What to Do After a Dementia Diagnosis: Steps to Take and Support Options (Updated November 2025)

A dementia diagnosis is one of the most difficult pieces of news anyone can receive. It brings fear about the future, worry about becoming a burden, and uncertainty about what happens next. You might feel overwhelmed, angry, sad, or even relieved to finally have an explanation for the changes you've been experiencing.

These feelings are all normal. What matters now is that you don't have to face this alone. There are concrete steps you can take right now to stay in control of your life, get the support you need, and plan for the road ahead. This guide walks you through everything you need to do after a dementia diagnosis, from understanding your condition to building your care team to protecting your legal rights.

Understanding Your Specific Dementia Diagnosis

Not all dementia is the same. Understanding what type of dementia you have helps you know what to expect and which treatments might help.

Different Types of Dementia

Alzheimer's disease is the most common type of dementia, accounting for 60-80% of cases. It usually starts with memory problems and gradually affects thinking, behavior, and the ability to do everyday tasks.

Vascular dementia happens when reduced blood flow damages the brain, often after strokes or small vessel disease. People may have more trouble with planning and decision-making than with memory at first.

Lewy body dementia causes problems with movement, visual hallucinations, and fluctuating alertness along with memory issues. This type shares symptoms with Parkinson's disease.

Frontotemporal dementia affects personality, behavior, and language more than memory in the early stages. It typically develops in people younger than 65.

Mixed dementia means having more than one type at the same time, most commonly Alzheimer's disease and vascular dementia together.

What Your Diagnosis Really Means

When your doctor gives you a dementia diagnosis, they're making their best judgment based on your symptoms, test results, and medical history. Sometimes the diagnosis is "probable Alzheimer's disease" or "possible vascular dementia" because doctors can't be 100% certain without examining brain tissue.

Understanding which stage of dementia you're in matters for planning. Early-stage dementia means you can still participate in most decisions about your care. Middle-stage dementia requires more help with daily tasks. Late-stage dementia means needing full-time care.

Your doctor should explain:

• Which type of dementia you have
• What stage you're currently in
• How quickly your condition is likely to progress
• What symptoms to expect as things change

Don't hesitate to ask your doctor to repeat or clarify anything you don't understand. Bring a family member or friend to appointments to help remember what's said.

Tracking Your Symptoms

Keeping track of changes helps your doctor adjust your treatment plan. Start a simple journal noting:

• Memory lapses or confusion
• Mood or personality changes
• Difficulty with familiar tasks
• Problems with words or following conversations
• Getting lost in familiar places
• Poor judgment or decision-making

Some people find apps helpful for tracking symptoms. Others prefer a simple notebook. What matters is having a record to share with your healthcare team.

Processing the Emotional Impact

A dementia diagnosis brings up powerful emotions. Acknowledging these feelings is an important first step in coping.

Common Emotional Reactions

Fear is one of the most common reactions. You might worry about losing your independence, becoming a burden, or losing yourself. These fears are understandable and valid.

Anger often follows. You might feel angry at your body for failing you, angry at the unfairness of the diagnosis, or angry at doctors who didn't catch it sooner.

Some people feel relief. After months or years of knowing something was wrong, having an answer can actually bring some peace. You're not crazy or lazy—there's a real medical reason for the changes you've been experiencing.

Grief is natural too. You're grieving for the future you expected to have and the person you used to be. This sadness is appropriate and important to feel.

Denial sometimes shows up, especially in early stages. Part of you might want to believe the doctors made a mistake or that your symptoms aren't that bad.

Healthy Coping Strategies

Writing in a journal helps many people process their emotions. You don't have to write perfectly—just get your thoughts and feelings out on paper.

Physical activity reduces stress and anxiety while keeping your body healthy. Even a 20-minute walk can improve your mood. Regular exercise may even help slow cognitive decline.

Meditation and deep breathing calm your nervous system. Many free apps offer guided meditations specifically for people dealing with health challenges.

Creative activities like painting, music, or crafts give you a way to express emotions that are hard to put into words.

Getting Mental Health Support

If sadness, anxiety, or other difficult emotions last for weeks without improving, you might benefit from professional mental health support. Medicare covers mental health services, including counseling and therapy for depression and anxiety.

Look for a therapist who has experience working with people facing serious health diagnoses. They understand the unique challenges of adjusting to life with a chronic condition.

Support groups connect you with others who truly understand what you're going through. The Alzheimer's Association runs both in-person and online support groups specifically for people in early-stage dementia.

Talking About Your Diagnosis

Deciding who to tell and when is deeply personal. Some people want to share the news right away. Others need time to process before telling family and friends.

When talking with family members, be honest about your diagnosis and what it means. Share information from your doctor about what to expect. Let them know what kind of support you need.

Explaining dementia to children and grandchildren requires age-appropriate language. Young children might understand "Grandpa's brain isn't working as well as it used to." Teenagers can handle more details about the condition.

You don't have to tell everyone. It's okay to keep your diagnosis private from certain people if that feels right to you. However, telling your employer is important if you're still working, and telling close friends ensures you have support when you need it.

