A dementia diagnosis can make ordinary decisions suddenly feel much more complicated. Your parent may still be doing many of the things they have always done, but you are now looking at familiar routines differently. Is it still safe for them to drive? Are they managing medications correctly? What happens if they forget to pay a bill or leave the stove on? And how much should you step in without taking away the independence they still have?

You do not have to answer all of those questions right away. Instead, focus on a few practical next steps and get a sense of what comes next.

This guide walks you through the early days after a dementia diagnosis, from talking with your parent and organizing medical care to reviewing legal documents, planning for future care in Illinois, and recognizing when additional support may be needed.

Key Takeaway:

After a parent is diagnosed with dementia, start by understanding the diagnosis, reviewing medications, scheduling follow-up appointments, and monitoring changes in daily life. Begin legal, financial, and long-term care planning early, while your parent can still participate in decisions about their future.

What Should You Do First After a Parent Is Diagnosed with Dementia?

The first few weeks after a diagnosis are about gathering information and getting organized. Here is where to start:

• Find out the type of dementia: Alzheimer’s disease, vascular dementia, Lewy body dementia and frontotemporal dementia progress differently and can cause different symptoms. Knowing the type helps you know what to watch for.
• Ask what stage your parents are in: Early-stage dementia looks very different from moderate or late-stage dementia, and the stage shapes how much help your parent needs right now.
• Review medications and other health conditions: Bring a full list of prescriptions, over-the-counter drugs and supplements to the next appointment. Some medications can worsen confusion, and conditions like hearing loss, depression, or a urinary tract infection can make symptoms look worse than they are.
• Schedule follow-up appointments: Get the next visit on the calendar before you leave the office and ask who to call between appointments.
• Write down what you notice: Keep notes on memory, behavior, mobility, eating, and how your parent handles everyday tasks. These notes become useful at every future appointment.
• Start talking about future care needs. You don’t need a full plan yet. You do need to start the conversation while your parents can still share what they want.
• Bring in trusted family members: Decide who will be involved, who handles what, and how you’ll keep each other updated. One overwhelmed adult child trying to do everything alone is a common pattern, and a hard one to sustain.

If you take just one practical step after the diagnosis, start a notebook. Nearly every decision that follows, from medication changes and medical appointments to home care and legal planning, is easier when you can point to specific examples of what has changed.

A dementia diagnosis can also raise questions about why the condition developed and whether other family members might face similar risks. While dementia cannot always be prevented, certain lifestyle habits may help reduce the risk of cognitive decline. Read our guide on Tips to Help Prevent Dementia as You Age to learn more about healthy habits that support brain health.

Dementia Diagnosis Checklist for Families

Use this checklist to organize the most important tasks after your parent’s diagnosis.

What to Do	Why It Matters
Confirm the type and stage of dementia	Helps your family understand the diagnosis and plan appropriate support.
Schedule medical follow-ups	Allows the doctor to monitor symptoms and discuss treatment options.
Review medications	Helps identify side effects or possible medication-related confusion.
Check home safety	Identifies fall hazards, kitchen risks, and other safety concerns.
Review financial and legal documents	Helps your parent express their wishes and make decisions while they can.
Discuss driving safety	Helps determine whether driving remains safe and appropriate.
Identify family caregiving responsibilities	Helps distribute responsibilities and prevents important tasks from being overlooked.
Explore dementia care options	Gives your family time to arrange appropriate support before an emergency arises.
Start a daily observation log	Makes changes in memory, behavior, and daily functioning easier to explain during medical appointments.

You do not need to complete everything in one week. Begin with medical follow-ups and any immediate safety concerns, then work through the remaining tasks with your parent and family.

Should You Tell Your Elderly Parent They Have Dementia?

In most cases, yes. People with dementia generally have a right to know their diagnosis, and many want to know. Knowing gives them a chance to make legal and financial decisions, share their wishes for future care, and understand why daily life has started to feel harder.

In many cases, the doctor has already shared the diagnosis during the appointment. Physicians typically discuss it directly with the patient, often with a family member present. Your parents may not have absorbed or remembered that conversation, though, so it may benefit to revisit it.

