When a loved one receives a diagnosis of Alzheimer’s disease, it’s natural to worry about their quality of life. Alzheimer’s and other forms of dementia cause memory loss, confusion and difficulty organizing thoughts, which can interfere with activities such as preparing meals, caring for pets and performing grooming and health-related activities. A senior with a recent Alzheimer’s diagnosis may also experience feelings of anger, resentment and fear as they think about how their lives are likely to change.

The physical and emotional challenges of dementia are well-publicized, but what many seniors and their loved ones don’t realize is that Alzheimer’s disease has a significant financial impact. Seniors with Alzheimer’s and other forms of dementia may need to hire in-home caregivers or consider residential care as the disease progresses. They may also need expensive medications to prevent their symptoms from getting worse, increasing their out-of-pocket medical expenses.

Although you can’t reverse Alzheimer’s disease, there are many things you can do to prepare for a potential diagnosis or reduce the impact of a recent diagnosis. One of those things is having your legal and financial affairs in order. This guide offers planning tips for seniors with dementia and their caregivers, describes some of the resources available to help make the costs of Alzheimer’s care more manageable and provides an overview of the legal and financial documents you need to protect yourself and the people you love.

Overview of Important Documents for Legal, Financial and Health Care Planning

As you engage in the planning process, you’ll need a variety of documents to make your wishes known and ensure that the decisions you make are legally binding in your state. The infographic below provides an overview of the most common legal, financial and health care documents used by people with dementia who want to prepare for the future.

Overview of Important Documents for Legal, Financial and Health Care Planning

Key Health Care Documents for People With Alzheimer’s and Dementia

When it comes to making health care decisions, no two people are exactly the same. That’s why you need to make your wishes clear to loved ones and your medical care team members. Advance directives are written documents that outline your wishes regarding medical matters. The legal requirements for advance directives vary based on state law, so it may be helpful to consult an attorney who has experience preparing these documents for seniors in your state.

Advance directives typically have two components: a living will and a durable health care power of attorney. A living will may contain instructions regarding the following:

Care Decision

Details

Ventilator Use

A ventilator is a machine that breathes for a patient who cannot breathe on their own. As you plan for your care, think about whether you'd want your care team to use this machine to help you breathe. If you want mechanical ventilation, specify how long you want it to last. For example, you may want to discontinue it after three days if there's no improvement in your condition or you may want to continue this type of treatment indefinitely.

Tube Feeding

If you can't eat on your own, tube feeding is an option for delivering nutrients to your body. If you don't want any tube feeding, make this clear in your living will. If you're willing to receive tube feedings for a limited time, document this wish.

CPR

Health care professionals perform cardiopulmonary resuscitation when someone's heart stops beating. Document whether you want a health care professional to perform CPR on you.

Antibiotics

Think about what you'd like your care team to do if you develop a serious infection. Would you want it to treat the infection with antibiotics? If so, include that in your living will.

Organ Donation

It's your right to decide whether you want to donate your organs or tissues. Use your living will to document your wishes.

Palliative Care

Palliative care, also known as comfort care, aims to keep you comfortable. It's not a treatment for a specific medical condition. If you prefer to receive palliative care.

Hemodialysis/Peritoneal Dialysis

Failing kidneys can't filter fluid and waste out of the blood. Hemodialysis and peritoneal dialysis maintain normal fluid levels and filter wastes out of your bloodstream if your kidney function declines. As you complete your living will, think about whether you'd want your care team to use a machine to filter your blood.

Health Care Powers of Attorney

A durable health care power of attorney names someone to make medical decisions on your behalf if you become unable to do so. This person is known as your health care proxy. When you select a proxy, choose someone who understands your wishes and is willing to make decisions based on your values, not theirs.

Orders for Life-Sustaining Treatment

Physician orders for life-sustaining treatment and medical orders for life-sustaining treatment support the wishes outlined in your advance directive. Medical professionals will issue them, ensuring that everyone involved in your care is aware of how you feel about CPR, feeding tubes, mechanical ventilation and related issues. 

Do-Not-Resuscitate (DNR) Orders

A DNR order indicates that you don’t want members of your care team to use CPR or other methods to restart your heart if it stops beating. Although you can spell out your wishes regarding CPR in your living will, a DNR order offers an extra layer of protection. If you have a medical emergency and the responding staff member doesn’t have your living will on hand, they can look at the DNR order in your hospital room to determine your wishes regarding resuscitation.

Documents Used for Estate Planning and Financial Management

Documents Used for Estate Planning and Financial Management

Once you document your wishes regarding medical care, you need to work on financial and estate planning. Financial planning helps ensure you can continue paying your bills even if your symptoms progress. You’ll also have the opportunity to designate someone to make financial decisions for you if you become incapacitated. Estate planning ensures that your executor distributes your property according to your wishes. It can also help you minimize the tax consequences of certain events.

