Repositioning Dementia Patients Who Have Lost Trunk Control: A Guide for Caregivers

Published on December 3, 2023

Updated on December 17, 2023

Dementia is a condition that makes it hard for people to remember things, think clearly, and do everyday tasks. Dementia is caused by changes in the brain that affect how the brain cells work. There are different types of dementia, such as Alzheimer's disease, vascular dementia, and Lewy body dementia. Some of the symptoms of dementia are confusion, memory loss, mood changes, and trouble speaking or understanding.

Trunk control is the ability to move and balance the upper part of your body, such as your chest, back, and shoulders. Trunk control is important for posture and mobility, which means how you sit, stand, and move around. Having good trunk control helps you breathe better, avoid pain, and prevent injuries.

Some people with dementia may lose trunk control over time. This can happen because of many reasons, such as muscle weakness, stiffness, pain, or poor blood flow. Losing trunk control can make it hard for people to sit up, roll over, or change positions. This can lead to problems such as pressure ulcers, , falls, and infections. Pressure ulcers are sores that form on the skin when there is too much pressure on one area. are when the muscles or joints become tight and cannot stretch. Falls are when people lose their balance and fall down. Infections are when germs enter the body and cause illness.

If you are a caregiver for someone with dementia who has lost trunk control, you may wonder how to help them. Repositioning is one of the ways you can help. Repositioning means moving or turning the person to a different position. Repositioning can help improve the person's comfort, skin health, and blood flow. It can also prevent or treat pressure ulcers, contractures, falls, and infections.

In this article, we will share some tips for repositioning dementia patients who have lost trunk control. These tips are based on the latest research and best practices. We hope these tips will help you provide better care for your loved one.

Tip 1: Assess the Patient’s Needs and Abilities

Before you reposition someone with dementia who has lost trunk control, you need to assess their needs and abilities. This means you need to check how well they can think, move, and feel. This will help you decide how often and how to reposition them.

To evaluate the patient's level of cognitive impairment, you need to see how well they can remember, understand, and communicate. Cognitive impairment means having trouble with thinking skills. Some people with dementia may have mild cognitive impairment, which means they can still do some things by themselves. Others may have severe cognitive impairment, which means they need a lot of help and supervision.

To evaluate the patient's physical function, you need to see how well they can use their muscles and joints. Physical function means having the ability to move and balance. Some people with dementia may have good physical function, which means they can still walk, sit, and stand. Others may have poor physical function, which means they cannot move much or at all.

To evaluate the patient's pain, you need to see how much they hurt and where. Pain means feeling or distress in the body. Some people with dementia may have no pain, which means they are comfortable and relaxed. Others may have mild, moderate, or severe pain, which means they are unhappy and stressed.

The factors that influence the frequency and method of repositioning are the things that affect how often and how you need to move the person. Some of the factors are:

  • Skin integrity: This means how healthy the skin is. If the skin is intact, smooth, and moist, it has good integrity. If the skin is broken, dry, or red, it has poor integrity. Poor skin integrity can lead to pressure ulcers, which are sores that form on the skin when there is too much pressure on one area. You need to reposition the person more often and more gently if they have poor skin integrity.
  • Comfort: This means how well the person feels in their position. If the person is calm, relaxed, and happy, they are comfortable. If the person is restless, tense, or angry, they are uncomfortable. Uncomfortable positions can lead to pain, stiffness, and . You need to reposition the person more often and more carefully if they are uncomfortable.
  • Safety: This means how well the person is protected from harm. If the person is stable, secure, and supported, they are safe. If the person is unstable, loose, or unsupported, they are unsafe. Unsafe positions can lead to falls, injuries, and infections. You need to reposition the person more often and more firmly if they are unsafe.

