Holler if it hurts? Strategies for identifying & assessing pain in people with dementia

Hello everyone,

Much research has shown that people with dementia are at an increased risk for having their pain under-assessed and under-treated, leading to serious physical and psychosocial consequences including:

  • Gait impairment (leading to increased fall risk)
  • Decreased appetite
  • Sleep disturbances
  • Agitation
  • Physical combativeness
  • Wandering
  • Decrease in daily activities
  • Impaired cognition
  • Verbal aggression
  • Depression
  • Social isolation
  • Learned helplessness

(Shega J., Emanuel L., Vargish L., Levine S.K., Bursch H., Herr K., Karp J.F. & Weiner D.K.  (2007) Pain in persons with dementia: complex, common, and challenging. The Journal of Pain 8, 373-387.)

 If you and/or staff observe some of these behaviors in a resident with dementia, do not assume it is part of the disease. Rather, take some time to assess the person for pain.

While self-reporting pain-rating scales such as Verbal Rating Scales and Facial Pain Scales remain the ‘gold standard’ when assessing pain in older adults, people experiencing moderate to severe stages of dementia may be unable to communicate the existence and severity of their pain.

 A widely used tool called “PAINAD” (Pain Assessment in Advanced Dementia, developed by Victoria Warden, Ann C. Hurley, and Ladislav Volicer) can be used to identify and assess pain in older adults who are unable to verbally communicate. Click here for the tool: http://www.mghpcs.org/eed_portal/Documents/Pain/Critical_Care/Dementia_Pain_Tool.pdf

To use the tool, caregivers observe the patient during periods of activity and record behavioral indicators of pain:

  • breathing (normal, labored, noisy?)
  • negative vocalization (none, groaning, crying?)
  • facial expression (smiling, sad, grimacing?)
  • body language (relaxed, tense, pacing, rigid?), and
  • consolability (no need to console, distracted by voice/touch, unable to console?)

 Once you’ve identified and assessed the pain in a patient, you’ll need to plan an intervention. Some behaviors, such as verbal agitation, pacing and restlessness, improve most with pain treatment. Other behaviors such as hitting, kicking, scratching respond less to treatment.

We’ll discuss some pain interventions next week. In the meantime, don’t forget to send us your DICE examples to win a prize for your facility!!!

Have great week!

Aligning patient-centered activities with CMS guidelines

Most have you have probably been paying attention to the new CMS guidelines for 2017. One of the new guidelines (f-tag F679) relates to activities: “The facility must provide, based on the comprehensive assessment and care plan and the preferences of each resident, an ongoing program to support residents in their choice of activities, both facility-sponsored group and individual activities and independent activities, designed to meet the interests of and support the physical, mental, and psychosocial well-being of each resident, encouraging both independence and interaction in the community.”

This is a challenge for most staff working with nursing home residents, and is far more challenging when those residents are experiencing BPSD.  It can seem an overwhelming task when dealing with so many different people with a variety of needs, so we hope this week’s tidbit will help guide you and provide ideas for ways create activities and practical plans for your residents that will meet the CMS guideline.

When choosing an activity for a resident with BPSD, keep in mind that the intervention should match the functional skills of the person to promote movement and an opportunity for success. In Neurodevelopmental Sequencing Program (NDSP), individuals are placed in a program level based on an assessment of their level of functioning. You can read the full paper by Linda Buettner, CTRS, PhD and Ann Kolanowski, PhD, RN, about this at:  http://www.gnjournal.com/article/S0197-4572(02)09019-5/abstract

See the table below from the paper to help determine functional levels and appropriate activities for each:

Level I: Strengths: Ambulatory but with overhead movements more difficult; decreased endurance level; able to change positions independently; usually continent; assists with personal hygiene

Challenges: At risk for falls; slower gross motor movements; balance problem; needs reminders to maintain posture; strength and endurance may be decreasing; may have muscle tension or loss of hand control (weaker grasp)

Interventions:

