It’s a wrenching experience to witness loved ones suffering from Alzheimer’s disease or dementia, the progressive conditions that destroy memory and other mental functions. For the caregivers, it’s often a marathon of emotional and physical challenges, ranging from problem-solving to stamina to resiliency to fitness.
And that doesn’t cover perhaps the most enormous concern — finances.
About 5.7 million Americans have Alzheimer’s disease (95% percent are 65 and older) with annual treatment costs swelling to $277 billion (including $60-billion out-of-pocket charges), according to the Alzheimer’s Association.
Alzheimer’s problems and the associated costs are predicted to get even worse. Alzheimer’s deaths increased 123% from 2000 and 2015, while heart disease (the leading cause of American deaths) fell 11% during the same period. If no new treatments are found, the number of Alzheimer’s patients will hit 13.8-million (with medical costs of $1.1-trillion) by 2050.
The good news is there’s financial help for Alzheimer’s caregivers through various organizations and programs, plus other resources that help with training and practical advice.
Help for Alzheimer’s Caregivers
Beyond the vital roles of number-crunching, budgeting and finding ways to conserve money, caregivers can get inundated with information. Seemingly, they must become experts in all areas of a patient’s life. It can be overwhelming. But some areas warrant careful education and consistent attention.
Stages of Dementia — Caregivers should become educated in the stages of dementia. The early stages can be tricky because the patient will likely continue normal activities. Alzheimer’s symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks. In the middle stages, patients may experience depression, anxiety, irritability and repetitive behaviors, leading to sleep changes, physical and verbal outbursts and wandering. Patients might lose their ability to find words, express thoughts and follow conversations. In the late stages, around-the-clock care is usually required. The patient has difficulty eating and swallowing. Assistance is needed with walking and personal care.
Daily Care Plans — It helps to develop a daily pattern of activities so the patient can live well for as long as possible. Patients want to remain healthy, active, engaged and independent. If some situations become too stressful for the patient, eliminate them and work together to find more relaxing activities. The role of caregiver doesn’t come with an instruction manual, so it’s helpful to learn all you can about symptoms, treatment and behavior management.
Communicating with Patients — Communication is important, especially in the early stages. Patients generally want to have a say in key decisions, such as legal, financial and long-term care planning. These aren’t easy conversations, but knowing the patient’s wishes will help the caregiver’s confidence in following through with a plan. The sooner, the better.
Safety — When the patient needs to stop driving, try to involve them in the decision, pointing out specific examples of why it is no longer safe. Assure them you will provide or arrange rides. Home safety will become paramount, especially when a patient can no longer live alone. The prevention of “wandering’’ becomes a crucial part of care. Alzheimer’s Navigator provides step-by-step guidance on topics such as home safety and driving.
Respite Care — It’s short-term care for the Alzheimer’s patient — either in a heath-care facility or an adult day center — that allows the caregiver to get a rest break or go on a vacation. This is generally not covered by insurance, although Medicare and Medicaid might offer assistance. To see if there are other sources of funding in your state, visit the ARCH National Respite Locator at archrespite.org/respitelocator.
Support Groups — It’s useful to spend one-on-one time with the patient, working through mutual feelings of denial and fear, discovering meaningful activities or talking about expectations. But finding peers with similar situations can be even more valuable. Look for an Alzheimer’s Association early-stage support group near you. It could be designed for both the person with dementia and the caregiver. Sharing ideas and experiences with other caregivers can be helpful. You can join support groups or online message boards through your local Alzheimer’s Association chapter.
Resource and Training Programs — Especially in the late stages of Alzheimer’s and dementia, it’s important to have the necessary knowledge to deal with a patient’s changing needs. The Alzheimer’s Association offers educational workshops and resources that can provide you with advanced caregiving skills. Caregivers must also retain the insight to take care of themselves, whether it’s scheduling a free afternoon, building a support network, connecting with other caregivers, asking for help, staying healthy and remaining engaged with fun activities.
Does Medicaid Cover Dementia Care?
Yes, Medicaid can cover care for Alzheimer’s and dementia. But you must qualify for the federal program, which has different requirements in each state. Medicaid, which can cover all or a portion of nursing home or long-term care costs, is typically available to individuals or families who have low income and low cash assets.
For specifics, you can search online by state at http://medicaid.gov or call 1-800-633-4227. The State Medical Assistance office should also have information on how to qualify for Medicaid in your state.
Medicaid’s income eligibility requirement sometimes involves a three-year “look back,’’ where representatives investigate a family’s financial history to see if assets were transferred or sold below cost in order to become eligible for Medicaid.
Not all providers accept Medicaid, so contact individual providers before beginning treatment. Visit the Centers for Medicare and Medicaid Services website for contact information to local Medicaid offices.
Meanwhile, Medicare, the federal health-insurance program for people 65 and older, can cover some (but not all) of the services needed for Alzheimer’s and dementia. Medicare generally helps with acute care, doctor visits, prescription drugs, hospital stays and short stays in a skilled nursing facility. It usually doesn’t pay for long-term care.
Other Government Benefits and Assistance Programs
There are many government benefits and assistance programs available to help with the care for Alzheimer’s and dementia. Government benefits might not erase all of the costs, which can be crippling, but should provide a helping hand and needed financial help for dementia patients.
Here’s a rundown:
Social Security — It provides retirement income, disability payments and other payments to workers who contributed to the plan during their employment. For information, log onto www.ssa.gov or call 1-800-772-1213.
Veterans Benefits — If an Alzheimer’s patient was in the armed services, they might qualify for Veterans Administration program benefits, including long-term care. For information, log onto http://www.benefits.va.gov/benefits or call 1-800-827-1000.
State and Area Agencies on Aging — They provide information on affordable health care services, support groups and legal services.