Building Your Medical Care Team

Managing dementia works best when you have a team of healthcare professionals working together.

Essential Healthcare Providers

Your primary care doctor coordinates your overall health care and manages general medical needs. They should know about your dementia diagnosis so they can adjust how they care for other health conditions you have.

A neurologist specializes in brain and nervous system conditions. They can confirm your diagnosis, prescribe medications, and monitor disease progression. Some neurologists specialize specifically in dementia care.

A geriatrician is a doctor who specializes in caring for older adults. They understand how dementia interacts with other age-related health issues and can help manage complex medication regimens.

A neuropsychologist performs detailed cognitive testing to establish a baseline of your abilities and track changes over time. These tests help your care team understand which specific areas of thinking are affected.

An occupational therapist teaches strategies to help you stay independent longer. They can recommend tools and techniques that make daily tasks easier and safer.

A physical therapist helps you maintain strength, balance, and mobility. This reduces fall risk and keeps you physically active, which benefits both body and brain.

A speech therapist (speech-language pathologist) works on communication problems and swallowing difficulties that sometimes develop as dementia progresses.

Coordinating Between Providers

All your doctors need to know about your dementia diagnosis and what other specialists are doing. Medication interactions can be dangerous, and treatment plans from different doctors need to work together.

Use patient portals when available to share test results and notes between providers. Make sure every doctor has contact information for your other healthcare providers.

Consider asking one provider—often your primary care doctor or neurologist—to serve as the leader of your care team. This person helps coordinate appointments, manages referrals, and ensures everyone is on the same page.

Important Questions to Ask Your Doctor

Come to appointments prepared with questions. Write them down beforehand so you don't forget. Important questions include:

• What type of dementia do I have, and how certain are you?
• What stage am I in right now?
• How quickly is my condition likely to progress?
• What medications are available for my specific type of dementia?
• What are the side effects I should watch for?
• Should I consider participating in clinical trials?
• What specialists do I need to see?
• How often should I have follow-up appointments?
• What symptoms mean I should call you between appointments?
• Are there genetic implications my family should know about?

Don't worry about asking too many questions. Good doctors want you to understand your condition and be involved in your care.

Treatment Options and Medications

While there's no cure for dementia yet, treatments can help manage symptoms and possibly slow progression.

FDA-Approved Medications

Several FDA-approved medications treat Alzheimer's disease. These don't cure the disease or reverse damage, but they can help with symptoms for a limited time.

Cholinesterase inhibitors include donepezil (Aricept), rivastigmine (Exelon), and galantamine (Razadyne). These medications increase levels of a brain chemical important for memory and thinking. They work best in early to moderate stages of Alzheimer's disease.

Memantine (Namenda) works differently by regulating glutamate, another brain chemical. Doctors prescribe it for moderate to severe Alzheimer's disease, sometimes in combination with a cholinesterase inhibitor.

Newer medications include lecanemab (Leqembi) and donanemab (Kisunla), which target amyloid proteins in the brain. These drugs are approved for early-stage Alzheimer's disease and may slow cognitive decline. However, they require regular infusions and careful monitoring.

Medicare coverage for dementia medications varies. A Solace advocate can help you understand what your specific plan covers and appeal any denials.

Managing Side Effects

All medications can cause side effects. Common ones with dementia drugs include nausea, diarrhea, loss of appetite, and sleep problems. These often improve after a few weeks as your body adjusts.

Tell your doctor right away if side effects are severe or don't improve. Sometimes adjusting the dose or trying a different medication helps. Never stop taking prescribed medications without talking to your doctor first.

Complementary Approaches

Along with medication, lifestyle changes support brain health. Eating a heart-healthy diet rich in vegetables, fruits, whole grains, and lean proteins benefits your brain. The Mediterranean diet and DASH diet both show promise for cognitive health.

Regular physical activity may help slow cognitive decline. Aim for at least 30 minutes of moderate exercise most days of the week. Walking, swimming, and tai chi are all good options.

Getting enough quality sleep matters for brain health. Poor sleep can worsen dementia symptoms. Talk to your doctor if you're having trouble sleeping.

Staying socially active and mentally engaged helps too. Activities that challenge your brain, like puzzles, reading, learning new skills, or playing music, may help maintain cognitive function.

Managing other health conditions—especially diabetes, high blood pressure, and high cholesterol—protects your brain from further damage.

Clinical Trials and Research Studies

Participating in clinical trials helps advance dementia research while possibly giving you access to new treatments before they're widely available. Researchers test new medications, behavioral interventions, and other approaches in trials.

The Alzheimer's Disease Research Centers across the country conduct many clinical trials. Ask your doctor about trials you might be eligible for, or search the Clinical Trials Finder online.

Some people also consider brain donation programs. Donating your brain after death helps researchers better understand dementia and develop new treatments. Organizations like the Brain Donor Project can provide more information.

Legal and Financial Planning

Getting your legal and financial affairs in order now, while you can still make informed decisions, is one of the most important steps after a dementia diagnosis.

Essential Legal Documents

Advance directives are documents that explain what medical care you want if you become unable to speak for yourself. Every adult should have these, but they're especially important when you have a progressive condition like dementia.