The goal is honest but compassionate communication. Tell the truth in simple terms without burying your parents in statistics or worst-case scenarios. You might say, “The doctor found that the memory problems you’ve been having are caused by a condition called dementia. It’s why remembering things has been harder lately.”

Some parents take the news calmly. Others become upset, frightened or angry, or deny anything is wrong. If that happens, don’t argue or push for acceptance. Acknowledge the feeling (“I know this is scary”), let them know they’re not facing it alone, and give it time. You can come back to the conversation later.

It can help to have the doctor take part, especially if your parents tend to dismiss information from family. Ask whether the physician, a nurse or a social worker can schedule a follow-up visit to talk through the diagnosis again and answer questions.

In more advanced dementia, a parent may not be able to retain the information, and repeating the diagnosis can cause fresh distress each time. In that situation, many families focus on comfort and reassurance rather than repeated explanations. Talk to your parent’s doctor if you’re unsure what’s right for your situation.

How to Tell a Parent They Have Dementia Without Causing Distress

If you’re the one starting the conversation, a few practical choices make it easier:

1. Choose a quiet, familiar place, like the kitchen table or their favorite chair, at a time of day when they’re usually at their best.
2. Use plain language. “Dementia” or “a memory condition” is clearer than medical terminology.
3. Share information a little at a time. You don’t need to cover everything in one sitting.
4. Stay in the present. Avoid listing what might happen years from now.
5. Leave room for questions and silence. Some people need a few minutes before they’re ready to talk.
6. Focus on support. Talk about what will help, who will be there and what stays the same.
7. Respect their reaction, whatever it is. Sadness, relief, anger and denial are all normal responses.

Why Do People with Dementia Stop Recognizing Family Members?

Dementia can affect a person’s ability to recognize familiar faces, names, and relationships. As the condition progresses, some people may struggle to recognize a spouse, child, or grandchild.

It is one of the most painful changes families experience, and understanding what is happening can make these moments a little easier.

Dementia can damage brain networks involved in storing and retrieving memories. A parent may recognize you as you looked many years ago but seem confused by your appearance today. They may even mistake you for a sibling or another relative.

Some people experience a specific difficulty recognizing faces, known as prosopagnosia. In certain forms of dementia, they may recognize a familiar voice even when they cannot identify the person’s face.

Recognition may also fluctuate. Your father might recognize you in the morning but seem uncertain later in the afternoon. Fatigue, illness, unfamiliar surroundings, and overstimulation can make confusion worse.

Sometimes your parent recognizes you as someone familiar and safe but cannot remember your relationship.

That connection still matters.

What to do when your parent does not recognize you:

• Introduce yourself calmly: “Hi Dad, it is Mike, your son.”
• Avoid testing their memory by asking, “Do you know who I am?”
• Do not argue or insist that they should recognize you.
• Follow their lead and focus on having a pleasant interaction.
• Use familiar voices, music, old photographs, or other reassuring activities.
• Give yourself time to process your feelings afterward.

Important: If your parent suddenly becomes much more confused, stops recognizing familiar people unexpectedly, or develops new symptoms such as fever, unusual sleepiness, or weakness, seek prompt medical attention. Sudden confusion is not something to assume is normal dementia progression. It can be caused by delirium or another acute medical condition. If the change is severe or accompanied by stroke-like symptoms, call 911

20 Things You Should Never Say to Someone with Dementia (and What to Say Instead)

Most of the phrases below come from a good place. You’re tired, you’re trying to help, and you want your parents to understand what’s happening. But to someone with dementia, even well-intended words can sound like criticism, feel like a test they’re failing, or reinforce the fear that something is wrong with them. Here are some more supportive ways to respond instead.

