Whether it's your parent, grandparent, family friend or other loved one, finding out that someone close to you has Alzheimer's is devastating. A new dementia diagnosis like Alzheimer’s disease presents many challenges, from caregiving concerns and health care details to navigating the grieving process and, ultimately, dealing with a new reality. You may feel isolated and overwhelmed as you begin to travel down the road of coping with your loved one's diagnosis and planning for the financial impact of their future care needs. Fortunately, you're not alone. From government programs to community resources, a support network is available to help with legal and financial concerns.
More than 5.8 million Americans are living with Alzheimer's disease; that number is projected to increase to 14 million by 2060. With Alzheimer's posing an increasing threat to America's seniors, numerous organizations and government entities have stepped up their efforts to provide support, care and assistance to patients and their families. These efforts are greatly needed, as cu
rrent estimates indicate that the United States spends more than $300 billion each year to treat Alzheimer's disease.
Planning for the future is never easy, and an Alzheimer's diagnosis complicates things further. However, starting the planning process early gives you greater flexibility, and it can help the person living with Alzheimer's disease to participate in decision-making and to make their wishes known. This guide provides helpful information you can use to plan for your loved one's legal, financial and health care needs. It contains an overview of the essential documents you'll need, the programs you can take advantage of, and the professionals who can help you along the way. No matter where your loved one is in the Alzheimer's journey, this guide can provide peace of mind by helping you plan for all the "What ifs" of the future.
As you begin to plan for your loved one's future care needs, you'll encounter several standardized documents and forms designed to help with matters like estate planning, long-term care, end-of-life considerations, finances and more. Learn more about the most important legal, financial and health care planning documents below.
Advance directives are legal medical documents that outline your loved one's health care preferences and desires in the event that they're medically incapacitated. These documents dictate important matters like what treatments they do and do not wish to receive and who should make medical decisions on their behalf when they cannot do so for themselves. It's recommended that these documents are prepared shortly after your loved one's diagnosis. While conversations about end-of-life care are never easy, your loved one must have the opportunity to make their wishes known.
The table below contains an overview of the most important health care documents to obtain and discuss with your loved one's health care team.
|Type of Medical Document||How and What It's Used For|
|Power of Attorney for health care or Health Care Proxy (terms vary by state)||A power of attorney for health care or health care proxy is a third party that can make medical decisions on behalf of your loved one when they cannot. These include decisions on treatments, care facilities and end-of-life considerations.|
|Physician Orders for Life-Sustaining Treatment (POLST)||A POLST dictates the types of life-sustaining treatments your loved one wants or does not want in the event that they become seriously ill. It can include DNR (Do Not Resuscitate) and DNI (Do Not Intubate) orders. 48 out of 50 states participate in POLST.|
|Living Will||A living will expresses your loved one's wishes for what kind of medical treatments they want near the end of their life, including life-prolonging treatments like feeding tubes.|
|Medical Release of Information||This allows your loved one�s doctors to share their medical information with trusted family members or friends. It can help make the process of coordinating their care easier.|
Numerous financial and legal hurdles need to be addressed following an Alzheimer’s Disease diagnosis. You and your loved one will need to make arrangements for their property, finances and investments. You’ll also need to prepare for future long-term care needs and end-of-life planning to ensure your loved one's wishes are adhered to as much as possible. Some of the legal documents that can help you accomplish these planning goals include:
|Type of Legal Document||What It's Used For|
|Power of Attorney||A power of attorney allows your loved one to name a third party to make financial and legal decisions on their behalf once they are no longer able to.|
|Will||A will identifies who your loved one has chosen as the executor and beneficiaries of their estate. A will should be signed and put in place soon after your loved one�s diagnosis.|
|Living Trust||A living trust is another method for your loved one to dictate how their estate should be handled after their death. They will name a trustee to manage their assets after they have passed.|
|Guardianship/Conservatorship||Guardians or conservators are appointed by a judge to make decisions about a person�s health care and investments. Guardianship is an option if your loved one can no longer care for themselves.|
There is no cure for Alzheimer's or dementia, and the time may come when long-term care is needed. In the aftermath of your loved one's Alzheimer's diagnosis, it can be difficult and even painful to think about the future. However, starting the planning process early can help you and your family feel more in control and reduce your levels of stress down the road. Over time, it may become more difficult for your loved one with Alzheimer's to communicate their thoughts and feelings effectively, making planning difficult or even impossible. Without advance directives and other decisions in place, you and your family may find yourselves unable to come to a consensus on the care and treatment of your loved one.
