8 important next steps after a dementia diagnosis

I remember when my daughter was diagnosed with Type 1 diabetes at just 10 years old.

At the time, what I knew about diabetes couldn’t have even filled a sticky note.

We were scared. We were shocked. And suddenly, life as we knew it had changed.

But there was something we were given that made an enormous difference:

A plan.

We couldn’t even leave the hospital until we demonstrated that we knew how to care for her. We learned how to calculate a dose of insulin, draw it into a syringe, and give her a shot.

We had appointments with her specialist, a diabetes educator, a nutritionist, and a counselor. We were given information about financial resources and connected with people who could help us learn what came next.

We still had so much to learn.

But we didn’t leave wondering, “Now what?”

We had the beginnings of a roadmap.

Then I think about dementia.

A dementia diagnosis can be just as life-changing.

Suddenly, families may have questions about memory, medications, driving, safety, communication, finances, relationships, and future care.

And yet many families leave a diagnosis appointment with very little understanding of what comes next.

Maybe they were given a prescription.

Maybe they were told to come back in six months.

Maybe they were given a brochure.

And then they go home and think:

“Now what?”

If that is where you are, take a breath.

You don’t have to figure everything out today.

You just need to take the next step.

2. Create a Simple Plan for Living Well

Once you’ve looked at safety, ask:

“What support does this person need to have a good day?”

Think of this as a simple care plan that changes as needs change.

It doesn’t have to be fancy—a notebook, folder, or binder works. The important thing is that it’s easy to update and available to everyone on the care team.

Start by looking at the person’s everyday life.

Daily Personal Care (ADLs)

• Bathing and grooming
• Dressing
• Toileting
• Eating and drinking
• Moving around safely

Everyday Life Skills (IADLs)

• Managing medications
• Cooking and meals
• Shopping
• Managing money and bills
• Transportation
• Housework and laundry
• Using the phone and technology
• Making and keeping appointments

For each area, ask:

What can they do?
Start with strengths. Don’t take over something they can still do.

Where do they need support?
Look for the smallest amount of help that allows them to succeed.

What can no longer be done safely or successfully?
Some tasks may eventually require more direct assistance. That’s okay.

Who can help?
Identify family, friends, neighbors, community resources, or professional support that can meet those needs.

Also record what makes this person who they are—favorite music and foods, routines, hobbies, relationships, traditions, and what brings them comfort.

Then revisit the plan regularly:

What can they still do? What has changed? What support is needed now? Who can help?

The goal isn’t a perfect care plan.

It’s the right plan for today—and the willingness to change it as needs change.

Because living well with dementia isn’t about doing everything independently.

It’s about having the right support to live with purpose, connection, dignity, and moments of success.

3. Build Your Team

You don’t have to do this alone.

Start identifying the people who can help you now and the people you may need later.

Depending on your family’s needs, your team might include family and friends, healthcare providers, social workers, dementia care navigators, therapists, support groups, faith communities, home care providers, adult day programs, and local dementia organizations.

The Alzheimer’s Association offers education, support groups, care consultations, and connections to local resources. Their ALZNavigator™ can also help families create a personalized action plan.

Your local Area Agency on Aging can also help connect families with community services.

Build your team before you desperately need your team.

4. Talk About the Long-Term Plan

This can be difficult—but planning early gives the person living with dementia a voice.

Talk about:

• Where they want to live
• Who they trust to help make decisions
• Healthcare wishes
• Advance directives and powers of attorney
• Driving
• Future living arrangements
• What kind of help they would want

Planning isn’t just about paperwork.

It’s also about learning what matters most to the person and documenting their wishes while they can still meaningfully participate in those conversations.

You don’t have to make every decision today.

The goal is to begin the conversation before a crisis makes the decisions for you.

5. Understand Your Financial Resources

6. Learn to Communicate Differently

Dementia can change how a person understands, processes, and expresses information.

Try:

• Short, simple sentences
• One direction at a time
• Extra time to respond
• Simple choices
• Visual cues
• Avoiding arguments and unnecessary correction

And remember:

Communication is more than words.

