Before I met my life partner/care partner, Brian LeBlanc, he lived alone. He had recently been diagnosed with Alzheimer’s disease, and the sleep disturbances were already growing more frequent and severe.

He was scared.

It wasn’t just difficulty falling asleep and staying asleep. At times, vivid dreams and hallucinations before going to bed or upon waking would frighten him. Even healthy individuals who may have frequent night terrors can attest to the sheer aggravation of losing sleep to machinations of the unconscious mind.

Sleep Issues Commonly Associated with Alzheimer’s and Dementia

Sleep issues are among the most common Alzheimer’s and dementia behaviors, with up to 50 percent of those diagnosed experiencing sleep disturbances severe enough to affect quality of life. I believe, however, the total number of those affected would actually be much greater than what’s reported. The numerous types of sleep issues grow more severe in advancing stages of dementia, when our loved ones may no longer be able to express what’s ailing them.

While sleep issues aren’t so much a “behavior” as an “effect” of dementia, it’s important to note them because they often become behaviors as the stages progress. Here are some of the most commonly noted issues:

Sundowning

Sundowning is perhaps the most commonly attributed sleep issue associated with Alzheimer’s and other types of dementia. The part of the brain responsible for natural circadian rhythm (getting tired and preparing to sleep around sunset) may no longer work effectively, even in early dementia stages. 

The body is tired. The brain is tired. They want to sleep. But they can’t. So what results? Increased confusion, agitation, anxiety and disorientation. Persons living with dementia who experience sundowning are essentially unable to settle into a comfortable evening routine. While healthy individuals may change into pajamas, relax in a comfy recliner, read a book, watch a little TV and prepare for bed, those with dementia may be too aggravated and wired to allow their bodies to wind down. 

Negative behaviors — from becoming argumentative to physically aggressive — tend to increase in the evening hours with sundowning.

Excessive Day Sleeping

Coinciding with a distressed circadian rhythm, your loved one may spend more time sleeping during the day. When the internal clock is out of whack, sleep can come at the most unusual times (not that there’s anything wrong with a quick afternoon nap). 

But common Alzheimer’s and dementia behaviors like day sleeping can become concerning when your loved one spends most of the day in bed. They may also nap frequently, dozing on and off throughout the day on a chair or couch.

Hallucinations, Vivid Dreams & Night Terrors

All the creepy creatures in the closet and under the bed come out at night. And, no, this isn’t just some child’s bedtime terror. It’s 100 percent real — at least in the minds of persons living with dementia. Individuals with dementia may experience some of the most vivid hallucinations and dreams that would keep anyone up nights. 

Persons living with dementia are prone to visual and auditory misperceptions, especially at night when darkness, shadows and white noise stand out most dramatically. A shadow can easily look like a burglar or monster. A garbage truck down the street could sound like an invading army. Some more detailed hallucinations and terrors include seeing people from the past and even some of the individual’s greatest fears.

I briefly mentioned Brian’s experiences with sleep disturbances associated with Alzheimer’s and dementia. I shudder to think what he experienced before meeting me, because after coming together (and his additional vascular dementia diagnosis) his hallucinations have grown more intense.

Night Wandering

Restlessness sets in, and your loved one just can’t stay in bed. Perhaps they have a condition unrelated to dementia — like restless leg syndrome or acid-reflux disease — that makes lying down very uncomfortable. Even in otherwise healthy people, getting up and walking around may be the only way to soothe the nerves.

Now, add dementia to the mix, when any combination of issues may cause your loved one to be uncomfortable and disoriented with time and space. Wandering could be a concern at any time of day, but especially nighttime when confusion and discomfort are most pronounced. You may notice your loved one simply walks around the house. Perhaps they make repetitive trips to the refrigerator or bathroom, or their evening sojourns may seem aimless. Your loved one may require additional monitoring or assistance in the evening hours to prevent falls or getting lost.