A healthcare power of attorney (also called healthcare proxy or healthcare agent) names someone you trust to make medical decisions for you if you can't make them yourself. Choose someone who knows your values and will respect your wishes.

A living will explains what kinds of medical treatment you want or don't want at the end of life. This includes decisions about life support, feeding tubes, and resuscitation. Be specific about your preferences.

HIPAA authorization forms allow your healthcare proxy and other family members to access your medical information and talk to your doctors. Without these, privacy laws prevent doctors from sharing information even with your spouse or adult children.

A financial power of attorney names someone to handle your finances and legal matters if you become unable to do so. This can be the same person as your healthcare proxy or someone different.

A will explains how you want your property distributed after you die. You should also consider a living trust, which can help avoid probate and provide more control over your assets.

All these documents need to be completed while you still have legal capacity to make informed decisions. Don't wait—many people with dementia lose this capacity faster than expected.

Working with Legal Professionals

An elder law attorney specializes in legal issues affecting older adults, including estate planning, long-term care planning, and asset protection. They understand how to structure your finances to protect your assets while potentially qualifying for benefits like Medicaid.

When meeting with an elder law attorney, bring:

• Lists of all your assets (bank accounts, retirement accounts, property, vehicles)
• Information about debts and liabilities
• Insurance policies
• Existing legal documents (old wills, powers of attorney)
• Names and contact information for people you want to name as agents or beneficiaries

Fees for elder law attorneys vary, but the cost is worth it for proper planning. Some charge by the hour, others charge flat fees for specific services.

Financial Planning Steps

Create a complete financial inventory. List every bank account, investment account, retirement account, insurance policy, mortgage, loan, and credit card. Include account numbers and contact information.

Gather important documents and put them in one place:

• Birth certificate and Social Security card
• Marriage license and divorce decrees
• Military discharge papers
• Property deeds and vehicle titles
• Insurance policies
• Tax returns
• Investment statements
• Pension documents

Set up automatic payments for regular bills like utilities, insurance, and mortgage to ensure things get paid even if you forget. Simplify your banking by consolidating accounts when possible.

Consider adding a trusted family member to your bank accounts so they can help manage finances as needed. Just be sure this is someone you completely trust.

Managing Money Day-to-Day

Financial exploitation of people with dementia is unfortunately common. Scammers target people with cognitive impairment, and even family members sometimes take advantage.

Protect yourself by:

• Shredding financial documents before throwing them away
• Never giving personal information over the phone unless you initiated the call
• Being wary of "too good to be true" investment opportunities
• Asking a trusted person to review major financial decisions
• Signing up for fraud alerts with your bank and credit cards

As your condition progresses, you may need to give up managing your own finances entirely. This is hard but important for protecting your assets. The person you've named in your financial power of attorney can take over when the time comes.

Medicare and Insurance Coverage

Understanding what insurance covers for dementia care helps you access all available benefits and avoid surprise bills.

What Medicare Covers for Dementia

Medicare Part A covers inpatient hospital care if you need hospitalization for dementia-related issues. It also covers up to 100 days in a skilled nursing facility after a qualifying hospital stay, and some home health care services.

Medicare Part B covers doctor visits, diagnostic tests, outpatient services, and medical equipment. Your regular checkups, cognitive assessments, and visits with specialists are all covered under Part B. Annual wellness visits include screening for cognitive impairment.

Medicare Part D covers prescription drugs, including medications for dementia. However, not all plans cover all drugs. Check your plan's formulary to see if your medications are covered, and what your copays will be.

What Medicare doesn't cover is long-term custodial care—the daily help with bathing, dressing, and other activities of daily living that most people with advanced dementia need. Medicare only covers skilled care related to specific medical needs.

Medicare Advantage Considerations

Medicare Advantage plans (Part C) are private insurance plans that provide all your Medicare coverage in one plan. Some Medicare Advantage plans offer extra benefits traditional Medicare doesn't cover, such as:

• Care coordination services
• Transportation to medical appointments
• Adult day care programs
• Respite care for caregivers
• Telehealth services

Review your Medicare Advantage plan carefully to understand what's covered. Plans change their benefits every year, so check annually during open enrollment.

Medicaid for Long-Term Care

Medicaid is a joint federal-state program that covers long-term care costs for people who meet income and asset requirements. Each state runs its own Medicaid program with different eligibility rules.

For most people, qualifying for Medicaid requires "spending down" assets to meet financial limits. However, certain assets are protected, and planning strategies can help preserve some assets for a spouse or other family members.

Medicaid covers:

• Nursing home care
• Home and community-based services
• Personal care assistance
• Adult day programs
• Assisted living (in some states)

Apply for Medicaid through your state's program. This process can be complex, so many people work with an elder law attorney or Medicaid planning specialist.

Private Insurance and Benefits

Long-term care insurance policies vary widely in what they cover and how much they pay. If you have long-term care insurance, review your policy carefully to understand your benefits. File claims promptly and keep detailed records.