Our tone, facial expression, body language, and emotional energy matter too.

When we change our approach to match the person’s abilities, we can make communication easier and reduce frustration for everyone.

7. Look for the Reason Behind Changes in Behavior

When something changes, try not to stop at:

“It’s the dementia.”

Become a Dementia Detective.

Ask:

Physical: Could they be in pain, hungry, thirsty, sick, constipated, or experiencing a medication issue?

Environment: Is it too noisy, hot, cold, dark, cluttered, or unfamiliar?

Emotional: Are they frightened, lonely, bored, frustrated, or overwhelmed?

Caregiver Approach: Are we rushing, correcting, giving too many directions, or approaching in a way that feels startling?

A change in behavior can be a form of communication.

But remember: a sudden or significant change should not automatically be attributed to dementia. Changes can sometimes signal an illness, medication problem, pain, dehydration, delirium, or another medical issue. When something changes suddenly or seems unusual, contact the person’s healthcare provider.

Look for the clue before reacting to the behavior.

8. Keep Learning—and Take Care of Yourself

Dementia is a journey. What works today may not work six months from now.

Keep learning. Stay connected. Find caregiver support. Ask for help before you’re completely overwhelmed.

And remember:

You are part of the care team, too.

Taking care of yourself isn’t selfish. It helps you continue caring for the person you love.

You Don’t Have to Know the Whole Road

When my daughter was diagnosed with diabetes, I didn’t suddenly become an expert.

I learned one thing.

Then another.

We figured out the next appointment, the next meal, the next insulin dose, and the next challenge.

Eventually, what once felt completely overwhelming became something we knew how to manage.

Dementia can feel that way too.

You don’t need to understand every stage.

You don’t need to predict exactly what the future will look like.

You don’t need to have every resource lined up.

Start with the next step.

Make the environment safer.

Figure out what support is needed today.

Build your team.

Talk about the future.

Understand your financial resources.

Learn to communicate differently.

Look for the need behind the behavior.

And keep learning.

Most importantly, remember that the person living with dementia is still the same person you love.

The diagnosis may change how they experience the world.

It does not change their value, their history, or their need to be loved.

And you don’t have to navigate this journey alone.

There is help.

There are resources.

There are people who understand.

Sometimes, you just need to know what to do next.

One of the hardest parts of caring for someone living with dementia is that their actions don’t always make sense. Why won’t they eat? Why are they refusing to shower? Why do they suddenly become upset? Why do they keep asking the same question?

As caregivers, our first instinct is often to stop the behavior or solve the problem as quickly as possible. At Dementia Life, we encourage a different approach.

We encourage you to become a Dementia Detective.

Instead of asking, “How do I stop this behavior?” ask yourself, “What is this behavior – and this person – trying to tell me?”

Behavior is communication. Every behavior has a reason, even if the reason isn’t immediately obvious. Our job isn’t to control the behavior – it’s to look for the clues.

No matter what challenge you’re facing, we begin by asking the same four questions.

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🕵️ STOP: LOOK FOR CLUES

When something isn’t going as planned, pause before reacting and ask yourself:

🩺 Physical
How does their body feel?

🏡 Environment
What around them is helping or hurting?

❤️ Emotional
How are they feeling?

🤝 Caregiver Approach
How am I influencing this moment?

These four clues can help us understand many of the challenges that come with dementia – not just eating and drinking, but bathing, dressing, communication, activities, sleep, and so much more.

Understanding the Four Clues

🩺 Physical

The first place to investigate is the person’s body. Pain, constipation, hunger, thirst, fatigue, medication side effects, illness, dental problems, difficulty swallowing, or simply needing the restroom can all affect behavior. Because dementia makes it harder to recognize, remember, or communicate these needs, a person may not be able to tell us what’s wrong. Looking for physical causes first often uncovers simple problems with simple solutions.

🏡 Environment

Next, look at what is happening around the person. The environment can either support success or create barriers. Noise, lighting, room temperature, strong smells, visual clutter, poor contrast, or even a task that no longer matches the person’s abilities can make everyday activities much harder than we realize. Sometimes the easiest solution isn’t changing the person—it’s changing the environment.