Interrupted Sleep Stages

Eventually your loved one with dementia will fall asleep. But the quality of their sleep may be spotty. That’s because the brain’s wiring that governs sleep stages may no longer function properly. Obviously, the goal is to advance through light and heavy sleep to achieve REM sleep (the dream stage) for a complete, restful and rejuvenating sleep.

Your loved one may skip stages or wake up at inopportune times, causing difficulty completing the full sleep cycle. Without each stage, they may wake tired and even more disoriented or upset the next day. 

Sleep Issues are Common Symptoms of Alzheimer’s and Other Types of Dementia

You may feel helpless to help your loved one’s sleep disturbances associated with Alzheimer’s and other types of dementia. Discuss options with their neurologist, primary care physician and other members of the care-partner team. Prescription sleep medications may be effective — if they do not interact with various other meds your loved one may take. You may need assistance from other care partners to plan and monitor their evening hours.

#WeAreDementiaStrong. If you need help, Caregiver Support and Resources, LLC has over 25 years of experience with all aspects of life-care planning including dementia care. We’re happy to provide referrals and guide the process in a caring and compassionate way.

The hymns are unfamiliar. The scripture is being read from an unfamiliar translation. The pastor’s sermon is long and hard to follow. 

This can be a jarring experience for many people. For those with dementia it can add to a sense of isolation they may already feel. A place of worship — no matter the faith or denomination — should not be a place of isolation. It is a community where people can experience a Heavenly Spirit who cares about them and where they know they are not alone. It is a place where people can be reminded that they were created in God’s image and that they are loved.

Churches, synagogues, mosques, nursing home chapels (or even your own living room, if that’s your style) can team up with persons living with dementia and their care partners to create a welcome environment and prepare a dementia-friendly worship service.  

Some Things to Consider in Building a Dementia-Friendly Worship Service 

Dementia-friendly houses of worship can make needed adjustments to ensure people with dementia are able to participate in worship in ways that are meaningful to them. 

Bring Everyone to the Table 

Don’t guess about what changes can make worship more dementia friendly. General changes will not do as not everyone experiences dementia in the same way. (As Brian and I always say, if you know one person with dementia, you know one person with dementia.) Invite those with dementia, their families and friends, and care partners to meet with those planning worship. Get to know the specific needs of your parishioners and come to solutions together.  

Familiarity is Important

People with dementia often connect with things from their past. A common prayer and familiar hymns (music for dementia is a powerful memory-care tool) can go a long way in nourishing their faith. Consider reading prayers like the Lord’s Prayer or Muslim Call to Prayer with traditional wording. Perhaps there is a canonical translation that is more familiar, like the King James Version, the New International Version or the New Revised Standard Version.

Don’t underestimate the power of music. Music has the ability to reach parts of the brain where other means of communication fail. Consider familiar hymns like “The Old Rugged Cross,” “Amazing Grace” or “To God’s Ear” (for our friends of the Jewish faith). Be sure to ask about favorite hymns and even play some audio of the hymns while you are making a list to jog their memory. 

Keep It Short and Simple 

A service for people with dementia should be short — perhaps 20 to 30 minutes. This helps keep them engaged and helps with issues of concentration. A simple and clear structure works best. The service should include a clear beginning with a welcome, a couple of familiar hymns, prayers, scripture readings and a short message. 

Consider using an order of service and keeping the same structure week to week. Keep prayers short and simple, and be sure to pray for people with dementia and their care partners. You could also consider including this at the beginning of your regular service, after which those with dementia could leave for a time of fellowship, if they wish, and the rest of the service could continue. This would allow those with dementia and the care partners to worship with or without the rest of the congregation or gathering.

Encourage Participation 

Worship that connects to the senses can encourage persons with dementia to more fully participate. Candles, crosses, Communion elements, Holy books, and the baptismal font are all powerful visuals in a church so make them prominent. Allow their creative side to shine through music and painting. 

Ask them to write or deliver a prayer, or even share their story with the congregation. Include them in your greeting team or as help in your after-service fellowship gathering. Be open to the gifts that people with dementia have to give.

