Watching a loved one go through end-stage dementia can be emotionally difficult, especially when new or unexpected symptoms appear. Because they can’t always tell you how they feel, you might worry that twitching is a sign of pain or discomfort.

Members of myALZteam have witnessed this symptom. One member shared, “My dad did twitch or jerk when he was sleeping on the armchair. I was sometimes worried he would fall off the seat.”

People with end-stage dementia might twitch or jerk while they’re asleep or awake. If you see this, don’t be alarmed. Twitching can happen for several reasons and doesn’t necessarily mean your loved one is in pain. Here, we examine the causes of end-stage dementia twitching and what you can do to ensure your loved one is comfortable.

What Does Twitching Look Like?

Myoclonus, or uncontrolled muscle twitching or body jerking, can happen in Alzheimer’s or other neurological conditions. Some of this sudden twitching or jerking happens when muscles contract (positive myoclonus), while others are triggered when muscles suddenly relax (negative myoclonus). Twitching can look like a seizure in someone with Alzheimer’s disease, but unlike a seizure, it doesn’t cause them to lose consciousness.

Myoclonus can look different depending on what triggers it and which part of the body it affects:

• Stimulus-sensitive myoclonus — A loud noise or light touch can trigger this kind of twitching. The startle reflex is a common example.
• Sleep myoclonus — Twitching may happen as a person drifts off to sleep, often without them noticing.
• Action myoclonus — Movements may become jerky or uncontrolled when someone tries to move on purpose.
• Essential myoclonus — This form appears without a clear cause and isn’t always related to a brain or nerve condition.
• Palatal myoclonus — The back of the roof of the mouth twitches in a fast, steady rhythm.
• Middle ear myoclonus — This twitching affects a muscle in the inner ear, so you won’t be able to see it. A person with dementia experiencing it might hear repetitive clicking or thumping sounds.
• Hiccups — Anyone can get hiccups, but people who are in the later stages of Alzheimer’s and dementia might have them more often while nearing the end of life.

You might notice a pattern in your loved one’s twitching, or it might seem to happen at random. The twitching might be occasional or nearly constant.

Is End-Stage Dementia Twitching Painful?

A loved one’s twitching might alarm you when you first notice it. In a discussion thread, one myALZteam member wondered if their loved one’s twitching was painful: “Yes, it’s definitely twitching that mum does. It looks painful sometimes, but I don’t know if it is.”

The good news is that myoclonus twitching or jerking usually isn’t painful and doesn’t mean your loved one is in distress. Muscle cramps or spasms, which can look like twitching from the outside, can be painful.

Muscle cramps develop when a muscle anywhere in the body forcibly contracts. They can happen to anyone, including people with end-stage dementia. “My husband gets very severe leg cramps when he is sleeping. They are very painful, and he gets them frequently,” shared a myALZteam member.

A person in end-stage dementia usually can’t tell you when they’re in pain using their words, but there are often signs. Look for changes in their behavior or nonverbal signs of pain such as moaning, grimacing, or sweating. Talk to a doctor if you think your loved one with end-stage dementia is in pain.

Common Causes of Twitching With Dementia

When people with end-stage dementia experience jerking or twitching muscles, it’s usually because of a disruption in the brain in the brain, spinal cord, or peripheral nerves (nerves outside of the brain and spinal cord). These disruptions can happen for several reasons.

Dementia Type

Muscle twitching is more likely to happen in some dementia types than others. Common dementia types like Lewy body dementia and Alzheimer’s disease can cause myoclonus.

Myoclonus and other movement problems are common in CHMP2B-related frontotemporal dementia (FTD), a kind of dementia linked to the CHMP2B gene. Frontotemporal dementia types involve shrinking of the frontal and temporal lobes in the brain, which control behavior and personality. FTD accounts for 10 percent to 20 percent of dementia cases, and CHMP2B-related FTD is a rare subtype.

Twitching and jerking movements are also common in dementia caused by Cruetzfeldt-Jakob disease, a rare condition that causes proteins in the brain called prions to fold into unusual shapes in the brain. Cruetzfeldt-Jakob disease causes a form of dementia that progresses faster than other dementia types.

Metabolic Changes

Myoclonus can happen because of some metabolic disorders or changes in metabolism (the process of converting food into energy). Many metabolic changes happen as dementia progresses. Some types of dementia develop because of abnormal metabolism.

In recent years, some experts have defined Alzheimer’s itself as a metabolic disorder because of the changes in how people with Alzheimer’s disease process glucose (sugar) and carbohydrates.

In end-stage dementia, myoclonus might come from electrolyte imbalances (too much or too little of essential minerals like sodium or potassium) because of difficulties with eating, drinking, or digestion.

Medication Side Effects

Twitching can be a side effect of some medications, including medications for managing dementia. Memantine is often prescribed for Alzheimer’s disease to improve thinking and memory by reducing abnormal brain activity. It can cause myoclonus as a side effect in some people.

In rare cases, medications used to treat Alzheimer’s — such as donepezil (Aricept) — may cause twitching. These drugs, called acetylcholinesterase inhibitors (medicines that help brain cells send signals), are commonly prescribed for dementia.

A Sign of the Dying Process

Sometimes, myoclonus happens near the end of life as the body’s systems begin to slow down. Twitching on its own, however, doesn’t always mean that someone is close to death. As organs like the liver and kidneys shut down, changes in the body’s metabolism can lead to twitching. Even so, myoclonus by itself isn’t a reliable sign that a person is dying.

How To Reduce Twitching in People With Dementia

You can’t always treat or prevent muscle twitching. However, muscle twitching might prevent your loved one with dementia from getting a good night’s sleep or make it harder for them to control their movements.

If you’re concerned about end-stage dementia twitching, talk to your loved one’s doctor. They might recommend stopping or changing a medication to reduce twitching. Other medications and combination therapies can reduce twitching by calming an overactive nervous system.

Reducing Twitching in Hospice Settings

People with end-stage dementia may be in hospice (end-of-life care) or palliative care (comfort care). In these settings, healthcare providers usually treat myoclonus with benzodiazepines, a type of medication that helps calm the brain and relax the muscles. Anticonvulsants or muscle relaxants can also reduce twitching without causing the sedation that benzodiazepines can cause.

Find the Support You Need

Even if the twitching isn’t painful, seeing your loved one go through end-stage dementia can take an emotional toll on you as a family member, friend, or caregiver. This can be a difficult process. It’s important to acknowledge that your feelings are normal and to take time to care for yourself, too.

Members of myALZteam have found support through sharing their experiences. “My husband and I now sleep in separate rooms as the twitching and jumping got so bad I wasn’t able to get any sleep,” said one member. “It makes us feel sad to have to do this, but without sleep, I am not able to cope during the day.”

“My husband twitches and talks in his sleep. I had no idea this was part of Alzheimer’s disease,” another member wrote. “Knowing other people have the same problem stops some of the worry.”

Caring for someone with end-stage dementia can be overwhelming, especially when new symptoms appear. If you’re concerned about twitching or any other changes, don’t hesitate to reach out to your loved one’s doctor or care team. They can help you understand what’s happening and connect you with resources to support both you and your loved one.

Talk With Others Who Understand

On myALZteam, the social network for people with Alzheimer’s disease and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with Alzheimer’s disease.

Has your loved one had twitching in end-stage dementia? What steps have you taken to manage this symptom? Share your experience in the comments below, or start a conversation by posting on your Activities page.