Avoid Saying	Try This Instead
“I already told you that.”	Answer again as if it’s the first time.
“Don’t you remember?”	“I was thinking about the time we…”
“You should know this.”	Offer the information gently: “That’s your granddaughter, Emma.”
“You’re wrong.”	“Let’s look at it together.” Or simply let a harmless mistake go.
“You’re being difficult.”	“This seems frustrating. Let’s take a break.”
“Calm down.”	“I can see you’re upset. I’m right here.”
“You’re acting crazy.”	“Something’s bothering you. Can you tell me about it?”
“I just explained that.”	Explain again, in fewer words.
“Why can’t you remember?”	Fill in the gap without pointing it out.
“You need to try harder.”	“Let’s do it together.”
“You don’t need help.”	“I’d like to help with this, if that’s okay.”
“You can’t do that.”	“How about we try it this way?”
“Stop asking me the same question.”	Answer calmly, then redirect to an activity.
“That’s not what happened.”	“Tell me more about that.”
“You already ate.”	“Lunch will be ready soon. Want a snack while we wait?”
“You need to behave.”	“Let’s step outside for some air.”
“Do you remember who I am?”	“Hi Mom, it’s Sarah.”
“You have dementia, so…”	Leave the diagnosis out and focus on the task.
“You can’t make that decision.”	“Let’s talk it through. Which option feels best to you?”
“You’re embarrassing me.”	Say nothing in the moment. Quietly guide them somewhere calmer.

The pattern behind all 20 is the same. Arguing, correcting and testing memory usually make things worse. Reassurance, simple language and redirection usually help.

How to Communicate Effectively with an Elderly Who Has Dementia

Good communication won’t stop the progression of dementia, but it can make daily life much smoother for both of you. These habits help:

• Use short, simple sentences.
• Ask one question at a time.
• Give extra time to respond and resist the urge to finish their sentences.
• Make eye contact and approach from the front so you don’t startle them.
• Turn off the TV or move to a quieter room before an important conversation.
• Offer simple choices: “Do you want the blue sweater or the red one?” works better than “What do you want to wear?”
• Let small mistakes go. Not every wrong date or name needs correcting.
• Validate feelings, even when the facts are off. “You miss your mother” connects better than “Your mother died years ago.”
• Redirect instead of arguing. A walk, a snack or a favorite song can shift the mood.
• Lean on familiar routines, which reduce the number of decisions your parent has to make.

Dementia can also change relationships within the family. Adult children may find themselves taking on responsibilities their parents once handled, while spouses and siblings may struggle with different expectations about caregiving. Our article, How Does Alzheimer’s and Dementia Affect Family Relationships explores these challenges and how families can support one another.

When Does a Parent with Dementia Need In-Home Care?

A person with dementia should get home care when daily tasks become unsafe or too hard to manage alone, or when family caregivers can no longer keep up. There’s no single right moment. For many families, the answer comes from a pattern of small problems that keep adding up.

Signs your parents may need more help at home include:

• Trouble bathing, dressing or grooming
• Difficulty preparing meals, or a fridge full of expired food
• Missed doses, double doses or confusion about medications
• Frequent falls or near-falls
• Wandering, or getting lost in a familiar place
• Leaving the stove, oven or water running
• Difficulty using the bathroom or managing incontinence
• Poor eating, weight loss or not drinking enough fluids
• Increasing confusion, especially in the late afternoon and evening
• Unpaid bills, piled-up mail or a house that’s falling behind
• Family caregivers who are exhausted, missing work, or getting sick themselves
• Being unsafe when left alone, even for a few hours

Home care can start small and grow over time. Most families move through levels of support something like this:

1. Companion care for social connection, light housekeeping, errands, meal preparation and medication reminders.
2. Personal care for hands-on help with bathing, dressing, toileting and mobility.
3. Overnight care for parents who wander, get up confused at night, or are at risk of falling on the way to the bathroom.
4. Live-in care for consistent support from a caregiver who stays in the home.
5. 24-hour care with rotating shifts so a caregiver is always awake and alert.

Our Alzheimer’s and dementia care can be built at any of these levels and adjusted as your parent’s needs change.

When Is It No Longer Safe for Someone with Dementia to Live Alone?

A person with dementia should stop living alone, or have someone with them more often, when the risks of being alone outweigh their ability to stay safe. That point looks different for everyone.