❤️ Emotional

People living with dementia continue to experience a full range of emotions, even when they can no longer express them with words. Anxiety, sadness, boredom, loneliness, embarrassment, frustration, or feeling overwhelmed can all influence behavior. When we recognize those emotions, we can respond with reassurance instead of correction.

🤝 Caregiver Approach

Finally, take a moment to consider yourself. Our tone of voice, body language, facial expressions, pace, and emotional energy all influence the person in front of us. The way we communicate can either increase stress or help someone feel safe and successful. Visual cues, verbal cues, and gentle touch cues are all powerful tools that help guide rather than correct. Often, changing our approach changes the outcome.

Special Note: 🩺 When Should You Call the Doctor?

Not every change in eating or drinking is simply part of dementia. Sometimes it can be a sign that something else is going on.

Reach out to the person’s healthcare provider if you notice:

• A sudden or significant change in appetite or fluid intake.
• New or worsening difficulty chewing or swallowing, including frequent coughing or choking while eating or drinking.
• Signs of dehydration, such as very dark urine, dizziness, extreme fatigue, dry mouth, or confusion that is worse than usual.
• Ongoing vomiting, diarrhea, or an inability to keep fluids down.
• Noticeable weight loss or clothing that is becoming much looser.
• Persistent mouth pain, tooth pain, or sores that may make eating uncomfortable.
• A sudden increase in confusion, unusual sleepiness, fever, or a significant change from their typical behavior.

Difficulty swallowing (dysphagia) is not considered a normal part of aging or dementia and should always be evaluated by a healthcare professional. Early evaluation can help reduce the risk of choking, aspiration, dehydration, and malnutrition.

Behavior is communication – but sometimes it is also the body’s way of telling us that medical attention is needed. Trust your instincts. You know your loved one best, and if something feels different or concerning, it’s always appropriate to reach out to their healthcare provider.

Let’s Apply the Detective Framework to Eating & Hydration

Eating is something most of us enjoy without giving it much thought. For someone living with dementia, however, mealtimes can become surprisingly complicated. The brain has to recognize hunger or thirst, identify the food, remember how to use utensils, coordinate the physical movements of eating, and filter out distractions in the environment. What once happened automatically may now require tremendous effort.

When eating or drinking becomes difficult, it is tempting to focus only on the food. But as Dementia Detectives, we know to look deeper.

If someone suddenly stops eating, ask yourself whether they could be uncomfortable or in pain. Could constipation, dry mouth, medication side effects, or needing the restroom be affecting their appetite?

Next, look at the environment. Is the television on? Is the room noisy? Can they clearly see the food on the plate or the water in the glass? Would a brightly colored plate, cup, or placemat provide better visual contrast? Are the utensils easy for them to manage?

Then consider their emotions. Are they feeling anxious, rushed, overwhelmed, or discouraged because eating has become more difficult? Would slowing down, sitting together, or trying again later create a more positive experience?

Finally, reflect on your own approach. Are you asking repeated questions or correcting them? Or are you offering calm guidance, modeling the first bite, using simple verbal cues, and celebrating each success instead of focusing on what wasn’t accomplished?

Putting It All Together

Imagine your mom suddenly refuses lunch.

At first, you might think she’s simply being stubborn.

But then you remember to STOP: LOOK FOR CLUES.

You realize she hasn’t used the restroom in several hours, so you help her to the bathroom before lunch. You notice the television is blaring in the background and her white plate blends into the light-colored table, so you turn off the TV and serve her meal on a bright blue plate. She still seems a little anxious, so instead of encouraging her to “finish her lunch,” you sit beside her and begin talking about one of her favorite family vacations. Then, rather than saying, “Mom, you need to eat,” you simply smile, pick up your own sandwich, and say, “This looks good. Let’s have lunch together.”

A few minutes later, she quietly takes her first bite.

What changed?

Not your mom.

You changed the conditions around her. You removed barriers, reduced stress, and adapted your approach to set her up for success.

That’s what Dementia Detectives do.

💙 Remember This

Behavior is communication.

