STAGES OF ALZHEIMER’S DISEASE

Alzheimer’s disease progresses in a way that can be compared to climbing a mountain. Just as a mountain climb sometimes requires going sideways and back down the mountain, in order to maneuver to the top of the peak, the way Alzheimer’s disease impacts a person also will zig-zag. There will be days where the person seems to be completely aware and not impacted by the disease, mixed in with days where they are displaying signs of the disease.

Even in the later stages of the disease, there can be moments when they share a profound memory. Researchers and doctors began trying to define the disease in “stages” to assist caregivers to better know how to care for the person and what to know where they are on the journey of this progressive disease.

Much of this disease is still a mystery. Stages have been identified and as the disease progresses differently with each person, it is important to know that the stages are simply a road map for this journey which will involve some detours up and down the hills of the stages based on each person’s disease progression.

Early Stages:

  • Loss of short-term memory

  • Hard to find a word (Aphasia)

  • Seeks familiar people and places

  • Challenges with writing and using objects

  • Apathy and depression

  • Needs reminders with some high-level Activities of Daily Living (ADLs)

Middle Stages:

  • Greater loss of short-term memory

  • More difficulty finding words

  • May get lost at times and not know where they are

  • Repetitive actions with trouble using objects

  • Possible depression and agitation

  • Needs reminders to help with most Activities of Daily Living (ADLs)

Late Stages:

  • Mixes up past and present

  • Often unable to understand or use words

  • Misidentifies people and places

  • Tremors, rigidity (fall risk)

  • Increased risk of behavioral disturbances

  • Needs reminders of all ADLs

Final Stage:

  • No apparent link to past or present

  • Mute or a few incoherent words

  • Seemingly oblivious to surroundings

  • Little spontaneous movement

  • Seizures

  • Swallowing difficulty

  • Completely passive

  • Requires total care

Over the years, many different assessment scales have been used by physicians in an attempt to identify the stages of Alzheimer’s disease more precisely. Assessment scales are used by some physicians to be able to better communicate care needs to family members and caregivers.

The Functional Assessment Staging (FAST) scale, developed by Dr. Reisberg and colleagues, divides the progression of Alzheimer’s disease stages into 16 successive functional stages and assesses the loss of functional abilities within each stage, from Stage 1 (no impairment) to the final stage, which includes loss of speech, locomotion, and consciousness.

Functional abilities include:

  • Dressing

  • Toileting

  • Eating

  • Walking

Alzheimer’s stages at which ability is lost

  • Hold a Job: Earliest Stage

  • Handle Simple Finances: Early to Mild Stage

  • Select Proper Clothing: Moderate Stage

  • Put on Clothes Unaided: Moderately to Severe

  • Shower Unaided: Moderately to Severe

  • Toilet Unaided: Moderately to Severe

  • Control Urine Unaided: Moderately to Severe

  • Speak 5 to 6 words: Severe

  • Walking: Severe

  • Sit up: Severe

  • Smile: Severe

  • Hold up Head: Severe

Watch Video on the Stages of Dementia:

RISKS: WANDERING

Because this disease can cause confusion with places, time and people, the risk of someone with the disease doing what is called “wandering” is very high. Wandering means leaving a location to go to another location that the person thinks exists and is available to reach at the time they are going there, but in fact, their memory may be in

the past and this causes them to wander and become lost. This is why it is important for someone with the disease to have someone with them at all times.

Memories from a long time ago may be most active for the person with Alzheimer’s disease.

Many times people may try to walk or drive to their former place of employment, for instance, or take a walk to a friend's house that is not actually in their neighborhood or within walking distance.

Safety Systems for Wandering

Establish a consistent routine and be sure to follow it daily in order for the senior with Alzheimer’s disease to be better able to progress through the stages with a feeling of comfort. This allows seniors in the early stages of the disease to more easily remember what will happen as they move through the day and rely on their muscle memory. Many times the first signs of the disease are displayed when a senior is traveling and out of their familiar environment and routine. Having a routine will help the caregiver to also be able to better combat any behavior outbursts by focusing the senior back onto their current daily activity.