To assess the patient's needs and abilities, you can use standardized tools and scales. These are ways to measure and record the patient's condition using numbers, words, or pictures. Some of the tools and scales you can use are:

  • The Braden Scale: This is a tool to measure the risk of developing pressure ulcers. It has six categories: sensory perception, moisture, activity, mobility, nutrition, and friction and shear. Each category has a score from 1 to 4, with 1 being the worst and 4 being the best. The total score ranges from 6 to 23, with 6 being the highest risk and 23 being the lowest risk. You can use the Braden Scale to decide how often and how to reposition the person to prevent pressure ulcers.
  • The Mini-Mental State Examination (MMSE): This is a tool to measure the level of cognitive impairment. It has 11 questions that test the person's orientation, memory, attention, language, and visual skills. Each question has a score from 0 to 1 or 0 to 3, depending on the difficulty. The total score ranges from 0 to 30, with 0 being the most impaired and 30 being the least impaired. You can use the MMSE to decide how to communicate and involve the person in the repositioning process.
  • The : This is a tool to measure the stage of dementia. It has seven stages that describe the person's abilities and behaviors. Each stage has a number from 1 to 7, with 1 being the mildest and 7 being the most severe. You can use the to decide how much help and supervision the person needs during repositioning.
  • The PAINAD Scale: This is a tool to measure the pain in people who cannot speak. It has five categories: breathing, vocalization, facial expression, body language, and consolability. Each category has a score from 0 to 2, with 0 being the best and 2 being the worst. The total score ranges from 0 to 10, with 0 being no pain and 10 being severe pain. You can use the PAINAD Scale to decide how to relieve and manage the person's pain during repositioning.
  • The Numeric Rating Scale (NRS): This is a tool to measure the pain in people who can speak. It has a scale from 0 to 10, with 0 being no pain and 10 being the worst pain imaginable. You can use the NRS to ask the person how much pain they have and how it changes during repositioning.

Tip 2: Choose the Appropriate Equipment and Environment

Another way to help someone with dementia who has lost trunk control is to choose the right equipment and environment for repositioning. This means you need to pick the things and places that make it easier, safer, and more comfortable to move the person.

Some of the equipment you can use for repositioning are:

  • Beds: These are where the person sleeps and rests. You can choose beds that have special features, such as adjustable height, electric controls, or side rails. These can help you lift, lower, or tilt the person to different positions. You can also use beds that have alarms or sensors, which can alert you if the person tries to get out of bed or falls off the bed.
  • Mattresses: These are what the person lies on in bed. You can choose mattresses that have different levels of firmness, softness, or thickness. You can also choose mattresses that have special materials, such as foam, gel, or air. These can help reduce the pressure on the person's skin and prevent pressure ulcers. You can also use mattresses that have heaters or coolers, which can adjust the temperature of the person's body and keep them warm or cool.
  • Pillows: These are what the person puts under their head, neck, or other body parts in bed. You can choose pillows that have different shapes, sizes, or fillings. You can also choose pillows that have special covers, such as waterproof, washable, or hypoallergenic. These can help support, cushion, or align the person's body and prevent pain, stiffness, or allergies.
  • Cushions: These are what the person sits on in a chair, wheelchair, or sofa. You can choose cushions that have different designs, colors, or patterns. You can also choose cushions that have special features, such as straps, handles, or pockets. These can help secure, lift, or carry the person to different places. You can also use cushions that have pressure-relieving, friction-reducing, or temperature-regulating properties, which can help prevent pressure ulcers, skin tears, or infections.
  • Sheets: These are what the person covers themselves with in bed. You can choose sheets that have different fabrics, textures, or weights. You can also choose sheets that have special qualities, such as breathable, absorbent, or antibacterial. These can help keep the person dry, clean, or healthy. You can also use sheets that have contrasting colors, patterns, or labels, which can help the person recognize, locate, or use them.
  • Blankets: These are what the person wraps themselves with in bed or on a sofa. You can choose blankets that have different materials, styles, or sizes. You can also choose blankets that have special functions, such as electric, weighted, or sensory. These can help warm, calm, or stimulate the person. You can also use blankets that have familiar smells, sounds, or pictures, which can help the person remember, relax, or enjoy them.
  • Lifts: These are what you use to move the person from one place to another, such as from the bed to the chair, or from the chair to the toilet. You can choose lifts that have different types, such as manual, mechanical, or hydraulic. You can also choose lifts that have different parts, such as slings, straps, or hooks. These can help you transfer, position, or support the person safely and easily.

