Dementia and Pain

Hello everybody, and welcome to a new episode of

The Truth, Lies, and Alzheimer's Show. I'm Lisa Skinner, your

host, and today we are talking about dementia and pain. Now, do

y'all know that pain is a universal human experience for

all of us. Yet, in people living with dementia, recognizing and

addressing pain, unfortunately, becomes profoundly more complex.

Cognitive changes can obscure the typical signs of pain, alter

pain perception, and complicate communication about one's

distress. So that's exactly what I'm sharing here today. What is

known about the relationship between dementia and pain,

including common causes, signals that caregivers and clinicians

should monitor strategies to alleviate pain, communication

approaches for individuals who cannot articulate their

experience, the interplay with other health conditions, and I'm

going to offer you suggestions for practical considerations

that caregivers, families, and health care teams can implement.

The goal is to provide a clinically grounded empathetic

overview that can inform daily care, care planning, and

interdisciplinary collaboration. I'm going to start by telling

you about the intersection of dementia and pain, so that

includes a prevalence of pain in dementia, and a good way to

describe that for everybody is that people with dementia

frequently experience pain, and oftentimes it's actually from

chronic conditions such as arthritis, dental disease, back

pain, neuropathies, cancer, and or post-surgical states. Now,

the problem is, is that pain often goes under recognized in

this population due to communication barriers, and due

to their cognitive impairment, and a tendency to attribute

distress to dementia itself, not recognizing it being a different

underlying situation, so all of this really makes it quite

difficult for people living with dementia to not only express

what they're feeling, but for the caregivers and the family

members to interpret or even understand that they are feeling

some degree of pain or discomfort, so this is

interesting. According to Dementia UK, some people believe

that individuals living with dementia cannot even feel pain,

and I've heard this for decades, but this is absolutely not true,

people with dementia surely do experience pain. They just might

not be able to recognize that they're feeling pain or express

or manage it the same way people do who do not live with

cognitive impairment, so let's talk about pain perception and

aging. Now, aging in itself, and not even factoring in cognitive

impairment, already can alter our ability to sense pain

danger, and there's a technical word for it. It's called

nociception. In other words, it's the way our reflexes react

that would cause us, for example, to pull our hand away

from heat before we even feel the pain, age also alters the

way our brains respond to pain processing. In other words, the

complex emotional and cognitive interpretation of that stimulus

by our brain, so. Stove, like touching a hot stove. Now, some

older adults do become more sensitive to certain stimuli,

while others may have altered pain thresholds. Dementia can

further modulate these processes, sometimes blunting

overt reactions to pain, or conversely, intensifying their

agitation as a proxy for their discomfort. It definitely will

get will have an impact on their ability to function, because

pain can worsen functional decline, mood disturbances,

sleep disruption, appetite changes, and an overall quality

of life in dementia. Untreated pain may exacerbate their

agitation, aggression, withdrawal, and even their

repetitive questioning, leading to inappropriate pharmacological

responses if pain is misread as a behavioral problem. So, some

of the common causes and sources of pain in people with dementia

are as follows: it's caused by musculoskeletal problems, it can

be caused by osteoarthritis, by having spinal stenosis,

degenerative joint disease, and also soft tissue injuries. These

are all prevalent as mobility may decline and activity

patterns shift, it could be neuropathic pain, so conditions

such as diabetic neuropathy, post therapeutic neuralgia, or

chemotherapy induced neuropathy can cause burning, tingling, and

even shooting pains. Sometimes we don't even stop to think that

the people we love with dementia may be experienced dental and

oral facial pain, dental decay, gum disease, and even

ill-fitting dentures or temporomandibular joint

disorders. That's extremely painful. These can all cause

significant discomfort, but may be overlooked in people living

with dementia, then there's the skin and pressure related pain

causes, which include pressure ulcers, skin tears, skin burns,

or dermatitis. They're all more likely with immobility or

reduced sensation.

When you live with dementia, there's visceral pain, like in

your gallbladder, having gallbladder disease, having

kidney stones, living disorders, pancreatitis, or a

gastrointestinal condition that can produce pain that is

difficult to localize in those with limited communication.