The next time something doesn’t make sense, resist the urge to ask, “How do I stop this behavior?”

Instead…

🕵️ STOP: LOOK FOR CLUES.

When we understand the reason behind the behavior, we can respond with compassion instead of frustration. And that’s where the very best dementia care begins.

In spring, flowers do not bloom because we tell them to. They bloom when they are given the right conditions: sunlight, nourishment, time, and care.

The same is true for people living with dementia.

Meaningful engagement does not happen simply because we place an activity in front of someone. True engagement happens when we understand who that person is, who they have always been, and what continues to give their life meaning and purpose.

I believe that every person living with dementia remains a whole person with a rich history, enduring preferences, and a deep need for purpose. Dementia changes the brain, but it does not erase identity.

When we make engagement person-centered, we are no longer asking:

“How can we get this person to comply?”

Instead, we ask:

“Who is this person, and what would bring meaning to this moment?”

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Why Person-Centered Engagement Matters

Person-centered engagement is rooted in one simple but powerful principle:

People living with dementia are more likely to feel calm, connected, and fulfilled when they are engaged in activities that reflect their identity and life story.

In many cases, behaviors we view as “challenging” are actually attempts to communicate an unmet need.

Often, that unmet need is purpose.

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The Deep Human Need for Purpose

Many people living with dementia feel an internal sense that they are supposed to be doing something important.

They may pace.
They may repeatedly ask to “go home.”
They may say they need to “get to work.”
They may become restless or anxious.

These are not random behaviors.

They are often expressions of an inner awareness – what I often call the person’s internal “knower.”

A retired teacher may feel she should be helping others learn.
A father may feel responsible for protecting his family.
A homemaker may feel compelled to keep things orderly.
A mechanic may feel he should be fixing something and using his hands.
A nurse may feel the need to care for others.

The individual may no longer be able to explain what they are feeling, but deep inside, they know they are meant to contribute.

When we provide meaningful roles, we honor this need and help restore a sense of belonging, dignity, and purpose.

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Understanding the Whole Person

To create truly person-centered engagement, we must become curious about the person’s life story.

Important areas to explore include:

Past Roles and Identity

How did they see themselves?

• Mother or father
• Teacher
• Farmer
• Veteran
• Caregiver
• Community leader

Hobbies and Interests

What brought them joy?

• Gardening
• Fishing
• Sewing
• Music
• Sports
• Cooking
• Reading

Culture and Traditions

What customs shaped their life?

• Holiday celebrations
• Family recipes
• Language
• Ethnic traditions
• Community gatherings

Spiritual Beliefs

What gave them comfort and meaning?

• Prayer
• Worship services
• Sacred music
• Scripture readings

Work History

What skills and routines defined their professional life?

• Managing schedules
• Repairing equipment
• Teaching others
• Organizing paperwork

Daily Routines

What was their usual rhythm?

• Early riser or night owl
• Day shift or evening shift
• Re-entering the home after a day’s (or night’s) work

Personality

Were they:

• Outgoing or private?
• Structured or spontaneous?
• Humorous or serious?
• Independent or collaborative?

Preferences

What did they consistently enjoy—or avoid?

Sensory Likes and Dislikes

What sensory experiences brought comfort, and which ones caused distress?

Current Abilities

What can they still do successfully with or without support?

Best Time of Day

When are they most alert, calm, and engaged?

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Creating Meaningful Roles

One of the most powerful ways to support someone living with dementia is to give them a purposeful role.

This role should feel familiar and meaningful – not artificial or childish.

Meaningful roles draw from the person’s lifelong responsibilities, routines, and strengths.

Examples of Meaningful Roles at Home

• Folding laundry
• Sorting mail
• Watering plants
• Setting the table
• Matching socks
• Organizing photos
• Stirring ingredients

Examples in Assisted Living or Memory Care

• Welcoming other residents
• Delivering napkins
• Helping arrange flowers
• Organizing activity supplies
• Reading aloud
• Leading songs or prayers

These tasks may seem simple, but to the individual they can represent something profoundly important:

“I still matter.”
“I still contribute.”
“I still have a purpose.”