Document

How It's Used

Will

A will outlines how you want your property distributed upon your death. You can also name a guardian for any pets you have. How you want your property distributed is up to you; you can leave everything to one person, distribute it among several heirs or even donate most of your assets to a charitable organization. You'll need to designate an executor to settle your estate and make sure they follow the will's terms.

Living Trust

Living trusts are more complicated than wills, but they can protect you and your heirs when you pass away or if you become incapable of making your own decisions. A living trust also allows you to distribute property to your heirs before your death, which a will does not. 

Additional functions of a living trust include avoiding the probate process, reducing estate taxes and protecting your privacy. A major benefit of a living trust is that you may use it to name a successor trustee if you become incapacitated. This eliminates the need for a judge to appoint someone.

Financial Power of Attorney

A financial power of attorney document is similar to a health care power of attorney document. It authorizes someone to make financial decisions on your behalf if you become unable to do so. A general financial power of attorney gives your agent broad decision-making authority, while a limited power of attorney only allows them to perform certain tasks. 

Depending on your needs, your financial power of attorney may give your agent the ability to write checks, buy and sell stocks, pay bills and perform other financial tasks.

Tips on Planning Ahead for People with Alzheimer’s Dementia

Getting a diagnosis of Alzheimer’s disease can be overwhelming, but careful planning can help you ensure your wishes are followed when it comes to medical care, financial decisions and the distribution of your assets. When you’re ready to begin, follow these tips to make the planning process as easy as possible:

  • Start early: Planning as soon as possible can help ensure that you have your documents in order before your symptoms progress. Talk with family members, health care professionals and attorneys to ensure you document everything in a way that’s valid in your state.
  • Gather important documents: Your attorney may need to see copies of insurance policies, investment account statements and other documents to help you make wise decisions. Gather these documents and keep them together in a safe place in case you need to refer to them during the planning process.
  • Review your plans regularly: Your circumstances may change after you do your initial planning. To ensure your legal, medical and financial documents always reflect your current situation, review your plans regularly. For example, if your health care proxy becomes ill, you may need to select a new one. You may also need to update your will to include property you acquired after your attorney prepared the original one.
  • Make funeral plans ahead of time: No one likes to think about their own funeral, but it’s important to make funeral and burial plans when you can. You may want to buy a casket or cremation urn ahead of time, arrange your burial in a family plot or choose which photo you want to display with your obituary. Let your loved ones know if you want a memorial service or if you’d prefer they pay their last respects in private. You can even document what kind of flowers you’d like to have or what songs you’d like the mourners to sing.
  • Look into senior care: You may not need care when you’re first diagnosed, but your needs can change as you age. If you want to stay in your home, you may arrange to have a family member move in with you or check on you daily. Paid caregivers are also an option, especially if you need in-home nursing care or physical therapy. If you don’t want to worry about maintaining a home, consider moving to a senior living community. While you’re planning ahead, tour local communities, ask questions and determine which one you want to move to if it becomes necessary.

Where To Find Help With Legal and Financial Planning

Where To Find Help With Legal and Financial Planning

The requirements for legal documents vary from state to state, so what’s valid in one location may not be valid in another. Online forms help determine what you need to think about as you engage in the planning process, but they can be difficult to understand. You may even download forms that have legal errors in them, rendering self-prepared documents invalid in your state. It’s best to work with someone with the knowledge and professional experience to help you avoid legal pitfalls. The following people may be able to help:

Contact

How They Can Help

Elder Law Attorney

An elder law attorney can draw up legal documents that are valid in your state and county and advise you what to include in an advance health care directive, help you set up a living trust or create a will. LawHelp.org can help you find free legal aid provided by nonprofit organizations in your state. 

Health Care Providers

Your health care providers should know your wishes regarding medical intervention. If you have questions about any of the treatments typically listed in an advance directive, ask your doctor, a medical social worker or another health care professional to explain them to you. This can help you make decisions that align with your values.

Geriatric Care Manager

A geriatric care manager (GCM) is someone who can help you identify your needs and find ways to fulfill them. This person is usually a registered nurse or social worker. Although a GCM can't provide legal advice, they can evaluate your living arrangements, address your emotional concerns and make short- or long-term plans to address your needs. Your GCM may also be able to help you choose caregivers to help you at home.

Financial Assistance Options for People With Alzheimer’s and Dementia

As your needs change, you may need to hire paid caregivers, move to a residential community or make other decisions that cause your expenses to increase. It can be difficult for some seniors to afford these changes, especially if their medical expenses have increased due to an Alzheimer’s diagnosis. The programs and resources below can help you cover the costs of some of your care, leaving you with more money to pay for other expenses.