Some of the things you need to consider when choosing the equipment and environment for repositioning are:

  • The person's needs and preferences: You need to think about what the person likes, dislikes, wants, or needs. For example, some people may prefer softer or firmer mattresses, or warmer or cooler blankets. You need to ask the person for their opinion, or observe their behavior, or look for clues, such as facial expressions, gestures, or sounds. You need to respect the person's choices, or explain why you need to change them.
  • The caregiver's abilities and limitations: You need to think about what you can or cannot do, or what you need or do not need. For example, some caregivers may have difficulty lifting or moving the person, or may need extra help or guidance. You need to be honest with yourself, or ask for feedback, or seek advice. You need to use the equipment and environment that suit your skills, or improve your knowledge, or get support.
  • The cost and availability of the equipment and environment: You need to think about how much money you have or can spend, or where you can get or find the equipment and environment. For example, some equipment or environment may be expensive or hard to obtain, or may need maintenance or repair. You need to compare the prices and quality, or look for discounts or donations, or apply for grants or loans. You need to use the equipment and environment that fit your budget, or save your money, or find resources.

To choose the appropriate equipment and environment for repositioning, you can use evidence-based guidelines and best practices. These are recommendations and tips that are based on the latest research and expert opinions. Some of the guidelines and best practices you can use are:

  • The National Pressure Ulcer Advisory Panel (NPUAP): This is a group of experts who provide information and education on how to prevent and treat pressure ulcers. You can use their website to learn about the causes, risk factors, and prevention strategies of pressure ulcers. You can also use their tools and resources, such as the pressure ulcer staging system, the prevention points, and the support surface standards initiative.
  • The European Pressure Ulcer Advisory Panel (EPUAP): This is a group of experts who provide guidance and leadership on how to improve the quality of care for pressure ulcers. You can use their website to learn about the best practices and standards of care for pressure ulcers. You can also use their publications and products, such as the international guidelines, the quick reference guide, and the educational slides.
  • The Pan Pacific Alliance (PPPIA): This is a group of experts who provide collaboration and coordination on how to reduce the burden of pressure ulcers. You can use their website to learn about the current issues and challenges of pressure ulcers. You can also use their events and activities, such as the biennial conference, the webinars, and the awards.

Examples of using Squishmallows as a wonderful tool

On Reddit, u/general_irma_jewelry shared her story about how she repositions her grandmother who is greater than 100 years with her Repositioning Tip post:

My grandmother is well over 100 and receiving . She has end-stage dementia and is in a state of cachexia, so she is skeletally thin and weak, and therefore a huge pressure sore risk.

My cousin had gotten her a large Squishmallow before she deteriorated, and I bought her a little 5″ one to place in her hand to ease some of the edema from her contractures without forcing her hand open uncomfortably.

As she started to decline and lost the energy to shift her weight and lift her arms fully, I improvised and started using the Squishmallows to reposition her, support her, and cushion her pressure points.

It felt silly at first, but her hospice RN case manager loved it! Here's why:

  • Squishmallows can be squished (duh) to conform to whatever space they need to fill
  • They're velvety soft (my grandma's skin is tissue paper thin and prone to tears)
  • They come in different shapes and sizes–the 5″ fits comfortably between her knees, which are very bony and pressed together nearly all the time.
  • They can be washed (hand or machine washed in cool water on the gentle cycle, though the manufacturer says not to machine wash).

Other positives:

  • They are adorable and come in a seemingly endless variety. I think particularly of children, but they could also be matched to hobbies, interests, favorite colors, or whatever things the person likes.
  • They can be given as gifts and therefore hold some sentimental value and/or provide some emotional comfort.
  • They're conversation starters. Though she is non-verbal and typically not very alert, my grandmother does relax when spoken to, so I think I will get her a Halloween Squishmallow to invite some engagement from the other residents and visitors at her assisted living facility when I'm not able to be there.

Anyway, point being, Squishmallows are surprisingly useful!

u/general_irma_jewelry from Repositioning Tip post.

The poster was kind enough to share the following pictures to help all of understand the benefits of using Squishmallows:

Tip 3: Apply the Correct Techniques and Principles

The third way to help someone with dementia who has lost trunk control is to apply the correct techniques and principles for repositioning. This means you need to move the person in a way that is safe, comfortable, and effective.