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Real-Life Examples

The Homemaker

A woman who spent decades caring for her family became anxious each afternoon. When staff invited her to fold towels and organize linens, she became noticeably calmer.

The Teacher

A retired educator often corrected others and became frustrated. Giving her books to look through and papers to organize allowed her to reconnect with her lifelong identity.

The Farmer

A lifelong farmer paced and asked to go outside. Providing seed catalogs, potted plants to water, and opportunities to spend time outdoors significantly reduced his restlessness.

The Nurse

A former nurse frequently followed other residents in an effort to help them. Instead of discouraging this, staff invited her to assist with comfort rounds and hand out blankets.

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Matching Engagement to Current Abilities

Person-centered engagement is not about asking someone to do what they used to do exactly as before.

It is about adapting activities to match what they can do today.

The goal is the experience, not perfection.

A former accountant may no longer balance books but may enjoy sorting papers.
A gardener may no longer manage a large yard but can water a few plants.
A cook may no longer prepare meals independently but can stir batter or arrange ingredients.

Abilities remain throughout every stage of dementia. Our role is to identify those remaining abilities and create opportunities for meaningful participation.

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Practical Questions to Ask

When planning engagement, consider:

• Who has this person always been?
• What responsibilities gave them meaning?
• What skills remain intact?
• What brings comfort and joy?
• What time of day are they most successful?
• What role can they still fulfill today with adaptation and support?

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A Garden Still in Bloom

Dementia changes many things, but it does not eliminate the human need to feel useful, connected, and valued.

When we learn a person’s story and create opportunities that reflect their identity, we help them continue to bloom – to remain an active part of their world rather than merely existing in ours.

A folded towel.
A watered plant.
A set table.

These moments may appear ordinary, but they carry extraordinary meaning.

Because beneath the cognitive changes, the person is still there.

Still capable of contributing.
Still longing for purpose.
Still deserving of dignity.
Still blooming.

🌱 A Moment That Changed Everything

Engaging individuals with dementia is one of the most meaningful parts of this work.

I’ll never forget my first visit to a memory care community – and the quiet impact it had on me.

Residents were sleeping uncomfortably in wheelchairs.
Slumped at empty tables, expressionless.
Staring at blank walls.

No conversation.
No movement.
No life in the room.

I remember thinking:

“There has to be a better way.”

And there is.

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Take a moment and imagine this:

What if you no longer had the opportunity to do the things you love –
the things that make you you?

To engage in your hobbies.
To do work you find meaningful.
To contribute to your home or care for your space.

What if your days became quiet…
void of purpose, void of activity?

What if you just…existed?

How would you feel?

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As we move into May, we shift from our April Showers focus – reducing stress and supporting care – into something just as important:

How do we bring life into each day for people with dementia?

Because dementia care is not just about keeping someone safe.

It’s about making sure they are not simply existing in their day –
but living in it.

And that’s where activities come in.

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🌼 What Do We Mean by “Activities”?

In caregiving, we often use the word activities – language that’s widely recognized in healthcare.

But what we’re really talking about is something much deeper:

Engagement.

A person who is:

• Engaged in their experience
• Engaged in the world around them
• Engaged with the people around them
• Engaged with their space
• Engaged in contributing… and caring
• Engaged in being themselves

Versus simply existing.
Or surviving the day.

Because when engagement is missing, that emptiness often shows up in very real – and very human – ways.

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🌿 Engagement Is Not the Same as Occupation

It’s easy to confuse engagement with simply keeping someone occupied.

But they are not the same.

Placing someone in front of a television may fill time – but it is not meaningful engagement.
And while it may feel like the easier option in the moment, over time it often leads to:

• More restlessness
• More confusion
• More difficulty in care

Engagement is something very different.

It’s about helping someone experience a day that feels:

• Purposeful
• Familiar
• Comfortable
• Human

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🌼 Why Engagement Matters

Engagement – helping someone have a meaningful and purposeful day – is not an “extra.”

In many ways, it is just as important as bathing, medication, and the clinical tasks we often focus on.

Because we are caring for a whole person – not just physical needs.