Some life insurance policies have chronic illness riders that allow you to access death benefits early if you're diagnosed with a qualifying condition. Check with your insurance company about your policy's provisions.

If you're a veteran, the VA offers benefits including Aid and Attendance benefits, which provide extra money to help pay for care. Contact your local VA office to learn what you qualify for.

Home Safety Modifications

Making your home safer now prevents accidents and helps you stay independent longer.

Fall Prevention Measures

Falls are a major risk for people with dementia. Remove tripping hazards throughout your home:

• Take up throw rugs or use non-slip backing
• Secure or remove electrical cords from walkways
• Clear clutter from floors and stairs
• Remove low furniture like ottomans

Install grab bars in the bathroom next to the toilet and in the shower or tub. Make sure they're properly anchored to wall studs—suction cup grab bars aren't secure enough.

Improve lighting throughout your home. Use bright bulbs, install night lights in hallways and bathrooms, and keep a flashlight by your bed. Motion-activated lights help too.

Consider non-slip mats in the bathroom and non-skid rugs in other rooms. Make sure carpets are tacked down firmly.

Declutter walkways so you have clear paths through every room. This is especially important at night when visibility is lower.

Kitchen and Bathroom Safety

The kitchen presents several safety risks. Consider:

• Stove guards or automatic shut-off devices
• Locking cabinets for cleaning products and sharp objects
• Temperature limiters on faucets to prevent scalding
• Simplified appliance controls with clear labels

In the bathroom:

• Set water heater temperature to 120°F or lower
• Use nonslip mats in tub and shower
• Install a raised toilet seat if needed
• Keep counters clear of clutter

Technology and Monitoring

Medical alert systems let you call for help by pressing a button worn as a necklace or bracelet. Many systems now include automatic fall detection.

GPS tracking devices help loved ones locate you if you wander. Some come as watches or clip to clothing. The MedicAlert + Alzheimer's Association Safe Return program provides 24/7 support if you go missing.

Medication management systems dispense pills at scheduled times and alert you when it's time to take medications. Some also notify family members if you miss a dose.

Door and window alarms alert family members if you leave the house unexpectedly. This is especially important if wandering becomes a concern.

Smart home devices like voice-activated assistants can set reminders, answer questions, play music, and control lights without complex buttons or switches.

General Safety Considerations

Remove locks from interior bathroom doors or replace them with locks that can be opened from outside in case of emergency. You don't want to get locked in by accident.

Hide car keys once driving becomes unsafe. Some people need this step earlier than they want to admit.

Secure firearms and ammunition separately, and consider removing them from the home entirely. Dementia affects judgment and impulse control.

Post emergency contact numbers by every phone in large, clear writing. Include your doctor, pharmacy, and trusted family members.

Label rooms with pictures or simple signs if finding specific rooms becomes difficult. Visual cues help when memory fails.

Driving and Transportation Planning

Deciding when to stop driving is one of the hardest parts of living with dementia. Planning ahead makes this transition easier.

When to Stop Driving

Warning signs that driving is becoming unsafe include:

• Getting lost on familiar routes
• Forgetting where you're going
• Failing to observe traffic signals or signs
• Driving too slowly or too fast
• Making poor decisions about when to turn or merge
• Having near-misses or minor accidents
• Getting honked at frequently by other drivers
• Feeling nervous or confused while driving

If family members express concern about your driving, take it seriously. They're trying to keep you and others safe.

Get a formal driving assessment from an occupational therapist trained in driver rehabilitation. They evaluate your driving skills objectively and can recommend whether you should continue driving, whether modifications might help, or whether it's time to stop.

Legal Requirements

In most states, doctors are required or encouraged to report patients with dementia to the Department of Motor Vehicles. Some states require you to report your diagnosis yourself. State laws vary, so check your local requirements.

You must notify your car insurance company about your diagnosis. Failing to do so could invalidate your coverage.

Having the Driving Conversation

This is an emotional conversation for most people. Driving represents independence and freedom. Giving it up feels like losing part of yourself.

Approach the topic gradually if possible. Start by suggesting you only drive during daytime, avoid highways, or have someone ride along. These interim steps might work for a while.

Having your doctor involved helps. When a medical professional says it's no longer safe to drive, it's easier to accept than hearing it from family.

Frame the conversation around safety for yourself and others. No one wants to be responsible for hurting someone else in an accident.

Alternative Transportation Options

Plan transportation alternatives before you stop driving. Options include:

Public transportation like buses and trains work well in urban areas. Many transit agencies offer reduced fares for seniors and people with disabilities. Some provide travel training to help you learn routes.

Ride-sharing services like Uber and Lyft are widely available. Family members can set up accounts and schedule rides for you. Some services specialize in senior transportation.

Community transportation programs provide low-cost or free rides for medical appointments, grocery shopping, and other essential trips. Contact your local Area Agency on Aging to find programs in your area.

Volunteer driver programs match volunteers with people who need rides. These are often free or ask for small donations.

Paratransit services provide door-to-door transportation for people with disabilities who can't use regular public transportation. You must apply and be approved for these services.

Family and friends can help with rides. Set up a schedule so the burden doesn't fall on one person.

