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What happens towards the end of Alzheimer's?

4 min read

According to the Alzheimer's Association, more than 6.9 million Americans aged 65 and older are living with Alzheimer's disease. As the disease progresses into its final stage, it is crucial for families to understand exactly what happens towards the end of Alzheimer's to provide dignified and compassionate care.

Quick Summary

In the final, or severe, stage of Alzheimer's, individuals experience a profound loss of mental and physical function, requiring 24-hour assistance with all daily activities and becoming highly vulnerable to infections. This phase involves a complete inability to communicate verbally, loss of mobility, and difficulty swallowing.

Key Points

  • Profound Cognitive Decline: In the final stage, individuals lose the ability to communicate, recognize loved ones, and understand their surroundings due to severe brain damage [1, 2].

  • Complete Physical Dependence: Mobility is lost, leading to the person becoming bedridden or chair-bound and requiring total assistance with all daily activities, including dressing and toileting [1, 3].

  • Serious Health Risks: Increased frailty and immobility make the individual highly vulnerable to infections, with pneumonia being the most common cause of death [1, 3].

  • Swallowing Difficulties: Dysphagia, or difficulty swallowing, becomes a major issue, increasing the risk of choking and aspiration pneumonia [1, 3].

  • Focus on Comfort and Dignity: Care shifts entirely to comfort and quality of life, emphasizing palliative and hospice care to manage symptoms and provide emotional support for both the patient and family [3, 5].

  • Sensory Connection Remains: Even without verbal communication, connection through touch, music, and other sensory stimulation remains possible and is a crucial aspect of compassionate care [1].

In This Article

Severe Cognitive and Communication Decline

In the final stage of Alzheimer's, also known as the severe or late stage, the extensive damage to the brain results in a significant decline in mental function [1, 2]. Individuals lose the ability to think clearly, remember things, and communicate effectively [1].

Loss of Verbal Communication

Verbal abilities decrease dramatically, with individuals potentially only speaking single words or short, meaningless phrases. Conversation is no longer possible, and articulating needs becomes difficult. Caregivers must rely on nonverbal cues and body language to understand the person [1].

Disorientation and Loss of Awareness

At this stage, individuals become unaware of their surroundings and recent events. They may not recognize family members and lose their sense of time, place, and personal history, becoming entirely reliant on others for their care [1].

Significant Physical Deterioration

As the disease progresses, physical capabilities worsen, requiring constant, intensive assistance [1, 3].

Mobility Issues

Movement becomes severely limited, progressing from needing help walking to being unable to sit up or hold their head up without support. Eventually, the person becomes bedridden or confined to a chair, which increases the risk of pressure sores and joint stiffness [1, 3].

Swallowing Difficulties (Dysphagia)

Individuals in late-stage Alzheimer's often lose the ability to chew and swallow properly, a condition called dysphagia [1, 3]. This raises the risk of choking and aspiration pneumonia, which occurs when food or liquid enters the lungs [1, 3]. Meals may need to be pureed or liquids thickened, and feeding requires careful attention [1, 3].

Loss of Bladder and Bowel Control

Total incontinence is common in the final stage, requiring complete assistance with hygiene [1]. Maintaining cleanliness is essential to prevent skin irritation and infection [1].

Increased Susceptibility to Infections

Frailty, a weakened immune system, and immobility make individuals in the late stage very prone to infections [1, 3]. Pneumonia is a leading cause of death for people with late-stage Alzheimer's [1, 3].

Why Pneumonia is a Major Risk

Several factors contribute to the high risk of pneumonia:

  • Aspiration: Difficulty swallowing can lead to aspirating food or fluids into the lungs [1].
  • Immobility: Being bedridden hinders deep breathing, allowing lung fluid to accumulate [1].
  • Poor Oral Hygiene: Difficulties with mouth care can result in bacteria entering the lungs [1].

Comparison of Late-Stage Alzheimer's to Other Dementias

Understanding the end stage of Alzheimer's can be clearer when compared to other forms of dementia. While all lead to significant decline, the specific symptoms and timelines can differ [4].