  • Active sports and games of choice
  • Fall prevention
  • Cognitive stimulation programs with motor component
  • Geriatric exercise
  • Walking group
  • Air mat therapy (balance and strength or relaxation)
  • Kitchen activities
  • Assisting with special events: decorating, food preparation, pushing wheelchairs, greeting and assisting
  • Leisure lounge and leisure education

Level II: Strengths: May have trunk control and head-neck control; able to use upper extremities; fair range of motion and strength; may be able to independently move wheelchair; can roll over segmentally

Challenges: Unable to ambulate without maximal assistance; may have poor posture habits; decreasing visual acuity; may use palmar grasp; reduced fine motor control; incontinence; needs assistance for bathing, dressing, toileting

Interventions:

  • Geriatric exercise to music
  • Adapted sports/games
  • Food preparation activities
  • Air mat therapy (balance and strength or relaxation)
  • Prepare for special sensory events
  • Stimulation box and simple pleasures activities

Level III: Strengths: Conscious; able to respond to familiar stimulation; may be able to make eye contact

Challenges: Non-ambulatory; poor trunk control; poor head and neck control; poor range of motion; poor strength, e.g. head lag; head or knee contracture; poor vision and hearing; may be able to roll (or may log roll); incontinent

Interventions:

  • Passive and active range of motion
  • Massage
  • Positioning (e.g. air mat, bean bag chair)
  • Reaching activities
  • Air mat therapy
  • Sensory integration, special sensory events, and tactile simple pleasure items

In another paper, Recreational Activities to Reduce Behavioral Symptoms in Dementia,   (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2780321/) the authors emphasize that activity interventions are most effective in the prevention of behavioral symptoms and less so during a behavioral crisis. Second, they need to be provided on a routine basis to prevent the behavioral symptoms from recurring. Third, interventions are most successful when they are matched to a person’s interests (remember that family members are a rich source of information about the activity preferences their loved ones) and functional abilities and balance throughout the day with periods of rest. Finally, these interventions require a partnership between nurses, nursing assistants, activity directors, recreational therapists and physicians to be successful.

If you are looking for some new ideas for activities to do with your residents, Table 2 from the paper lists recreational activities commonly enjoyed by people with early and moderate dementia. A few from the list include:

  • Table games
  • Chair volleyball
  • Horse shoes
  • Music lessons
  • Cooking
  • Construction crafts
  • Dancing
  • Gardening
  • Putting green/adapted golf
  • Relaxation session

We hope this helps you think about the activities that are most appropriate for each individual resident at your facility, and starts a dialogue between your staff members about ways to address BPSD through activity interventions. Please share your thoughts and ideas with us on this important topic.

All hands on deck-Working with champions to reduce BPSD

To change how everyone in your settings manages behavioral and psychological symptoms associated with dementia, we need all hands on deck!  Your identified champions are your leaders and role models.  These individuals play a vital role in implementing the strategies we want all staff to use when working with residents with behavior and psychological symptoms of dementia.

Champions (along with other stakeholders such as administrators, nurses and social workers) not only act as role models, but also cheerleaders, teachers and observers. Encourage your champions to take a few minutes and watch the ways in which their co-workers interact with residents to make sure they are following the resident’s care plan and using person centered approaches during care interactions (e.g., having the individual participate in his or her bathing and dressing; walking the individuals to the bathroom regularly to avoid agitation; or singing the resident’s favorite song during an unpleasant care interaction).  Acknowledge, praise and reward the individual when an effective behavioral intervention is implemented.  Examples of such acknowledgments include:

  • A simple “Great job, keep up the good work!”
  • A write up in a newsletter recognizing their exemplary work
  • A Starbucks gift certificate (or an alternative treat!)

Conversely, when champions witness missteps by staff during resident interactions, they should turn these into opportunities to teach their colleagues a better way to handle those situations.  Role modeling a better way is one of the best ways to make new learning happen.  For example, when a caregiver tells a resident who is repeatedly getting up and down in an unsafe fashion to sit down they might fall…. And the resident persists and gets more agitated….it may be helpful to step in and show that taking the resident for a walk or having him or her stand and sing and dance for a minute or two may decrease the agitation.

