Pain management underused in people with dementia

WORCESTER - Imagine walking around all day in shoes two sizes too small, your feet swelling and bleeding as the leather cuts into the skin. Imagine you have to walk stooped over with your neck craned upward at an uncomfortable angle.

Now imagine nobody takes your pain seriously. They tell you to just calm down when you cry or lash out.

That's the type of experience many people with Alzheimer's disease or dementia have, according to Melanie Bunn, a gerontological nurse practitioner and consulting associate at Duke University School of Nursing in North Carolina.

Ms. Bunn was the keynote speaker at the Alzheimer's Association/Massachusetts and New Hampshire Chapter's conference for Alzheimer's care professionals, "A Map Through the Maze," Wednesday at the DCU Center. She addressed some 800 conference-goers on the topic of managing pain and dementia, engaging the audience in activities such as trying to walk around in a crouch for a minute or feeling the restorative touch of a soft rub on the shoulder.

"Pain is all about feeling. It's a universal experience," Ms. Bunn said. If we're human, we don't like pain.

Yet 50 percent of people with dementia have unmanaged pain, she said.

"We have to forget that people with dementia become all about their heads," and instead, treat the whole person, not just their leading diagnosis, she said.

Whether it's acute pain from an injury or illness, chronic pain from arthritis, headaches or back pain, or systemic pain from cancer or infection, pain affects health, functioning, emotions and quality of life.

Ms. Bunn said, "People are living in crisis. They're living in misery."

Pain is often overlooked among people with dementia because they may have difficulty understanding it, communicating about their pain, understanding how others are trying to help, or use strategies that have worked in the past.

A neon sign might be flashing, "Something's wrong" in their head, "But their brain doesn't really understand what it is," Ms. Bunn said.

The pain scales traditionally used by clinicians, with rating the pain by number or words, or by pictures of faces that frown progressively up the scale, are "a little abstract for people living with dementia," according to Ms. Bunn.

Instead, she urged dementia care professionals to watch for nonverbal behaviors associated with pain, particularly changes in behavior. These might include wrinkled forehead, tension around the eyes, agitation, restlessness, verbal outbursts and other actions. Moaning or crying might be expressions of depression, often occurring hand in hand with pain.

This information should be passed along to others involved with caring for the person so a pain management plan can be addressed.

Ms. Bunn said that she was taught in nursing school, "Take care of the person, not the numbers," a lesson that still applies even when the person can't communicate their needs well.

Pain management itself should consider the full spectrum of options, from comfort measures such as gentle massage or soothing music, to relaxation exercises, to medication, according to Ms. Bunn.

"We need to get over our fear of pain medication. Many times they're underused for older people," she said.

But it's important to match the right type of medication with pain.

While non-opioid drugs such as acetaminophen or ibuprofen might be the right place to start, following the clinical mantra, "Start low and go slow," narcotics could be appropriate. In fact, a person with dementia might need higher doses of opioids because "they don't get that placebo kick" from taking a drug.

"There's not a simple rule. People don't get addicted for pain management," Ms. Bunn said. "Pain makes a difference and pain management gives relief."

She stressed that monitoring medication and its side effects carefully was still vital. And clinicians need to think about managing multiple problems at once.

"It doesn't have to be an either-or kind of approach," she said afterward. "We've got to treat individuals as individuals."

More than 5 million Americans are living with Alzheimer’s, and as many as 16 million will have the disease in 2050, according to the Alzheimer's Association. The cost of caring for those with Alzheimer’s and other dementias is estimated to total $277 billion in 2018, increasing to $1.1 trillion (in today’s dollars) by mid-century. Nearly one in every three seniors who dies each year has Alzheimer’s or another dementia.

People with dementia account for 1,504 emergency department visits for every 1,000 people living with the condition. The hospital readmission rate for people with dementia is 22.5 percent.

Wednesday's conference was designed in part to help hospital personnel provide appropriate care, based on newly released care standards from the Massachusetts Alzheimer’s and Related Dementias Acute Care Advisory Committee. The committee, established in 2016 by the state Legislature, calls on hospitals to develop a comprehensive plan to address the unique needs for patients with dementia.