Identify any wandering risk factors and do not allow the senior to go to the bathroom, for instance, during a doctor’s visit or outing where they are out of your view. Always stay with the senior and have a backup plan if they may become confused and want to leave the home on their own.

Door and window posters: sometimes posters of a bookcase are used to cover doors and windows so that a senior who may be a wandering risk will not try to exit the home or become agitated.

Watch Video on Wandering:

RISKS: HOARDING

A person with behavioral variant frontotemporal dementia (FTD) may be drawn to hoarding.

This can be frustrating for the family if items are disappearing from their normal locations because they are being taken by the person with dementia.

Hoarding can be an attempt for a person with dementia to control their situation. What is happening in their brain is so frustrating, that they want to control something, which could be physical items. The person may also feel paranoid or have delusions and believe their things will get stolen, so they may try to hide or protect them.

Suggestions to help with hoarding:

  • Suggest a hoarding box or drawer where the person can put objects they want to keep safe.

  • Try to work out where the person seems to hide things, then show the person you’re helping them to find them.

  • If the person becomes anxious about lost items, try to reassure them and help them feel better.

  • Don’t leave important documents or items where they can be easily picked up.

  • Keep a spare set of things that are often lost, such as keys or glasses.

  • If the person hides food or other perishable things, check their “hiding places” regularly, and throw out things that have gone bad.

  • Put child safety locks on cabinets or locking cabinets if food is being taken.

  • Video cameras have come down in price and can be used to monitor places where items are normally taken. There may be a pattern of time of day or other triggers that can be discovered to help with the hoarding.

RISKS: PARANOIA AND HALLUCINATIONS

Hallucinations and Delusions

Hallucinations involve hearing, seeing, smelling, or feeling things that are not really there. For example, the person may “see” the family dog which died years earlier.

Delusions are false beliefs that the person thinks are real. For example, the person may think you are their grandchild instead of the caregiver.

Suggestions to help with hallucinations and delusions:

  • Sometimes an illness or medicine may cause hallucinations or delusions. Suggest on the care notes that the problem is discussed with their physician.

  • Try not to argue with the person. Instead, comfort the person if he or she is afraid. Remember, this is how the person really feels, regardless if you think they should feel this way, they DO. Be kind and supportive.

  • Distract the person. Sometimes moving to another room or going outside for a walk helps.

  • Turn off the TV when violent or upsetting programs are on. Someone with Alzheimer’s may think these events are happening in the room.

  • Safety First—make sure the person can’t reach anything that could be used to hurt anyone or himself or herself.

Paranoia

Paranoia is a type of delusion. They may believe, falsely, that others are mean, lying, unfair, or “out to get” them. The person may become suspicious, fearful, or jealous of people.

Paranoia can become worse as memory loss gets worse.

  • If the person forgets where he or she put something, they may become upset. The person may believe that someone is taking his or her things.

  • The person may not know you are the person’s caregiver. Someone with Alzheimer’s might not trust you if he or she thinks you are a stranger.

  • He or she may believe that strangers will be harmful.

  • The person may think you are trying to trick him or her when you tell them something.

Paranoia may be the person’s way of expressing loss. The person may blame or accuse others because no other explanation seems to make sense.

Suggestions to help with paranoia:

  • Try not to react if the person blames you for something.

  • Don’t argue with the person.

  • Let the person know that he or she is safe.

  • Use gentle touching or hugging to show you care.

  • Explain to others that the person is acting this way because he or she has Alzheimer’s disease.

  • Search for things to distract the person, then talk about what you found. For example, talk about a photograph or keepsake.

Also remember: They may not be paranoid. There are people who take advantage of weak and elderly people.

Find out if someone is trying to abuse or steal from the person with Alzheimer’s.