Some of the techniques and principles you can use for repositioning are:

  • Alignment: This means keeping the person's body in a straight line, without twisting or bending. Alignment can help prevent pain, stiffness, and pressure ulcers. To achieve alignment, you need to make sure the person's head, shoulders, hips, knees, and ankles are in line with each other. You can use pillows, cushions, or rolled towels to support the person's body parts and keep them in alignment.
  • Support: This means holding the person's body parts firmly and gently, without squeezing or pulling. Support can help prevent injuries, falls, and skin tears. To provide support, you need to use your hands, arms, or legs to hold the person's body parts, such as their head, neck, trunk, or limbs. You can also use equipment, such as slide sheets, transfer belts, or lifts, to support the person's weight and reduce friction.
  • Stabilization: This means keeping the person's body steady and balanced, without shaking or tipping. Stabilization can help prevent accidents, spills, and infections. To ensure stabilization, you need to make sure the person's body is secure and stable on the surface, such as the bed, chair, or toilet. You can also use equipment, such as side rails, straps, or locks, to stabilize the person's position and prevent them from sliding or falling.

Some of the types of repositioning you can do are:

  • Side-lying: This means moving the person to lie on their side, either left or right. Side-lying can help relieve pressure on the back and buttocks, and improve blood flow and breathing. To do side-lying, you need to roll the person gently to one side, using a slide sheet or a reducing sheet. You need to place pillows or cushions under the person's head, neck, shoulder, arm, hip, knee, and ankle to keep them in alignment and support. You need to change the person's side every two hours or as needed.
  • Supine: This means moving the person to lie on their back, facing up. Supine can help relax the muscles and joints, and allow the person to see their surroundings. To do supine, you need to roll the person gently to their back, using a slide sheet or a reducing sheet. You need to place pillows or cushions under the person's head, neck, shoulders, arms, lower back, legs, and feet to keep them in alignment and support. You need to change the person's position every two hours or as needed.
  • Prone: This means moving the person to lie on their stomach, facing down. Prone can help stretch the chest and abdomen, and improve lung function and digestion. To do prone, you need to roll the person gently to their stomach, using a slide sheet or a reducing sheet. You need to place pillows or cushions under the person's head, chest, abdomen, pelvis, legs, and feet to keep them in alignment and support. You need to monitor the person's breathing and comfort closely, and change their position every two hours or as needed.
  • Sitting: This means moving the person to sit up, either in bed or in a chair. Sitting can help stimulate the brain and senses, and promote social interaction and activity. To do sitting, you need to lift the person gently to a sitting position, using a slide sheet, a transfer belt, or a lift. You need to place pillows or cushions behind the person's back, under their arms, and between their legs to keep them in alignment and support. You need to check the person's skin and comfort regularly, and change their position every hour or as needed.

To communicate with the person and involve them in the repositioning process, you can use clear and simple instructions, cues, and demonstrations. These can help the person understand what you are doing, why you are doing it, and how they can help. Some of the ways you can communicate are:

  • Instructions: These are words that tell the person what to do or what to expect. You can use short and simple sentences, such as “I'm going to help you roll to your side”, or “Please lift your arm for me”. You can use a calm and gentle tone of voice, and speak slowly and clearly. You can repeat the instructions if needed, or rephrase them if the person does not understand.
  • Cues: These are signs that remind the person what to do or what to expect. You can use gestures, such as pointing, nodding, or smiling, or sounds, such as clapping, humming, or singing. You can also use objects, such as pictures, symbols, or colors, or touch, such as tapping, stroking, or hugging. You can use cues that are familiar and meaningful to the person, and match them with your instructions.
  • Demonstrations: These are actions that show the person what to do or what to expect. You can use your own body, such as moving your arm, leg, or head, or the person's body, such as lifting, bending, or turning their arm, leg, or head. You can also use equipment, such as a slide sheet, a transfer belt, or a lift, or the environment, such as the bed, the chair, or the toilet. You can use demonstrations that are simple and safe, and match them with your instructions and cues.

Tip 4: Monitor and Document the Outcomes and Complications

The last way to help someone with dementia who has lost trunk control is to monitor and document the outcomes and complications of repositioning. This means you need to check and record how the person's health and well-being change after repositioning.

