Most people know the primary symptom of Alzheimer’s disease is memory loss. However, fewer people know that Alzheimer’s can also cause pain. Studies indicate that 60 percent to 80 percent of people with dementia experience pain regularly.

People living with Alzheimer’s may not always be able to let their Alzheimer’s caregivers know that they’re in pain. This can make it hard for loved ones to recognize their discomfort and find ways to help.

Here are some ways that Alzheimer’s can cause pain and how you, as a caregiver, can help provide relief.

How Alzheimer’s Can Cause Pain

One myALZteam member asked, “Do your loved ones complain of widespread pain? Mom has complained of pain running up the entire right side of her body (or left side, depending on the day). I wasn’t sure if this was just a ploy for her to get Tylenol or if it is common with dementia or vascular issues.”

The pain associated with Alzheimer’s isn’t often talked about. This means that family members can be unaware of what kind of pain Alzheimer’s can cause. There are several reasons why people living with Alzheimer’s may be in pain.

Bedsores

In the later stages of Alzheimer’s, people may not be able to move on their own. If they stay in the same position for a long time, they may develop bedsores. Bedsores develop when the skin and the tissue below it are damaged from continued pressure. They’re sometimes called pressure ulcers and pressure injuries.

Where pressure ulcers develop depends on whether a person is lying down or sitting most of the time. Sitting for long periods of time can cause pressure sores to develop on the tailbone or buttocks, the backs of the arms or legs, or along the spine or shoulder blades. On the other hand, lying down may result in bedsores on:

• The head (the back or sides)
• The shoulder blades
• The lower back, tailbone, or hip
• Behind the knees
• The ankles or heels

Bedsores can develop over hours or days. They tend to show up on the skin directly above bones. Signs of a bedsore include:

• Sore areas of skin
• Skin color or texture changes
• Swelling
• Skin that feels warmer or cooler than other areas
• Puslike draining

Some pressure ulcers may cause mild damage that appears as inflamed, but unbroken, skin. However, severe pressure ulcers can cause deep injuries that affect muscle and bone.

Pain Due to Limited Mobility

Trouble moving around can also cause other types of pain, not just bedsores. If your loved one isn’t very active, they may develop sore and stiff joints from not moving enough. Soreness can then cause them to avoid using the affected body parts. This lack of movement might cause tissues to tighten and form contractures (when fiberlike tissue replaces flexible tissue). This stiff tissue limits movement and often causes pain.

Limited mobility can also make old injuries flare up. Joints that have caused your loved one pain in the past, such as the hips or knees, may become painful again because they haven’t been used regularly. One myALZteam member shared, “My husband has been having pain in his right hip. He gets no exercise and sits most of the day. He limps when he goes to the bathroom.”

Chronic Pain

Alzheimer’s disease has been linked to chronic pain, or pain lasting more than three months. This pain is related to cognitive decline — a gradual loss of thinking, memory, and reasoning skills — along with other health problems. In general, the more severe a person’s cognitive impairment is, the more intense their pain may be.

It’s not fully understood why Alzheimer’s disease and chronic pain may be connected. However, some of the same areas of the brain affected by Alzheimer’s are also involved in sensing and managing pain. In particular, Alzheimer’s can affect the part of the brain that releases norepinephrine — a chemical that helps send pain signals. Changes in this area may affect how the brain processes and responds to pain.

Urinary Tract Infections and Other Health Conditions

Another common cause of pain in people with dementia and older adults in general is a urinary tract infection (UTI). In addition to other symptoms, UTIs can cause different types of pain, such as:

• A burning sensation while peeing
• Pelvic discomfort
• Lower back pain
• Abdominal pain

UTIs and other infections may also cause dementia to progress more quickly. This faster progression can lead to extra confusion. A UTI needs to be treated promptly so that it doesn’t spread to the kidneys and beyond.

“Last week, my husband was evaluated at the hospital ER for unknown pain. He was found to have a UTI, a mild case of pneumonia, and a kidney infection. He is no longer able to stand or walk without assistance and, even on pain meds, appears to be in pain,” one member shared.

How To Assess Pain

Many people with advanced dementia are nonverbal, which can make it hard for them to communicate when they’re in pain. Those who are still verbal may be asked to describe their pain and rate its severity on a scale of 1 to 10. But, because people with dementia are often unable to describe their pain in words, your loved one’s care team will likely use a different scale to rate their pain — the Pain Assessment in Advanced Dementia Scale (Painad).

Painad uses different behaviors as signs of pain. The scale rates pain severity from 1 to 10 — higher scores are given to behaviors that represent more pain. The scale gives scores for:

• Breathing (0 points if normal to 2 points if noisy or labored)
• Negative vocal sounds (0 points if none to 2 points for sounds such as moaning or crying)
• Facial expressions (0 points if smiling to 2 points for grimacing)
• Body language (0 points if relaxed to 2 points for behaviors such as striking out or pulling away)
• Ability to be consoled (0 points if no need to console to 2 points for inability to be consoled or distracted)

As a caregiver for someone with advanced dementia, it’s helpful to be familiar with the Painad scale. It’s easy to learn and can help you identify when your loved one is in pain. This awareness can help you better advocate for your loved one when working with healthcare professionals.

Managing Pain

Proper pain management can help reduce aggression and outbursts while improving comfort and quality of life. The best treatment depends on what’s causing the pain. Some people may benefit from low doses of medication, while others respond better to physical or alternative therapies.

To help relieve discomfort, your dementia care team may suggest:

• Gently massaging areas of discomfort on your loved one
• Listening to music, especially songs they remember from earlier in life
• Visiting with a therapy animal
• Trying aromatherapy
• Doing hobbies together, such as drawing

In addition, helping your loved one into new positions often can offer pain relief, help to improve their blood flow, and reduce the risk of pressure ulcers. As a general rule, try to move them every two hours if seated or every hour if lying down.

Barrier creams and ointments can help manage pain from bedsores and other skin issues. You can also massage the skin as you apply it to relieve sore muscles. One member shared their barrier cream routine: “Every second day, I would give my wife a top-to-toe strip wash with wet wipes and a sensitive skin shower gel. That was followed by a generous application of body lotion/face cream. This, of course, meant she had a regular, full-body inspection. I kept hydrocortisone cream for any areas of redness and antiseptic barrier cream for any areas of minor skin damage.”

As a caregiver, be on the lookout for any behavior that may signal discomfort in your loved one. Checking their body frequently for sores, swelling, and other potential causes of pain can help prevent symptoms from getting worse and improve their general well-being.

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 the condition.

Is your loved one with Alzheimer’s in pain? Do you have any tips for managing discomfort? Share your experience in the comments below, or start a conversation by posting on your Activities page.