Create a Care Team 

A pastoral care team would be a great asset to people with dementia and their care partners. Invite a small group to be trained in assisting those with dementia. Be sure they are easily identified with a name tag or t-shirt. Care team members can assist those with dementia and their caregivers if help is needed. 

It may be helpful to have a quiet place where someone with dementia can go if they feel overwhelmed — perhaps just into a separate room to “cool down” or in a fellowship hall for a cup of coffee. Pastoral care teams members could assist in this. 

Learn From Others 

There’s a lot to learn in creating dementia-friendly worship. Connect with worship groups who already minister to people with dementia and their care partners. Speak with health care professionals and others who work with them. Have them attend your services and give constructive feedback. You may not be perfect at first at ministering to people with dementia, but it’s good to start somewhere. 

Are You Ready to Host a Dementia-Friendly Worship Service?

Dementia-friendly worship just only takes some thought and consideration. A loved one of any faith, regardless of their current stage of dementia, still has a longing to be close with their Lord. Their communion with a Higher Power may be brief and on their own terms, but it’s meaningful nonetheless.

#WeAreDementiaStrong. If you need help, Caregiver Support and Resources, LLC, has over 25 years of experience with all aspects of dementia care. We’re happy to provide referrals and guide the process in a caring and compassionate way.

It’s 11:30 at night. You wake to get a glass of water. As you walk down the hallway, you sneak a peek into your sister’s bedroom. Quick, little checks when you get the chance have set your mind at ease since her Alzheimer’s diagnosis a few years back.  

She’s gone. She’s become prone to wandering — among the most common Alzheimer’s and dementia behaviors — in recent months. But she’s never gone missing. You run to the kitchen and spot a half-eaten PB&J sandwich on the counter and the door to the garage swung wide open.  

You panic. Where could she possibly be? Then, thankfully, you spot your sister down by the road. She appears to be checking the mail. You find your slippers to go get her. 

Down by the road, barefoot in a nightgown, your sister opens the mailbox and looks inside. She closes it, walks away a few feet and returns to look inside once more. “Sweetie, what are you doing out here? It’s freezing,” you say. She looks up, surprised to see you, and notes her surroundings. Confused and a little embarrassed, she says, “I was just checking to see if the mail came yet.”

You don’t try to argue. You just tell her you already got it. At least she’s OK.

Reasons for Alzheimer’s and Dementia Behaviors Like Wandering 

Wandering can be one of the most dangerous Alzheimer’s and dementia behaviors. The fictional example above ended on a positive note. But for many persons living with dementia and their care partners, wandering can lead to very scary outcomes. Nearly half of those with this tendency end up seriously injured or worse in a fall or by exposure to extreme heat or cold.  

Perhaps you, too, recall searching for hours or — even days — for a loved one. If not, you’ve certainly heard such harrowing stories in the news. Many people with all types of dementia diagnoses and their varying stages may wander only around the home or become overwhelmed in public spaces. But the reality is that any individual with dementia — diagnosed or not — with any type of mobility (walking, wheelchairs, scooters or motor vehicles) is at risk for getting lost or hurt.  

Here’s why it may happen:

1. Routines (Former Jobs, Chores & Responsibilities)

Routines become ingrained in us. Many of us go to the same workplaces, grocery stores, places of worship and recreational areas for many decades. We complete certain household chores on a rotation or certain days — mowing the lawn, washing dishes, vacuuming, etc., so many times the list may run on autopilot.

While memories of these routines may fade for people living with dementia, feeling the need to do a task or run on a schedule remains. In early to mid-stages, your loved one may drive away thinking they need to go to work or the store. Later, they may move around the house without an apparent goal. But they’re likely just searching for the next task or a meaningful object, even if they don’t know what.

2. Spatial and Visual Disorientation

Alzheimer’s and other forms of dementia also diminish eyesight as well as depth and dimensional perception. Especially in mid-to-late stages, generally poor eyesight may make it difficult to navigate at home and in public places. It can also be difficult to read signs for direction.  