State Departments of Health and Social Services (DHSS) — They provide information on state and local programs, including respite services and financial assistance.
Supplemental Security Income (SSI) — The government provides help for some people who can’t work because of a disability (in most cases, Alzheimer’s qualifies as a disability). To qualify for SSI, a person must have less than $2,000 (and a couple less than $3,000) in net resources, which refers to money in bank accounts, cash, investments and real estate earnings. It does not include a home or car. For information, call the Social Security Administration national office at (800) 772-1213.
Social Security Disability Income — People who are disabled and no longer able to work should look into SSDI qualifications. According to the Social Security Administration, a disability means the individual cannot work at all. The disability must have lasted at least six months and is anticipated to last for at least one year. Benefits are determined on an individual basis and will continue until the individual turns 65, when they will originate from Social Security’s retirement program.
Caregiver Support Programs — Many states provide assistance to family members who provide long-term care. The help ranges from funding to counseling. To find a state office, contact the National Family Caregiver Support Program (a division of the U.S. Administration on Aging) at (202) 619-0724.
Hospice — The hospice philosophy focuses on quality and dignity by providing comfort, care and support services for people with terminal illnesses. To qualify for hospice benefits under Medicare, a physician must diagnose the person with Alzheimer’s disease as having less than six months to live. Contact the National Association for Home Care and Hospice at (202) 547-7424 or agencylocator.nahc.org or the Hospice Foundation of America at (800) 854-3402 or www.hospicefoundation.org.
ADEAR — The National Institute on Aging Alzheimer’s and related Dementias Education and Referral (ADEAR) Center helps with information on diagnosis, treatment, patient care, caregiver needs, long-term care and clinical trials related to Alzheimer’s disease. Contact ADEAR at (800) 438-4380 or www.nia.nih.gov/alzheimers.
Alzheimer’s Foundation of America — It provides information on how to care for people with Alzheimer’s, while also listing services to help the disease. Call (866) 232-8484 or log onto www.alzfdn.org.
Eldercare Locator — As part of the Administration on Aging, it provides information on home care, adult day care and nursing homes. Call (800) 677-1116 or log onto https://eldercare.acl.gov.
Home Health Care Services — Aides can provide care in the hour, staying for a few hours or around-the-clock. Generally, you must pay for all costs not covered by Medicare, Medicaid or insurance. Some services are better than others, so it pays to do your research. At Medicare’s Home Health Compare, you can learn more about some of the home health care providers in your state. Or call Medicare at (800) 633-4227.
Adult Day Care Services — It provides a safe environment, activities and staff that pays attention to Alzheimer’s patient needs. Transportation is usually provided. Most services are not covered by insurance and the charges are by the hour. Call the National Adult Day Services Association at (877) 745-1440 or log onto www.nadsa.org/consumers/choosing-a-center.
General Information — For a range of information on different federal assistance programs and how to apply, log onto https://benefits.gov or call 1-800-FED-INFO (1-800-333-4636).
Funding for Dementia Care
Beyond government programs and out-of-pocket payments, sometimes it’s necessary to get creative. Here are some other sources of funding:
Alzheimer’s Association — The national organization is a good place to start. Call the Alzheimer’s Association 24/7 helpline at (800) 272-3900 or refer to its Benefits Check-Up, which spotlights programs that can help pay for medications, health care, food, utilities and more.
Private Insurance — Medicare is the primary source of health care coverage for individuals 65 and older. Younger people should check private insurance, a group employee plan or retiree health coverage to see if it includes Alzheimer’s expenses.
Employee Benefits — If the Alzheimer’s patient continues to work during the disease’s early stages, benefits could include paid sick leave, short-term disability benefits and a flexible spending account. Make sure to review the employer’s benefits handbook and ask about benefit availabilities. Keep a written confirmation of all benefits.
Retirement Benefits — This could include individual retirement accounts (IRAs), annuities and pension plans. They can provide financial resources, even if the patient hasn’t reached retirement age. Pension plans can pay early benefits if a person is defined as disabled. Alzheimer’s patient could withdraw money from an IRA or employee-funded retirement plan before age 59 1/2 without paying the typical 10% early withdrawal penalty. Social Security also pays early benefits if disability requirement are met.
Personal Assets — These could include investments (such as stocks, bonds, savings accounts and real estate) and personal property (such as jewelry or artwork).
Reverse Mortgage — It’s a loan that allows an individual age 62 or older to convert home equity into income, while remaining the homeowner. The amount eligible to be borrowed is usually based on the person’s age, the home’s equity and the lender’s interest rate. Reverse mortgages don’t have an impact on Social Security or Medicare benefits, but they might affect qualification for other government programs. Reverse mortgages come due one year after the homeowner moves from the home, so the decision to execute a reverse mortgage usually hinges on how many years until that point. If the patient is in the early stages and won’t require residential care for five years, a reverse mortgage probably makes sense. But if someone is looking at moving within two years, a reverse mortgage might be considered an expensive source of funds. But if there’s a healthy spouse who will continue to live in the home while the patient moves into a care facility, it could be a sound decision. More on types of reverse mortgages.
Life Insurance Conversions — Life insurance policies can be exchanged for Alzheimer’s care services, allowing the policyholder to receive money for care while maintaining the option for Medicaid eligibility. Policyholders with limited life expectancy can request accelerated death benefits or a death benefit loan. Or the policy could be sold for a lump sum, leaving the buyers with monthly payments and collection of the death benefit when the individual dies. Another option is for an intermediary organization to determine the policy’s value and convert it into months or years at a residential care facility.
Community Support Services — While examining funding for dementia care, know that some community organizations provide low-cost or free services, including respite care, support groups, transportation and home-delivered meals. You should investigate using family, friends, neighbors, faith communities and volunteer groups. Help is out there. You just need to find it.