Employment Considerations

If you're still working when you receive your diagnosis, you have important decisions to make about your job.

If You're Still Working

You're not legally required to tell your employer about your diagnosis, but there are good reasons to do so. Disclosing your condition allows you to request reasonable accommodations under the Americans with Disabilities Act (ADA).

Reasonable accommodations might include:

• Written instructions instead of verbal ones
• More frequent breaks
• A quieter workspace with fewer distractions
• Reduced hours or modified schedule
• Assistive technology or memory aids
• Additional training time

Request accommodations in writing and keep copies of all communications with your employer. Document any problems or denials.

The Family and Medical Leave Act (FMLA) provides up to 12 weeks of unpaid leave for serious health conditions. You must work for a covered employer and meet other eligibility requirements.

Short-term and long-term disability insurance through your employer may provide income while you're unable to work. Review your benefits and file claims promptly.

Social Security Disability Insurance (SSDI) provides benefits if your condition prevents you from working. Dementia qualifies under Social Security's Compassionate Allowances program, which speeds up approval for certain severe conditions.

Planning for Retirement

Many people with dementia retire earlier than planned. This affects your finances in several ways:

Retirement accounts like 401(k)s and IRAs may have penalties for early withdrawal before age 59½. However, disability exceptions might apply.

Pension plans usually have early retirement options, though monthly benefits may be reduced.

Health insurance becomes critical if you retire before age 65 when Medicare starts. You might qualify for COBRA continuation coverage from your employer, or you may need to buy insurance through the Health Insurance Marketplace. Some people qualify for Medicaid.

Social Security retirement benefits are available as early as age 62, but monthly payments are reduced compared to waiting until full retirement age. You'll need to decide whether taking benefits early makes sense.

Daily Life and Maintaining Independence

The goal is to stay as independent as possible for as long as possible while staying safe.

Creating Structured Routines

Consistent daily routines reduce confusion and help you remember what needs to be done. Structure provides comfort and security.

A sample daily routine might include:

• Wake up at the same time every day
• Eat meals at regular times
• Take medications at scheduled times using pill organizers
• Morning walk or exercise
• Engaging activities (puzzles, reading, hobbies)
• Social time with family or friends
• Evening wind-down routine
• Bedtime at consistent time

Use calendars, whiteboards, and reminder notes to help you follow your routine. Digital assistants can provide verbal reminders throughout the day.

Balance structure with flexibility. Having a routine doesn't mean every minute is scheduled. Leave room for spontaneity and rest.

Memory Aids and Tools

Simple tools can help you stay independent:

Pill organizers with compartments for each day of the week (or multiple times per day) prevent medication errors. Set phone alarms as reminders to take pills.

Checklists break complex tasks into simple steps. Post lists for morning routines, bedtime routines, and other regular activities.

Labels on drawers, cabinets, and storage containers help you find things quickly. Use pictures along with words for extra clarity.

A note system by the door reminds you of essential items before leaving home: wallet, keys, phone, glasses.

Digital assistants like Alexa or Google Home can set reminders, answer questions, play music, and provide entertainment without needing to remember how to use complicated devices.

Staying Physically Active

Regular exercise benefits both your body and brain. It reduces fall risk, improves mood, helps you sleep better, and may slow cognitive decline.

Safe activities include:

• Walking (outdoors or on a treadmill)
• Swimming or water aerobics
• Tai chi or yoga
• Dancing
• Gardening
• Stationary bike

Aim for at least 30 minutes of moderate activity most days. If that seems like too much, start with 10 minutes and gradually increase.

Many gyms and community centers offer exercise classes specifically designed for people with dementia or cognitive impairment. These provide both exercise and social connection.

Always check with your doctor before starting a new exercise program.

Keeping Your Mind Engaged

Mental stimulation may help maintain cognitive function and improve quality of life. Activities that challenge your brain include:

• Puzzles (jigsaw, crossword, Sudoku)
• Card games and board games
• Reading books and magazines
• Listening to audiobooks
• Learning new skills (within your ability level)
• Playing musical instruments
• Trivia and quiz games
• Word games like Scrabble

Choose activities you enjoy. The goal is engagement and pleasure, not frustration. As abilities change, adapt activities to maintain success and satisfaction.

Meaningful Activities and Hobbies

Continue hobbies you've always enjoyed, adapting them as needed. If you loved cooking, you might transition to simpler recipes, then to helping with meal prep, then to arranging flowers for the table.

Music brings joy to many people with dementia. Listening to favorite songs, singing, or playing instruments can lift mood and spark memories.

Art activities like painting, drawing, or crafts provide creative expression without requiring complex thinking.

Gardening connects you with nature and provides gentle physical activity. Even tending houseplants or a small herb garden helps.

Volunteering gives life meaning and purpose. Many organizations welcome volunteers with dementia for appropriate tasks.

Planning for Future Care Needs

As dementia progresses, your care needs will change. Planning ahead reduces stress for everyone.

Understanding Care Options

Aging in place means staying in your own home with support services. This is possible in early and sometimes middle stages with help from family, paid caregivers, and community services.

