Did you know that people with dementia aren't always able to tell you when they're hurting? Changes to the brain can make it hard for people to recognize pain, so if you ask your loved one if they're hurting, they might say 'no' even if they are.
Pain is widely under-recognized and undertreated in people with dementia. It's also a significant contributor to behavioral challenges. Does this mean that pain doesn't bother them? No! Quite the opposite. Pain can significantly affect a person's emotional state, behavior, and quality of life.
On the other side of that coin, treating pain can significantly improve your loved one's functioning and overall well-being. Luckily, there are ways to assess pain even if your family member can't easily communicate it. You just need to learn to recognize their nonverbal signs of discomfort.
If your loved one can't tell you they're hurting, look for non-verbal signs of discomfort. These can include facial expressions, mood, behavior, body language, and vocalizations.
Look at your loved one's face for signs of pain.
Pain often impacts a person's emotional state.
A patient's behavior can provide clues that they're hurting.
Watching the way the body moves can give a lot of information about the presence or location of the pain.
A person who is hurting often makes noises to relay their distress.
Nonverbal patients often have an elevated pulse or respirations when they're in pain.
Research shows that patients with Alzheimer's or cognitive impairment receive less pain medication after painful procedures than patients who can verbally communicate pain.
Think about any new, acute condition. Is it usually a painful condition? For example, does your loved one have an ingrown toenail surrounded by red, inflamed skin? It probably hurts, even if they can't identify the pain. Ponder on any longstanding chronic pain diagnosis. Many older adults have been self-managing chronic pain from a young age.
You may be aware that they have arthritis, but it's easy to forget that it might be actively hurting. In fact, the pain might be much worse now if they're unable to manage it. For example, in the past, they could stretch, adjust their activity level, or pop pain medications at the earliest signs of stiffness. Without these early interventions, pain intensity can increase significantly.
There are many different pain scales designed to help identify signs and symptoms of pain in nonverbal patients or people who have trouble with communication.
The PAINAD may be the most helpful pain scale for caregivers of people with cognitive impairing illnesses. It assigns a number value to observable behaviors – like crying, stiff body movements, and rapid breathing – to rate the severity of the pain from 1-10.
The Wong-Baker Scale was developed to help children communicate pain. It includes several faces, with facial expressions from smiling to frowning. This can help some nonverbal adults, but often the PAINAD is ultimately a better tool for older adults.
The Cornell Scale is not technically a pain scale, but it can be very helpful when trying to determine if particular behavioral symptoms are more likely to be due to pain or clinical depression.
It can be hard for a family caregiver to determine whether their loved one is hurting, and it's a good idea to turn to professionals for support. There are different types of healthcare professionals who can help in different ways.
The doctor can order prescription-strength pain medications and other pain treatments. However, many caregivers are surprised to learn that the doctor isn't always the best person to assess pain in someone who is unable to articulate it.
It's essential to provide the doctor with objective data that shows their patient is likely hurting. The easiest way to do this is to use the PAINAD pain assessment to record important information about the pain, including:
When you have a record of how often a person seems to be hurting, you can talk to their healthcare provider about a pain medication trial. With a pain medication trial, the patient takes medication routinely to see if it alleviates their symptoms and suffering.
Typically the prescriber will start with more mild medication and gradually increase the strength if needed. If the pain is properly managed, the patient should be alert and able to function better.
Many people don't realize that physical therapists can help manage acute and chronic pain through a variety of modalities. Talk to the primary care provider about a referral.
Palliative care is a wonderful, yet under-used resource for people who are suffering from serious conditions. A palliative care nurse can report to the patient's home and will work with them over time to reduce suffering and control uncomfortable symptoms.
Insurance usually covers most or all of the costs. It's sometimes confused with hospice care, but palliative care is intended for anyone diagnosed with a serious condition, not just those in the last few months of life.
Hospice is an amazing program for patients who are expected to be in the last six months of life. The hospice nurse and healthcare team can support a person to stay at home for as long as possible, enabling them to die peacefully and naturally at home.
This is a better alternative than in a chaotic and uncomfortable hospital environment. Moreover, hospice nurses are experts at pain assessment and treatment. They focus on helping each patient enjoy the best possible quality of life through their final transition.
Dementia Care Consultants are some of the best resources for helping to translate dementia-related behaviors into messages about unmet needs, including pain. A good Behavior Consultant can also help guide caregivers through the process of communicating effectively with other healthcare professionals to ensure the person's needs become met and behaviors resolve.
There are many options for treating pain beyond medications. The best treatments will vary with the type of pain. For example:
A great body of research shows that in people with dementia:
Pain is under-treated for those with dementia because pain assessment can be very hard, even for healthcare professionals. Pain assessment is especially challenging when a person says they're not hurting when they are. A patient may occasionally feel pain while other times they do not because of the damage to the brain that occurs in severe disease.
It's very important for the caregiver to keep trying because the consequences can be devastating.
Besides the effects on comfort and quality of life, unmanaged pain affects almost every aspect of a person's life. It can affect their appetite, sleep, and willingness to participate in physical activity. Poor eating, sleeping, and mobility can also increase the risk of falls.
Severe pain can affect the immune system and the ability to recover from illness or injury. These ultimately affect not only the patient but also increase the burden of care on family caregivers.
Learning to assess pain in your loved one requires some attention, but it's well worth the effort. It also gets easier with practice, so don't give up! The most important pain treatment tips to remember are to:
When your loved one's pain is minimized, they'll enjoy better physical, mental, and emotional health and be able to function at their best. Moreover, when your loved one feels better and needs less, caregivers experience less burden, better relationships, and ultimately a better caregiver experience.
Read more about how to Identify Pain in Dementia and Why As-Needed Pain Medication Doesn't Work for Many People with Dementia.
Contact Laura Herman for a no-cost, no-obligation consultation to explore how Dementia Behavior Support can help manage your loved one's pain. She can also help identify other unmet needs to improve demeanor, behavior, functioning, and quality of life.