Why the Physical Spoke Is So Frequently Missed
The brain affected by dementia is working harder than it appears to be. What looks like cognitive slowing is often the nervous system expending enormous energy to manage basic processing. That leaves very little reserve for anything else, including tolerating physical discomfort.
At the same time, dementia progressively affects a person's ability to identify, locate, communicate, and describe pain. Someone in the early stages may say "I just don't feel good" without being able to say why. Someone in the middle or later stages may not be able to access the words at all. What remains is behavior. Agitation, resistance, crying out, hitting, rocking, facial grimacing, body guarding, sudden refusal of activities that were previously enjoyable. These are the language of unmanaged physical discomfort when words are no longer available.
This is not a behavior problem. It is a communication problem with a physical source.
The Wheel of Function Framework™ identifies the Physical Spoke as distinct from the other four spokes because physical status is often the most concrete and the most changeable piece of the engagement picture. You cannot change how dementia affects the brain. You can treat pain. You can time activities around energy levels. You can adjust positioning. That is where the Physical Spoke gives caregivers and care professionals the most immediate leverage.
Pain: The Driver That Hides in Plain Sight
Chronic pain is common in older adults. Arthritis, back pain, neuropathy, post-surgical pain, dental pain, skin breakdown, contractures, urinary tract infections. These conditions do not disappear when a person develops dementia. Their ability to communicate those conditions does.
Research consistently shows that people with dementia are undertreated for pain. Not because the pain is not there, but because the standard tools for assessing pain rely on self-report, and self-report becomes less reliable as dementia progresses. A person who cannot answer "on a scale of one to ten, how bad is the pain?" may still be in significant discomfort.
What pain looks like in dementia:
Behavioral signs that may indicate pain include:
- Agitation or restlessness that appears suddenly or worsens before or during activity
- Facial grimacing, furrowing of the brow, clenching of the jaw
- Guarding a specific body part, reluctance to move or be touched
- Crying out or vocalizing during movement or repositioning
- Resistance to activities that require standing, reaching, or hand use
- Decreased appetite or increased confusion (both can accompany physical pain)
- Changes in sleep pattern or nighttime restlessness
Acute vs. chronic pain: Chronic pain is the baseline that many people are living with every day. Acute pain is a new or worsening issue, an infection, a fall, a skin breakdown, a joint flare. Both matter. The distinction is important because chronic pain often requires a medication review with the care team, while acute pain may require immediate assessment for a new problem.
Pain vs. physical discomfort: These are not the same thing, and the difference matters for how you respond. Pain is a nociceptive signal. Something is triggering the nervous system's danger response: tissue damage, inflammation, nerve irritation, infection. It has a source, and that source needs to be found and treated. Physical discomfort is broader. It includes unpleasant physical states that don't involve a nociceptive signal: nausea, feeling too hot or too cold, bladder or bowel urgency, hunger, thirst, stiffness from prolonged positioning, dizziness, general malaise. Discomfort does not require a clinical intervention. It requires a caregiving response: offering water, adjusting the room temperature, a toileting check, repositioning. In dementia, both pain and discomfort present as behavior. The behavioral signs may look identical. What differs is the response. Pain needs a cause identified and addressed. Discomfort needs a state changed. Learning to distinguish between the two is one of the most practical skills in dementia care.
If you observe any of the behavioral signs above before or during an activity, stop. Do not push through. The body is communicating something the person cannot say in words, and it is worth listening to.
Fatigue: Physical and Cognitive
A person with dementia is tired in two distinct ways that overlap and compound each other.
Physical fatigue comes from deconditioning, disrupted sleep, illness, and the general demands of aging. If a person is not sleeping well, is not moving enough, or is recovering from any physical illness or infection, their physical reserve for activity is low.
Cognitive fatigue is less visible but just as real. The brain affected by dementia expends significantly more energy on basic processing tasks than a brain without dementia would. Tasks that feel effortless to others, following a conversation, recognizing a face, understanding a direction, require real cognitive work. By midday or early afternoon, many people with dementia have used a significant portion of their available cognitive energy. Attempting activities late in the day when that reserve is depleted is setting both the person and the caregiver up for failure.
What this means practically:
Time of day is one of the most underutilized tools in activity planning. Most people with dementia have their best cognitive and physical window mid-morning, roughly one to two hours after waking and after morning routines are complete. This is generally the best time for activities that require attention, participation, and engagement.