Staying positive, encouraging and persistent is key to changing the habits of staff and building a strong team of caregivers who help one another.

Decreasing use of antipsychotic medications….

We thought you would find this recent article interesting as you and your staff work to improve the lives of your residents with dementia and decrease the use of antipsychotic medications as much as possible. The article discusses the results of several research trials and offers some approaches you may like to try:

http://www.npr.org/sections/health-shots/2017/07/19/537907127/for-dementia-patients-engagement-can-improve-mood-and-quality-of-life

In addition, one of the nursing homes participating in our study, St. Mary’s Villa in Pennsylvania, sent us this tidbit about their use of aromatherapy:

Aromatherapy & tactile stimulation can be used as an activity intervention by spraying lavender scent in the air by using a diffuser in the immediate environment.  It can have a calming effect on residents (and staff too!) and create a relaxed atmosphere.  In addition, one can also massage a simple lotion into a resident’s hands.  This provides the resident with a human touch experience. 

Care plan snapshots: Making care plans useful

Developing and updating care plans to ensure they include the required information takes a lot of staff time and attention. Unfortunately, they don’t usually live up to their potential for day to day usefulness and practicality.

To help address this, we’ve developed a Care Plan Snapshot…a “Readers Digest” version of a care plan that highlights the key information that a GNA or other caregiver would find most helpful day to day. It includes short and long terms goal(s), guidance on ADL care that helps residents maintain or improve function, behavioral issues with suggested approaches to care, and motivational ideas based on a resident’s interests. All in just a few pages!

Below is an example of a Care Plan Snapshot for “Mr. WXYZ”, along with an example of a completed capability test for him, which guided the development of the care plan’s goals and ADL care approaches. We invite you to take a look, share with staff, and discuss how this might be beneficial. Feel free to use and adapt as you’d like for your facility. For example, if family members are involved with a resident’s care, you may want to add a section on what family members can do during visits to help their loved one meet his/her goals.

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Capability Test for: Mr. WXYZ                                                     Date: July 19, 2017

Ask and encourage the resident to do each of the following:

  1. Range of Motion (ROM)
  • Full ROM to 180 degrees of abduction (hands over head) __1__ (1 point if yes, 0 if no.)
  • Full external rotation (hands behind head) _1____ (1 point if yes, 0 if no)
  • Full internal rotation and adduction (hands in small of back) __0__ (1 point if yes, 0 if no)
  1. Either lying or sitting, point and flex your toes, bend and straighten your knees, and/or if sitting, ask to march.
  • Able to flex ankle__1__ (1 point if yes, 0 if no)
  • Able to point toe__1___ (1 point if yes, 0 if no)
  • Able to bend and straighten knees ___1___ (1 point if yes, 0 if no)
  • Able to march ___1_(weak)_ (1 point if yes, 0 if no)
  1. Chair rise – observe to do this independently or how much help is needed (give up to 10 minutes to complete the task)
  • How many tries does it take? __0_ (Scoring: 1-3 tries= 1 point; > 3 tries = 0 points)
  • Do they use their arms? ___0___ (0 point if yes, 1 if no)
  • Can they make it to a full stand and stand independently for 1 minute? ___0__

(1 point if yes, 0 if no)

  1. Follow a one, two, or three step commands doing a functional task:

Ask the participant to take a towel, fold it in half, and put it on the table (bedside table or bed or whatever is available).