Similarly, changes in depth and dimensional perception often cause your loved one to make a wrong turn or avoid an area that looks impassable (dark areas or unique design patterns on carpets or walls can look like obstacles).  

3. Strong Physical & Emotional Needs

Anyone can feel strong emotions. But those of us not living with dementia typically can address them safely. Someone with dementia may feel anxiety, fear and overstimulation — even within their own home. They may not recognize a room within the house, or the house itself. Those who can communicate well verbally often wonder, “When are we going home?” So your loved one may search for home. 

If your loved one has difficulty communicating or expressing discomfort, they may seek a place to soothe the nerves. They may not know where they want to be, but walking around to find “anywhere but here” may feel right.  

4. Difficulty Navigating Familiar Areas

Those in early and middle stages of dementia often enjoy a lot of independence. Long walks? Quick drives to the store or to visit a friend? Why not? But all of the sudden, that path around the lake doesn’t look familiar. That wasn’t the right highway exit.

Wandering isn’t always aimless. A lost loved one may become more lost while trying to backtrack and find their way. (Helpful hint: individuals with dementia often move the same direction as their dominant hand.)   

5. Sundowning and Sleeping Difficulties

Dementia often disrupts the part of the brain responsible for governing sleep through the natural circadian rhythm. As evening sets in, “sundowning” affects many individuals with Alzheimer’s disease and/or other types of dementia may become extra agitated, confused or restless.  

When it would normally be time to wind down or be asleep, they may be prone to walking around to ease restlessness or meet some emotional/physical need. But not remembering or being able to express what they need, your loved one may just walk around the house. Nighttime hours when care partners may be sleeping can be particularly dangerous if a loved one in advancing stages needs frequent or 24/7 supervision.  

6. Finding Home

I alluded to this above, but it bears repeating. Finding home is a strong and common urge for persons with dementia. They may already be home — or whatever has become their home. So they search, and search, and search some more. 

After all, home is where the heart is. Their brain just isn’t registering where home might be.  

Plan for Wandering as a Common Alzheimer’s and Dementia Behavior 

As Brian and I always say, dementia is so much more than memory loss. Wandering is a common Alzheimer’s and dementia behavior that affects at least 60 percent of persons with dementia.

In assisted-living facilities, you may see residents moving up and down the halls or in and out of rooms. Staff and care partners without training in person-directed care and person-centered language may label such individuals as “wanderers.” But perhaps they’ve simply always enjoyed walking. Or maybe they worked in a similar facility earlier in life. They’re simply living life according to their own routine. Others in a variety of living situations wander to address a range of needs that may or may not be obvious.

#WeAreDementiaStrong. If you need help, Caregiver Support and Resources, LLC has over 25 years of experience with all aspects of life-care planning including dementia care. We’re happy to provide referrals and guide the process in a caring and compassionate way.

Your next door neighbor, a very dear friend of many years, stops by your front porch for a visit. She notices you sitting in the shade with a glass of sweet tea and makes her way over. 

Terrific, you could use the company! You and your husbands have been retired a few years now, and it’s nice to kick back, get out of the midday heat and enjoy the quiet.

But you’re growing concerned with your neighbor’s conversations. She’s gotten so repetitive. “Where are you two headed for dinner?” she asks. You tell her a favored spot you and invite her and her husband along. A few minutes later: “Where are you two headed for dinner?”

You’ve long chalked it up to simple forgetfulness, but your good friend could be experiencing a very common early Alzheimer’s and dementia behavior: repetition. 

Repetition in Persons Living with Alzheimer’s and Dementia

The concerned neighbor in our fictional friendship above could be anyone close to a loved one with Alzheimer’s disease or dementia. Those closest to an individual — a spouse, sibling, other close relative or friend — will be keenly aware of the repetition from the outset. You’ll notice your loved one repeating questions and phrases, innocently enough at first. 

