Planning Ahead After an Early Dementia Diagnosis: What to Do While You Still Can

A dementia diagnosis is life-changing, and thinking about legal papers and care costs is probably the last thing you want to do. But the people who know this disease best are consistent about one thing: the sooner planning begins, the longer the person with dementia can take part in the decisions. This guide turns what the National Institute on Aging (NIA) and the Alzheimer’s Association recommend into a checklist.

Why does timing matter so much?

The NIA explains that a complication of dementia is that a person may gradually lose the ability to think clearly, which affects their ability to make decisions and take part in planning. The rate of decline differs for each person, and so does the ability to be involved. The Alzheimer’s Association recommends having these discussions as soon as possible after a diagnosis so the person can take part in decision-making as long as possible. The NIA adds that not everyone is diagnosed at an early stage, so decision-making may already be difficult by the time of diagnosis. For what “legal capacity” means and how it’s judged, see our guide on whether someone with dementia can still sign documents.

What should we do first?

Start by thinking about long-term goals, and then gather what exists. The Alzheimer’s Association recommends organizing and carefully reviewing existing legal and financial documents, including insurance policies, pension and retirement benefit information, and Social Security payment information. It offers a Financial and Legal Document Worksheet to organize what to bring to an attorney. The NIA suggests keeping important papers in a secure place, giving copies to family members or another trusted person, and noting that a lawyer can keep a set too. See our guide on the five documents every adult child should know where parents keep.

Which legal documents matter?

The NIA’s fact sheet lists these, and says to create or update them as soon as possible after diagnosis:

• Durable power of attorney for health care: names a person (an agent or proxy) to make health care decisions when the person can no longer do so
• Living will: records wishes for medical treatment near the end of life
• Do-not-resuscitate (DNR) order: signed by a doctor, instructs health care professionals not to perform CPR; see DNR orders and POLST forms
• Durable power of attorney for finances: names someone to make financial decisions when the person no longer can, which the NIA says can help avoid court actions that may take away control of financial affairs
• Will: how assets will be distributed; it can also cover care of minors or pets, gifts, trusts, and funeral or burial arrangements
• Living trust: manages money and property during life and can avoid probate

Because laws vary by state, the NIA recommends working with a lawyer. See advance directives, living wills, and healthcare proxies.

Who can help, and what if we can’t afford a lawyer?

An elder law attorney helps older adults and their families interpret state laws and plan how wishes will be carried out. The NIA suggests asking about fees before making an appointment, and says the National Academy of Elder Law Attorneys and the American Bar Association can help families find qualified attorneys. The Alzheimer’s Association notes that most people don’t need an attorney to prepare health care advance directives, and that you can ask the Association whether pro bono legal help is available. The NIA adds that families who can’t afford a lawyer can still plan: samples of basic health planning documents are available online, and Area Agencies on Aging, state legal aid offices, state bar associations, and local nonprofits may offer help. The Eldercare Locator (800-677-1116) can point you to local resources.

Discussing advance care planning with a doctor is free through Medicare during the annual wellness visit, according to the NIA.

What about permission for caregivers to talk to doctors and banks?

The NIA’s advice here is easy to miss and important: get the person’s permission in advance for their doctor and lawyer to talk with a caregiver as needed. Permission can also be given to Medicare, a bank, a credit card company, or a financial advisor. Without consent, a caregiver may not be able to get information needed for a question about care, a bill, or an insurance claim.

How do we protect money and prevent problems?

The NIA notes that trouble managing money can be among the first noticeable signs of dementia, and suggests ways to help while respecting independence:

• Watch for signs of trouble, such as trouble paying for a purchase or a pile of unopened bills, and start a conversation about services that can help
• Set up automated bill payments for utilities, rent or mortgage, and other regular expenses
• Protect against scams: placing the person’s number on the National Do Not Call Registry and registering for fraud alerts through the bank, credit card company, or a credit bureau can help
• Consider being named as a legal proxy to access and manage financial affairs as the disease progresses

How do we plan for the cost of care?

The Alzheimer’s Association recommends a family meeting about how much future care might cost, and creating a long-term budget. It suggests reviewing:

• Insurance and employer or retirement benefits, including any long-term care policy already in place (check whether it can help cover future care)
• Government benefits, including Social Security Disability Insurance or Supplemental Security Income for people under 65, Medicaid, and Veterans benefits if applicable
• Ongoing medical costs for diagnosis and follow-up care

Two facts worth knowing early: the Association notes that life insurance and long-term care insurance are usually not available for purchase after symptoms of Alzheimer’s appear, and that Medicare doesn’t cover the cost of long-term care. It recommends advisors who are familiar with elder care or long-term care planning. See our guide on assisted living, memory care, and skilled nursing.

What about care wishes and end-of-life wishes?

Talk about where the person wants to live as needs grow, what kind of care they’d want, and how they feel about life-prolonging treatment, and write it down while they can say it. The NIA also notes that advance planning for funeral and burial arrangements can provide peace and reduce anxiety for the person with dementia and their family. When the time comes, our guides on how dementia ends and hospice eligibility for dementia explain what decisions may come.

What if the person doesn’t want to talk about it?

That’s normal. The NIA says people in the early stages may understand the issues but may also be defensive, frustrated, or emotionally unable to deal with difficult questions, or may be in denial, and advises patience and outside help from a lawyer or geriatric care manager if needed. Start with what matters to them, such as who they’d trust to speak for them, rather than with the paperwork.

How often should we review the plan?

Regularly. The NIA notes that changes such as divorce, relocation, a death in the family, and changes in state law can affect how documents are prepared and maintained, so review plans and update them as needed.

Where can we get support?

The Alzheimer’s Association has a free 24/7 Helpline at 800.272.3900, and the NIA’s Alzheimer’s and related Dementias Education and Referral (ADEAR) Center can be reached at 800-438-4380. If you’re planning for yourself, record your wishes in a Final Day Plan and share them with the people you trust.

For what happens without these documents, see Making medical decisions when a parent with dementia can no longer decide, Guardianship and conservatorship for adults, and Feeding tubes and dementia.

This is general educational information, not legal, medical, or financial advice. Document requirements, benefits, and eligibility rules vary by state and change over time - an elder law attorney, financial advisor, or the Alzheimer’s Association can address your specific situation.