  • Follows a one-step verbal command __0____ (1point if yes, 0 if no)
  • Follows a two-step verbal command ___0____(1point if yes, 0 if no)
  • Follows a three-step verbal command ___0___ (1point if yes, 0 if no)
  • Follows a one-step visual/cueing command ___1___ (1 point if yes, 0 if no)
  • Follows a two-step visual/cueing command ___0___ (1point if yes, 0 if no)
  • Follows a three-step visual/cueing command ___0___ (1 point if yes, 0 if no)

Total Score:  7 (max = 16)

HIGHER SCORES ARE BETTER CAPABILITY

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Care Plan Snapshot

Resident Name: Mr. WXYZ
Room number:  0A

 

Care Goals

Short term goal #1: Resident will attend at least one preferred activity each day to decrease boredom and restlessness
Short term goal #2: Resident will perform sit-to-stand exercises at least once daily with assistance from staff to increase strength, maintain ability to transfer, and decrease risk of falls
Short term goal #3: Resident will go outside at least once per day, weather permitting, with assistance from staff
Long-term goal: Resident will show an increase in expressions of wellbeing (smiling, laughing, engaging in activities) and a decrease in expressions of distress (agitation, restlessness, wandering and apathy).
Care Area Resident Responsibilities Staff Responsibilities
Physical

Activity/

Ambulation

Resident will self-propel in WC, perform sit-to-stand exercises with assistance daily, participate in at least one scheduled activity daily, visit outdoor courtyard once daily, and transfer out of WC and into chair for all meals with assistance

 

 

Staff will encourage resident to self-propel in WC, assist with sit-to-stand exercises after lunch daily, encourage and assist resident to attend at least one daily activity with staff; visit outdoor patio with assistance from staff once daily, and assist with transfer out of WC for all meals
Bathing/Grooming Resident will wash/dry face and upper body with visual cuing from staff

 

 

Staff will provide 1-step visual cuing and encouragement for resident to wash/dry face and upper body
Dressing Resident will dress upper body with visual cuing from staff and engage in AROM while getting dressed

e.g., wave to friend in the hallway, march knees up to hit GNA’s hands, swim strokes

 

Staff will provide 1-step visual cuing to assist resident in dressing upper body; assist resident to perform AROM while dressing using 1-step visual cuing; ask resident to lift legs to help dress lower body
Eating Resident will eat finger foods and use utensils as needed with visual cuing from staff

 

 

Staff will place one food on plate/in bowl at a time, cut foods as needed and provide finger foods to encourage independence; use visual cuing with utensils
Oral Care Resident will brush teeth twice each day with 1-step visual cuing from staff as needed

 

Staff will have supplies ready and provide 1-step visual cueing and encouragement
Toileting

 

Resident will assist with transfer to toilet

 

Staff will encourage toileting after meals or at designated intervals; use 1-step cues during transfers; monitor for skin breakdown
Behavioral Issues:  Restlessness, agitation; occasionally engages in disruptive vocalizations, apathetic
Related to: Schizophrenia; Alzheimer’s disease; difficulty adjusting to new surroundings
Approaches by staff:

  • Assess for boredom, pain or other behavioral and psychological symptoms of dementia
  • Engage resident in sit-to-stand exercises, visits outside and other physical activities regularly
  • Provide consistency in care using same caregivers when possible; communicate successful strategies with other caregivers
  • When resident shows signs of boredom or agitation, attempt to engage him in one of his favorite activities, e.g., a game of horseshoes, going outside to courtyard, visit with receptionist
  • Respond calmly to resident during times of agitation, allow resident to vent feelings, and provide ample time for resident to respond to simple questions and direction from staff
  • Model behavior for resident
  • Offer choices to resident when available
 

Motivational ideas/Rewards:

 

(What are his interests, likes/dislikes, strengths? Who are his favorite caregivers?)

Mr. WXYZ loves to go outside and visit with his buddies. They like to talk about their time in the war. He also enjoys listening to jazz music, and it calms him down when he is agitated. His favorite GNA is Mary. He does not like eating in bed or playing games like BINGO, because they are for “old” people.

 

Going outside: Residents need fresh air and sunshine

We hope you all had a chance to spend at least a little time outside over the July 4th holiday. Did your residents?