Some of the outcomes and complications you can monitor and document are:

  • Skin condition: This means how the person's skin looks and feels. You can check the person's skin for signs of pressure ulcers, such as redness, swelling, blisters, or wounds. You can also check the person's skin for signs of skin tears, such as cuts, bruises, or bleeding. You can use a tool called the Braden Scale to measure the risk of developing pressure ulcers. You can use a tool called the Skin Tear Audit Research (STAR) tool to measure the severity of skin tears. You can write down the person's skin condition on a chart or a form, and take pictures if needed.
  • Pain level: This means how much the person hurts and where. You can ask the person how much pain they have and where it is, using a tool called the Numeric Rating Scale (NRS). You can also observe the person's behavior and expression for signs of pain, such as moaning, grimacing, or frowning. You can use a tool called the Pain Assessment in Advanced Dementia (PAINAD) Scale to measure the pain in people who cannot speak. You can write down the person's pain level on a chart or a form, and use stickers or symbols if needed.
  • Mobility status: This means how well the person can move and balance. You can check the person's ability to walk, sit, stand, or change positions. You can also check the person's muscle strength, joint range, and posture. You can use a tool called the Functional Independence Measure (FIM) to measure the person's mobility status. You can write down the person's mobility status on a chart or a form, and use numbers or letters if needed.
  • Quality of life: This means how happy and satisfied the person is with their life. You can ask the person how they feel about their health, comfort, activities, and relationships. You can also observe the person's mood and behavior for signs of happiness or sadness, such as smiling, laughing, or crying. You can use a tool called the Quality of Life in Alzheimer's Disease (QoL-AD) to measure the person's quality of life. You can write down the person's quality of life on a chart or a form, and use words or pictures if needed.

Some of the common outcomes and complications of repositioning are:

  • Pressure ulcers: These are sores that form on the skin when there is too much pressure on one area. Pressure ulcers can cause pain, infection, and tissue damage. They can also make it harder for the person to heal and recover. Pressure ulcers can be prevented by repositioning the person regularly and using the right equipment and environment. Pressure ulcers can be treated by cleaning and dressing the wounds, relieving the pressure, and giving the person or painkillers if needed.
  • Contractures: These are when the muscles or joints become tight and cannot stretch. Contractures can cause pain, stiffness, and deformity. They can also make it harder for the person to move and balance. Contractures can be prevented by repositioning the person regularly and using the right techniques and principles. Contractures can be treated by massaging and stretching the muscles and joints, applying heat or cold, and giving the person anti-inflammatory or muscle relaxant drugs if needed.
  • Falls: These are when the person loses their balance and falls down. Falls can cause injuries, such as fractures, bruises, or bleeding. They can also make the person afraid and anxious. Falls can be prevented by repositioning the person regularly and using the right equipment and environment. Falls can be treated by checking and treating the injuries, comforting and reassuring the person, and giving the person painkillers or sedatives if needed.
  • Infections: These are when germs enter the body and cause illness. Infections can cause fever, chills, cough, or diarrhea. They can also make the person weak and tired. Infections can be prevented by repositioning the person regularly and using the right equipment and environment. Infections can be treated by giving the person or antiviral drugs, fluids, and nutrition if needed.

To improve the repositioning practice and prevent adverse events, you can use regular and systematic evaluations, feedback, and adjustments. These can help you see what works and what does not work, and how to make changes and improvements. Some of the ways you can evaluate, give feedback, and adjust are:

  • Evaluations: These are ways to measure and compare the outcomes and complications of repositioning. You can use tools and scales, such as the ones mentioned above, to evaluate the person's skin condition, pain level, mobility status, and quality of life. You can also use tools and scales, such as the Patient Safety Indicators or the Adverse Event Reporting System, to evaluate the occurrence and severity of pressure ulcers, contractures, falls, and infections. You can do the evaluations before and after repositioning, and at regular intervals, such as daily, weekly, or monthly.
  • Feedback: These are ways to share and discuss the results and findings of the evaluations. You can give feedback to yourself, the person, and other caregivers, such as family members, nurses, or doctors. You can also receive feedback from them. You can use words, numbers, or graphs to show the feedback. You can also use praise, encouragement, or suggestions to improve the feedback. You can give and receive feedback verbally, in writing, or electronically, such as by phone, email, or online.
  • Adjustments: These are ways to change and improve the repositioning practice based on the feedback. You can adjust the frequency, method, or duration of repositioning. You can also adjust the equipment, environment, or communication used for repositioning. You can make small or big adjustments, depending on the feedback. You can also test and monitor the effects of the adjustments. You can make adjustments as soon as possible, or as often as needed.