1. Engagement helps maintain function
When someone continues to move, participate, and engage – even in small ways – they are more likely to maintain cognitive and physical abilities longer.
And even small preserved abilities make daily life easier for everyone involved.

2. Engagement reduces challenging behaviors
Many behaviors we see – restlessness, agitation, resistance – are often expressions of unmet needs.
When someone is engaged in something familiar and meaningful, we often see:

• Less anxiety
• Less frustration
• Fewer behavioral expressions

Care becomes smoother. More predictable.

3. Engagement supports better rest
Our bodies and minds are meant to have rhythm.
When someone is engaged during the day, they are more likely to rest well at night.
Without that rhythm, we often see increased restlessness – especially in the evening.

4. Engagement supports self-esteem and well-being
Imagine the difference between sitting passively all day… and being part of something.

Even small moments – folding a towel, stirring, listening to a favorite song – can create:

• A sense of accomplishment
• A feeling of contribution
• A sense of well-being

These moments matter more than we sometimes realize.

They protect identity.

When someone participates – even in small ways – they are reminded:

I still matter.
I still belong here.
I am still me.

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🌸 Bringing Life Back Into the Day

This is the heart of what we mean when we talk about activities.

Not filling time.
Not keeping someone busy.

But gently creating a day that holds:

• Rhythm
• Familiarity
• Purpose
• Connection

Because every person – regardless of diagnosis – deserves more than just being cared for.

They deserve to experience their day.

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🌱 Looking Ahead

If this feels overwhelming, you are not alone.

You might be thinking:
“I already have so much to manage.”
Or, “They can’t do the things they used to anymore.”

Both things can be true.

And still – there is a way forward.

Over the next few weeks, we’ll walk through this together:

• How to adapt activities across each stage of dementia
• How to shift from “can’t do” to “can still do”
• How to create simple, meaningful engagement
• How to build gentle structure into the day
• How to support your loved one in still feeling like themselves

At home.
In memory care.
In real, everyday life.

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💬 Final Thought

If all of this feels like one more thing to hold…
start small.

A song.
A simple task.
A shared moment.

That’s where this begins.

Because activities are not an add-on to care.
They are part of what makes us human.

And when we create even the smallest moments of engagement, purpose, and connection –

we’re not just helping someone through the day.

We’re helping bring life back into it.

And you don’t have to figure that out alone.

Over the past few weeks in our April Showers series, we’ve explored some of the most important foundations of dementia care:

• Knowing your person – their history, preferences, routines, and what brings them comfort
• Preparing the environment to reduce confusion and increase success
• Approaching care (especially personal care) with empathy, flexibility, and awareness

Now comes the most important – and often the most overlooked – step:
Putting it all together into a care plan that actually works in real life.

Because knowing these things is powerful… but living them consistently is what truly changes the experience of care.

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What Do We Mean by a “Care Plan”?

A dementia care plan isn’t just a document – it’s a shared understanding of how to support someone in a way that feels safe, respectful, and familiar to them.

It answers questions like:

• How does this person prefer to start their day?
• What tends to trigger stress or resistance?
• What helps them feel calm and successful?
• How do we approach personal care in a way that feels supportive, not overwhelming?

And most importantly:
How do we make sure everyone involved in their care is on the same page?

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🏡 If Your Loved One Is Living at Home

At home, care plans often live in your head… or in scattered notes… or in the routines you’ve built over time. Bringing structure to that can make a huge difference.

1. Write It Down

Even a simple, one-page guide can help:

• Daily routine (wake time, meals, preferred activities)
• Communication preferences (tone, pace, what works/what doesn’t)
• Personal care approaches (what helps during bathing, dressing, toileting)
• Known triggers and calming strategies

This becomes especially important if:

• You have multiple family members helping
• You’re bringing in home care
• There’s a chance of emergency responders needing to step in

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2. Create a Care Calendar

Map out the week:

• Who is helping, and when
• Where support is needed most (mornings? evenings? bathing?)

This helps you:

• See gaps before they become crises
• Prevent burnout
• Be proactive about bringing in support

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3. Build Around Strengths and Familiarity

Instead of asking, “What needs to get done?”
Shift to: “How can we do this in a way that feels familiar and successful?”