As they progress through the stages of dementia, the repetition often becomes more notable. And the reasons for their repetitive behavior tend to gather more meaning beyond memory loss alone.  

Short-Term Memory Loss

But we must begin with the most obvious. Repeating phrases and questions, especially in early stages, often stems from short-term memory loss. It’s the first to go in most types of dementia. Your loved one will have difficulty recalling what they or others have already said or done.

Regrettably, most care partners readily admit to becoming annoyed with answering the same question or hearing the same treasured story multiple times. It’s helpful to remember, you have the luxury of remembering. They don’t.

Battling the Fog

Brian, my life partner/care partner who lives with Alzheimer’s and vascular dementia, often describes what he calls the “fog” or “blackness.” While in this state, which in his case comes and goes without warning, cognitive function can be severely diminished. That means he has difficulty comprehending and retaining information as well as producing relevant responses to dialog and situations.  

So for Brian and millions of others like him, it’s difficult to keep up with conversation on foggy days. But, of course, they always want to be included. Persons living with dementia often lean on a few key phrases — like “Boy, it has sure been rainy” or “I should head to the store” — as fillers. Was it rainy? Does she need to pick up groceries? Maybe yes. Maybe no. But they’re fulfilling a need to say something.

Confusion, Anxiety & Frustration

Your loved one may repeat certain tasks, like household chores. They may fold and refold laundry or wash and rewash dishes. Perhaps they’re accustomed to being busy, feeling an itch to complete a familiar task. It may be confusion, especially in mid-stages when they’re still relatively aware and functional. They feel as if something along their daily checklist wasn’t done — even while looking at a stack of towels they neatly folded just a few minutes ago.

Anxiety and frustration also play roles in repetition. Your loved one may repeat things to keep busy while feeling uneasy about their current situation or mental state. As we all know, activity can calm a frazzled mind.

Asking For Help

We all need help and assurance from time to time. Thing is, most people without Alzheimer’s and dementia can easily ask for it. Your loved one may repeatedly ask, “When are we going home?”, even if they’re already home. They may repeat a word or easy phrases — like “My, oh my” or “Good gracious.” 

These statements seem disconnected from reality or logic. There may be nothing happening that would merit them. But, in their mind, they may feel overwhelmed, uncertain or disoriented. Furthermore, they likely can’t address those feelings or find the right words to ask for help. 

Common Alzheimer’s and Dementia Behaviors: Repetition Often Has a Meaning

We know, dealing with repetition day in and day out can be aggravating, even for the most caring and passionate care partners among us. But we can respond more compassionately if we pay attention to the powerful emotions and needs behind a loved one repeating questions, phrases and activities. (Rule of thumb: just answer the question, even if you’ve already answered it 24 times already.)

#WeAreDementiaStrong. If you need help, Caregiver Support and Resources, LLC has over 25 years of experience with all aspects of life-care planning including dementia care. We are happy to provide referrals and guide the process in a caring and compassionate way.

It’s just after dinner. The sun is going down, and your father rests in his favorite recliner as you pick up the dinner table. He calls out from the living room, “When are we having dinner?” You glance up at the clock. 

“But we already had dinner, Pop,” you call back calmly. “You finished most of your chicken this time.”

You hear a groan, and the recliner clicks in. He shuffles out to the kitchen. “What are you talking about?” he asks crossly. “I haven’t eaten since breakfast.”

You gesture to the table, where more than half of the dishes and a few scraps of Mom’s chicken marsala remain. “See, Dad?” you plead. “There’s your plate. Wasn’t it good?”

He shoves his plate. His silverware clanks loudly against the wall. He stands hunched over the head of the table, teeth clenched, fists balled against the placemat. “You’re just saying that so I go to bed early!”

It’s going to be another rough night.

The Care Partner’s Struggle: Alzheimer’s and Dementia Behaviors

You may recognize our hypothetical scenario. Perhaps you and your mother have actually looked at each other in despair at another outburst your father can’t control. Maybe your own spouse, brother, aunt or niece struggles with common Alzheimer’s and dementia behaviors like confusion, emotional outbursts, hallucinations, disorientation and so many more.

