Planning for long-term care

Planning for long-term care is a difficult task. It involves understanding and making decisions about services and options that are unfamiliar to many of us. These include services and supports, housing and financing options, and legal issues.

Personal Planning Steps

Assess Your Risk of Needing Long-Term Care Services

While you can never know for certain if you will need long-term care, assessing your risk factors can help you understand if you are at a higher or lower risk. Begin by talking with your doctor about whether you might be at increased risk based on your medical and family history or lifestyle choices. You will gain a better understanding of your risks, and your doctor may be able to help you decrease your risk.

Investigate Opportunities to Help Maintain Your Health and Independence

Many people fail to make the connection between healthy behaviors today and their impact on later life, but the science of aging indicates that chronic disease and disability are not always inevitable. Studies by the National Institute of Aging indicate that healthy eating, physical activity, mental stimulation, not smoking, active social engagement, moderate use of alcohol, maintaining a safe environment, social support, and regular health care are important in maintaining health and independence. Even if you haven’t been active in the past, it’s not too late to start.

Talk with Your Family about Caregiving

It is estimated that individuals turning 65 today could need up to 3 years of long-term care services, with almost 2 years of that care provided at home. Currently most care provided in the home is by an unpaid family member or other caregiver. You should talk to your family (spouse, adult children, siblings) or friends who would want to, or be able to, care for you if you became ill or disabled for a long time. Or, you might already be a caregiver for someone else. In either case, it is important for you and your family to understand how caregiving activities can affect you and your family, and what resources and supports are available.

Think about Where You Want to Receive Care

If you were to need care for an extended period of time, and were not able to stay at home, where would you want to receive care? If you need more information on long-term care services, review the list of services and providers in Understanding LTC. One way to find out what services are in your community is by contacting the Administration on Aging's Eldercare Locator.

Financial Planning Steps

Review Your Current Insurance Coverage

Do you know if your current health care insurance would pay if you needed to be in a nursing home or needed care at home for an extended illness? Unless you have purchased a specific long-term care insurance policy, your existing medical coverage, Medicare, Medicare supplement, or HMO will provide little if any coverage for long-term care. Review the policies you have with your insurance advisor or benefits counselor to learn what is covered and what is not.

Decide if You Can or Want to Pay for Long-Term Care Privately

If you don't have coverage for long-term care or prefer to pay out of your own resources, do you know if you would be able to cover all the costs from your retirement income and savings? Think about the financial resources you have and how you feel about using them to pay for long-term care. This could include various sources of income (for example, Social Security, pension, interest income, dividends from investments, payments from an IRA or 401 (k)), as well as cash, savings, stocks and bonds, and your home.

Investigate Future Insurance or Benefits You Expect or May Qualify for in Retirement

It is important to know and understand what your future benefits will cover, if you are not yet retired. If you only have Medicare, even with a Medicare supplemental plan, most of your long-term care services may not be covered. If you have limited resources, now or in the future, Medicaid may pay for your services. More information on Medicare, Medicaid and other public programs can be found in the Paying for Long-Term Care section of this website. You can also go to the Centers for Medicare and Medicaid Services [offsite] web site for more information on Medicare and Medicaid.

Find Out What Other Resources Can Help Cover Long-Term Care Expenses

Most people currently don't have coverage or do not have enough private funds to pay for all their long-term care needs, particularly if service needs are extensive or last a long time. There are an increasing number of private payment options available for this purpose. Two of the more common options are long-term care insurance and reverse mortgages. Review private financing options carefully to ensure that you understand all the details, eligibility requirements, and costs.

Housing Considerations and Planning Steps

Decisions about housing are often based on finances and personal choices such as neighborhood location or a retirement destination. But, there are numerous things to consider related to housing and potential long-term care needs as you age. The following sections summarize some of the major issues and considerations related to housing and long-term care planning.

Staying in Your Home or Moving to a New Independent Living Situation

If you are like most people and plan to stay in your own home for as long as possible, some important things to consider include the condition of your home, the accessibility of your home if you become less independent, the types of modifications you could make to your home, affordability of future maintenance and needed modifications, and the availability of services in the area.

If you decide to move, an important consideration is whether your new home has universal design features that can accommodate your needs if you become less independent. This could be a house all on one level, or an accessible condominium or apartment. A retirement community or senior housing complex that provides independent living units with support services such as transportation or house keeping are other options. Some issues to consider before making a decision to move include the value and equity you have in your home, whether this is a short term or long term move, the advantages of buying versus renting, and the related tax and legal issues.

Home Modifications

Home modifications can make your home safer and allow you to stay there longer. Modifications can range from lever style door and sink handles, grab bars in the bathroom, and improved lighting, to handrails, wider doorways for wheel chair access, stairway chair lifts, and adding a bathroom and/or bedroom on the first floor of a multi-story home to accommodate someone unable to climb stairs. You might also consider creating a separate apartment for a relative or renter in exchange for assistance when you need it. If you are not a home owner, you may have a right to some modifications, but you may need to negotiate with your landlord on types and costs.

Modifications can be costly, but those that meet universal design standards, such as wider doorways and walk-in, curbless showers, may add value to your home. If you have enough equity in your home, you can use it to help finance modifications, or other costs. There are also some state and local programs that provide low interest loans or grants for home modifications.

