How to tell if Alzheimer's is getting worse? A caregiver's guide to recognizing changes

According to the Alzheimer's Association, Alzheimer's disease typically progresses slowly over three stages: mild, moderate, and severe. For caregivers, understanding how to tell if Alzheimer's is getting worse involves recognizing the specific, evolving symptoms that mark the transition from one stage to the next.

Quick Summary

This guide outlines the key indicators that signal the progression of Alzheimer's disease. Learn to identify increasing memory loss, escalating behavioral challenges, and communication difficulties associated with the disease's advancement. It also covers what to do when noticing these changes.

Key Points

• Deepening Memory Loss: Increased forgetfulness includes personal history, not just recent events, alongside a tendency to repeat stories and misplace items.

• Escalating Behavioral Changes: Signs include heightened anxiety, agitation (especially sundowning), paranoia, and a loss of inhibitions, which can manifest as inappropriate behavior.

• Increased Confusion and Disorientation: The individual loses track of time, place, and the ability to find their way around, even in familiar surroundings.

• Progressive Communication Breakdown: Language difficulties worsen from trouble finding words to an eventual inability to carry on a coherent conversation.

• Decline in Physical Abilities: Individuals may experience mobility issues, requiring assistance with walking, sitting, and eventually, eating and swallowing.

• Need for Increased Care: The move from early to late-stage Alzheimer's is marked by a growing need for daily assistance with personal care tasks like dressing, bathing, and eating.

• Recognize Acute Shifts: Sudden or rapid changes in symptoms should be evaluated by a doctor, as they may indicate a reversible medical issue like an infection.

As a progressive brain disorder, Alzheimer's disease leads to a gradual decline in cognitive and physical function. For family members and caregivers, observing these changes can be distressing. Recognizing the signs of progression is crucial for adapting care strategies and ensuring the best possible quality of life for the individual.

Recognizing Signs of Worsening Alzheimer's

Recognizing a decline in a person with Alzheimer's involves paying close attention to changes across several areas. It is important to distinguish between gradual, expected changes and sudden shifts that may signal an acute medical issue, such as an infection.

Increased Memory Loss and Cognitive Impairment

One of the most noticeable signs of worsening Alzheimer's is a deepening of memory-related issues. While early-stage patients may forget recent conversations, middle-stage individuals may struggle to recall significant personal history.

• Forgetting personal details: The person may forget their address, phone number, or the high school they attended.
• Repetitive behavior: They might repeat favorite stories or ask the same questions over and over.
• Disorientation: Losing track of the day, season, or their location becomes more frequent, even in familiar places.
• Poor judgment: The ability to make sensible decisions, like managing finances or choosing appropriate attire for the weather, diminishes significantly.

Behavioral and Personality Changes

As the disease progresses, behavioral and emotional shifts become more pronounced and challenging to manage. These changes are a result of increasing damage to nerve cells in the brain.

• Increased agitation and anxiety: The person may become more restless, especially in the late afternoon or evening, a phenomenon known as “sundowning”.
• Paranoia and delusions: Unfounded suspicions are common, such as accusing family members or caregivers of stealing from them.
• Loss of inhibitions: Acting inappropriately in social situations, like undressing in public or making rude comments, may occur.
• Aggression: Outbursts of verbal or physical aggression can become more common, often triggered by fear or confusion during personal care routines.

Communication Difficulties

Trouble with language and communication is a hallmark of progressing Alzheimer's. What starts as occasional word-finding difficulty can progress to an inability to communicate coherently.

• Word-finding issues: The person may struggle to find the right words or may use the wrong words for objects.
• Limited language: In severe stages, speech may be reduced to a few words, phrases, or groaning sounds.
• Loss of conversation ability: They eventually lose the ability to carry on a conversation or to respond meaningfully to others.