Fresh air and sunshine can do wonders for people’s spirits, especially for people with dementia. Research has shown that when people can freely use outdoor areas, agitation and aggression reduce, independence is promoted, and memory recall is more likely to occur. An outdoor space or garden gives people the chance to be physically active, feel unrestrained, be more in touch with nature, socialize, and do meaningful activities (like plant flowers) that make them feel at home. It can also help maximize sleep duration for residents who have trouble sleeping through the night.

Find more information at:

https://www2.health.vic.gov.au/ageing-and-aged-care/dementia-friendly-environments/gardens-outdoors

And while indoor household tasks like folding laundry and sweeping floors can help engage residents in meaningful activity, this can work outside too! Have residents help sweep leaves and dirt off the deck or patio, pick up sticks, fill the bird feeder, and plant or water the flowers. There are lots of outdoor games too…horseshoes, beanbag toss, walking races, and beach ball volleyball to name a few.

What can you do this week to get more residents outside?

Reducing resistance to care

Resisting care, sometimes called combative with care, is a common behavior that is different from agitation or aggression. A person who is resisting care may pull away, attempt to leave or become agitated or aggressive during care activities. An example of a person resisting care may be saying “stop that, leave me alone!” and pulling away from staff during a specific care activity such as bathing. It is thought that resistance occurs because the person does not understand the care activity and sees this as an invasion of their personal space or a threat to their safety.

How to approach the resident:

  • Assume a non-threatening posture: smile and speak in a pleasant tone of voice, keep arms open (not crossed), conduct care at the resident’s eye level and from the side.
  • Don’t stand over the resident
  • Slow down care and ensure you are communicating clearly and explaining the task in a step-by-step process.
  • Do not use “baby talk” (elder speak) when delivering care.

General strategies to reduce care resistance:

Encourage the person with dementia to do as much for themselves as they can. Put objects necessary for the task within their field of vision so they are more easily located and remove objects that are unnecessary or distracting.

  • Identify long-standing habits and adjust routines accordingly. For example, if the resident is used to doing oral care at the sink, take them to the bathroom to complete this part of their care.
  • Consider whether the activity may be uncomfortable or painful and consider pain treatment before the activity.

Increasing resident engagement in activities

We’ve talked about how encouraging residents to participate as much as possible in their own care can help maintain or even increase function and decrease negative behaviors. Let’s remember that residents with moderate to severe dementia can have fun too!

How often do we see a group of residents participating in a recreational activity, but notice that at least a few of them are left out? Sitting in the corner looking on? Often, these more “challenging” residents are the people who most need to be active and engaged in activity so they avoid feelings of frustration, agitation, and boredom.

To help with this, here are some activity ideas that your nurses, nursing assistants and recreation staff can use to get residents with cognitive decline in on the fun:

  • Flyswatter volleyball: Give residents plastic flyswatters have them hit a balloon back and forth to each other
  • Dance, dance, dance! Turn off those televisions and turn on some music and dance. Have staff members take turns playing music from their iPods through a speaker. Fast or slow, old or new, music has the power to move everyone.
  • Horseshoes: Now that summer is here, horseshoe games are everywhere. Look for the foam kind and play inside or outside on a patio. Residents can play while standing or sitting.
  • Foam swim noodles: Get a bunch of these, cut them in half, and start bending. These make for great resistance exercises! Leave them out in common areas for a safe, easy way to start spontaneous exercise.
  • Movement scarves: These can be found on enasco.com, or you can make your own with a lightweight material. Toss these colorful scarves in the air and have residents try to catch them. These scarves can be better than throwing a ball back and forth since people with slower reflexes and limited hand flexibility can catch them more easily.
  • Chores! Yes, chores. Your kids might not agree, but for older adults with dementia, doing familiar household chores can be calming and comforting. Grab a basket of cloth napkins and ask them to help you by folding them. Give them a broom and ask them to help you sweep the floor since company will be coming. Get some pillowcases or old clothes, hang a clothesline between a few walls, and give them some clothespins. They can hang the laundry.
  • Don’t forget to go outside! Warmer days are here now, so in the morning or early evenings when it’s a bit cooler, go outside. The sunshine, change of scenery and fresh air is something we all need. Look at the flowers, look for birds, and have some lemonade.

