Caregiver Strain with Alzheimer's Dementia

Alzheimer’s dementia is a progressive disease often embodied with behavioral and personality changes for the inflicted individual. It is a disease that directly affects families and caregivers. As behavior and cognition changes, caregivers must constantly adjust their approach. The stress associated with caregiving affects mood, personal relationships, and even morbidity (Okan 2012, Adams, 2008 ). Factors such as education, available resources, and the physical condition of the caregiver directly affect the outcomes of both the patient and the caregiver (Etters et al, 2008).

Negative repercussions for the patient can result from caregivers experiencing unmanageable stress. In addition, the unmet needs of the caregiver can negatively impact the quality of their lives (Vaubgabjar, J. et al 2013). There may be differences in factors related to burnout if the caregiving is considered informal, such as a family member, or someone hired specifically to caretake for the patient. When the burden to care for a family member with dementia becomes too overwhelming, placement in a facility often results in guilt and anxiety (Sury, L. et al, 2013).

Nurses need to include family members in their approach to treatment of the patient with Alzheimer’s disease. By understanding how to screen caregivers for evidence of burnout, students are better prepared to more holistically treat the patient. Early screening and multi- component interventions can improve outcomes both for the caregiver and the patient (Etters et al, 2008). This teaching strategy offers activities to help the student better understand the impact of stress on the caregiver, screen for this impact, and construct strategies to address the strain. It is a teaching strategy that can be adapted to both in-class and online settings.

Caregiver Strain with Alzheimer's Dementia

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Learning Objectives

Students will: 

  • Develop an understanding of common symptoms of caregiver strain
  • Utilize standardized tools to evaluate caregiver strain
  • Recognize the encompassing implications of caregiver strain for both the caregiver and the patient
  • Develop interventions applicable to addressing caregiver strain
  • Investigate available specific community resources to support the person caring for the patient with Alzheimer’s dementia
  • Articulate the impact of stress on the multidisciplinary team caring for a patient with Alzheimer’s dementia
  • Better understand the transitional adjustment of all caregivers in coping with the insidious decline of the patient with Alzheimer’s dementia

Learner Pre-Work

  • Download the monologue of Karen Jones. Judy’s daughter, Karen, who is overwhelmed with her mother’s condition, primarily narrates this monologue. She has been living with and caring for her mother who has Alzheimer’s dementia. Her mother is presenting to the emergency department with a superimposed delirium. Feelings of guilt, being overwhelmed, and frustration are all illustrated in the monologue. 
  • In the third simulation of the Judy Jones unfolding case, as discharge plans are initiated, Karen again expresses concern about being able to care for her mother. The following activities can be utilized by listening to the monologue independent of the simulations, or if the unfolding case is being used, Simulation 3 also has content specific to this teaching strategy.

Suggested Learning Activities

  • Utilize the following questions to spark discussion on the impact that being a caregiver has on Karen. This discussion can be done in a large class setting, a smaller seminar environment, or an online discussion group.
  1. What are your concerns about Karen?
  2. What is the cause of the concern?
  3. What information do you need?
  4. What are you going to do about it?
  5. What is Karen experiencing?


Adapted from: Benner, P., Sutphen, M., Leonard, V., Day, L., & Shulman, L. (2010). Paradigm case: Lisa Day, classroom and clinical instructor. In Educating nurses: A call for radical transformation (p. 133). San Francisco, CA: Jossey-Bass.

  • Ask students to write a reflective piece on how Karen is coping with her mother’s diagnosis of Alzheimer’s dementia. Have them consider the constant adjustments Karen must make as Judy faces the transitions of her disease. In addition, have them reflect on the impact on both Karen and Judy as the roles of mother and daughter is being reversed. 
  • Assign students the following topics after listening to the monologue and discussing the impact of caregiver strain. They can review the literature either independently or in small groups on the topic. These topics are part of the evolving body of knowledge specific to care of the Alzheimer’s patient.
  1. The impact of caregiver strain on the morbidity and mortality of the caregiver
  2. The role of caregiver strain in elder abuse
  3. The influence of caregiver burnout on behavioral issues in the patient with Alzheimer’s dementia
  4. The impact on the quality of relationships of the individual caretaking of a patient diagnosed with Alzheimer’s dementia
  5. The guilt response in the caretaker of the Alzheimer’s patient
  6. The effect of education on the caretaker of the Alzheimer’s patient 
  • Have students interview the caregiver of a patient diagnosed with Alzheimer’s dementia. This can be a paid companion, a family member, or a health care provider in an inpatient or outpatient facility. This interview should include the use of a standardized tool to assess caregiver strain as well as a discussion with the caregiver and observation of interaction with the patient.
  1. Utilize the Modified Caregiver Strain Index (MCSI)
  2. Have the student calculate the risk of strain in the caregiver after utilizing the MCSI.
  3. Ask the student to identify potential risk factors identified after synthesizing the information they obtained after observing interactions, utilizing the MCSI, and talking with the caregiver. For example: 
  • Is the caregiver at risk for depression?
  • What unmet physiological or psychological needs does the caregiver exhibit?
  • Is there any evidence of ineffective coping?
  • Does the caregiver show evidence of healthy personal relationships?
  • What resources does the caregiver use to cope?
  • Are there any concerns of elder abuse?
  • Have the students investigate resources in the community that offer support to the caregiver caring for a patient with Alzheimer’s dementia. They should consider the feasibility of the resource including transportation, financial compensation and the ability of the caregiver to be amenable to the resource.

Suggested Reading

Kim, H., Chang, M. Rose, K., & Kim, S. (2012). Predictors of caregiver burden in caregivers of individuals with dementia. Journal of Advanced Nursing68(4), 846-855. doi:10.1111/j.1365-2648.2011.05787.x.

Mace, N. L., & Rabins, P. R. (2017). The 36-hour day: A family guide to caring for people who have alzheimer’s disease, related dementias, and memory loss (6th ed.). Baltimore, MD: Johns Hopkins Press Health Book.

Sury, L., Burns, K., & Brodaty, H. (2013). Moving in: Adjustment of people living with dementia going into a nursing home and their families. International Psychogeriatrics, 25(6), 867-876. doi:10.1017/S1041610213000057

Vaingankar, J. A., Subramaniam, M., Picco, L., Eng, G. K., Shafie, S., Sambasivam, R., . . . Chong, S. A. (2013). Perceived unmet needs of informal caregivers of people with dementia in Singapore. International Psychogeriatrics, 25(10), 1605-1619. doi:10.1017/S1041610213001051

Author Information

Laureen Tavolaro-Ryley, MSN, RN
Community College of Philadelphia
Philadelphia, PA