Planning ahead with early dementia

Making a legal document doesn’t mean your rights are taken away now. Most forms you complete only come into use when you are legally no longer able to make decisions.

A power of attorney doesn’t let the person you choose override your decisions while you can still make them.

First steps

1. Find the legal and money documents you already have
2. Review them, and update anything out of date
3. Choose who you trust to decide for you, plus a backup
4. Write down your wishes for health care and where you’d live
5. Talk it through with your care partner and family
6. Give copies to the people who need them

You don’t have to do it all at once. Pick one thing each week, like gathering papers or naming a backup person. The worksheets in this guide help you take it a step at a time.

Once plans are in place, many people feel relief. It frees them to focus on what they enjoy.

This names a health care agent to make medical decisions for you when you no longer can. That can include treatments, where you get care, and end-of-life care.

Name a backup person too, in case your first choice can’t do it.

A durable power of attorney for finances names someone to manage your income, savings and property when you are not able to. It must be made while you still have legal capacity.

Look for the word “durable”. If a power of attorney doesn’t say it is durable, it ends if you can no longer make decisions, which is exactly when you need it.

A living will records which medical treatments you do or don’t want near the end of life. Together with a health care power of attorney, it is called an advance directive. Some states require a specific form.

The “Planning ahead: wishes, advance directives & legacy” guide explains living wills and health care proxies in more depth.

A POLST (Physician Orders for Life-Sustaining Treatment) is a medical order signed by a doctor that says which life-sustaining treatments you want or don’t want. It adds to an advance directive, and it isn’t available in every state.

A will says how your property is shared after your death, and names an executor. A living trust holds your property and names a trustee to manage it if you can’t, plus a backup trustee.

Two to ask about

• A hospital visitation form, saying who you want as visitors
• A medical release, so your doctor can share health information with the people you choose

When no power of attorney exists, a court may appoint a guardian or conservator to make decisions. This is uncommon and often comes from family disagreements. Planning ahead usually avoids it.

Choose people who know you well, and who will follow your wishes even if they’d choose differently. You can pick one person for health and another for money.

Talk with your chosen person early and often, so they understand your wishes and are willing to act on them.

Think about where you’d want to live if you need more help: with family, with home care, or in assisted living. Planning now gives you more choice later.

Family members can find more on care settings in the Later stages & care decisions guide.

Beyond medical choices, write down what you always want kept in your life: your faith practices, the music you love, how you like your coffee, time outdoors, a pet. These details help people care for you as you.

The “My wishes, in my words” worksheet gives you space for this.

Examples

• Bank and retirement account details
• Bills and debts
• Birth certificate and ID
• Insurance policies
• Legal documents, like powers of attorney and a will
• Property and tax records

Make sure someone you trust knows where the folder is kept.

Costs to list

• Adult day, in-home or residential care
• Home safety changes
• Medical care and treatment
• Personal care supplies

Sources to check

• Community services, like Meals on Wheels, respite care and transportation
• Employee or retirement benefits
• Life and long-term care insurance
• Medicaid
• Medicare and related plans
• Personal savings, investments and property
• SSDI or SSI disability income, if you are under 65
• Veterans benefits, for anyone who served

A reverse mortgage is sometimes mentioned. It carries risks to staying in your home, so talk with an attorney or financial advisor first.

An elder law attorney or a financial planner who knows long-term care can help. Check their credentials and experience, and ask whether they work with people planning for long-term care.

The National Academy of Elder Law Attorneys has an online directory, and the Alzheimer’s Association Helpline can refer you to local help.

Set up automatic payments from your bank account for regular bills like utilities, rent or mortgage. Many banks and companies do this for free.

A monthly budget, set up with someone you trust, can make spending easier to track.

Ask a family member or someone you trust to look over your bank statements each month and ask you about anything unusual. This helps protect you from mistakes, fraud and financial abuse.

Signs worth checking

• Lots of new purchases on a card
• Money missing from an account
• Signatures that don’t look like yours
• Unopened or unpaid bills

Lowering credit card limits or closing cards you don’t need can limit the damage from a mistake or a scam.

Register your phone number on the National Do Not Call Registry, and ask your bank about fraud alerts.

A simple personal rule

• Never give bank or card details to someone who called you
• Say “I’ll call you back” and check with someone you trust
• Take time. Real companies don’t demand payment on the spot

The AI scams, deepfakes & misinformation guide has more on spotting scams, and After a crime, scam or harassment covers what to do if one happens. Elder abuse & financial exploitation explains warning signs of someone taking advantage.

People to think about

• A decision-maker you trust, often a family member or close friend
• Family, whether they live with you or across the country
• Neighbors who could help with day-to-day tasks
• Volunteers, and members of your faith or social groups
• Your primary care provider, neurologist, counselor or other specialists

What helps

• Be specific about what help you need now, and might need later
• Ask if you could do things together, like shopping or cooking
• Choose people who listen and care, and avoid those who judge or blame
• If someone can’t help, don’t blame yourself. It’s usually about them
• Say thank you. People are more likely to help again when they feel appreciated

Even family who live far away can help, for example with regular calls, paperwork, paying bills online or researching services.

Under the Americans with Disabilities Act, employers with more than 15 employees must provide reasonable accommodations for people with disabilities.

Changes people ask for

• Changing your hours
• Getting reminders
• Splitting large tasks into smaller ones

The Work & mental health guide has tips on talking with your workplace.

If you’re still employed, find out about the benefits your employer offers, and make the most of them before you leave your job. Disability insurance usually has to be in place before symptoms appear.

Questions to ask HR

• What short- and long-term disability benefits do I have?
• How do I apply, and when should I file?
• What share of my salary would be paid, and can that change?
• How soon would payments start?

People with dementia may be able to get disability income through private disability insurance, Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI).

Social Security’s Compassionate Allowances program gives quicker review for people with younger-onset Alzheimer’s and several other types of dementia.

Leaving work can mean losing routine, purpose and social contact all at once. Planning what comes next, like volunteering, a class or a regular group, can help fill that gap.

The Everyday life with early dementia guide has ideas for staying social and active.

A professional can evaluate your driving. The American Occupational Therapy Association keeps a national list of driving specialists, or you can ask your state’s DMV or a health professional. There may be a fee.

State laws vary. Some states take away a license when dementia is diagnosed, some offer a driving test, and a few require doctors to report a diagnosis to the DMV. Check your state’s rules.

Some people with memory loss can drive short distances on local streets during the day but not safely at night or on a freeway. Limiting when and where you drive can be a middle step.

If you notice more confusion, getting lost, or needing directions more often, talk with your clinical provider. Take family concerns seriously.

Options to explore

• Public transportation, including free or low-cost buses for people with disabilities
• Rides from neighbors, friends and family
• Ride sharing, taxis and carpools
• Volunteer drivers from places of worship and community groups

Your local Area Agency on Aging can tell you about transportation help. Find it through the Eldercare Locator at 1-800-677-1116.

Numbers to keep

• Alzheimer’s Association 24/7 Helpline: 1-800-272-3900, including referrals to elder law attorneys
• Eldercare Locator for local services: 1-800-677-1116
• NIA’s ADEAR Center: 1-800-438-4380 (weekdays)

Laws on powers of attorney and advance decisions differ by country. A local dementia organization or legal aid service can explain the rules where you live. For emotional support, findahelpline.com lists free support lines by country.