Working With Caregivers of Those With Dementia
For individuals in the U.S. & U.S. territories
With a continuously increasing aging population in the United States, there has been a commensurate rise in cases of dementia as well as incidences of adults assuming caregiving for family members and spouses.
Because dementia is a progressive deterioration in cognitive functions that leads to intellectual, emotional, and behavioral changes, it presents significant challenges to the patient and caregiver alike. Often, the caregivers of older adults with dementia experience feelings of depression and anxiety as they attempt to care for their loved ones.
In this video, Dr. Susan M. McCurry discusses and demonstrates her contextual approach to working specifically with caregivers of those who have been diagnosed with dementia. Dr. McCurry meets with a middle-aged husband and wife who equally share the responsibility of taking care of the husband's mother, who has been diagnosed with dementia. Dr. McCurry helps the clients discuss their personal choices and cope with their life-altering transitions.
Dr. Susan McCurry's contextual approach to working with persons with neurocognitive disorders draws from three areas of consideration that are analogous to a three-legged stool: every leg is important for keeping things in balance and helping cognitively impaired individuals maintain the highest quality of life possible, whatever their stage of disease.
The first leg of the stool involves exploring how the dementia diagnosis is currently impacting the client (McCurry & Drossel, 2011). Every individual is unique in terms of their particular brain pathology that influences symptom presentation and progression.
Persons with neurocognitive disorders and their caregivers need help understanding this unique pattern of symptoms, both in terms of areas of difficulty that will need compensating for, but also areas of strengths that can be drawn upon in their daily lives. It is important for these conversations to be hopeful and collaborative; as the clients need to maintain a sense of self identity and worth as they begin to explore how dementia is affecting their relationships, their life roles, and their future plans.
The second leg of the stool supporting this approach is functional contextualism. Functional contextualism is a pragmatic perspective that focuses on how behaviors develop and are maintained within a particular historical and situational context (Hayes, 1993).
Persons with neurocognitive disorders not only have unique neurophysiological and neuropsychological profiles, but unique histories, relationships, and preferences.
When dementia-related behavioral challenges develop, therapists use contextual analysis to try to understand
- what the person wants or needs
- what is he or she trying to communicate when he or she behaves in this puzzling or infuriating way?
- what is the best way to respond?
In working with caregivers, the "ABCs of behavior change" is used (Hoyer et al. 1975; Hussian 1981; Teri & Logsdon, 1990). Caregivers are taught how to operationally define the behavior of interest; consider antecedents/activators that precede the behavior and the consequence responses that follow it; and develop a plan for changing activators or consequences to alter the reinforcing, punishing, or contingency-shaped aspects of the environment that may be contributing to the behavior of concern.
The contextual analysis is further informed by gerontological theory (Lawton 1983, 1991), which emphasizes the importance of a good "person–environment fit" for maintaining quality of life. Personal values, expectations, belief systems, and histories must be considered not only for the affected individual but also for key persons interacting with him or her in daily life.
The final leg of the stool is helping individuals with neurocognitive disorders maintain good relationships with the people who love and care for them. Effective dementia care always involves creating a positive connection at an interpersonal level.
In working with caregivers and clinician trainees, Dr. McCurry has used the acronym of DANCE to describe a set of easy-to-remember guidelines that can facilitate this positive connection between caregivers and care-receivers (McCurry, 2006; McCurry & Drossel, 2011). Together, these easy-to-remember steps are designed to help persons with neurocognitive disorders and their caregivers maintain essential interpersonal connections and maximize quality of life for the caregiver and care-receiver alike.
Books describing the contextual approach to dementia care
- McCurry, S.M. (2006). When a family member has dementia: Steps to becoming a resilient caregiver. Westport, CT: Praeger Publishers.
- McCurry, S.M., & Drossel, C. (2011). Treating dementia in context: A step by step guide to working with individuals and families. Washington, DC: American Psychological Association Press.