Alzheimer’s disease and other forms of dementia each have their own styles that affect people in different stages, well, differently. But, in general, there are certain behaviors and characteristics that affect many individuals.  

Here are some of the most common: 

1. Repetition

You’re likely familiar with repetition. You’ll hear the same story countless times — sometimes with different endings. You’ll hear the same questions time and again. 

While dementia is so much more than memory loss, this is often a memory thing. Especially in the early stages of dementia, short-term memory is among the first things to go. Your loved one likely doesn’t remember from one moment to the next what has and hasn’t already been said in the conversation or done in their daily routine.

They may repeat certain phrases and activities — like “When are we going home?” when they’re already home or refolding clothes that have already been folded. Repetition can also signal anxiety, uncertainty or boredom with current places and situations.

2. Wandering

Persons living with dementia may appear to wander aimlessly around the home or wherever they may be. But make no mistake, wandering is not aimless to them. Especially in later stages, they’re just trying to get where they feel they need to go. 

Those feeling disoriented, not recognizing their current surroundings, may be “searching” for home. They may feel uncomfortable or anxious, trying to find a place that feels calm and safe, even if it’s just the other side of the room for a brief moment. They may be looking for something meaningful to them — a keepsake, special picture or someone they love — although they may not remember what that something is. 

3. Sleep Changes 

You may notice your loved one no longer sleeps through the night or spends increasing amounts of time napping during the day. Humans function with a natural circadian rhythm, which compels us to sleep and wake at “normal hours.” In most healthy individuals, such brain activity is influenced by external stimuli — namely perceptions of light and dark that accompany the rise and set of the Sun. Those living with dementia, which systematically destroys brain cells (including those governing circadian rhythm), may gradually lose this vital function. 

They may also experience sleep disturbances. A brain at rest is anything but “at rest.” It cycles through stages, from light sleep through deep and dream (REM) sleep. Damaged brain cells misfire and upset those stages, causing restlessness, sleep interruptions and night terrors. 

4. Sundowning

Relatedly, “sundowning” may cause increased agitation, confusion and restlessness as evening sets in. Dementia regressions affecting a person’s internal clock can be upsetting for reasons your loved one likely can’t understand or verbalize. They may feel they should be getting sleepy or that they actually are tired, but are too uneasy to comfortably settle into a “normal” evening routine. 

Sundowning may also result from mental exhaustion. Remember: your loved one has just completed another day navigating life in a perpetual state of confusion. Wouldn’t you be cranky?   

5. Losing Appetite

Appetite loss is common with dementia. Sometimes it may not be true appetite loss, but rather simply forgetting to eat. But quite often, as with many secondary conditions and symptoms of dementia, the brain’s wiring that tells us to eat is disrupted.

Your loved one may lose interest in food and drink altogether. Expect weight loss and weakness as later stages set in. Stopping eating is often a significant factor in what makes dementia a terminal illness.

6. Collecting & Hiding Objects

Individuals with dementia may hide away common objects like silverware — or even food. This could at first seem relatively harmless. It’s easy enough to play off a drawer full of forks or pens as harmless, or as a confused manifestation of a lifelong collection hobby (like Mom’s stamp collection or Dad’s display of sports autographs).

But in advanced stages, this common dementia behavior could be unsafe and unhealthy (think fire hazards and rotten food). It may become severe as hoarding. Hiding objects can arise from a strong desire to control losses of memory and cognition. It may also stem from a delusion that someone is stealing from them or a self-preservation instinct to ensure there will be enough food and drink later.  

7. Manipulation

Your loved one may distort reality to get the things they want or need. You might go so far as to call it manipulation. Whether they know they’re being manipulative is subjective — depending on their type(s) of dementia, level of awareness and personal characteristics.

