What stages of dementia are totally incontinent of urine and feces?

According to the Alzheimer's Association, bladder and bowel incontinence are most common in the middle to late stages of dementia. This loss of control is a direct result of cognitive and physical decline, and understanding what stages of dementia are totally incontinent of urine and feces is vital for proactive and dignified care planning.

Quick Summary

Total incontinence of urine and feces typically occurs during the late stages of dementia, when severe cognitive decline affects the brain's ability to control bodily functions. This phase, often characterized by a person's inability to communicate needs or remember how to use the toilet, requires full-time, compassionate care.

Key Points

• Late-Stage Incontinence: Total incontinence of both urine and feces is a characteristic feature of late-stage dementia, typically corresponding to Stage 7 of the Global Deterioration Scale.

• Progressive Onset: The loss of bladder and bowel control is not sudden; it develops gradually, often with urinary incontinence preceding fecal incontinence as the disease progresses.

• Cognitive Connection: The root cause is severe cognitive decline that disrupts the brain's ability to process signals, recognize the need to use the toilet, and remember the steps involved.

• Management is Key: Effective management involves establishing consistent toileting schedules, using simple cues, adapting clothing, and creating a supportive environment to maintain dignity.

• Medical Factors: It's crucial to consult a doctor to rule out other treatable causes of incontinence, such as UTIs, constipation, or medication side effects.

• Compassionate Care: Prioritizing dignity and patience is essential for caregivers, as incontinence can be a source of significant distress for individuals with dementia.

The Link Between Cognitive Decline and Incontinence

As dementia progresses, the brain experiences profound changes that impact an individual’s ability to control their bladder and bowels. Continence is a complex process that relies on a functioning communication loop between the brain and the urinary and bowel systems. For a person with advanced dementia, this loop can be completely disrupted, leading to a loss of control.

Brain changes due to dementia can interfere with several critical functions related to toileting:

• Recognizing Urges: The person may no longer recognize the physical sensation of needing to use the toilet or perceive it too late to act.
• Remembering the Process: They may forget what the toilet is, where it is located, and the necessary steps to use it.
• Communication: Declining communication skills mean they are unable to express their needs to a caregiver.
• Physical Mobility: As physical abilities also deteriorate, a person may be too unsteady or weak to make it to the bathroom in time, even if they recognize the need.

The Progressive Nature of Incontinence

Incontinence does not typically appear overnight in dementia. Instead, it is a progressive symptom that worsens as cognitive impairment advances. Urinary incontinence often occurs before bowel incontinence, and the severity increases over time.

In the early stages, a person might experience occasional accidents due to misjudgment or confusion. For example, they might have trouble finding the bathroom in an unfamiliar place or forget to use the toilet before a long outing. As the disease enters the middle stages, accidents become more frequent. The person may not be able to articulate their need to a caregiver, and they may struggle with clothing, causing delays.

The progression ultimately leads to total, or 'double,' incontinence, where there is a complete loss of control over both bladder and bowel functions. This signifies a move into the most severe phase of the disease.

Total Incontinence in Late-Stage Dementia

Total incontinence of urine and feces is characteristic of the late, or severe, stage of dementia, which aligns with stage 7 of the Global Deterioration Scale (GDS).

• GDS Stage 6 (Severe Cognitive Decline): During this stage, individuals require assistance with all activities of daily living, including toileting. They may forget the names of family members and experience significant personality changes. While they might still have some awareness of toileting needs, frequent incontinence is common. Fecal incontinence often begins during this phase.
• GDS Stage 7 (Very Severe Cognitive Decline): This is the final stage of the disease, marked by a complete loss of speech, mobility, and the ability to respond to their environment. At this point, the person with dementia is fully dependent on caregivers for all personal care. The brain's control centers for bladder and bowel function are completely compromised, resulting in constant, total incontinence of both urine and feces.

Comparison of Incontinence by Dementia Stage

Feature	Early Stage (GDS 1–3)	Middle Stage (GDS 4–6)	Late Stage (GDS 7)
Awareness of Needs	Generally intact; occasional lapses.	Diminished; often forgets or misinterprets urges.	Nonexistent; no awareness of bodily functions.
Accident Triggers	Environmental factors; confusion in new places.	Difficulty finding toilet; forgetting how to use it; communication issues.	Complete breakdown of communication between brain and bladder/bowel.
Frequency	Rare, isolated incidents.	Frequent, but not constant; can be managed with routines.	Constant and total incontinence of both urine and feces.
Physical Ability	Minimal or no impact.	Declining mobility; slower to get to toilet.	Immobile; fully dependent for all needs.
Management	Mostly behavioral strategies and reminders.	Regular toileting schedules and adapted clothing.	Use of protective products and intensive hygiene care.