That might look like:

• Bathing at a time of day that has historically gone better
• Using language or routines from earlier in life
• Offering choices that feel manageable, not overwhelming

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4. Bring Everyone Into the Plan

One of the biggest challenges at home is not just creating a plan – but making sure everyone follows it consistently.

This includes:

• Siblings and extended family
• Home care caregivers
• Home health or hospice teams

A few ways to make this work:

• Share the care plan openly (printed copy in the home, digital version for easy access)
• Walk through it together – don’t assume others will interpret it the same way
• Explain the “why” behind your approach (this builds understanding, not just compliance)
• Create a simple communication loop (group text, notebook in the home, shared app)

It can also help to gently set expectations:

“This approach really helps reduce stress for her – can we all try to stay consistent with this?”

Consistency across people and shifts is one of the most powerful ways to reduce confusion and distress.

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🏢 If Your Loved One Is in a Memory Care Community

Many families assume that once someone moves into a community, the care plan is “handled.” But your voice is still essential.

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1. Ask to See – and Contribute to – the Care Plan

Communities do create care plans, but they’re strongest when they include:

• Personal history and preferences
• Specific communication techniques that work
• Known triggers and successful interventions

You know your person best – your input matters.

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2. Look for Consistency in Approach

Ask questions like:

• How do staff approach personal care if someone resists?
• How is information about my loved one’s preferences shared between shifts?
• If agency staff is utilized, how are they informed of resident preferences?

You’re not looking for perfection – you’re looking for intentionality and consistency.

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3. Support Staff Buy-In

Most caregivers want to do a good job – but they’re often balancing time, staffing, and competing needs.

You can help strengthen buy-in by:

• Sharing specific, practical insights (“She responds best when you approach from the front and speak slowly”)
• Being extremely generous with praise when you see things going well
• Giving staff a shout-out to their leadership when they use person-centered approaches
• Framing suggestions as partnership rather than correction

For example:

“We’ve noticed she does really well when… would it be possible to try that more consistently?”

When staff feel seen and appreciated, it builds trust – and that trust often leads to more consistent, thoughtful care.

You can also take it a step further:

• Offer to be present during a shower or personal care time to help model what works best for your loved one

This kind of shared experience is incredibly powerful. It moves the care plan from words on paper to something lived and understood.

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4. Hold Accountability Without Fear

It’s okay to advocate for your loved one – and it can be done in a way that feels collaborative and safe.

A few approaches:

• Address concerns early and directly with leadership (nurse, director, or administrator)
• Be specific and observational, not accusatory
  • “I noticed bathing has been more difficult lately – can we revisit the approach?”
• Ask for follow-up and communication so you know changes are being implemented
• Document patterns if needed, especially if concerns continue

You can also:

• Offer to be part of the solution, including being present during care moments to share what works

If something doesn’t feel right, trust that instinct. Advocacy doesn’t have to be adversarial – it can be steady, respectful, and clear.

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5. Stay Involved in Small Ways

Even simple touchpoints can make a difference:

• Sharing updates (“She didn’t sleep well last night”)
• Noticing patterns and communicating them
• Celebrating what’s working

Care is most effective when it’s collaborative.

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6. Advocate for What Matters Most

Sometimes the most meaningful support comes from small adjustments:

• A preferred routine being honored
• A different approach to bathing
• A quieter environment during certain times of day

These aren’t “extra” requests – they’re part of person-centered care.

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🌱 The Heart of It All

At the center of every care plan is a simple truth:

This is still a person with a lifetime of experiences, preferences, and ways of being in the world.

Dementia may change how they express those things – but it doesn’t erase them.

When we take what we’ve learned – about the brain, about behavior, about environment – and apply it thoughtfully, we create something powerful:

• More moments of success
• Less fear and resistance
• More connection

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💬 Final Thoughts

There is no perfect care plan.
There is only a responsive, evolving approach that grows with your person.

Start small. Stay curious. Adjust as needed.

And remember – you don’t have to do this alone.