Home health care services bring skilled nursing, physical therapy, or personal care to your home. Medicare covers some home health care after a qualifying hospital stay.

Adult day programs provide activities, meals, and supervision during daytime hours. This gives family caregivers a break while keeping you socially engaged.

Assisted living facilities provide housing with help available for daily tasks like bathing, dressing, and medication management. Staff is available 24/7, but this isn't medical care.

Memory care communities are specialized assisted living units designed for people with dementia. They have enhanced security, specialized staff training, and programs designed for cognitive impairment.

Nursing homes provide the highest level of care, including skilled nursing services. Most people with advanced dementia eventually need this level of care.

Hospice care focuses on comfort rather than cure when life expectancy is six months or less. Hospice can be provided at home, in assisted living, or in a nursing home.

When to Consider Different Care Settings

Signs that home care may no longer be enough:

• You or your caregiver feel unsafe
• Wandering becomes frequent or dangerous
• Behavior problems become unmanageable
• Care needs exceed what family can provide
• Caregiver health is suffering from stress
• You need supervision 24 hours a day

These decisions are never easy. Most people prefer to stay home as long as possible, but sometimes a care facility provides better safety and quality of life.

Evaluating Care Facilities

If you're considering assisted living or memory care, visit multiple facilities. Things to look for include:

• Specialized dementia training for all staff
• Secure environment to prevent wandering
• Engaging activities designed for people with dementia
• Small group sizes and high staff-to-resident ratios
• Clean, well-maintained facilities
• Residents who appear well-cared-for and content
• Good communication between staff and families

Read online reviews and check state inspection reports for violations. Talk to current residents' families about their experiences.

Understand costs and what's included. Most assisted living and memory care is paid out-of-pocket unless you have long-term care insurance. Medicaid may help pay for nursing home care in some states.

Advance Care Planning

Advance care planning means discussing and documenting your preferences for medical care as your condition worsens.

Important topics to discuss with your healthcare proxy and family:

• Where do you want to receive care?
• What medical interventions do you want or not want?
• How do you feel about feeding tubes if you can't eat?
• What would make quality of life acceptable or unacceptable to you?
• Do you want to donate your body or brain to research?

A DNR (Do Not Resuscitate) order tells medical staff not to perform CPR if your heart stops. A POLST (Physician Orders for Life-Sustaining Treatment) form specifies your preferences for other medical interventions.

Have these conversations now, while you can clearly express your wishes. Write everything down in your advance directive. Review and update your documents as your thinking changes.

Building Your Support Network

You can't manage dementia alone. Building a strong support network is essential.

Family Involvement

Hold a family meeting to discuss your diagnosis, what help you'll need, and how family members can contribute. Be specific about tasks people can help with:

• Transportation to appointments
• Help with shopping or errands
• Managing finances and paperwork
• Home maintenance and repairs
• Meal preparation
• Companionship and social activities

Define roles and responsibilities clearly. Designate one person as the primary contact for healthcare providers to avoid confusion.

Family conflicts about care are common. Try to address disagreements directly and respectfully. Sometimes a family meeting with a social worker or mediator helps everyone communicate better.

Professional Support Services

Geriatric care managers (also called aging life care professionals) are usually nurses or social workers who assess your needs, develop care plans, coordinate services, and monitor care. They charge by the hour but can save money by preventing problems and optimizing care.

Social workers help you access community resources, navigate insurance and benefits, and adjust to living with dementia. Many hospitals and clinics have social workers on staff.

Respite care gives family caregivers a break by providing temporary care for you. This might be a few hours, overnight, or up to a week. Most family caregivers need regular respite to avoid burnout.

In-home help from home health aides or personal care assistants can provide assistance with bathing, dressing, meals, and other daily needs. Private agencies and private caregivers offer these services.

Community Resources

Your local Area Agency on Aging connects you with services including:

• Information and assistance
• Home-delivered meals (Meals on Wheels)
• Transportation services
• Caregiver support programs
• Adult day care

The Alzheimer's Association offers free services including:

• 24/7 Helpline (800-272-3900)
• Support groups
• Educational programs
• Safety services
• Online community forums

Faith communities often provide practical support like meals, rides, and companionship. Don't hesitate to ask for help from your religious community.

Senior centers offer activities, meals, and social connections. Many have special programs for people with memory problems.

Support Groups

Support groups connect you with others facing similar challenges. Sharing experiences, coping strategies, and emotions with people who understand is incredibly valuable.

Early-stage support groups are specifically for people with dementia who can still actively participate. These groups meet in person or online and focus on living well with the condition.

Online support groups offer flexibility to participate anytime from home. ALZConnected is the Alzheimer's Association's online community.

Some people prefer in-person groups for the human connection. Others appreciate online groups' privacy and convenience. Try both to see what works for you.

Staying Connected and Living Well

Dementia changes your life, but it doesn't have to end your life. You can still find joy, meaning, and connection.

Maintaining Relationships

Stay connected with friends and family. Social isolation worsens cognitive decline and depression. Make plans to see people regularly, even if visits are shorter or simpler than they used to be.