Watch Video on Delusions:

Tips from Dr. Natali from Careblazers:

Keep it simple.

Respond to the emotion, NOT THE WORDS.

For example, let’s say the person is afraid someone is breaking into the home. Instead of saying, “No one is breaking in,” say “I’m so sorry you feel scared. I am going to protect you, so nothing happens to you.”

Imagine you are in their world and seeing, hearing and feeling the same things. Pretend along with them and respond the way you would want someone to respond to you. Remember, for them this is real, it is not made up. You cannot rationalize with them and make them understand.

Remember the saying—if you can’t beat ‘em, join ‘em. Meet them where they are at that moment.

RISKS: SUNDOWNING

Sundowning or LATE DAY CONFUSION

Sundowning is a symptom of Alzheimer’s disease and other dementia and is also commonly called Late Day Confusion.

The term “Sundowning” developed as terminology in memory loss because often the confusion begins to show in the evening or when the sun is setting. This seems to happen as memory loss symptoms begin and also continues to happen ongoing as the disease progresses.

The term Sundowning now refers to confusion that happens at a specific time of day.

Watch Video explaining Sundowning:

Sundowning can continue into the night. Sometimes people with Alzheimer’s disease have trouble falling asleep.

Sometimes they get up from bed at night and they may think it is time to go to work or time or time to eat breakfast.

When Sundowning becomes a regular occurrence, around-the-clock caregivers must be present for safety.

What Causes Sundowning?

Like other issues with Alzheimer’s disease, the causes are not really known.

We know that the brain changes with Alzheimer’s disease. The thought is the biological clock, or the ability to know day from night, can be affected.

Have you ever traveled from one time zone to another? Or stayed up all night? If so, you know that it takes time for your body to change back to your normal sleep and wake schedule. The ability to maintain a sense of day and night is regulated by sunlight and your body’s biological clock.

Imagine if you can’t change back to your normal sleep or wake schedule and how tough that would be. When you miss a good night’s sleep, you can become grumpy and unhappy and the same thing happens for those who experience Sundowning.

Possible causes could be:

  • Pain—sometimes they can’t communicate that they are in pain

  • Hunger or thirst

  • Boredom

  • Depression

  • Being overly tired

Signs of Sundowning in the late afternoon and early evening:

  • Confusion or anxiety

  • Pacing

  • Wandering

  • Yelling

Suggestions to help with sundowning:

  • Avoid clutter—a clean uncluttered space is relaxing

  • Turn the volume down or turn off the TV and Music and have a quiet environment

  • Provide an activity to the person to distract from pacing or other sundowning behavior

  • Create a schedule to maintain a quiet and relaxation time each afternoon

  • Go for a walk

  • Close the curtains

  • Each day at dusk turn down off the ceiling lights and turn on the lamps to create a nighttime environment

Physical activities and exercise during the day can help make the person tired and improves the quality of sleep.

Make sure naps are short. If they are too long, they will disrupt night sleep, even for someone who is healthy.

Spend time outside every day if possible. Schedule a daily walk of outdoor activity. Go sit in the park or go to a park bench on a street corner.

Exposure to sunlight helps the natural rhythm of sleep and wake.

Things to Avoid:

  • Caffeine late in the day: coffee, tea, cola

  • Alcohol: Can cause confusion and anxiety and not mix well with prescription medications

  • An unstructured routine: Keep the daily schedule simple

If the problem is severe, make notes in the care plan and discuss it with your Care Manager. Make sure the client discusses sundowning with their medical team to rule out pain or other medications that could be causing the confusion at that time of day.

Watch Video on Sundowning:

💡 Tip Sheet

Stages of Alzheimer’s Disease, Functional Assessment Staging (FAST), Wandering Risks, Severe Stage Loses Abilities to Sit Up, Smile, Walk, Familiar Routines Bring Comfort, Structure Activities for Morning, Afternoon and Evening, Minimize Distractions, Engage in Activities for Connection