Researchers have come up with a way to define the stages of Alzheimer’s Disease and help you better understand its progression. This will help set behavioral and self-care expectations for your loved one.
The stages begin with normal and end with severe. Sundowner’s Syndrome is a particular problem that individuals with Alzheimer’s experience. This has a significant impact on their behavior, but it can be managed. It is important to understand the behavioral changes associated with AD so you can maintain your loved one’s quality of life while encouraging them to be as independent as possible.
Stages of functioning in Alzheimer’s Disease
Alzheimer’s Disease causes a decline in home management and activities of daily living. This includes work, travel, money management, meal preparation, bathing, dressing, grooming, toileting, walking, and eating. This order is consistent with that of the Functional Assessment Staging Test (FAST) for Alzheimer’s Disease. For example, this test can identify challenges with dressing beginning in moderate Alzheimer’s, toileting in moderately-severe Alzheimer’s, and eating in severe Alzheimer’s. The progression between stages is as follows:
- No difficulty verbalized or observed
Normal older adult:
- Complains of inability to locate objects
- Reports difficulties at work
Early Alzheimer’s Disease:
- Impaired job functioning that is evident to coworkers
- Problems navigating new places
- Impaired ability to organize tasks
Mild Alzheimer’s Disease:
- Challenges with complex tasks such as paying bills and coordinating a dinner party
Moderate Alzheimer’s Disease:
- Needs help choosing clothes that are appropriate to the day and season
- May be unable to change clothes without prompting
Moderately Severe Alzheimer’s Disease:
- Occasional to frequent difficulty putting on clothing.
- May try to put clothes on instead of pajamas, put shoes on incorrect feet, or have difficulty fastening clothing
- Can no longer bathe properly on an occasional to frequent basis
- Not reliably able to adjust the bathwater temperature
- Unable to toilet properly and often forgets to flush or dispose of paper appropriately on an occasional to frequent basis
- Occasional to frequent urinary or fecal incontinence
Severe Alzheimer’s Disease:
- Speech is limited to several or fewer intelligible words in an average day
- Can no longer walk without help
- Unable to sit up without assistance
- Unable to smile
- Can no longer hold their head up independently
Sundowner’s Syndrome and strategies for managing it
Sundowner’s Syndrome is a major set of symptoms that individuals with Alzheimer’s Disease experience as the sun sets. It causes an increase in confusion, agitation, yelling, and disorientation during the late afternoon or evening hours, which gets better by early morning. Sundowning syndrome can continue into the nighttime hours and make it difficult for people with Alzheimer’s to fall asleep and stay in bed. This can result in repeated waking, wandering, and pacing during the night. Sundowning generally occurs in the moderate to severe stages of Alzheimer’s Disease. Its causes are not well understood.
Possible contributors to sundowning include:
- Being overly tired
- Confusing dreams with reality
- Low lighting, increased shadows, and vision impairments
- An upset in the body’s internal biological clock (circadian rhythm) that results in confused sleep-wake cycles
- Hunger or thirst
How to approach a loved one who has sundowner’s syndrome
Listen calmly to your loved one who has become agitated. Try to figure out their frustrations and concerns. Reassure them that everything is okay and provide distraction from any upsetting and stressful events.
A good indicator of a sundowning is when a person is looking for a loved one or family member. This is especially true when they are seeking a way to leave their home and find a way out. Often this loved one is deceased, but the person insists on finding them. As a caregiver, it is necessary to redirect the conversation. A sample response might be to say, “Your daughter called and she will be here in an hour. Come sit with me while we wait. I will bring you an iced glass of tea and a chocolate chip cookie while you wait.” Going along with their belief is much less agitating to your loved one than negating what they are saying. Some may say this is lying, but it is not seen that way with this condition. Instead, you are simply “going along with them on their journey”.
Some professionals call it “therapeutic fibbing.” It forces your loved one to leave their version of reality. It is not malicious lying but fibbing to provide comfort and reassurance. Honesty may be cruel, as your loved one may repeatedly bring up the same issue such as asking where a deceased mother is. For this reason, it would be cruel to confront your loved one with the same painful reality. Put yourself in their place.
If your loved one says they must go to work and are already late, you should not be truthful and say, “You don’t have a job. You have been retired for 25 years, so stop trying to go out.” Your loved one might get agitated and say, “You are keeping me prisoner and won’t let me out.” With therapeutic fibbing, you might respond, “I forgot about that. You can’t leave without having breakfast.” Give them something to eat and quietly chat to distract them from the idea of going to work. Talk about an activity the two of you can do together when your loved one is finished eating.
Strategies for preventing and minimizing Sundowner’s Syndrome
- Limit coffee, soda, or other drinks with caffeine, as well as sugar late in the day
- Avoid alcohol entirely, since this can lead to confusion and agitation
- Reduce noise, visible clutter, or the number of other people in the room
- Distract your loved one with a favorite snack, object, or activity. For example, offer a beverage or enjoyable snack, suggest a simple task like folding towels, or turn on a familiar TV program (the news may be upsetting, so pick a different one)
- Ensure your loved one gets regular physical activity, about 4 hours prior to bedtime
- Have your loved one eat an early dinner with a familiar snack at night
- Keep your loved one’s daily routine consistent and predictable
- Ensure your loved one sits by the window or outside during the daytime, since exposure to bright light can help reset their biological clock
- A short, early nap is okay but minimize naps in general and avoid them when it’s too close to bedtime
- Avoid fatigue by ensuring daily activities are done in moderation and at a comfortable pace
- Ensure the evening is quiet and calm with limited activity; good habits are playing soothing music, listening to a calming book, or taking a peaceful walk
- Friends and family members should limit phone calls to earlier in the day
- Make sure your loved one gets enough rest and has a safe, comfortable bedroom space with familiar items nearby to reassure them
- Close the blinds or curtains at dusk and turn on a light in the morning to minimize anxiety related to shadows