Those with more awareness may use confusion to feign unawareness: “You never told me that.” Or as a bargaining chip: “You told me I could drive to the store if I took my medicine.” It’s hard to reconcile your loved one’s desires with what’s rational and safe. 

8. Poor Judgment

Similarly, poor reasoning and judgment is a common cognitive regression associated with Alzheimer’s and dementia. Through no fault of their own, persons living with dementia may have a diminished ability to think through things that are important or dangerous. 

Much more than memory alone, cognition dictates our ability to reason. It drives decision-making from whether a financial choice is prudent to whether it’s safe to pull out onto a busy street. 

9. Communication Difficulties

Imagine always losing your train of thought. Or struggling to remember what something is called. Or worse yet, temporarily (or permanently) losing the ability to communicate verbally.

Persons living with dementia may have difficulty communicating, in one way or many. But they can most certainly express emotions and meaning through nonverbal cues like facial expressions, eye movements, gesturing, grunting and humming.  

10. Anxiety, Aggression & Anger

Common Alzheimer’s and dementia behaviors like anger and aggression — like in our fictional dinner example earlier — can stem from any number of feelings and experiences noted in this blog. Your loved one may feel anxious and disoriented in their own home. They may be frustrated over not being able to communicate (above). They may feel paranoid from hallucinations and delusions (below).

In some cases, aggression may turn violent, often lashing out physically or verbally at family and friends they can’t recognize or trust. The loss of control and meaning in their world is understandably upsetting.

11. Hallucinations, Delusions & Suspicions

Misfiring neurons can cause our loved ones to sense things that aren’t there: mysterious figures in dark corners, creepy-crawly critters, phantom sounds, etc. It’s scary, suspicious, enough to make anyone uneasy. (Helpful hint: Arguing that something isn’t there doesn’t help to quell the dementia-related delusions that are very real to your loved one. Acknowledge their feelings, and change the environment. Sometimes switching on a light or changing rooms can calm the nerves.) 

A Great Life-Care Plan Should Address Common Alzheimer’s and Dementia Behaviors

You may not know what lies in store for your loved one after a dementia diagnosis. They may progress slowly or rapidly through stages. They may experience different symptoms in different ways. But you do know there are common Alzheimer’s and dementia behaviors that can be addressed in due time with a strong plan.

#WeAreDementiaStrong. If you need help, Caregiver Support and Resources, LLC has over 25 years of experience with all aspects of life-care planning including dementia care. We’re happy to guide the process in a caring and compassionate way.

There are tons of books, blogs, podcasts and vlogs out there about the stages of dementia. But even some of the most reputable sources sometimes paint a fuzzy picture about what to expect when you or a loved one are diagnosed with Alzheimer’s or other forms of dementia.

Most content lacks perspective. And that’s no one’s fault. 

As Brian LeBlanc (my life partner/care partner) and I always say: “If you know one person with dementia, you know one person with dementia.” Brian and I have loads of experience. He lives with Alzheimer’s disease and vascular dementia. Walking the dementia path together has challenged us in every sense. But from our perspectives as national advocates for dementia awareness and mine as a board-certified patient advocate, actually walking the walk illuminates many truths.

Here are the 7 Stages of Dementia and What You Might Expect

Dementia and its common calling cards are difficult to nail down. There are more than 400 recognized types of dementia (you often hear of Alzheimer’s, vascular dementia or Lewy body dementia as some of the most common). Each has its varying and progressive stages. Effects of dementia may be generally similar, but the seven stages of dementia may present to each individual differently.  

First Stage (No Cognitive Symptoms)

The first stage of dementia is virtually undetectable, at least by outward appearances. Your loved one may be sharp as ever. The only real warning signs may come in brain scans and other tests — likely unrelated to any mental condition — revealing an abnormality. If so, the individual will be tabbed for further observation and testing.

Second Stage (Slight Cognitive Decline)

A misplaced name here. Losing the car keys there. “What did I come in here for?” The slight cognitive decline associated with dementia could easily be attributed to those dreaded “senior moments.” 

