaid benefits) through the PACE program.” - If I have Medicare, how can I get help paying for my long term care needs?, MedicareInteractive.org; Twitter: @medicarerights
- Medicare Part B typically covers a portion of the costs to diagnose and treat Alzheimer’s disease. “For the most part, ongoing medical care to diagnose and treat Alzheimer’s disease is covered by Medicare Part B, including visits to primary care doctors and specialists, lab tests, speech and occupational therapy, home health care and outpatient counseling services. Medicare pays 80 percent of these costs, and you will be responsible for the remaining 20 percent after you’ve met your annual $147 Part B deductible.
“Inpatient hospital care is also covered under Medicare Part A with a $1,216 deductible and coinsurance. And, as part of health care reform, Medicare is also covering 100 percent of annual wellness visits, which includes testing for cognitive impairment.” – Jim T. Miller, How Medicare Covers Alzheimer’s Disease, Huffington Post; Twitter: @HuffPost
- Medicare may pay for some other services (other than skilled nursing home care) for a limited time under certain conditions. “In addition to skilled nursing facility services, Medicarepays for the following services for a limited time when your doctor says they are medically necessary to treat an illness or injury:
- Part-time or intermittent skilled nursing care
- Physical therapy, occupational therapy, and speech-language pathology that your doctor orders that a Medicare-certified home health agency provides for a limited number of days only
- Medical social services to help cope with the social, psychological, cultural, and medical issues that result from an illness. This may include help accessing services and follow-up care, explaining how to use health care and other resources, and help understanding your disease
- Medical supplies and durable medical equipment such as wheelchairs, hospital beds, oxygen, and walkers. For durable medical equipment, you pay 20 percent of the Medicareapproved amount
“There is no limit on how long you can receive any of these services as long as they remain medically necessary and your doctor reorders them every 60 days.” - Long Term Care and Medicare, Medicaid, and More, Dementia Today; Twitter: @DementiaToday
- There are a variety of care options for people with Alzheimer’s disease who remain in their own homes. Consider all options to develop a care plan that’s right for your loved one. “Home care for a relative with Alzheimer's is often highly valued. To make it possible — and support your own health and well-being — you might consider various home care resources. For example:
- Home health services.Home health services help with personal care, such as eating, bathing, dressing, grooming and toileting. Some agencies help with meal preparation and household chores.
Basic nursing care — such as help with medications, wound care and medical equipment — is typically available. Some agencies provide additional services, such as physical therapy.
- Respite and companion care services.Companion care is ideal for giving you the peace of mind to spend a few hours away. It also gives people with Alzheimer's an opportunity for socialization. Meaningful relationships can develop between people with dementia and their companions.
You might call on family, friends or neighbors to stay with your relative when you need a break. If you'd prefer a more formal arrangement, consider respite care services provided by community organizations.
- Adult day centers.Adult day care centers offer socialization, limited health services, mind and body exercises, music, support groups, and other activities in a safe, supervised environment. Participants leave home and attend daily or a few hours a week. Transportation and meals are sometimes provided. Some adult day centers are designed for people living with Alzheimer's disease.
- Geriatric care managers.This type of manager can evaluate your loved one's needs and coordinate resources. In some cases, geriatric care managers can take over nearly all aspects of care. Some local government agencies and charities offer geriatric care consulting services free or on a sliding-fee scale.” – Mayo Clinic Staff, Alzheimer’s: Consider Options for Long-Term Care, Mayo Clinic; Twitter: @MayoClinic
- For full-time caregivers, local community respite programs may provide a temporary, periodic reprieve while also being more affordable than other care options. “If you are the caregiver for a person who has Alzheimer’s or Parkinson’s, you should become familiar with the available respite care programs in your community. Designed to temporarily relieve family members, these programs provide a respite caregiver who comes into the house for a few hours, allowing you to go out, shop, see a movie, or just relax on your own. Taking care of yourself is the only way you can continue the care for your loved one.