Feature Late-Stage Alzheimer's Disease Late-Stage Lewy Body Dementia Late-Stage Vascular Dementia
Physical Decline Gradual loss of mobility, becoming bedridden [1, 3] Severe motor impairment, parkinsonian symptoms, falls [4] Physical issues can appear earlier due to strokes; mobility declines in stages [4]
Cognitive Decline Widespread damage, loss of language, memory, and awareness [1, 2] Severe cognitive issues, often with persistent visual hallucinations and fluctuation in alertness [4] Cognitive decline often occurs in a 'stepping' pattern, with periods of stability between sudden drops [4]
Communication Complete loss of verbal communication [1] Limited communication, often with visual and auditory disturbances [4] Severe communication difficulties, often compounded by previous stroke damage [4]
Vulnerability High risk of infections, especially aspiration pneumonia [1, 3] High risk of falls, infections; sensitive to certain medications [4] Vulnerable to repeat strokes and related complications [4]

Providing Compassionate End-of-Life Care

Care in the final stage focuses on comfort, dignity, and quality of life rather than curative treatments [3, 5].

Focus on Sensory Connection

Even with cognitive and verbal loss, individuals can still experience senses. Sensory stimulation can provide comfort [1]:

  • Touch: Gentle massages or simply holding a hand can be soothing [1].
  • Sound: Favorite or calming music can evoke positive emotions [1].
  • Smell: Familiar scents can provide comfort [1].
  • Sight: Looking at old photos or being in a pleasant space can offer a sense of calm [1].

The Role of Hospice Care

Hospice care is crucial in late-stage Alzheimer's, concentrating on comfort [3, 5]. Hospice teams manage pain, provide emotional support for the patient and family, and address spiritual needs, aiming for a peaceful and dignified end-of-life experience [3, 5].

Navigating End-of-Life Decisions

Ideally, end-of-life decisions, such as advance directives regarding life-sustaining treatments, are made in earlier stages [3]. If these decisions arise in the late stage, hospice teams can assist families in making choices that respect the individual's dignity and known wishes [3, 5].

For more detailed guidance on navigating end-of-life care and supportive resources, consult organizations like the Alzheimer's Association [2].

Conclusion

Understanding what happens towards the end of Alzheimer's is a challenging but necessary step for families and caregivers [1]. It involves recognizing the severe decline in cognitive function, preparing for significant physical changes, and managing increased health risks [1, 3]. Focusing on compassionate, comfort-centered care, often with hospice support, allows families to ensure their loved one's final journey is approached with dignity and peace [3, 5].

Frequently Asked Questions

The duration of the end stage can vary significantly, lasting anywhere from a few weeks to several years. The progression depends on many factors, including the individual's overall health and the presence of other medical conditions [1].

Focus on nonverbal communication [1]. Use a calm, gentle tone of voice, simple phrases, and make eye contact [1]. Physical touch, such as holding a hand or a gentle back rub, can be very comforting [1]. Pay close attention to their body language and facial expressions for cues about their needs [1].

Signs include increased frailty, more frequent infections, difficulty eating and swallowing, severe weight loss, and becoming bedridden [1, 3]. Breathing patterns may change, and the person may sleep more frequently or lose consciousness [1].

Hospice care is centered on comfort and quality of life for a person with a terminal illness [3, 5]. A hospice team provides holistic support, including pain and symptom management, emotional support for the patient and family, and assistance with end-of-life decisions [3, 5].

This is a complex decision that should be discussed with the medical team, family, and based on the individual's advance directives [3]. While a feeding tube may prolong life, it does not improve the quality of life and may increase discomfort or other health risks [3].

Caregiving for someone in the final stage is emotionally taxing. Caregivers can benefit from joining support groups, seeking therapy, and utilizing hospice services for respite care [3]. Focusing on preserving dignity and cherishing moments of connection can also help manage grief [1, 3].

Planning should ideally begin early [3]. Consult with elder law attorneys to understand options for managing finances and assets [3]. Look into eligibility for programs like Medicare and Medicaid, and explore long-term care insurance and hospice coverage [3].

References

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Medical Disclaimer

This content is for informational purposes only and should not replace professional medical advice. Always consult a qualified healthcare provider regarding personal health decisions.