Additional relevant book resources
- Albert, S.M., & Logsdon, R.G. (Eds.) Assessing Quality of Life in Alzheimer's Disease. (2000). NY: Springer Publishing Co.
- Hayes, S.C. (1993). Analytic goals and the varieties of scientific contextualism. In S.C. Hayes, L.J. Hayes, H.W. Reese, & T.R. Sarbin (Eds.), Varieties of scientific contextualism (pp. 11–27). Reno, NV: Context Press.
- Kuhn, D., & Verity, J. (2008). The art of dementia care. Clifton Park, NY: DELMAR CENGAGE Learning.
- Lawton, M.P. (1991). A multidimensional view of quality of life in frail elders. In J.E. Birren, J.E. Lubben, J.C. Rowe, & D. E. Deutchman (Eds), The concept and measurement of quality of life in the frail elderly (pp. 3–27). Academic Press, Inc.
- Logsdon, R.G., McCurry, S.M., & Teri, L. (2008). Assessment and treatment of dementia related affective disturbances. In: Laidlaw, K., & Knight, R. (Eds.), The handbook of emotional disorders in late life: Assessment and treatment, pp. 345–362. New York: Oxford University Press.
- Mast, B.T. (2011). Whole person dementia assessment. Baltimore, MD: Health Professions Press.
- Snyder, L. (2010). Living your best with early-stage Alzheimer's. North Branch, MN: Sunrise River Press
- Teri, L., Logsdon, R.G., & McCurry, S.M. (2005). The Seattle protocols: Advances in behavioral treatment of Alzheimer's disease. In: Vellas, B., Grundman, M., Feldman, H., Fitten, L.J., Winblad, B., & Giacobini, E. (Eds.), Research and practice in Alzheimer's disease and cognitive decline, Volume 10, pp. 153–8. New York: Springer Publications.
Relevant peer-review papers
Behavior analysis/functional contextualism
- Buchanan, J.A., Christenson, A., Houlihan, D., & Ostrom, C. (2011). The role of behavior analysis in the rehabilitation of persons with dementia. Behavior Therapy, 42, 9–21.
- Hoyer, W.J., Mishara, B.L., & Riebel, R.G. (1975). Problem behaviors as operants: Applications with elderly individuals. The Gerontologist, 15, 452–456.
- Vilardaga, R., Hayes, S.C., Levin, M.E., & Muto, T. (2009). Creating a strategy for progress: A contextual behavioral science approach. The Behavior Analyst, 32, 105–133.
- Lawton, M.P. (1983). Environment and other determinants of well-being in older people. The Gerontologist, 23, 349–357.
Evidence-based behavioral interventions for cognitively impaired individuals
- Allen-Burge, R., Stevens, A.B., & Burgio, L.D. (1999). Effective behavioral interventions for decreasing dementia-related challenging behavior in nursing homes. International Journal of Geriatric Psychiatry, 14, 213–28.
- Brodaty, H. and Arasaratnam, C. (2012). Meta-analysis of nonpharmacological interventions for neuropsychiatric symptoms of dementia. American Journal of Psychiatry, 169, 946–953.
- Logsdon, R.G., McCurry, S.M., & Teri, L. (2007). Evidence-based psychological treatments for disruptive behaviors in individuals with dementia. Psychology and Aging, 22, 28–36.
- Logsdon, R.G., McCurry, S.M., & Teri, L. (2005). STAR-Caregivers: A community-based approach for teaching family caregivers to use behavioral strategies to reduce affective disturbances in persons with dementia. Alzheimer's Care Quarterly, 6, 146–153.
- McCurry, S.M., Gibbons, L.E., Logsdon, R.G., Vitiello, M.V., & Teri, L. (2003). Training caregivers to change the sleep practices of patients with dementia: The NITE-AD study. Journal of the American Geriatrics Society, 51, 1455–1460.
- McCurry, S.M., Logsdon, R.G., Vitiello, M.V., & Teri, L. (2004). Treatment of sleep and nighttime disturbances in Alzheimer's disease: A behavior management approach. Sleep Medicine, 5, 373–377.