Assistive Devices

Assistive devices are tools, products or equipment that help you perform tasks and activities, as independently as possible, in your home and community. Some of the simplest are adapted kitchen and grooming tools that are easier to hold, or a “reacher” that grabs objects you can’t reach. Others may help you communicate, or move around. Mobility assistive devices include walkers, wheel chairs, and mopeds. Communication devices range from voice amplification and recognition tools to cueing and memory aids, and software such as word prediction programs.

In-home and Community Support Services

The availability of in-home and community supports can help you stay in your home longer. These include public transportation – or someone to drive you to do shopping or to go to appointments, help with housing and yard chores, or with personal care, even temporarily.

Moving to Housing with Services

At some point, you may decide to move into housing with services, often referred to as facility-based services. Many of these, for example assisted living and board and care homes, are group living settings that offer housing plus personal care and support services, but not the level of medical care provided in a nursing home. A Continuing Care Retirement Community (CCRC) is another type of housing with services that provides a range of housing options on one campus - independent units, assisted living, and nursing facilities. Generally, CCRCs have an initial entrance fee and require you to be independent when you first enter. Nursing Facilities are the most service intensive and include skilled nursing and therapies as needed. Planning considerations for any of these housing with services options include how much they cost, what you can afford, the range and quality of the services provided, what type of insurance or public programs reimburse these services, eligibility requirements, and how close you will be to family and friends.

Legal and Advance Care Planning Steps

What is Advance Care Planning?

Advance care planning is the process of discussing, determining and executing treatment directives - such as a Living Will, and appointing a health care proxy decision maker for care in the event that a person is not able to make medical decisions for him or herself. Advance Care planning can make a critical difference in your life, and the lives of the ones who care about you, either in emergency situations or when facing end-of-life care situations.

To be most effective, advance care planning needs to be a comprehensive, ongoing process that includes your family and friends, your proxy, and your providers. Planning should reflect your personal values and beliefs, and be adaptable if circumstances change.

Advance Care Planning Considerations:

Communication is the single most important first step in advance care planning. It is critical to consider what you want while you have time to think through the options clearly, and then to discuss your options and preferences with your family and others. While advance care planning may be difficult and emotionally charged, communicating your wishes ahead of time decreases the chance of future conflict and takes the burden off your family.

Several issues should be carefully considered for advance care planning.

Values and beliefs. Personal concerns, values, spiritual beliefs or views about what makes life worth living are important issues to consider when developing an advance care plan.

Preferences. Most people have ideas about the ways they wish to face death and/or disability, but may be uncomfortable discussing them. Sometimes sharing your own ideas, if you are helping someone, or reviewing the situations of other family or friends who have been in relevant situations can help.

Health care proxy: Decide who you will appoint as your health care proxy (surrogate or agent) decision-maker. Appointing a proxy is a very important decision. The person you choose as your proxy needs to be able to make decisions based on understanding and respecting your values and beliefs about care. Select someone who you believe will understand and be able to carry out your wishes even if they include denying life-sustaining treatments.

Help with Planning. Many different kinds of professionals can assist you in creating advance directives that help ensure that your wishes will be respected. Lawyers, social workers and members of the clergy are obvious examples. Some counselors and social workers – especially those who work for hospice services – are uniquely qualified to offer guidance at all stages of the advance care planning process.

What types of Planning Documents do I need?

Advance Directive – Living Will and Medical Powers of Attorney

Advance Directive is a general term used to describe two types of documents – living wills and medical powers of attorney. These planning documents allow you to convey the type of care you want if you cannot speak for yourself including the extent to which you want life-sustaining medical treatments, and who should make those decisions if you cannot. Advance directives are not only focused on what treatments you don’t want, they also should include all of the treatments you do want.

Living wills (sometimes called medical directives) are written instructions for care in the event that you are not able to make medical decisions for yourself. Currently, 47 states and the District of Columbia have laws authorizing living wills. State law, however, can vary on signing requirements and other aspects of a living will, so it is important to check on your state’s requirements when completing a living will.

Medical Power of Attorney (sometimes called a health care or durable power of attorney) is a document that appoints a particular person as a health care proxy or health care agent to make health care decisions for you if you are unable to do so yourself (not just during a terminal illness). A health care proxy is your substitute decision-maker. All 50 states and the District of Columbia have laws recognizing health care powers of attorney. Some specify the types of decisions that health care proxies can make.

Do Not Resuscitate (DNR) is a physician’s order that is written in a person’s medical record indicating that health care providers should not attempt life-saving measures such as cardiopulmonary resuscitation (CPR) in the event of a cardiac arrest (commonly known as a heart attack) or respiratory arrest. A request for a DNR can be included in your planning documents, or communicated directly to your physician. Also, most health care facilities have a Do Not Resuscitate order policy and forms that a hospital professional can help you with if you choose this option after being admitted to a hospital.

Steps to Insure that Your Advance Care Planning is Carried Out

Complete a living will and a medical power of attorney. If possible, you should consult with a lawyer or other professional regarding specific state laws or regulations related to these planning documents.

Insure that your family and other important people in your life understand what your wishes are, and what is included in these documents. It is particularly important to discuss your decisions with the individual who will be your health care proxy to be sure he/she is comfortable with that role, and can be available to carry out your wishes.

Keep your planning documents easily accessible and in multiple places. Consider carrying a wallet card with you. Give copies to family members, friends, your physician, and/or your lawyer if appropriate. It is critical that your health care proxy has a copy, or can access a copy quickly, if there is an unexpected emergency.

Review your plans periodically to be sure that you are still satisfied with your decisions, and your health proxy is still able and willing to be responsible for carrying out your plans.