Conclusion

Repositioning is a way to help someone with dementia who has lost trunk control. Trunk control is the ability to move and balance the upper part of your body. Losing trunk control can make it hard for the person to sit up, roll over, or change positions. This can lead to problems such as pressure ulcers, contractures, falls, and infections.

In this article, we have shared some tips for repositioning dementia patients who have lost trunk control. These tips are:

  • Tip 1: Assess the patient's needs and abilities. This means you need to check how well they can think, move, and feel. This will help you decide how often and how to reposition them.
  • Tip 2: Choose the appropriate equipment and environment. This means you need to pick the things and places that make it easier, safer, and more comfortable to move the person.
  • Tip 3: Apply the correct techniques and principles. This means you need to move the person in a way that is safe, comfortable, and effective.
  • Tip 4: Monitor and document the outcomes and complications. This means you need to check and record how the person's health and well-being change after repositioning.

Repositioning can have benefits and challenges for both the patient and the caregiver. Some of the benefits are:

  • Repositioning can improve the person's comfort, skin health, and blood flow. It can also prevent or treat pressure ulcers, contractures, falls, and infections.
  • Repositioning can stimulate the person's brain and senses, and promote social interaction and activity. It can also improve the person's mood, behavior, and quality of life.
  • Repositioning can reduce the caregiver's stress, fatigue, and injury. It can also increase the caregiver's confidence, satisfaction, and skills.

Some of the challenges are:

  • Repositioning can be hard, tiring, and time-consuming for the caregiver. It can also be confusing, scary, or painful for the person.
  • Repositioning can require special equipment, environment, or communication. It can also require regular and systematic evaluations, feedback, and adjustments.
  • Repositioning can have different outcomes and complications for different people. It can also have different effects depending on the frequency, method, or duration of repositioning.

If you want to learn more about repositioning dementia patients who have lost trunk control, you can use some additional resources and references. These are:

  • The Alzheimer's Association: This is a group that provides information and support for people with Alzheimer's disease and other types of dementia. You can use their website to learn more about dementia, its symptoms, stages, and treatments. You can also use their services, such as the 24/7 helpline, the online community, and the local chapters.
  • The Bladder and Bowel Foundation Community: This is a group that provides advice and support for people with bladder and bowel problems. You can use their website to learn more about bladder and bowel health, its causes, effects, and management. You can also use their forums, blogs, and podcasts to share your experiences and questions with other people.
  • The StatPearls: This is a group that provides free online medical education and articles. You can use their website to learn more about medical topics, such as pressure ulcers, contractures, falls, and infections. You can also use their quizzes, videos, and images to test your knowledge and skills.

We hope this article has helped you understand and practice repositioning dementia patients who have lost trunk control. We hope you and your loved one can enjoy a better and happier life. Thank you for reading. 

Resources

Braden Scale (PDF)

Mini-Mental State Exam (MMSE) Alzheimer's / Dementia Test: Administration, Accuracy and Scoring

FAST Scale

Skin Tear Audit Research (STAR)

Functional Independence Measure (FIM)

Quality of Life in Alzheimer's Disease (QoL-AD)

Alzheimer's Association

Bladder and Bowel Community

StatPearls

Understanding Hospice Care: Is it Too Early to Start Hospice?

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Picking a hospice agency to provide hospice services

Medicare — Find and compare hospice providers

The Importance of Caregiver Journaling

Reporting Changes of Condition to Hospice

Eldercare Locator: a nationwide service that connects older Americans and their caregivers with trustworthy local support resources

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Pain Assessment in Hospitalized Older Adults With Dementia and Delirium

Pain Assessment in Dementia – International Association for the Study of Pain (IASP)

Pain Assessment in People with Dementia: AJN The American Journal of Nursing

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Pain Assessment in Advanced Dementia Scale (PAINAD) – MDCalc

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Adult Nonverbal Pain Scale (NVPS) Tool for pain assessment

Assessing pain in patients with cognitive impairment in acute care

FLACC Pain Scale

Pain Assessment in Advanced Dementia Scale (PAINAD)

Pain Assessment in Non-Communicative Adult Palliative Care Patients

Pain Assessment in People with Dementia

Tools for Assessment of Pain in Nonverbal Older Adults with Dementia: A State-of-the-Science Review

Understanding the physiological effects of unrelieved pain

Untreated Pain, Narcotics Regulation, and Global Health Ideologies

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