Warning signs that living alone may no longer be safe:

• Getting lost while walking or driving
• Repeated falls
• Medication mistakes
• Leaving the stove on or forgetting food on a burner
• Wandering outside, especially at night or in cold weather
• Forgetting to eat or drink
• Not knowing how to call for help or respond to an emergency
• Growing difficulty with bathing, dressing, or using the toilet

There is no universal timeline for when someone with dementia should stop living alone. The right decision depends on your parent’s abilities, specific safety concerns, the layout of the home, how nearby family members are, and what other support is available. Some people with early-stage dementia continue living independently for years with regular check-ins and a few hours of in-home care. Others may need someone nearby much sooner.

One question can help clarify the situation: If something went wrong at 2 a.m., would your parents know what to do, and would someone know there was a problem in time to help? If the honest answer is no, that’s a strong sign that it’s time to increase the level of support.

Can You Get Power of Attorney for a Parent with Dementia?

Yes. A parent with dementia may still be able to create a valid power of attorney if they have the legal capacity to understand the document and the decisions involved.

A dementia diagnosis does not automatically mean someone has lost the ability to make legal decisions.

A power of attorney (POA) is a legal document in which your parent, called the principal, names someone they trust, called the agent, to act on their behalf.

There are two main types:

1. Financial power of attorney: Known as a power of attorney for property in Illinois, this allows an agent to handle financial matters, such as paying bills, managing bank accounts, filing taxes, and dealing with property.
2. Health care power of attorney: This authorizes an agent to make health care decisions as permitted by the document and applicable law.

Timing matters.

Your parent must have sufficient legal capacity to understand the document when signing it. Capacity depends on the decision being made and the person’s circumstances, rather than the dementia diagnosis alone. If your parent still understands what the document means, an attorney can help prepare it and confirm that the proper legal requirements are followed. If your parent no longer has the required capacity, a new power of attorney generally cannot be created on their behalf. Court-appointed guardianship may need to be considered instead. This is one reason legal planning should begin early after a dementia diagnosis.

How to Get Power of Attorney for a Parent with Dementia in Illinois

Illinois powers of attorney are governed by the Illinois Power of Attorney Act (755 ILCS 45). The state provides statutory short forms for both types of POA, and many families use these forms as a starting point.

For a power of attorney for property in Illinois, the document must be signed by your parent, witnessed by one person, and notarized. The notary cannot also serve as the witness. Certain people, including your parent’s health care provider and the agent named in the document, cannot serve as the witness.

For a power of attorney for health care in Illinois, the document must be signed by your parent and one adult witness. A notary is not required. Again, the agent and certain health care providers cannot serve as the witness.

If your parent can no longer sign a POA, Illinois families typically petition the circuit court in the county where the parent lives for adult guardianship under the Illinois Probate Act. For Naperville-area families, that generally means DuPage County or Will County, depending on where your parent lives. The court generally requires a medical report about your parent’s condition as part of the petition.

Helpful Illinois resources:

• Illinois Legal Aid Online for plain-language guides and the Illinois statutory POA forms
• Illinois Department on Aging for senior services and caregiver support
• Illinois Guardianship and Advocacy Commission for information on adult guardianship
• An elder law attorney in DuPage or Will County, especially if capacity is in question

How to Make Your Home Safer for a Parent with Dementia

Small changes at home can prevent the falls, burns, and wandering incidents that often lead to an emergency room visit. Walk through your parent’s home and check for the following potential hazards:

• Fall hazards: Remove throw rugs, clear clutter from walkways, and tape down cords.
• Bathroom: Add grab bars, a shower chair, a raised toilet seat and non-slip mats.
• Stairs: Make sure handrails are secure on both sides. Consider a gate if stairs become dangerous.
• Lighting: Brighten hallways and add nightlights between the bedroom and bathroom.
• Medications: Store them in a locked box or a pill dispenser with alarms.
• Kitchen: Install stove knob covers or an automatic shut-off device. Put away sharp knives and cleaning products.
• Doors: Add door chimes or alarms so you know if your parent goes outside.
• Wandering: Consider a GPS device or medical ID bracelet and keep a recent photo on hand.
• Emergency contacts: Post a large-print list by the phone and save numbers in their cell phone.
• Other hazards: Remove or lock up firearms, power tools, car keys (if driving is no longer safe) and anything else that could cause harm.