Well, that sure certainly stands to reason. We also have to take

into consideration an infection or an inflammatory process

that's happening, like a urinary tract infection. Pneumonia is

extremely common in the elderly population, or even cellulitis

that often presents with subtler signs in dementia, but the pain

can accompany a systemic illness person can have cancer or

malignancy, and it be experiencing pain from tumors or

metastases, maybe present with guarded movement, fatigue, or

decreased appetite, rather than explicit verbal reports, which

they are no longer capable of doing. It could be caused by

postoperative and procedural pain, like surgeries or invasive

diagnostics. This can leave the patients with lingering

discomfort and altered recovery trajectories. they could be

living with chronic conditions with overlapping symptoms like

endometriosis and fibromyalgia, or neuropathic syndromes that

may contribute to chronic pain that intensifies with age. Or

with dementia progression, now some of the signs and indicators

of a person experiencing pain with dementia is pay attention

to their nonverbal cues. These are crucial when verbal

communication is so limited. Look for a constellation of

behavioral and physiological changes, rather than a single

symptom like fidgeting, agitation, or restlessness. They

can exhibit their discomfort with facial expressions,

grimacing, frowning, a clenched jaw, tightened eyebrows, or

agitation when a body region is touched. You can witness obvious

and severe mood changes, or being uncharacteristically quiet

for that particular person, physical symptoms, such as a

change in room temperature or temperature outside, and maybe

displaying increased pulse, sweating, flushing, or even

appearing pale, can all be signs of pain and or physical

discomfort in people with dementia also look for a visible

injury, such as swollen joints, cuts or bruises, pressure sores,

or even mouth ulcers. Now we often hear mild to severe

vocalizations from people living with dementia when they are

experiencing pain and or discomfort, they could be

sighing, they could be moaning, groaning, or even experience

you'll see sudden changes in their tone or in the the

loudness of their voice or their the yelling, however it is

they're trying to vocalize that something is wrong. Now look for

signs via body language, like guarding a limb, rubbing or

massaging a particular area of their body, they become

extremely restless. For out of out of nowhere, they start

pacing, and even becoming withdrawn from activities could

be a sign. So changes in routine behaviors, we can see increased

agitation and or irritability, again withdrawal from favorite

activities, we can notice changes in their sleeping

patterns, reduced appetite, or increased somatic complaints,

like they're they're trying to tell you that they are nauseous,

that they're dizzy and without a clear cause or reacting with

fear or distress during personal care, such as bathing or

dressing, which can even escalate to verbal or physical

aggression. they can show that they are having difficulty

standing, sitting, or walking, changes in their gait that

become noticeable, an increased need for assistance with

transfers, or being less willing to move altogether, we can

detect elevated heart rates, them sweating, pupil dilation,

flushed skin, particularly around the suspected pain site,

and then we can see and hear behavioral expressions that may

be misinterpreted. They're displaying their agitation or

aggression that can be a reflection of their pain and

discomfort, or an unmet need, rather than just plain willful

misbehavior? And we really don't see that a lot in people living

with dementia. They're trying to tell us something, calling or

shouting out, or groaning, or rubbing, or twitching, so there

is variability across individuals living with

dementia. The progression and individual differences mean that

pain expression can and does at times change over. Over time,

what signals distress today may differ from signals six months

later.

So be mindful of that, and then I mentioned earlier, holding a

particular part of their body, noticing changes in their

appetite, such as refusing food, and just as a quick reminder, if

you have a chance, stop by our website, you'll find us at

Minding dementia.com So, we've covered quite a few things up to

now, but I'm going to pick up where we left off when we went

to the break, and I'm going to go over some approaches to

alleviating pain in people living with dementia, so one of

the things that's available out there is a comprehensive

assessment, or actually you want to have your primary care

physician, or your loved one, or the person you're caring for,

periodically update a comprehensive assessment and

documentation of their medical condition, so that should

include having the physician review medical history, current

their current medications, comorbidities, and what that

means is any other medical conditions that they have with

the cognitive disease that they are living with. Also, recent

changes in function or mood. There are actually this is what

I started to say a second ago, but there are pain scales that

have been adapted for dementia, and they are used for as an

observational tool appropriate to the person's current

cognitive level, and one of the more popular ones that you can

google and probably download, I believe, is the Abby Pain Scale.