Educating family members on person-centered care

Educating family members of your residents about your efforts to reduce the behavioral and psychological symptoms of dementia through person-centered behavioral approaches is critical. Family members can support staff and be a useful resource when determining what may motivate a resident to participate in his/her own care and engage in activity, and thereby decrease agitation, apathy and resistiveness to care.

One of the ways you can educate family members is by including information in your facility’s newsletter or other regular mailing or email to your residents’ loved ones. Below is a pre-written piece to help get you started:

Research repeatedly shows that older adults can improve their physical and mental health, slow cognitive decline, and increase their ability to participate in personal care needs like bathing and dressing by engaging in regular physical activity. Physical activity can also help decrease symptoms of dementia such as agitation, aggression, resistiveness to care and depression. Even short spurts of 10 minutes of activity can result in significant physical and emotional benefits. Being able to care for oneself as much as possible also helps preserve the dignity and independence that we all hope for as we age.

With this in mind, our staff will be working with your loved one to participate as much as possible in personal care activities and to engage in physical activities such as walking or self-propelling in their wheelchair to the dining room or doing some stretching and strengthening exercises while waiting for meals. You can help too. Go for a walk with your loved one when you visit, or ask a staff member to show you some exercises you can do with them while you visit. Ask their caregiver what activity goals they have for them and encourage your loved one as they try to reach their goals. Finally, support your family member’s caregivers as they use their knowledge and skills to involve your loved one in their care and other activities in order to transform expressions of distress into expression of well-being—a goal we all share.

Feel free to contact us if you have any questions about working with family as we move forward.

Environmental influence on resident behavior

As promised, here is the first of the “Weekly Tidbits” we’ll be sending every Sunday to provide ideas and motivation to you and your staff as you work to address behavioral and psychological symptoms of dementia (BPSD) with your residents. If you’d like additional members of your staff to receive the tidbits, please email Erin Vigne (vigne1@verizon.net), and she will add their email addresses to our list. Please feel free to forward these tidbits to staff, print and post on bulletin boards, or even publish in your facility’s newsletter or on your Facebook page!

This week, we’d like you to think about the environment in your facility and how it may influence behavior and/or encourage or discourage physical activity among your residents. Remember, if we can help residents stay engaged in pleasant ways, then they may be less likely to become anxious, depressed or agitated. They may also feel better if moving a bit more with less pain and generalized achiness.

Look around your common areas. Are there cues that would prompt a staff member to lead residents in physical activity, or do you just see a television? When family members are visiting, do they always sit in the resident’s room and talk, or are they encouraged by staff to take their loved ones for a walk outside where there are benches to rest? Does your activity director have custody of all the fun items that could encourage movement?

Start with common areas, where many residents spend the majority of their day. Consider placing a basket there with foam swim noodles (when cut in half, they are great for resistance exercise!), small weights or elastic bands, and movement scarves to throw and catch. Having these items out in the open can prompt nursing assistants and other staff to start some spontaneous exercise with residents when they are bored or need distraction. Is there a way to play music in common areas? Turn off those TV’s for a while each day and get staff and residents to dance! Staff can bring in their iPods or phones to plug in to speakers and take turns playing their favorite dance tunes.

Next, are your halls dull? Look at your main corridors. Residents use corridors for walking to a destination, exercise, and social interaction. Are there places to rest if it is a long hall? Is the hall cluttered with items that could cause a trip, or limit access to the handrails? Are there pleasant things to look at during a walk? Consider changing artwork periodically and adding art created by residents. Or choose a new theme each month and hang posters down the hall that correlate with the theme. The hall can then become a destination itself, and family members may be more likely to take their loved ones for a stroll. You could host a contest to see who can decorate the best resident door around a certain theme (summer, holidays, sports, etc). Involve staff and family members too, and offer prizes.

We look forward to discussing your ideas at our next meeting. Have a great week!