How do people die from Lewy body dementia? Understanding the final stages

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Lewy body dementia is a progressive neurodegenerative disease. Most people with LBD do not die from the disease itself – but from complications such as pneumonia, infections and falls.

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What Is Lewy Body Dementia?

Lewy body dementia (LBD) is caused by the accumulation of protein deposits, known as Lewy bodies, in the brain’s nerve cells. These deposits gradually impair cognitive and motor functions. The disease presents symptoms that overlap with both Alzheimer’s disease and Parkinson’s disease, such as memory problems, hallucinations, stiffness, and tremors.

The Final Stages of the Disease

In the final stages of LBD, patients often become completely dependent on caregivers. This stage is characterised by:

• Severe Cognitive Decline: The individual may lose the ability to communicate and recognise their surroundings.
• Motor Difficulties: Stiffness, muscle weakness, and an inability to move independently.
• Autonomic Dysfunction: Issues with blood pressure, heart rate, and digestion can lead to severe complications.
• Eating and Drinking Challenges: Swallowing difficulties (dysphagia) are common, increasing the risk of malnutrition and dehydration.

How Does Lewy Body Dementia Kill You?

Most individuals with Lewy body dementia do not die directly from the disease itself but from complications arising as a result of it. Understanding how Lewy body dementia kills is important for families and carers:

• Pneumonia: Swallowing difficulties can cause food or liquid to enter the lungs, leading to aspiration pneumonia – the most common cause of death in LBD.
• Infections: A weakened immune system and sedentary lifestyle increase the risk of infections, such as urinary tract infections, which can lead to sepsis.
• Falls: Motor issues and balance problems heighten the risk of falls and severe injuries, which can be fatal in frail patients.

Support and Palliative Care

In the final stages of the disease, the focus is on relieving suffering and ensuring the best possible quality of life. Palliative care aims to manage pain and symptoms, provide a calm and secure environment, and offer emotional and practical support to caregivers and family members.

Preparing for the End of Life

Preparing for a loved one’s final days with Lewy body dementia is emotionally challenging. Seeking support from healthcare professionals, therapists, and support groups can be invaluable in navigating this difficult time.

Read more: Lewy body dementia – Alzheimer’s disease – Parkinson’s disease – Dementia tracker

Sensorem’s safety alarm has GPS positioning, medication reminders and automatic fall alarm

Sensorem’s personal alarm is an example of a technical aid specially developed for people with dementia. The personal alarm works outdoors and has built-in GPS positioning so that relatives can see the user’s position on a map in the Sensorem app. Relatives are automatically called by the personal alarm (two-way communication) if the user leaves a predetermined geographical area. The personal alarm also has medication reminders, which means that the watch emits a sound and tells the user that it is time to take their medication. The personal alarm can also alert automatically in the event of a fall with the built-in fall sensor.