There's also a facial affective affective scale. There's the

Pack Slack assessment checklist. It's a pain assessment checklist

for seniors with dementia, or one that's called the M O B I D

slash two. It's a mobility in dense pain assessment tool, and

these tools rely on behaviors, cues, and caregiver input,

rather than based on self-reporting. So it really is

a multi-dimensional approach that combines caregiver

observations, clinicians assessments that are regularly

updated and possibly objective biomarkers when relevant to

build a probable pain profile for our loved ones and the folks

that we care for living with dementia. Now, in addition to

that, there are non-pharmacological strategies,

and we can all talk to our physicians regarding what they

recommend based on each individual, but here are some of

the ones that they might recommend: physical therapies,

and that would include gentle range of motion exercises,

guided walking, aquatic therapy, if feasible, and posture slash

alignment adjustments to reduce musculoskeletal strain, as

recommended by a professional, don't try to, you know,

implement any of these things that I just mentioned without

the guidance of some medical professional, a physical

therapist, a physician, because they can be harmful, especially

in the elderly population, they can do some harm. There's also

things to take into consideration that will help

with physical comfort measures, like using warm or cold

compresses, comfortable seating, pressure relieving cushions,

proper footwear can make a huge difference, and supportive

positioning during care activities. Again, talk to the

physician to get recommendations on what they think would be

helpful, repositioning and mobility. Rates, so regular

repositioning to prevent ulcers and discomfort. Use of assistive

devices to reduce strain on their joints. You can, you know,

talk to their physician about activity modification that might

be better for that particular person's medical problems or

physical problems, so what we would want to do in that regard

is to adapt activities to minimize their pain triggers,

for example, break tasks into shorter steps, pace activities

to match their tolerance, we also want to consider

environmental modifications like adjuncts, warm lighting,

comfortable noise levels, familiar surroundings, and

predictable routines that can reduce their stress level that

also compound their pain perception. All of these things

have a huge impact on people living with dementia that we

don't even relate to, but they do. There are mind-body

interventions that we've talked about so many times, like gentle

music, massage therapy with consent and safety, of course,

guided relaxation techniques, aromatherapy may offer

symptomatic relief or improved mood under a physician's

recommendation and guidance. Please, now we want to always be

mindful of sleep optimization, because adequate, adequate sleep

does support pain thresholds and recovery, so we need to make

sure we're addressing any sleep disorders they may have, and

nighttime discomfort.

