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!

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.

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.