If you or a loved one has been diagnosed with Alzheimer’s disease or a related dementia, it may be difficult to think beyond the day to day. However, taking steps now can help prepare for a smoother tomorrow.
Over time, the symptoms of Alzheimer’s and related dementias will make it difficult to think clearly. Planning as early as possible enables you to make decisions and communicate those decisions to the right people.
Below are important legal documents to consider, and resources and tips that can help with planning ahead for health care, financial, long-term care, and end-of-life decisions.
Advance directives are legal documents that outline your preferences and apply only if you are unable to make decisions. For health care planning, they communicate a person’s wishes ahead of time. Doctors and other providers follow these directives for your medical treatment. There are two main documents that are part of an advance directive:
If advance directives are not in place and a patient can no longer speak for him or herself, someone else will need to make medical decisions on their behalf. Talk to your family, friends, and health care providers about what types of care you would want. It can also be helpful to talk with your doctor about common problems associated with your condition.
For example, in the later stages of Alzheimer’s disease, people may have trouble swallowing, which can bring food or liquid into the lungs and cause pneumonia. Doctors may recommend a feeding tube connected from the nose to the stomach for nutrition, a ventilator to help with breathing, and antibiotics to fight the lung infection to help with recovery. However, some people may want to focus on comfort rather than recovery if the illness occurs near the end of life.
Medical decisions to consider when planning ahead include:
Watch this video that describes four advance directives important to have as you age.
Advance directives for financial planning are documents that communicate the financial wishes of a person. These must be created while the person still has the legal capacity to make decisions. Three common documents are included in a financial directive:
Lawyers can help prepare these documents with you and your family members. A listing of lawyers in your area can be found on the internet, at your local library, through a local bar association, or by contacting the National Academy of Elder Law Attorneys.
Families who cannot afford a lawyer can still prepare documents and express their wishes in advance. Samples of basic health planning documents are available online. Area Agency on Aging officials may provide legal advice or help. Other possible sources of legal assistance and referrals include state legal aid offices, state bar associations, local nonprofit agencies, foundations, and social service agencies.
Visit the National Hospice and Palliative Care Organization for free sample documents.
For help with legal advice, contact the Eldercare Locator.
As symptoms progress, long-term care may be needed. People diagnosed with Alzheimer's or a related dementia and their family members should begin planning for the possibility of long-term care as soon as possible. Geriatric care managers, often nurses or social workers, can work with you to create a long-term care plan.
Long-term care can be provided within the home or at an outside facility. At some point, a person with dementia may require around-the-clock care or exhibit behaviors, such as aggression and wandering, that make it no longer safe to stay at home. People who require help full time can move to an assisted living, nursing home, or residential facility that provides many or all of the long-term care services they need. When planning for long-term care, it may be helpful to think about:
Currently, there is no cure for Alzheimer’s and related dementias. Some treatments may help manage symptoms for a period of time. However, a person’s condition will gradually decline and result in death. That’s why planning and making decisions for your health care early on is important. When planning end-of-life care, quality of life should be considered alongside care that may extend life.
If you did not choose a health care proxy or your advance directives are not clear, someone else may need to make decisions for you at the end of life. These situations can be difficult and emotional. For caregivers in the role of making those decisions, it may be helpful to imagine what the person would want and try to choose accordingly.
There are tips and checklists that can help you get started on what to do after an Alzheimer’s or related dementia diagnosis. In preparation for the future, you can:
Planning now will help you and your loved ones later when symptoms of Alzheimer’s or a related dementia worsen.
Explore the resources on this website and linked below to find more information from federal government agencies.
Explore advance planning guides that help people living with dementia and their family or other care partners know what to plan for and how to get started.
Use this free public service by searching online or calling toll-free to get connected to services in your community.
Use the information on resources and support in this easy-to-read brochure.
Find the basics about long-term care, insurance coverage, and the types of considerations to be made.
Read about long-term care, medical and legal documents, and specific challenges.
The Alzheimer’s & related Dementias Education & Referral (ADEAR) Center is a service of the National Institute on Aging at the National Institutes of Health. Call 800-438-4380 or email email@example.com to talk with an information specialist.
This content is provided by the National Institute on Aging (NIA), part of the National Institutes of Health. NIA scientists and other experts review this content to ensure it is accurate and up to date.