Late afternoon, particularly the period from 3 to 6 PM, is when both physical and cognitive fatigue are typically at their highest. It is also the period most associated with sundowning, the increase in confusion, agitation, and behavioral changes that many people with dementia experience in the late afternoon and evening. Activities that are attempted during this window frequently fail, not because the activity is wrong, but because the timing is wrong.
Before any activity, it is worth asking: is this person rested enough right now to participate? If the honest answer is no, the most effective intervention may be rest before engagement rather than engagement at the expense of what little reserve remains.
Medication Effects
Medications that are commonly prescribed for people with dementia, as well as for the conditions that often accompany aging, can significantly affect physical and cognitive readiness for activity.
Sedation and drowsiness are side effects of several medication classes, including antipsychotics, some antidepressants, sleep aids, and certain anticonvulsants. If a person consistently appears drowsy or unusually sedated at the time activities are typically offered, medication timing is worth discussing with the prescribing provider. In some cases, adjusting when a medication is taken can shift its sedating effects to a time when activity is not planned.
Orthostatic hypotension, a drop in blood pressure when moving from sitting to standing, is a common side effect of several blood pressure and cardiac medications. For a person with dementia who cannot describe dizziness or lightheadedness, orthostatic hypotension may present as sudden reluctance to stand, resistance to transitioning from a chair, fearfulness during movement, or a fall. If you notice consistent resistance around standing or transitions, this is worth flagging with the care team.
Nausea, dry mouth, and GI discomfort are side effects of many medications and can affect engagement in ways that are not immediately obvious. A person who feels nauseated may refuse food-related activities or simply appear uninterested and flat. Dry mouth affects comfort during singing, speaking, and oral activities. GI discomfort affects the ability to sit comfortably for any extended period.
This is not an area where caregivers need to make clinical decisions. It is an area where caregivers and care professionals need to be observant and willing to bring what they notice to the medical team. Medication review is a legitimate and often underused tool in improving quality of engagement for people with dementia.
Positioning, Comfort, Strength, and Balance
How the body is positioned before and during an activity affects far more than comfort. It affects alertness, respiratory capacity, upper extremity function, and the ability to remain engaged.
Positioning and seating: A person who is slumped, poorly supported, or leaning significantly to one side is not in an optimal position for engagement. Slumped posture compresses the diaphragm, reducing respiratory capacity and oxygen delivery to the brain. Asymmetrical positioning increases the physical demand of simply staying upright, leaving less energy available for participation. Before beginning any activity, take a moment to assess whether the person is sitting in a position that supports them. Small adjustments, a cushion, a lap tray, repositioning in the chair, can make a measurable difference.
Contractures and range of motion: Some people with dementia, particularly in later stages, develop contractures, a shortening and tightening of muscles and soft tissue that limits the range of joint motion. If a person has significant contractures in their hands, wrists, or shoulders, activities that require reaching, grasping, or fine motor use may cause discomfort or be physically impossible without modification. Knowing what a person can and cannot comfortably do with their hands and arms is essential before choosing a tabletop or craft activity.
Strength and balance: Fear of falling is a significant barrier to engagement in any activity that requires standing, walking, or dynamic balance. For a person with dementia who cannot articulate "I am afraid I will fall," that fear may present as refusal, agitation when approached, or stiffness and resistance during transitions. If strength or balance are concerns, activities that can be done safely in a supported seated position are often more successful than activities that require standing. The goal is never to push past legitimate physical limits. The goal is to work within them.
The Pre-Activity Physical Scan
Before beginning any activity, these questions take less than two minutes and address the physical factors most likely to interfere with engagement.
1. Is there any sign of pain right now? Look at the face. Is there grimacing, furrowing, or a tense jaw? Is the person guarding any part of their body? Have they been agitated or restless today in a way that seems physical rather than emotional? If yes, pause and assess before proceeding.
2. What is their energy level right now? Is this person alert and responsive, or are they drowsy, heavy-eyed, and minimally responsive? If they are clearly fatigued, consider whether rest before the activity would set them up for more success than proceeding now.
3. Is this a good time of day? Have you hit their typical high-function window, usually mid-morning? Or are you attempting an activity in the late afternoon when fatigue is typically at its highest? If timing is off, consider whether the activity can be shifted.
4. Have medications been taken, and could any side effects be in play? Has the person taken a medication in the last one to two hours that could be causing drowsiness, dizziness, or GI discomfort? If they seem more sedated than usual, medication timing may be a factor.