Explain your needs to others. Let friends know if you have trouble following rapid conversations or need reminders about plans. True friends will understand and adjust.

Accept help from others. Many people want to help but don't know what to do. Give them specific tasks: "Could you drive me to my appointment Tuesday?" or "Would you stop by for coffee on Wednesday afternoon?"

Don't let social stigma keep you isolated. Dementia is a medical condition, not something to be ashamed of. The more open you are, the more support you'll receive.

Travel and Recreation

Travel is still possible in early-stage dementia with planning. Tips for safe travel:

• Keep routines as consistent as possible
• Bring medications in their original bottles
• Carry medical information and emergency contacts
• Consider traveling with a companion
• Choose familiar or easy-to-navigate destinations
• Build in extra time and avoid rushing

Register with MedicAlert + Safe Return before traveling. If you become separated from your travel companion, this program helps reunite you.

Day trips and local outings provide stimulation without the complexity of overnight travel. Visit parks, museums, concerts, or restaurants you enjoy.

Spiritual and Emotional Fulfillment

Maintain connections with your faith community if religion is important to you. Many religious organizations welcome people with dementia and adapt their programs to accommodate cognitive changes.

Finding meaning and purpose remains important even with dementia. Focus on what you can still do, not what you've lost. Celebrate small successes and appreciate simple pleasures.

Legacy projects like writing your life story, recording videos for family, or creating memory books give you a way to share your wisdom and experiences.

Share your knowledge with others. Your years of experience have value. Teaching others what you've learned over a lifetime is meaningful and purposeful.

Creating a Memory Book or Life Story

A memory book preserves your personal history and provides a conversation starter when talking becomes difficult.

Gather materials:

• Photographs from throughout your life
• Mementos and souvenirs
• Letters and cards
• Certificates and awards
• Favorite quotes or poems

Organize chronologically or by themes (family, career, hobbies, travel). Add captions explaining who, what, when, and where.

Write down or record important memories:

• Where you grew up
• Favorite childhood memories
• How you met your spouse
• Stories about your children
• Career highlights
• Places you've traveled
• Important life lessons
• Advice for younger generations

Digital formats like photo books, videos, or audio recordings work well. Traditional scrapbooks provide something tangible to hold and flip through.

Involve family in the process. Working on memory projects together sparks conversations and creates shared experiences.

Educational Resources and Further Learning

The more you learn about dementia, the better prepared you'll be.

Recommended Books About Dementia

The 36-Hour Day by Nancy L. Mace and Peter V. Rabins is the most comprehensive guide for people with dementia and their families. It covers everything from understanding the disease to managing behavior changes to long-term care planning.

Dementia Reimagined by Dr. Tia Powell explores new ways of thinking about dementia that focus on quality of life rather than just managing decline.

Learning to Speak Alzheimer's by Joanne Koenig Coste teaches communication techniques that reduce frustration and improve interactions.

Being Mortal by Dr. Atul Gawande examines how medicine and society approach aging and dying, offering insights about what makes life meaningful even with serious illness.

Trusted Websites and Organizations

Alzheimer's Association provides the most comprehensive information about all types of dementia, including resources for both people with the condition and family caregivers.

National Institute on Aging offers research-based information about dementia, caregiving, and healthy aging.

Alzheimers.gov is a government website with information about diagnosis, treatment, care options, and financial planning.

Dementia Society of America focuses on reframing dementia around quality of life and continuing to live well with the condition.

UsAgainstAlzheimer's advocates for better treatments and support for people with dementia, with special focus on health equity.

Online Courses and Webinars for Dementia Patiets and their family.

Savvy Caregiver training is an evidence-based program that teaches family caregivers skills and strategies for providing care while maintaining their own well-being.

Dementia Friends offers free online training to help anyone understand dementia and support people living with the condition.

Teepa Snow's Positive Approach to Care provides training videos and webinars about understanding dementia and communicating effectively.

The Alzheimer's Association offers free webinars on topics like understanding medications, managing behaviors, care planning, and more. Check their website for upcoming sessions.

How a Solace Advocate Can Help

Managing everything after a dementia diagnosis feels overwhelming. You're dealing with difficult emotions, learning about a complex disease, coordinating multiple doctors, navigating insurance, handling legal paperwork, and trying to plan for an uncertain future. That's where a Solace advocate makes a real difference.

A Solace advocate is a dedicated healthcare professional who becomes your partner in managing your dementia care from diagnosis forward. Unlike call centers or marketplace platforms where you get a different person each time, your Solace advocate gets to know you, your family situation, your preferences, and your specific challenges. They stay with you as your needs change over time.

Your advocate coordinates all your specialists, making sure everyone is on the same page about your care plan. They attend appointments with you (in person or remotely), help you understand what doctors are saying, ask the right questions, and take notes so you don't have to remember everything discussed. After appointments, they follow up to make sure recommendations are implemented and referrals actually happen.

Understanding Medicare coverage for dementia care is complicated. Your advocate reviews your specific plan, explains what's covered and what's not, helps you get prior authorizations for medications and services, and appeals claim denials. They know how to navigate Medicare's rules to maximize your benefits.

