Pain is a common symptom among older adults in nursing home settings affecting 30% to 80%
of residents living with dementia. Pain is not assessed, the underlying cause is not
identified and treatment is not initiated for a large percentage of residents living with
dementia in nursing homes. Lack of accurate pain evaluation results in untreated or
over-treated pain. Untreated or over-treated pain can lower quality of life, negatively
impact function, impair sleep, and increase behavioral and psychological symptoms
associated with dementia. Reasons for lack of pain assessment, diagnosis and management
for residents living with dementia include lack of knowledge among staff on how to
evaluate and treat pain, limited options for complete pain relief, concerns related to
use of opioids, and beliefs that pain is a normal part of aging among others.
For those with moderate to severe dementia verbal reporting of pain may not be reliable
and observational approaches are recommended. Pain in individuals living with dementia is
more likely to present with aggression, agitation, repetitive vocalizations,
restlessness, sleep disturbances, withdrawal, and apathy and may be incorrectly treated
with psychotropic medications. Evaluation and management of pain is also complicated by
differences between sex/gender, racial and ethnic groups. In some studies individuals
living with dementia who were older, male, or Black were less likely to verbally report
having pain or to be treated for pain compared to those who were younger, female, or
white. With regard to treatment, there is some evidence that nonpharmacological
treatments and analgesics can decrease pain among individuals living with dementia.
Engaging individuals, particularly those living with dementia, in interventions to manage
pain such as physical activity or positioning can be difficult and staff need education
and techniques to use to motivate residents in these activities.
Evidence based pain assessment, diagnosis and management approaches for nursing home
residents, including residents living with dementia, were recently incorporated into a
new Pain Management Clinical Practice Guideline (Pain CPG). Translation of Clinical
Practice Guidelines or evidence based practices into real world settings are slow to
occur and innovative approaches are needed. In prior work to facilitate translation of
best practices the investigators developed a successful theoretically based approach that
utilized the Social Ecological Model and Social Cognitive Theory and was guided by the
Evidence Integration Triangle. Using this theoretically based approach there was a change
in staff and resident behavior related to increasing residents' physical activity using a
function focused care approach and increased use of nonpharmacological approaches to
address behavioral symptoms associated with dementia. The purpose of this study is to
utilize the previously established theoretically based approach to translate use of the
new Pain Management CPG into nursing home settings and improve the assessment, diagnosis
and management of pain among residents living with dementia. The theoretically based
approach combined with the Pain Management CPG is referred to as the PAIN-CPG-EIT. The
PAIN-CPG-EIT is initiated by a research nurse facilitator who works with community
champions and a stakeholder team for 12 months to provide four components: Component I:
Establishing and meeting monthly with a stakeholder team and champion(s) to establish
community goals related to pain and review the Pain Management CPG; Component II:
Education of the staff about assessment, diagnosis and management of pain of residents
living with dementia based on the Pain Management CPG; Component III: Mentoring and
motivating staff to assess, diagnose and manage pain; and Component IV: Ongoing
monitoring of pain assessment, diagnosis and management and feedback to the stakeholder
team. Twelve communities will be randomized to treatment (PAIN-CPG-EIT) or Education Only
(EO) and 25 residents living with dementia and pain will be recruited per community. The
first aim of this study is to: Test the effectiveness of use of the PAIN-CPG-EIT to
improve the assessment, diagnosis and management of pain and decrease pain intensity
among nursing home residents living with dementia. The second aim is to evaluate
treatment fidelity related to use of the PAIN-CPG-EIT based on delivery, receipt and
enactment. The third aim is to: a. test for gender/sex and race invariance in pain
measurement based on the Pain in Alzheimer's Disease (PAIN-AD) measure; and b. test for
differences in treatment of pain and response to treatment between male and female and
Black versus White residents living with dementia. Findings will help to improve the
assessment, diagnosis and management of pain and evaluate health disparities and equity
among older adults living with dementia experiencing pain. Demonstrating effectiveness of
this approach to using the Pain Management CPG will facilitate future work disseminating
and implementing this CPG.