“Adult day care programs are another alternative for giving respite to caregivers. These programs provide socialization and therapeutic activities in a safe environment at a church or dedicated facility. While there is generally a charge, often the charge is reduced or even waived depending on financial circumstances.
“The best way to start with getting help for being a caregiver at home, and accessing respite and adult day care programs, is to contact the local Area Agencies on Aging or the local chapter of the Alzheimer’s or Parkinson’s Associations. You may also find helpful suggestions from local nursing homes or other families who have had similar experiences.” - Getting Care for Alzheimer’s or Parkinson’s in North Carolina, The Elderlaw Firm: Elder & Estate Planning; Twitter: @NCElderLawyer
- Hiring home health aides is an option for some family caregivers who are able to provide part-time care for a loved one, although the costs vary from state to state and can become expensive if a loved one requires many hours of care. “If family members cannot provide around-the-clock care, finding a home health aidewho is trained to assist seniors who suffer from Alzheimer’s and similar conditions may be the best solution for families who want a parent or grandparent to remain in their home. A home health aide can assist the senior at times when other family members are working or just need a break from the strain of caring for a parent who suffers from dementia.” - The Cost of Alzheimer’s, Dementia and Memory Care, SeniorCareAdvice.com; Twitter: @SeniorCareTalk
- For caregivers who still need to maintain full-time employment, adult day care is a part-time option that works for some families. However, the care provided in these settings is not 1:1, and adult day care may not be appropriate for loved ones in the later stages of Alzheimer’s disease. “An Adult Day Care center can provide a safe, stimulating environment for the individual with Alzheimer's disease. Generally, Adult Day Care centers are open from approximately 7:00 a.m. to 6:00 p.m. each weekday. A center of this kind can be an option for a caregiver that must work during the week, but is not ready to place their loved one in a 24 hour facility. Some centers offer respite care for weekends and overnight stays as well. Services that may be offered in Adult Day Care include meals, activities, trips, and games. The cost varies depending on the services offered. Some centers may have a sliding scale fee depending on the income of the member. It is important to check out the training of the staff and assess the overall environment.” - Alzheimer's Disease - Options for Care, Texas Department of State Health Services; Twitter: @TexasDSHS
- Home care is often the ideal option if your loved one is in the early stages of Alzheimer’s disease, and it’s typically more affordable compared to residential senior living and memory care options. “Home Careis typically the first choice of care for loved ones with dementia or Alzheimer's disease in early and middle stages. Many families find it best to keep their parents at home in familiar and comfortable surroundings with minimal disruption to familiar routines. However it is crucial right from the beginning to recognize the need to hire outside help such as a companion, nursing assistant or homemaker in order to make homecare viable. Home Care is generally a less costly option for Alzheimer's care especially if you or other family is able to share in the caregiving duties. However with that said the biggest concern is the huge amount of stress imposed on caregivers due to demands of caring for Alzheimer's patients. As a home care nurse, I have encountered many families with the best intentions simply "burn out". Neglecting other responsibilities, lacking confidence in caregiving skills, and resenting demands placed on your time, are but a few common complaints. It is emotionally taxing on families to witness first-hand their loved one's loss of cognitive function even to the point of not recognizing them. The basic key to success for in home care of your loved ones is to allow other caregivers to relieve you of some of the day to day burdensome responsibilities.” - Alzheimer's Care, CarePathways
- There are various in-home care services that can make caregiving easier to manage, offering different services (and at different costs) depending on the type of care you choose. “Not all in-home services are the same. Some in-home services provide non-medical help, such as assistance with daily living. Other in-home services involve medical care given by a licensed health professional, such as a nurse or physical therapist.
“Common types of in-home services:
- Companion services: Help with supervision, recreational activities or visiting.
- Personal care services: Help with bathing, dressing, toileting, eating, exercising or other personal care.
- Homemaker services: Help with housekeeping, shopping or meal preparation.
- Skilled care: Help with wound care, injections, physical therapy and other medical needs by a licensed health professional. Often times, a home health care agency coordinates these types of skilled care services once they have been ordered by a physician.” – In-Home Health Care, Alzheimer’s Association; Twitter: @alzassociation