Understanding Behavioral Symptoms of Distress

‘Dementia behaviors’ are referred to and thought of in many different ways, which can be confusing to providers and family members caring for persons living with dementia. Behavioral and Psychological Symptoms of Distress (BPSD) refer to non-cognitive symptoms that occur commonly among persons with dementia.[2] These behaviors have been referred to as problematic, disturbing, difficult, inappropriate and challenging. Such language actually reflects the perspective of the observer rather than that of the person living with dementia. BPSD are now widely viewed as a form of communication that is meaningful (rather than a problem) and is an individual’s best attempt to communicate any variety of unmet needs. In recent years, providers and researchers have shifted away from using this negative terminology and have adopted more person-centered terminology, such as ‘behavioral symptoms’ and ‘responsive behaviors’ to recognize the experience of the person with dementia exhibiting the behaviors. Throughout the guide we will refer to these as Behavioral and Psychological Symptoms of Distress (BPSD), realizing other terminology exists.

The etiology (or underlying cause) of BPSD is multi-factorial. Behaviors may result from any combination of: neurodegenerative damage associated with the disease itself; unmet physical needs such as pain or discomfort; and unmet psychosocial needs, such as the need for meaningful human contact or fear. BPSD also commonly co-occur or occur in “clusters.”[3]

Examples of BPSD include: Some important things to know about BPSD:

Clinical Decision Support Approaches

Recently, approaches have been developed and tested that provide staff with clinical decision support algorithms to facilitate appropriate assessment and approach in response to BPSD in an individualized manner. We recommend three approaches: the Describe, Investigate, Create and Evaluate (DICE) model, the Serial Trial Intervention and Treatment Routes for Exploring Agitation (TREA). They are briefly described here. All can be supplemented by guidance provided in the Assessment document and the Specific Behaviors document.

Describe, Investigate, Create and Evaluate (DICE)

DICE is a model that starts with a description of the behavior followed by an investigation of possible causes, the formulation of a tailored treatment plan using non-pharmacological approaches and ongoing evaluation of outcomes. Greater detail on all steps is provided in the publication:

Serial Trial Intervention

The Serial Trial Intervention is a 9-step decision support tool for long-term care staff to follow with the goals of improving comfort and reducing agitation in persons with advanced dementia (see also Assessment document). The care provider moves from step 1 to step 9 based on whether or not each approach results in decreased agitation:

  1. A physical needs assessment and subsequent approaches as indicated.
  2. An affective needs assessment and subsequent approaches as indicated.
  3. A trial of non-pharmacologic comfort treatment(s) tailored to the individual.
  4. A trial of analgesic agents for pain treatment.
  5. Consultation with other disciplines
  6. Schedule dosing of effective (non-pharmacologic and analgesic) treatments for continued use if one time treatment is effective.
  7. Stop ineffective treatments (based on daily tracking forms)
  8. Add adjunctive and preventative treatments.
  9. Monitor for recurrence and new problems.
Reference: STI Teaching Manual

Treatment Routes for Exploring Agitation (TREA)

TREA is a systematic methodology for individualizing various non-pharmacologic approaches to decrease agitation in older persons with dementia. The premise of TREA is that agitation has different etiologies at different times and as such requires different treatment based on the individual’s needs, past identify/roles, preferences and abilities. TREA guides staff in identifying unmet needs underlying agitation through formal and informal data collection including: gathering information from staff and family caregivers and observations of the individual experiencing agitation focusing on behavior and environment. Using this information staff suggest personalized approaches based on systematic algorithms. TREA has demonstrated reductions in physical nonaggressive and verbal agitation as well as increases in pleasure and interest among persons with dementia. See also Assessment document:

References

  1. Cohen-Mansfield J, Thein K, Marx MS, Dakheel-Ali M, Freedman L. Efficacy of nonpharmacologic interventions for agitation in advanced dementia: a randomized, placebo-controlled trial. J Clin Psychiatry. Sep 2012;73(9):1255–1261.
  2. Kovach C, Logan B, Noonan P, et al. Effects of the serial trial intervention on discomfort and behavior of nursing home residents with dementia. American Journal of Alzheimer's Disease and Other Dementias. May/June 2006 2006;21(3):147–155.
  3. Kovach C, Simpson M, Joosse L, et al. Comparison of the effectiveness of two protocols for treating nursing home residents with advanced dementia. Research in Gerontological Nursing. 2012;5(4):251–263.
  4. Kales, H., Gitlin, L., & Lyketsos, C. Non-pharmacological management of behavioral symptoms in dementia. JAMA. 2012;308(19): 2020-9.
  5. Alagiakrishnan, K., Lim, D., Brahim, A., Wong, A., Wood, A., Senthilselvan, A., Chimich, W,. T., & Kagan, L. (2004). Sexually inappropriate behavior in demented elderly people. Postgraduate Medical Journal, 81(957), 463-466.
  6. Algase, D. L., Beck, C., Kolanowski, A., Whall, A., Berent, S., Richards, K., & Beattie, E. (1996). Need-driven dementia-compromised behavior: An alternative view of disruptive behavior. American Journal of Alzheimer’s Disease & Other Dementias, 11(6), 10, 12-19.
  7. Cohen-Mansfield, J., Marx, M. S., & Rosenthal, A. S. (1989). A description of agitation in a nursing home. Journal of gerontology, 44(3), M77-84.
  8. Cohen-Mansfield, J., Parpura-Gill, A., & Golander, H. (2006). Utilization of self-identity roles for designing interventions for persons with dementia. Journal of Gerontology: Psychological Sciences, 61B(4), 202-212.
  9. Doll, G. A. (2012). Sexuality & long term care: Understand and supporting the needs of older adults. Baltimore: Health Professions Press.
  10. Gitlin and Piersol (2013). Caregiver Notebook: Using Activities and Other Strategies to Support People with Dementia with Behavioral Symptoms. Available upon request from Dr. Gitlin at lgitlin1@jhu.edu.
  11. Kolanowski, A., Litaker, M., Buettner, L., Moeller, J., & Costa, P. T. (2011). A randomized clinical trial of theory-based activities for the behavioral symptoms of dementia in nursing home residents. Journal of the American Geriatrics Society, 59(6), 1032-1041.
  12. Smith M., Schultz S., Seydel L., Reist J., Kelly M., Weckman M., Gryzlak B., Carnahan R.(2013). Improving Antipsychotic Agent Use in Nursing Homes: Development of an Algorithm for Treating Problem Behaviors in Dementia. J Gerontol Nurs. 39(5) 24-35.
  13. Tune, L. E., & Rosenberg, J. (2008). Nonpharmacological treatment of inappropriate sexual behavior in dementia. American Journal of Geriatric Psychiatry, 16(7), 612-613.
  14. Volicer, L., Bass, E. A., & Luther, S. L. (2007). Agitation and resistiveness to care are two separate behavioral syndromes of dementia. J Am Med Dir Assoc, 8(8), 527-532. doi: 10.1016/j.jamda.2007.05.005