5. Are they comfortably and safely positioned? Are they sitting upright and supported? Is there adequate back and arm support? Are they leaning significantly to one side? Take thirty seconds to adjust positioning before beginning if needed.
6. Does this activity match their current physical capacity? Does the activity require fine motor use, standing, reaching, or sustained grip? Do they have the strength, range of motion, and balance to participate safely? If the answer is uncertain, choose a version of the activity that reduces physical demand without removing engagement.
If you work through these six questions and identify a physical issue, address it first. A conversation with the care team, a repositioning, a brief rest period, or a modification to the activity is not a failure. It is the application of clinical thinking to a situation that needs it.
When You Find Something
The most important thing to understand about the Physical Spoke is that findings here are actionable.
If the person appears to be in pain and it is not being managed, that is a conversation to have with the medical team. Bring specific behavioral observations: when the pain behaviors occur, what seems to trigger them, how long they last, whether they respond to repositioning or rest. That level of detail helps a provider make a clinical decision.
If fatigue is consistently interfering with engagement, look at sleep. Is the person sleeping at night? Are there factors in their environment or routine that are disrupting sleep? Is the activity schedule aligned with their natural energy pattern?
If medication side effects are suspected, document what you observe and when. Bring a written record to the next provider visit. Medication adjustments for quality of life are appropriate and worth advocating for.
If strength, balance, or range of motion are limiting participation, a referral to physical or occupational therapy may be appropriate. Therapy can improve function, identify adaptive equipment, and recommend activity modifications that expand what is safely possible.
None of these are small things. All of them are within reach.
What Comes Next
The Physical Spoke is often the difference between an activity that fails and one that does not. Not because the activity itself changes, but because the body underneath it is either supported or it is not.
When pain is managed, when activities are timed to match energy, when positioning is addressed and physical capacity is respected, the conditions for engagement shift in ways that can feel immediate and significant.
Part 5 in this series covers the Cognitive Spoke, specifically how the level of cognitive demand built into an activity determines whether engagement is possible, and what to adjust when the mismatch between demand and capacity is driving refusal.
If You Are Ready for a Deeper Conversation
If you are looking at what is happening with your person and you want help mapping a way forward using the Wheel of Function Framework™, a discovery call is where we start.
Thirty minutes. Free. Specific to your situation.
About the Author
Carlyn Lenfestey, PT, MPT, CDP, CADDCT is the founder of A Better Way: Dementia Care Solutions. The Wheel of Function Framework™ is a clinically grounded five-spoke model developed to help caregivers and care professionals read what is actually driving engagement and behavior in dementia care before defaulting to behavioral intervention.
Notes
- Achterberg, W., Lautenbacher, S., Husebo, B., Erdal, A., & Herr, K. (2020). Pain in dementia. Pain Reports, 5(1), e803. https://doi.org/10.1097/PR9.0000000000000803
- Gitlin, L. N., Winter, L., Burke, J., Chernett, N., Dennis, M. P., & Hauck, W. W. (2008). Tailored activities to manage neuropsychiatric behaviors in persons with dementia and reduce caregiver burden: A randomized pilot study. The American Journal of Geriatric Psychiatry, 16(3), 229–239. https://doi.org/10.1097/01.jgp.0000300629.35408.94
- Husebo, B. S., Ballard, C., Sandvik, R., Nilsen, O. B., & Aarsland, D. (2011). Efficacy of treating pain to reduce behavioural disturbances in residents of nursing homes with dementia: Cluster randomised clinical trial. BMJ, 343, d4065. https://doi.org/10.1136/bmj.d4065
- Smith, T. O., Lockey, D., Johnson, H., Rice, L., Heard, J., & Irving, L. (2023). Pain management for people with dementia: A cross-setting systematic review and meta-ethnography. British Journal of Pain, 17(1), 36–51. https://doi.org/10.1177/20494637221119588
- Teri, L., Gibbons, L. E., McCurry, S. M., Logsdon, R. G., Buchner, D. M., Barlow, W. E., Kukull, W. A., LaCroix, A. Z., McCormick, W., & Larson, E. B. (2003). Exercise plus behavioral management in patients with Alzheimer disease: A randomized controlled trial. JAMA, 290(15), 2015–2022. https://doi.org/10.1001/jama.290.15.2015
- Warden, V., Hurley, A. C., & Volicer, L. (2003). Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) scale. Journal of the American Medical Directors Association, 4(1), 9–15. https://doi.org/10.1097/01.JAM.0000043422.31640.F7
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