It is not uncommon for people living with dementia to wander

around at night, their circadian rhythms are completely thrown

off, and they a lot of times can't distinguish between

daytime and nighttime hours, there are pharmacological

options that must be discussed with careful oversight by the

physician, and they will usually recommend starting with an

analgesic by class, such as Tylenol or acetaminophen, so

they often want to start with a first line for mild to moderate

musculoskeletal pain, monitor for liver function and

interactions with other medications they may be taking,

and then they might increase that or try an anti-inflammatory

drug, an NSAID, such as ibuprofen or naproxen, but with

caution due to gastrointestinal side effects in some people,

renal side effects in some people, cardiovascular risks,

particularly in older adults that already have some other

medical conditions, so the doctor, you know, will probably

take into consideration gastro protection measures where

appropriate. Some of the topical agents they might have you use

is capsaicion, lidocaine patches for localized pain with fewer

systemic effects, opioids sometimes for moderate to severe

pain, or cancer-related pain with careful, careful dosing,

monitoring for sedation, delirium, constipation, and of

course mood changes, which happen frequently when using

drugs of that caliber, especially with dementia. There

are other types of analgesics, they may prescribe

antidepressants, anticonvulsants, neuropathic

pain, monitoring for sedation or cognitive effects, and then, of

course, there are non-pharmacologic to the

pharmacologic considerations, starting low and going slow,

reassess rarely for efficacy, adverse effects, and

interactions with other CNS active medications, and again, I

just want to emphasize that we really have to. To watch for

signs and signals that something might not be working the way

it's supposed to be working, because many times mid to later

stage they are not going to be capable of telling us they're

not feeling well, they're having some type of medical reaction to

a medication or anything that they have been given. Okay, pain

management plans involve the physicians, the nurses, the

pharmacists, the caregivers in a cohesive and collective

collaborative structured plan with clear indications of when

to reassess or escalate the treatment, so some of the things

again that we really need to pay attention to as family members

and care partners, monitoring for adverse effects, we are

their eyes and ears. We have to be, because most times they're

not. They're not capable of expressing what's happening with

them at any given moment of any given day. Sedation, look for

confusion, delirium risk, constipation, intestinal

bleeding, kidney function problems, liver function

problems. Be very vigilant for drug-drug interactions,

especially with polypharmacy, common in older adults. That

means they're taking five or more medications a day,

palliative and comfort-focused care. So, in late dementia or

advanced disease, always, always, always prioritize their

comfort, be mindful of dignity, their dignity, and the goal of

symptom relief. Early integration of palliative care

can and does support both the patients and families and

caregivers, and regular reassessment of goals of care

and alignment with the patients themselves, keeping in mind

their values and previously expressed preferences that

should have been documented with the family, and you know anybody

involved in the care, so those things have already been

identified and will be honored. Here are some

non-pharmacological and environmental strategies to

minimize pain, positioning and ergonomics would include proper

alignment during their transferring, use of cushions

and supportive surfaces, heat cold therapy would mean timely

application to affected areas where appropriate and safe.

Gentle therapies again that would include massage with their

consent, warm baths, hydrotherapy, if available, and

then offering short, enjoyable activities to prevent

overexertion and fatigue that may masquerade as pain. Boundary

setting, clear communication with the care team about limits

and tolerance to interventions and then of course how pain

interacts with their other health conditions like for

example depression and anxiety pain and mood disorders can

worsen and exacerbate each other. Addressing mental health

can modulate pain perception. Poor sleep can amplify pain

sensitivity, so improving sleep quality can reduce their pain

experiences, or even the perception of the pain,

cognitive and impairment, and pain expression. Dementia can

blunt. I don't know if any of you are aware of this, but

dementia can actually blunt or alter pain expressions making it

essential to rely on observational tools like the

pain scale that I mentioned, and caregiver reporting. Now, other

chronic diseases, such as diabetes, cardiovascular.

Vascular disease and cancer does and can complicate pain profiles

and treatment choices requiring careful medication management

and risk assessment, and then finally, if your loved one or

the person that you're caring for does have a history of

alcohol or drug use, or again, polypharmacy, which means that

they are taking five or more prescription medications a day.

These can definitely influence the analgesic choices, meaning

medication and adverse effect profiles, and then a few

communication tips for pain when the person with dementia cannot

tell you. So, I'm going to go over these real quickly before

we wrap this episode up today. Establish a pain reporting

identify a primary caregiver or point of contact

who can observe, document, and escalate the concerns. Use

standardized observational tools like that, those pain scales

that I mentioned earlier to document signals across

different times of day and activities. Also, build a

routine assessment schedule, regular pain review during care

routines. For example, what their pain level seems to be

like after physical therapy, during bathing, before bedtime,

after bedtime, detecting different fluctuations, use

proxy reporting effectively, and maintain a pain diary, and when

you do this, include notes on observational facial

expressions, their agitation levels, withdrawal changes in

appetite or sleep, and any response to interventions. So

that is what I wanted to share with you, and give you,

hopefully, some valuable nuggets and information about the pain

that people with dementia do live with, and the things that

we actually need to to do to help them with identifying that

they do have some pain or discomfort going on, and then

how to handle it, so I hope you all enjoyed today's episode, and

for being here on The Truth Lies, or at The Truth Lies and

Alzheimer's Show. And I'm Lisa Skinner, your host. And again, I

appreciate everybody for taking the time to be here today, and

for your willingness to be open-minded and learn more about

what it's really like to live with one of these

neurodegenerative diseases that cause dementia and how we as

family members and care partners and healthcare providers can

provide each one of these individuals with a higher

quality of life while they're progressing through these

diseases. So take care for now. Thanks again for being here, and

I will be back next week with another new episode for you. Bye

bye.