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Alzheimer's Caregiving: Managing Dementia-Related Pain

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By Editorial Team

4 min read

If you are a caregiver for a person with Alzheimer's disease, you know they sometimes have pain. You may think it is all a part of aging. But you may not know that people with dementia, like those with Alzheimer's disease, are prone to serious chronic pain. In fact, they are far more prone than older adults without dementia. Fortunately, there are ways you can help them feel better.1-4

Do people with Alzheimer's disease have more pain?

In all people, aging can bring progressive physical breakdown, resulting in pain. Knees, hips, and lower backs often hurt. Bones weaken and nerves can radiate pain. And chronic pain (lasting longer than 3 months) is linked to many mental health challenges, including:1-3

  • Trouble thinking clearly
  • Negative feelings
  • Difficulty being around others

However, there is more to the story. Up to 80 percent of people with dementia may be in pain every day. But research shows that only 54 percent of older adults without dementia complain of ongoing pain. So, it seems that people with Alzheimer's disease experience more chronic pain than other people their age.1,4

What does dementia have to do with pain?

A 2019 study looked at the relationship between dementia and chronic pain. They noticed that people with higher pain levels had greater mental decline. At the same time, the more advanced a person's Alzheimer’s disease, the higher their chronic pain levels. The researchers did not determine the exact reason for this two-way link. But they did find 3 common denominators.1,3,5,6

People with Alzheimer's disease and people with chronic pain both had:1,3,5

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  • Damage in the locus coeruleus – This is part of the brain's pain response system. The locus coeruleus sends the chemical norepinephrine to the body, which carries messages about many things, including pain.
  • Pain-triggered brain inflammation – This inflammation causes more pain, plus nerve dysfunction.
  • Loss of brain gray matter in 12 areas of the brain – This loss affects the senses and thinking.

What kinds of chronic pain affect people with Alzheimer's disease?

People with Alzheimer's disease experience physical, mental, emotional, and social pain. All of these can be felt as physical pain. And in many cases, the person cannot tell you about them.1,2

Types of physical pain can include:1,2

  1. Past injuries or surgeries
  2. Respiratory or urinary tract infections
  3. Poor digestion, diarrhea, or constipation
  4. Pressure sores or skin irritation
  5. Discomfort from poor hygiene or grooming
  6. Disease symptoms from other medical conditions

Types of mental pain can include:1,2

  1. Instability
  2. Confusion about reality
  3. Anxiety
  4. Frustration
  5. Anger
  6. Fear

Types of spiritual pain can include the loss of:1,2

  1. Sense of self
  2. Dignity
  3. Sense of well-being
  4. Sense of control
  5. Hope or future desires
  6. Positive emotions

Types of social pain can include the loss of:1,2

  1. Conversation
  2. Companions
  3. Family (if they cannot recognize them)
  4. Familiar surroundings or living arrangements
  5. Activities
  6. Economic stability

How can you tell when the person you care for is hurting?

Fortunately, you can learn to assess your loved one's pain, even if they cannot talk about it. Throughout the day, check how they are doing. Things to observe include:1,7

  • Facial expressions
  • Activity and body movements
  • Vocal noises
  • How they act around others
  • Personality or mood changes
  • Eating or sleeping changes

Keeping track of what you notice will help you and the care team deal with the person's pain. You can chart their specific kinds of pain with a pain scale. A common scale is the Pain Assessment in Advanced Dementia Scale (PAINAD).1

What treatments can help with pain?

As with many conditions, there are both nonmedical and drug treatments to treat pain. Your loved one's doctor or treatment team can discuss the best route. They will consider:1

  • The person's overall health
  • The type and level of pain
  • The person's previous response to treatment
  • Other medical conditions and drugs they are taking
  • Risk of unwanted side effects versus benefits of the treatment

Most often, it is best to try nondrug options first. This is because these options do not require professional help or money. Some nonmedical treatment options for pain include:1,7

  • Exercise (according to their physical ability)
  • Spending time outdoors
  • Comforting touch or massage
  • Being present with them
  • Music therapy
  • Aromatherapy
  • Pet therapy
  • Drawing, painting, coloring

When you are doing these, watch the person's face and body for clues about whether it is helping. Consider using the ALTAR (anticipate, look, treat, avoid comparisons, revisit) caregiving tips to deal proactively with their pain.1

If needed, your loved one's doctor may also suggest pain drugs. Typically, they will start with a low dose of a non-opioid drug, like paracetamol (acetaminophen). For severe pain, they may prescribe opioids (oxycontin, hydrocodone, morphine).1,7

People with Alzheimer's disease should not take a nonsteroidal anti-inflammatory drug (NSAID) for pain. No studies support their effectiveness, and they can have negative side effects.3,7

What is the bottom line?

People with Alzheimer's disease experience more ongoing pain than others their age. The longer they have the disease, the more pain they may have. Even though they might not be able to tell you about their pain, you can learn to recognize it.1-3

Your watchfulness, practical action, and daily presence can help your loved one cope effectively with their pain. And they can help you and their care team treat the pain – with or without drugs.1-3

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