By making the important decisions early on, you can focus on supporting your loved one and being there in the present without worrying about what may come in the future. Here are tips you can use to begin the planning process.
Conversations about health care, financial matters, estate planning and end-of-life care are always difficult, and an Alzheimer's diagnosis adds additional difficulty. It's only natural that you and your loved one may not want to have these discussions, but it's essential to have them early and often. Having these discussions while your loved one can still participate allows them to communicate their concerns, fears, wishes and desires for their care. If you're unsure where to start or how to approach the topic, the American Bar Association offers a free Advance Health Care Planning Toolkit to help make the conversation easier.
Before meeting with a lawyer, financial advisor or other professional, you'll want to have certain documents on hand and ready to provide. It's also important to keep these documents readily available so you can refer back to them throughout the planning process. The most important documents to locate include:
As your loved one's disease progresses, their health care needs may change-- and in response, their plans for the future may need to change too. Things can change quickly with Alzheimer's, and regularly re-evaluating your plans can ensure that you always have the most up-to-date information in case of an emergency. You and your family should take the time to periodically reassess your loved one's advance care directives to make sure they still reflect your loved one's wishes. If the day should come when your loved one can no longer communicate those preferences, the named health care proxy should review the advance care directives to ensure they advocate on your loved one's behalf.
You, your loved one and your family don't have to go through the planning process alone. For example,while you can prepare most legal and health care documents without an attorney, working with an attorney can help you ensure that everything is accounted for. In the next section of this guide, we'll cover where you and your family can get help if you encounter questions, concerns or roadblocks in the planning process.
Navigating the legal and financial planning process following an Alzheimer’s diagnosis can seem overwhelming, but it doesn’t have to be. There are professionals who can help you and your family with everything from drafting a will or power of attorney to budgeting for future health care needs.
|Professional||How They Can Help|
|Elder Law Attorneys||Elder Law Attorneys specialize in legal matters related to older adults and the disabled. An elder law attorney can help you navigate the legal ramifications of your loved one�s Alzheimer�s diagnosis, including assisting with preparing a will, power of attorney, living trust and more. You can use the online directory of the National Academy of Elder Law Attorneys to find legal help in your area. You can also search LawHelp.org to find free or low-cost legal programs near you.|
|Geriatric Care Managers||Geriatric care managers are trained professionals, usually nurses or social workers, who specialize in geriatrics. A geriatric care manager can help you develop a long-term care plan for your loved one and connect you with the services you need. They can also help coordinate your loved one's care and ease the emotional stress of family caregivers. You can search the Aging Life Care Association website or call (520) 881-8808 to find geriatric care managers near you. Health Care Providers|
|Health Care Providers||Your loved one�s health care team is a vital resource for long-term care planning. For example, your loved one�s doctor can refer them to one of the nation�s Alzheimer's Disease Research Centers, where specialists can help with disease management and connect you with Alzheimer�s resources.|
Numerous federal and state programs provide financial assistance for people with Alzheimer's and dementia. Eligibility for these programs can vary based on income level, state of residence, age and more, so it’s important to review all program information before applying. In the table below you’ll find an overview of each program as well as relevant contact information.
