The Cost of Alzheimer’s and Long-Term Care: What Maine Families Should Plan For

September is World Alzheimer's Month, a time to raise awareness about Alzheimer's disease and other forms of dementia, as well as the impact these conditions can have on individuals and their families.

For Maine families, that impact is not only medical and emotional. Alzheimer's disease can also have a significant financial impact, particularly as a person's need for assistance increases.

When families think about the cost of long-term care in Maine, they often think first about the price of a nursing home. But for a person living with Alzheimer's disease or another form of dementia, the financial impact can begin long before nursing facility care is ever needed.

A person may initially live independently with only occasional help. Over time, however, Alzheimer's is progressive, and the amount of assistance needed may increase. For families, that can mean not one large expense, but a series of new expenses that gradually become part of everyday life.

Understanding those potential costs is an important part of proactive long-term care planning in Maine.

Alzheimer's Care Costs May Begin at Home

For many Maine families, the goal is to keep a loved one safely at home for as long as reasonably possible. That does not necessarily mean care at home is free.

As a person's needs change, expenses may include:

• Home modifications to improve accessibility or safety;
• Personal emergency response or monitoring systems;
• Paid caregivers or homemaker assistance;
• Transportation to appointments and other activities;
• Meal preparation or delivery;
• Adult day programs;
• Respite care to give a family caregiver time away;
• Nursing or other professional services in the home; and
• Additional supervision as memory loss progresses.

Maine has home and community-based programs through the Office of Aging and Disability Services intended to help eligible older adults and adults with disabilities remain in their communities and avoid or delay nursing home placement. Eligibility and available services depend upon the particular program and the individual's circumstances.

Families who are trying to identify available services can also contact one of Maine's Aging & Disability Resource Centers and Area Agencies on Aging. These agencies can answer questions about available in-home, community-based, and long-term care services and help connect families with appropriate programs and resources. Maine's statewide Aging & Disability Resource Center number is 1-877-353-3771.

Families looking for services rather than legal planning can also explore Maine's resources for older adults through the Office of Aging and Disability Services, including information about resources designed to help older Mainers, family members, and care partners identify aging-related needs and available assistance.

Even when assistance is available, however, families should think about how they would address expenses that are not covered or needs that exceed the assistance available.

The Hidden Financial Cost of Family Caregiving

One of the largest costs of Alzheimer's care may never appear on an invoice.

Very often, a spouse, adult child, or another family member becomes the caregiver.

At first, that might mean helping with groceries, transportation, medications, bills, or appointments. As the disease progresses, the caregiver's responsibilities may increase substantially.

An adult child may reduce work hours, use vacation or personal time, or make frequent trips to help a parent. In a rural state like Maine, those trips can involve considerable time and distance. A spouse may take over household responsibilities that were previously shared while also providing increasing levels of supervision and personal care.

There can also be indirect financial consequences. Reduced work hours can mean less income. Leaving employment can affect retirement savings and benefits. Families may pay others to perform household maintenance, snow removal, property management, or other responsibilities the caregiver no longer has time to handle.

Maine also provides information about care partner support programs for people caring for older adults and individuals living with dementia, including Alzheimer's disease.

The financial and personal costs of family caregiving are easy to overlook when a family first begins thinking about long-term care.

What Happens When Care Needs Increase?

There may come a time when living independently is no longer safe or practical.

Depending upon the person's needs, a family may eventually consider residential or assisted living, memory care, or nursing facility care. These are different levels and types of care, and the appropriate setting depends upon the individual's circumstances.

Families looking for general information about different levels of facility-based care can learn more through Maine DHHS Residential and Nursing Care Services.

Aging In Maine does not recommend or select care facilities. Our role as a law firm is to help clients plan for the legal and financial issues that may arise if long-term care becomes necessary.

This is one reason long-term care planning should not focus exclusively on one particular outcome.

The better question may be:

If care needs increase, how would we pay for it?

How Do Maine Families Pay for Long-Term Care?

There is no single answer that applies to every Maine family.

Long-term care may ultimately be paid for through a combination of resources.

Personal Income and Assets

Many people begin by using their own resources. This could include Social Security, pensions, retirement accounts, savings, investments, or other assets.

The important planning question is not simply what someone owns today. It is how those assets may need to support the individual, a spouse, and potentially years of changing care needs.

Long-Term Care Insurance

If someone already has long-term care insurance, it is important to understand the policy before care is needed.

Policies differ significantly. Families should know what types of care are covered, what conditions trigger benefits, whether there is an elimination period, the amount and duration of benefits, and whether home-based services are included.

Does Medicare Pay for Long-Term Care?

A common misconception is that Medicare will pay for long-term care.

Generally, it does not.

According to Medicare's information about long-term care coverage, Medicare does not pay for ongoing long-term custodial care. Medicare may cover certain medically necessary services and qualifying short-term skilled nursing or rehabilitation care under specific circumstances.

Ongoing long-term care is different. Someone may need assistance with activities such as bathing, dressing, eating, using the bathroom, or simply remaining safe throughout the day. Families should not assume Medicare will pay for these ongoing needs.

That distinction can come as an unpleasant surprise to families who assumed Medicare would cover care if it became necessary.

Can MaineCare Help Pay for Long-Term Care?

For individuals who meet applicable eligibility requirements, MaineCare may provide coverage for certain long-term care services, including qualifying home and community-based services and nursing facility care.

MaineCare eligibility and coverage depend upon the particular program and the individual's circumstances. Income, assets, transfers, marital status, the type and level of care needed, and other factors may become important.

MaineCare's rules can be complex, and families should be cautious about making significant financial decisions or transferring assets based solely on general information they find online.

That is one reason proactive MaineCare and long-term care planning can be important.

Why Proactive Long-Term Care Planning Matters

When we talk with clients about proactive long-term care planning, we are not selecting nursing homes, assisted living facilities, home-care agencies, or caregivers.

Our role is different.

At Aging In Maine, we help families look at the legal and financial side of possible future long-term care needs.

That may include reviewing how assets are owned, considering the needs of a spouse, discussing estate planning documents, examining potential MaineCare issues, and helping clients understand planning options that may be available while there is still time to implement them.

For families who are looking for information about actual care and services available in their communities, Maine's Area Agencies on Aging and Aging & Disability Resource Centers are a good place to start.

The objective of proactive legal planning is not to predict exactly what type of care someone will eventually need.

It is to be better prepared if that need arises.

Planning Before a Long-Term Care Crisis

A diagnosis of Alzheimer's disease can make the future feel uncertain. No family can know exactly how quickly someone's needs will change or what type of assistance will eventually be necessary.

But families can ask important questions now.

If Mom or Dad wanted to remain at home, what resources could help make that possible? If one spouse needed significant care, how would the other spouse be financially affected? What assets would be available to pay for care? Are estate planning documents current? What happens if someone loses the ability to manage finances or make decisions? Could MaineCare become part of the family's long-term plan?

These conversations are often easier, and there may be more planning opportunities available, when they happen before a health or caregiving crisis.

During World Alzheimer's Month, it is worth remembering that preparing for Alzheimer's and other forms of dementia is not only about planning for medical care. It is also about considering how changing care needs could affect the individual's spouse, family, home, income, savings, and estate plan.

The cost of Alzheimer's is not simply the cost of a nursing home. It can affect nearly every part of a family's financial life.

Knowing that in advance gives families an opportunity to plan.