- McCurry, S.M., LaFazia, D.M., Pike, K.C., Logsdon, R.G., & Teri, L. (2009). Managing sleep disturbances in adult family homes: Recruitment and implementation of a behavioral sleep education program. Geriatric Nursing, 30, 36–44.
- Teri, L., & Logsdon, R.G. (1990). Assessment and management of behavioral disturbances in Alzheimer's disease. Comprehensive Therapy, 16, 36–42.
- Teri, L., Logsdon, R.G., & McCurry, S.M. Exercise interventions for dementia and cognitive impairment: The Seattle Protocols. (2008). Journal of Nutrition, Health & Aging, 12, 391–394.
- Teri, L., Logsdon, R.G., Uomoto, J., & McCurry, S.M. (1997). Behavioral treatment of depression in dementia patients: A controlled clinical trial. Journal of Gerontology: Psychological Sciences, 52B, P159–P166.
- Teri, L., McCurry, S.M., Logsdon, R.G., & Gibbons, L.E. (2005). Training community consultants to help family members improve dementia care: A randomized controlled trial. The Gerontologist, 45, 802–811.
Dr. Susan McCurry is research professor in the University of Washington Department of Psychosocial and Community Health, and adjunct research professor in psychiatry and behavioral sciences. She received her doctorate in clinical psychology at University of Nevada, Reno in 1991 and has been at University of Washington since then.
She is a fellow in the Gerontological Society of America and has been co-investigator on 30 federal, state, and foundation grants related to aging and dementia.
Dr. McCurry has authored more than 100 professional publications, including two books designed to help family caregivers and health care professionals provide more effective and compassionate care to cognitively impaired individuals.
Her ongoing clinical and research interests are focused on
- development and evaluation of training programs for family members and professional staff caring for persons with dementia
- assessment and treatment of sleep disturbances in older adults with dementia or other co-morbid medical conditions
- examination of the contextual factors associated with development of age-related cognitive decline and related mood and behavioral disturbances
- McCurry, S.M. (2006). When A Family Member Has Dementia: Steps To Becoming A Resilient Caregiver. Westport, CT: Praeger Publishers.
- McCurry, S.M., & Drossel, C. (2011). Treating Dementia in Context: A Step By Step Guide to Working With Individuals And Families. Washington, DC: American Psychological Association.
- Albert, S.M., & Logsdon, R.G. (Eds.) Assessing Quality Of Life in Alzheimer's Disease. (2000). NY: Springer Publishing Co.
- Hayes, S.C. (1993). Analytic Goals and The Varieties Of Scientific Contextualism. In S.C. Hayes, L.J. Hayes, H.W. Reese, & T.R. Sarbin (Eds.), Varieties Of Scientific Contextualism (pp. 1127). Reno, NV: Context Press.
- Kuhn, D., & Verity, J. (2008). The Art Of Dementia Care. Clifton Park, NY: DELMAR CENGAGE Learning.
- Lawton, M.P. (1991). A Multidimensional View Of Quality Of Life In Frail Elders. In J.E. Birren, J.E. Lubben, J.C. Rowe, & D. E. Deutchman (Eds), The Concept And Measurement Of Quality Of Life In The Frail Elderly (pp. 3–27). Academic Press, Inc.
- Logsdon, R.G., McCurry, S.M., & Teri, L. (2008). Assessment And Treatment Of Dementia Related Affective Disturbances. In: Laidlaw, K., & Knight, R. (Eds.), The Handbook Of Emotional Disorders In Late Life: Assessment And Treatment, pp. 345–362. New York: Oxford University Press.
- Mast, B.T. (2011). Whole Person Dementia Assessment. Baltimore, MD: Health Professions Press.
- Snyder, L. (2010). Living Your Best With Early-Stage Alzheimer's. North Branch, MN: Sunrise River Press.
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