|Government Program||What It Is||How It Can Help||Contact Information|
|Medicare||A government program that provides health insurance for Americans age 65 and older and those with qualifying disabilities.||Medicare parts A & B cover in-patient care and medical services that people with Alzheimer's may need. These include: <ul> <li>Annual wellness visits</li> <li>Diagnostic testing</li> <li>Mental health services</li> <li>Prescription drug coverage (if enrolled in Medicare Part D)</li> <li>Medically necessary nursing home stays (100 days)</li></ul>||Questions about claims and other information can be answered by calling 1-800-MEDICARE (1-800-633-4227). Additional contact information for Medicare offices by state can be found at Medicare.gov.|
|Medicare Advantage||A private insurance program with plans that provide the same level of coverage as Original Medicare along with extras like prescription drug coverage. Also known as Medicare Part C.� There are six types of Medicare Advantage Plans. Consider Special Needs Plans (SNPs), which can provide coverage for specific services that people with Alzheimer�s need. These services may not be otherwise covered by Medicare or other forms of Medicare Advantage plans.||Enrolling in a Medicare Advantage plan can help your loved one get the health care they need outside of Original Medicare. Some Medicare Advantage plans are specifically designed for people with Alzheimer's and dementia.�||You can compare Medicare Advantage plans in your area online �and call 1-800-MEDICARE (1-800-633-4227) for help.�You can also find Medicare Advantage contact information for your state on Medicare.gov.�|
|Medicaid||A joint federal and state program that pays for health care for low-income individuals.�||If your loved one with Alzheimer�s meets your state�s income and asset requirements, they can get their health care covered by Medicaid. This includes long-term care costs like nursing homes.||Contact your state Medicaid office to find more information about Medicaid eligibility and enrollment. You can find more information about the Medicaid program as a whole by visiting Medicaid.gov.|
|Social Security Disability Insurance (SSDI)||Monthly benefits paid to disabled individuals who paid Social Security taxes during their career.||Early-onset Alzehimers is one of the disabling conditions that qualifies for expedited processing under the Social Security Administration�s Compassionate Allowances program. This means your loved one can start receiving their benefits within weeks rather than months or even years.�||You can contact Social Security by phone at: 1-800-772-1213 and learn more about the SSDI eligibility requirements online.|
|Supplemental Security Income (SSI)||Payments are based on financial need for individuals age 65 and older or with disabilities.�||The monthly SSI payments can help pay for your loved ones ongoing health care needs.�||You can contact Social Security by phone at 1-800-772-1213 and learn more about the SSI program and its eligibility requirements online.|
Along with the government programs explained above, private insurance programs can help finance your loved one’s Alzheimer’s and dementia care. Since these policies are administered by private companies, they can vary significantly when it comes to cost, eligibility requirements, exclusions and coverage terms.
|Type of Insurance||What It Is||How It Can Help||Contact Information|
|Long-term care insurance�||Insurance plans designed to cover long-term health care services such as facility-based care.||Your loved one must apply for long-term care insurance coverage before they are diagnosed with Alzheimer�s.||You can visit LongTermCare.Gov to learn more about Long-term care insurance.|
|Long-term disability insurance||An insurance plan that provides income for individuals who can no longer work due to long-term illness or injury.||If your loved one is currently covered by an insurer or an employer-provided long-term disability plan (ERISA), they can file a claim to receive disability payments to replace 60 to 70 percent of their income.||Refer to your loved one�s policy documents for relevant contact information.|
|Life insurance||Insurance policies that provide financial benefits to dependents upon the death of the insured. Term life insurance provides coverage for 10-30 years. Permanent life insurance provides coverage for the insured�s entire life.||Your loved one may be able to borrow from their policy�s cash value or receive it as a loan. Some life insurance plans also allow benefits to be paid early if the insured person is not expected to live beyond 6-12 months||Refer to your loved one�s policy documents for relevant contact information.|
|COBRA (Consolidated Omnibus Budget Reconciliation Act)||A program that allows employees to continue their employer group health plan coverage after leaving their job.�||If your loved one has early-onset Alzheimer's and is still working, COBRA can continue their health coverage for up to 18, 29 or 36 months after they leave their job. COBRA can be useful to help maintain health coverage until your loved one becomes eligible for Medicare.||You can call 1-866-444-3272 or reach a benefits advisor online to learn more about COBRA.|