Comparison of Alzheimer's Stages

Symptom Area	Mild Alzheimer's (Early Stage)	Moderate Alzheimer's (Middle Stage)	Severe Alzheimer's (Late Stage)
Memory	Forgets recent conversations or events; misplaces items.	Forgets personal history; repeats stories; needs help with finances.	Complete memory loss; no awareness of recent experiences.
Behavior	Can be moody or withdrawn in challenging situations; reduced initiative.	Increased agitation, paranoia, and delusions; wandering and sundowning may occur.	Restlessness or agitation; eventual apathy; aggression during personal care.
Communication	Struggles to find the right word; difficulty with planning.	Significant trouble organizing thoughts or expressing ideas; forgets names of family.	Limited to single words or phrases; eventual loss of speech.
Daily Living	Mostly independent; may need support with complex tasks like managing bills.	Needs assistance with bathing, dressing, and toileting; cannot live alone safely.	Requires full-time, around-the-clock care; dependent on others for all personal care.
Physical Ability	Largely unaffected physically, though movement can become slower.	May experience changes in sleep patterns; increased risk of falls.	Inability to walk, sit up, or hold head up without support; difficulty swallowing.

When to Seek Medical Attention

While Alzheimer's progression is expected, certain changes require immediate medical attention. A sudden, dramatic worsening of symptoms over hours or days could indicate a treatable medical issue, such as an infection (e.g., urinary tract infection), a medication side effect, or delirium. It is essential to contact a doctor if you observe any rapid shifts in a loved one's behavior, awareness, or mobility. Regular checkups are also vital to manage the ongoing progression and address new symptoms as they arise.

Adapting Care for Progressive Alzheimer's

As the disease worsens, caregivers must adapt their approach. The focus shifts from supporting independence to providing extensive, compassionate care that prioritizes comfort and dignity.

• Create a calming routine: Maintaining a consistent daily schedule helps reduce anxiety and confusion. Structured activities can offer comfort.
• Simplify communication: Use simple words and clear, one-step instructions. Nonverbal cues like touch and gestures can become more important.
• Modify the environment: Use simple memory aids, remove tripping hazards, and consider installing locks that prevent wandering.
• Focus on comfort: In the late stages, interaction shifts toward sensory experiences like music, gentle touch, or looking at old photos. Prioritize pain management and comfort care.

Conclusion

Learning how to tell if Alzheimer's is getting worse is an ongoing process that requires careful observation and a flexible approach to caregiving. The disease's progression involves a predictable decline in memory and cognition, accompanied by increasingly complex behavioral and physical challenges. By recognizing these signs, caregivers can anticipate needs and adjust their support to ensure the person with Alzheimer's receives the most compassionate and effective care throughout every stage of the illness. Early and open communication with a healthcare provider is essential for navigating the changing landscape of the disease.

For more detailed information on caregiving strategies, visit the Family Caregiver Alliance.

Frequently Asked Questions

What is the most common sign that Alzheimer's is progressing?

The most common sign of progressing Alzheimer's is a worsening of memory loss. This moves beyond typical forgetfulness to include forgetting significant personal history, repeating questions frequently, and having trouble recalling newly learned information.

How do behavioral changes signal worsening Alzheimer's?

Worsening Alzheimer's can be signaled by increased agitation, paranoia, and a loss of inhibitions. Aggression during personal care and 'sundowning,' where confusion and agitation increase in the evening, are also common indicators of progression.

Is it normal for a person with Alzheimer's to wander or get lost?

Yes, wandering and becoming lost, even in familiar places, is a common sign of progressing Alzheimer's. This behavior, along with increasing disorientation about time and place, is typical of the moderate stage of the disease.

How does communication change as Alzheimer's gets worse?

As Alzheimer's worsens, communication becomes more difficult. The individual may struggle to find the right words, repeat phrases, or eventually lose the ability to speak coherently. Nonverbal communication, like gestures, may become more important.

What physical changes indicate late-stage Alzheimer's?

In late-stage Alzheimer's, physical abilities decline significantly. This includes difficulty walking, sitting, and eventually swallowing. The individual may become bed-bound and lose control of bladder and bowel functions.

When should I call a doctor about worsening Alzheimer's symptoms?

You should contact a doctor immediately if you notice a sudden, dramatic change in a loved one's symptoms over hours or days. This rapid change could be a sign of a treatable medical issue, such as an infection, that requires prompt care.

Can I prevent the progression of Alzheimer's?

While there is no cure for Alzheimer's and it is a progressive disease, some medications can help manage symptoms or slow the rate of decline. A healthy lifestyle and engaging activities may also help, but the disease will continue to worsen over time.