Medical Programs

Medicare

Medicare is a health insurance program designed for seniors 65 and older. You may also qualify if you’re under 65 and have a disability. Original Medicare has two parts: Part A (hospital insurance) and Part B (medical insurance).

How the Program Helps People with Alzheimer's and Dementia

Website

Contact Information

Original Medicare pays for doctor visits, hospital stays, imaging tests and lab tests and mental health services. It doesn't include prescription coverage, but you can pair it with a Medicare Part D supplement, for the medications you need to manage your symptoms and prevent your dementia from progressing.

(800) 633-4227

Medicare Advantage

Medicare Advantage is an alternative to Original Medicare. The main difference between the two is that Original Medicare is a government-administered insurance program, while private insurance companies throughout the United States sell Medicare Advantage Plans. With a few exceptions, Medicare Advantage Plans must cover the same basic services as Original Medicare. Insurers can also offer extra benefits, giving Medicare Advantage enrollees additional flexibility.

How the Program Helps People with Alzheimer's and Dementia

Website

Contact Information

- Medicare Advantage provides the same level of coverage as Original Medicare for things such as lab tests, X-rays, doctor visits and inpatient hospital care, plus almost all Medicare Advantage Plans include prescription coverage.

-Depending on the plan options available in your state, you may be able to sign up for a Special Needs Plan (SNP), which is a Medicare Advantage Plan designed for enrollees with certain medical conditions, such as dementia, increasing access to the services you need.

(800) 633-4227

Medicaid

Medicaid is a health insurance program for enrollees with limited financial resources. It covers many mandatory benefits, including doctor visits, X-rays, lab tests and inpatient hospital care. Depending on where you live, your state may also offer optional benefits, such as prescription drug coverage.

How the Program Helps People with Alzheimer's and Dementia

Website

Contact Information

You can use your Medicaid mandatory benefits to cover the cost of inpatient and outpatient medical care associated with Alzheimer's disease. If your state offers additional benefits, you can use these benefits to further defray your costs. 

Contact your state Medicaid agency for more information.

Cash Assistance

Supplemental Security Income

SSI provides cash payments to seniors with limited financial resources. You may qualify if you’re at least 65 years old or blind or disabled. You must also be a U.S. citizen or qualified immigrant residing in the United States.

How the Program Helps People with Alzheimer's and Dementia

Website

Contact Information

If you qualify for SSI payments, you can use the cash benefits to pay for food, utilities and other basic living expenses, leaving more funds available for Alzheimer's-related care.

(800) 772-1213

Social Security Disability Insurance

SSDI provides cash payments to disabled individuals who’ve worked and earned credits by paying Social Security taxes. To qualify, you must have a disability that meets the Social Security Administration’s strict guidelines.

How the Program Helps People with Alzheimer's and Dementia

Website

Contact Information

You can use SSDI payments to pay for a wide range of services related to your Alzheimer's disease. For example, you may be able to use SSDI benefits to pay a personal care aide or 

(800) 772-1213

Insurance Options

Program Name

Program Description

How the Program Helps People with Alzheimer's and Dementia

COBRA

COBRA allows you to continue your group health coverage for a limited time if you leave your job. It's typically available to individuals employed by companies with at least 20 employees. If you decide to use COBRA, your employer is allowed to charge you up to 102% of the full premium.

If you lose your job before you become eligible for Medicare, you may be able to use COBRA to keep the group coverage offered by your former employer. This coverage can help you access medications, doctor visits and other services needed to treat and prevent Alzheimer’s disease. 

Disability Insurance

Disability insurance temporarily replaces a portion of your income if you're unable to work due to injury or illness. Some employers offer a small amount of disability insurance at no cost, while others require employees to pay for coverage via regular payroll deductions. You can also buy short- or long-term disability insurance from a private insurance company.

If you have to miss work due to your Alzheimer's disease, you can use disability insurance to replace some of your income, ensuring you have funds coming in to pay for treatment-related expenses.

Life Insurance

Life insurance is a

type of contract that entitles your beneficiary to receive a certain amount of money when you pass away. In exchange, you pay monthly premiums for as long as the policy is in effect. The amount of life insurance you need depends on several factors, such as whether you paid off your mortgage or you have any dependents. 

If you have any medical bills remaining from your Alzheimer's treatment, your beneficiary can use life insurance funds to pay them off. Having life insurance in place can also give you extra peace of

mind as you plan for the future.

Long-Term Care Insurance

Long-term care insurance is an insurance product that covers some or all of the costs of long-term care. 

Long-term care insurance may cover the cost of adult day care, in-home care, respite care, nursing home care or another type of care you need for your Alzheimer's disease. It’s recommended to get long-term care insurance before you need it. Insurance companies may deny your application if you've already been diagnosed with Alzheimer's disease or another condition that is likely to lead to the need for long-term care at some point.