You’re not wrong. Yes, we all know that aging often comes with natural declines in memory, reasoning and judgment. They may mirror early stages of dementia. Feeling like symptoms may be more severe than the typical forgetfulness that comes with aging? Visit your primary care physician.

Third Stage (Mild Cognitive Decline)

What constitutes slight versus mild? Just how far up the scale do regressions in memory and cognitive function have to go to throw up red flags for dementia?    

Well, in this stage, the declines may be more pronounced to the individual and those closest to them. They likely still function at a high level — even professionally — but they may forget names, dates and events. Short-term memory losses are typically the first to go with most forms of dementia.   You may be concerned for a diagnosis like early-onset dementia, which may very well occur with some early testing.

Fourth Stage (Moderate Cognitive Decline)

Regressions in memory and cognitive function will be impossible to ignore. Your loved one by now has likely forgotten names. Disorientation with time and place becomes common. 

It may be unwise — or even dangerous — for an individual in this stage to drive a car. Individuals now have difficulty remembering things like directions, recipes, or chapters read in a book (you may notice your loved one rarely progresses through an entire book). They may no longer be able to focus on balancing a checkbook or making other important financial decisions.

Hallucinations and delusions begin most often in this mid-stage, although some may experience them sooner. It’s not uncommon for a person living with dementia to report sensing people, animals, shapes and other things that aren’t there. These are often misperceptions: misfiring neurons seeing a long-dead pet or hearing a rainstorm in passing traffic. Hallucinations and delusions can cause fear and anxiety (click here for some coping strategies).

By this point, a good life-care plan should mobilize a care-partner team of family, friends and professionals to tackle a variety of tasks to help your loved one on a permanent basis.

Fifth Stage (Moderately Severe Cognitive Decline)

Everyday tasks like eating, bathing and dressing require assistance. Functions that ran on autopilot for many decades need to be planned and regimented. It’s a matter of focus. 

Memory loss in this stage can be severe. Individuals living with dementia may be “mentally present” in an entirely different decade. They may believe loved ones from their younger years — perhaps their parents, grandparents, aunts and uncles — are still alive. Mistaking current youngsters for their own children, brothers, sisters and cousins happens frequently.

But late-stage dementia is so much more than just memory loss.  

Sixth Stage (Severe Cognitive Decline)

Memories in this stage are all but gone. Your loved one may remember some things from early in life and recognize certain people, but expressing such thoughts and feelings is likely impossible. But make no mistake, people living in late stages of dementia can still communicate. They may use gestures, eye movements, facial expressions, grunts and humming to convey meaning.  

By this point, they probably require assistance with toileting and other tasks associated with 24/7 attendance. Increased hallucinations and delusions, combined with perpetual confusion, can cause extreme anxiety and agitation. Their life-care plan should include physical and emotional therapy (music and art therapy is an incredibly powerful dementia-treatment tool), as well as desired medications to quell the most severe symptoms.

Seventh Stage (Cognitive Failure)

Alzheimer’s and all other forms of dementia have one thing in common: they’re terminal. In this final stage, they’ve lost control of most human functions. They’re likely nonverbal and require ’round-the-clock assistance to even stand and walk.

Individuals with dementia often reach a point where they can no longer swallow without assistance. Meals may need to be pureed, and fluids may need to be nectar or honey thick to prevent choking. Many persons living with dementia enter hospice care for comfort at end of life.

Understanding the 7 Stages of Dementia

Some publications go so far as to give average time spans for each stage. We believe this is irresponsible. Even with individuals living with the same type of dementia, one may spend many years in the early-to-mid stages while another may progress more rapidly toward end stages. But it’s important to understand, in a general sense, what each stage may bring to plan accordingly.

Life-care planning is especially important for individuals and families living with dementia. #WeAreDementiaStrong. If you need help, Caregiver Support and Resources, LLC has over 25 years of experience with all aspects of life-care planning including dementia care. We’re happy to guide the process in a caring and compassionate way.