How to Plan for Your Parent’s Future Dementia Care Needs

Dementia is progressive, which means your parent’s needs will change. A plan that works today may not be enough in a year. Planning ahead lets you make decisions calmly instead of during a crisis.

Think through how your family will handle:

• More supervision as memory and judgment decline
• Help with bathing, dressing, and toileting
• Transportation once driving is no longer safe
• Meal preparation and nutrition
• Medication reminders and management
• Overnight support if your parent wanders or gets up confused
• Respite care so family caregivers can rest
• 24-hour care in later stages
• Possible changes in living arrangements

This is also a good time to look at how care will be paid for. Long-term care insurance, VA benefits and personal savings are common sources. Our long-term care insurance guide and VA home care page explain the options

Who Should Be Part of Your Parent’s Dementia Care Team?

A reliable care team brings together medical professionals, family members, and others who can help with different responsibilities. Here’s what a team should look like:

Team Member	How They Help
Primary care physician	Coordinates overall health, manages other conditions, and makes referrals.
Neurologist or dementia specialist	Confirms the diagnosis and type, guides treatment, and tracks progression.
Family caregivers	Provide daily support, attend appointments, and make decisions together.
Home care professionals	Help with personal care, meals, safety, companionship, and supervision.
Pharmacist	Reviews medications for interactions and side effects that can worsen confusion.
Social worker	Connects families with community resources, support groups, and benefits.
Elder law attorney	Prepares powers of attorney, advance directives, and long-term care plans.
Other professionals	May include physical and occupational therapists, financial planners, clergy, and support groups.

How to Create a Daily Routine for Someone with Dementia

Predictable routines make life easier for someone with dementia. When the day follows a familiar pattern, there are fewer decisions to make and fewer surprises, which often means less anxiety and fewer difficult behaviors.

A good routine includes:

• Consistent wake-up and bedtimes
• Meals at the same times each day
• A regular medication schedule
• Exercise or movement, like a short walk
• Personal care at a familiar time
• Activities your parents enjoy, such as music, puzzles or gardening
• Social time with family, friends or a companion
• Rest periods, especially in the afternoon

Keep the routine flexible enough to adjust on harder days. The aim is a familiar rhythm, not a strict schedule.

What Changes Should You Monitor After a Dementia Diagnosis?

Keeping a simple log gives your parent’s doctor a clearer picture than anyone can recall in a 15-minute appointment. Track the following:

• Memory changes
• Episodes of confusion
• Mood and behavior, including agitation or withdrawal
• Sleep patterns
• Appetite
• Weight changes
• Falls or near-falls
• Wandering
• Medication problems or side effects
• Ability to handle daily activities like bathing, dressing and cooking
• Changes in speech or communication

A notebook works fine, as does a shared note on your phone that siblings can update. Include dates. “Mom fell twice in October” is far more useful than “Mom has been falling.”

10 Questions to Ask the Doctor After a Dementia Diagnosis

Bring this checklist to your next appointment:

• What type of dementia does my parent have?
• What stage is it?
• What symptoms should we expect next?
• What treatments are available?
• Which medications should they take, and are any current ones making things worse?
• What side effects should we watch for?
• What changes should prompt a call to your office?
• How often should we schedule follow-up visits?
• What safety changes should we make at home?
• When should we consider additional caregiving support?

Dementia Care Assistance at Home in Naperville, Glen Ellyn and DuPage County

A dementia diagnosis changes what your family needs to plan for, but it doesn’t necessarily mean your parents have to leave home. Assisting Hands Home Care provides flexible in-home support for families in Naperville, Glen Ellyn, Lisle, Warrenville, Westmont, Wheaton, Woodridge, and surrounding communities. Care can start with a few hours of companionship or help with daily routines and increase as your parent’s needs change, including 24-hour support when necessary.

You don’t have to know exactly how much care your parent needs before reaching out for dementia home care. A care coordinator can visit your parent’s home, see how they’re managing day to day, and talk with you about what support would make life safer and easier. If you’re coordinating care from out of state, you can join the conversation by phone or video. Call Assisting Hands Home Care at (630) 634-9316.