Finding specialists who accept your insurance and have experience treating dementia takes hours of phone calls. Your advocate does that research for you, finding neurologists, geriatricians, neuropsychologists, and other providers who are taking new patients and are a good fit for your needs.

They connect you with local resources you might not know exist—support groups, adult day programs, transportation services, financial assistance programs, meal delivery, and more. Every community has different resources available, and your advocate knows how to find them.

When you need help with legal and financial planning, your advocate can recommend elder law attorneys, help you understand what documents you need, and ensure your advance directives get into your medical records so they're followed.

As your condition progresses, your advocate helps you evaluate care options, visit facilities if needed, understand costs, and make informed decisions about the right level of care. They help with transitions between care settings, making sure information transfers properly and your care plan continues without interruption.

Perhaps most importantly, your advocate provides emotional support. They listen when you're scared or frustrated. They reassure you that what you're experiencing is normal. They remind you that you're doing everything you can. Having someone in your corner who truly understands both the healthcare system and what you're going through makes this journey less lonely.

You don't have to figure all this out by yourself. Let a Solace advocate help you navigate dementia care so you can focus on living well.

Frequently Asked Questions

How soon after diagnosis should I start medication and treatment?

Start treatment as soon as your doctor recommends it. The medications available for dementia work best when started early in the disease process. They won't cure dementia or reverse damage that's already occurred, but they may help manage symptoms and possibly slow progression for a period of time. Don't delay starting medications while you're still processing the diagnosis emotionally. You can begin treatment while also taking time to adjust psychologically. Beyond medications, other treatments like cognitive stimulation, physical exercise, and social engagement should begin immediately. These lifestyle approaches have the most benefit when incorporated early and maintained consistently throughout the disease course.

Will I eventually need to move to a memory care facility, or can I stay home?

How long you can stay at home depends on many factors: your specific type and rate of progression, what support you have from family and community services, your safety situation, and whether behaviors like wandering develop. Many people with dementia live at home for years, especially in early and middle stages, with help from family, paid caregivers, and community resources. Others need facility care sooner due to living alone, lack of family support, or safety concerns. There's no single answer—the decision is highly individual. What's most important is having honest conversations with your family about your preferences, planning ahead for different scenarios, and being willing to reassess as your situation changes. The goal is the safest, highest-quality care possible, whether that's at home or in a facility.

Can I still make my own medical and financial decisions right now?

Yes, in most cases. A dementia diagnosis doesn't automatically mean you lose capacity to make decisions. Legal capacity depends on your ability to understand information, appreciate consequences, reason through options, and communicate a choice. Many people with early-stage dementia retain decision-making capacity for years. However, capacity can fluctuate and decline over time, which is why it's critical to make important legal and financial decisions now while you definitely have capacity. Complete your advance directives, powers of attorney, will, and other legal documents as soon as possible. As dementia progresses, there may come a time when you lack capacity for certain complex decisions while retaining it for simpler ones. Your doctor can assess your decision-making capacity if questions arise.

What's the difference between Medicare and Medicaid for dementia care?

Medicare is federal health insurance for people 65 and older (and some younger people with disabilities). It covers doctor visits, hospital care, diagnostic tests, skilled nursing care after hospital stays, some home health services, and prescription drugs. However, Medicare does not cover long-term custodial care—the daily help with bathing, dressing, and other personal care needs that most people with advanced dementia require. Medicaid is a joint federal-state program for people with limited income and assets. Medicaid does cover long-term care in nursing homes and, in many states, also covers home and community-based services. To qualify for Medicaid, you must meet strict financial requirements, which often means spending down assets first. Many people with dementia use Medicare for their medical care while eventually relying on Medicaid to pay for long-term care when their assets are depleted.

Should my family members get tested for dementia or Alzheimer's disease?

Whether family members should get tested depends on several factors. For most types of dementia, family history increases risk somewhat but doesn't mean family members will definitely develop the condition. Genetic testing is available for rare forms of early-onset familial Alzheimer's disease caused by specific gene mutations, but these account for less than 5% of all Alzheimer's cases. For the more common late-onset Alzheimer's disease, genetic testing looks at risk variants like APOE-e4, but having these genes doesn't guarantee someone will get Alzheimer's, and not having them doesn't guarantee they won't. Family members should discuss their concerns with their own doctors, who can assess their individual risk factors and determine whether genetic counseling or testing makes sense. Generally, genetic testing is most appropriate when there's a strong family history of early-onset dementia in multiple generations. What's most important for family members is managing modifiable risk factors like blood pressure, cholesterol, diabetes, physical activity, and social engagement.

This article is for informational purposes only and should not be substituted for professional advice. Information is subject to change. Consult your healthcare provider or a qualified professional for guidance on medical issues, financial concerns, or healthcare benefits.

Related Reading

• Navigating Care Options for Alzheimer's and Dementia
• Understanding the FAST Scale for Dementia
• Signs of End-Stage Dementia: What to Expect and Care Options
• Can a Hospital Kick Out a Dementia Patient? Next Steps to Take
• What Medicare Does and Doesn't Cover for Alzheimer's Care