Effective Management Strategies for Total Incontinence

Caring for a person with total incontinence requires a compassionate, systematic approach to maintain dignity and prevent complications like skin infections. While it is a natural progression of the disease, effective management is possible.

Caregiver strategies and techniques

• Establish a consistent toileting schedule based on the person's routines. Take them to the bathroom every two hours, or more frequently if a pattern of accidents is observed.
• Pay close attention to non-verbal cues. Restlessness, fidgeting, or tugging at clothing may signal a need to use the toilet.
• Use clear, simple instructions and visual cues. Point to the toilet or use a picture of a toilet on the bathroom door.
• Ensure easy-to-remove clothing, such as pants with elastic waistbands, are worn instead of buttons or zippers.
• Manage fluid intake by limiting fluids in the evening to reduce overnight accidents, while ensuring adequate hydration during the day. Avoid bladder irritants like caffeine.

Environmental adjustments

• Keep the path to the bathroom clear and well-lit, especially at night.
• Use a bedside commode for easier access if mobility is a significant issue.
• Install grab bars and raised toilet seats for safety and easier use.
• Use waterproof mattress covers, chair pads, and high-quality adult briefs to manage leaks and prevent damage to furniture.

Other Medical Causes to Rule Out

It is important to remember that not all incontinence in a person with dementia is solely due to the disease's progression. Before assuming total incontinence is inevitable, other treatable causes should be ruled out by a doctor.

1. Urinary Tract Infection (UTI): A sudden onset or worsening of incontinence can signal a UTI. Symptoms can be harder to detect in dementia patients, so be on the lookout for changes in behavior, agitation, or fever.
2. Constipation: Severe constipation can lead to a blockage that causes leakage of liquid stool around the impaction. A high-fiber diet and adequate fluids can help.
3. Medications: Certain drugs, including diuretics, sedatives, and some blood pressure medications, can increase the risk of incontinence. A doctor can review and adjust medications if necessary.

Conclusion

Total incontinence of urine and feces is a hallmark of late-stage dementia, reflecting the severe and irreversible breakdown of brain-body communication. While this phase presents significant challenges for caregivers, managing it with dignity, patience, and the right strategies is entirely possible. By focusing on a structured routine, compassionate communication, and ensuring a safe and manageable environment, caregivers can provide the best possible quality of life. Consult a healthcare provider to address any medical issues that may contribute to incontinence and explore all available resources for support. For further information and support, the Alzheimer's Association offers extensive resources on managing incontinence in dementia patients.

Frequently Asked Questions

At what stage of dementia do you become completely incontinent?

Individuals typically become completely, or totally, incontinent of both urine and feces during the very severe, or late stage, of dementia. This corresponds with Stage 7 of the Global Deterioration Scale, where cognitive and physical functioning is severely impaired.

Does incontinence always happen with dementia?

No, incontinence does not affect everyone with dementia, nor does it necessarily appear in the early stages. However, as the disease progresses to the middle and late stages, it becomes a very common symptom due to the worsening cognitive and physical decline.

Can medications cause or worsen incontinence in dementia patients?

Yes, certain medications can cause or worsen incontinence. Diuretics, sedatives, and some blood pressure medications can all have an effect. It is important to discuss all medications with a healthcare provider to see if they are contributing to the problem.

What is the difference between early and late-stage incontinence in dementia?

Early-stage incontinence is typically intermittent and often caused by confusion or disorientation, while late-stage incontinence is constant and total. In the late stages, the person has lost the cognitive ability to recognize and act on the urge to use the toilet, regardless of the environment.

How can caregivers manage total incontinence while preserving dignity?

Caregivers can manage total incontinence by using highly absorbent adult briefs and pads, establishing a strict hygiene routine to prevent skin irritation, and approaching care with a calm, matter-of-fact attitude. Providing privacy and speaking respectfully are key to preserving the person's dignity.

Is total incontinence preventable in dementia?

For most individuals, total incontinence in the late stages of dementia is an unavoidable result of irreversible neurological damage. While management strategies can significantly reduce accidents and discomfort, they cannot reverse the core progression of the disease.

What should I do if a dementia patient suddenly becomes incontinent?

A sudden onset or significant worsening of incontinence should be addressed by a doctor immediately. It could be a sign of an underlying, treatable medical issue, such as a urinary tract infection (UTI), severe constipation, or a reaction to a new medication.