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Section 17
The Impact of Dementia-Related Behaviors on Caregivers

Question 17 | Test | Table of Contents

The study Purpose
Problem behavior has been reported to be the most stressful aspect of caregiving (Coen et al. 1997, Payne & Caro 1997) and contributes to increased burden for caregivers. Problem behaviors can have major impact on caregivers. How caregivers react to these behaviors may determine the total impact experienced from caregiving. The purpose of this study was therefore to examine the relationships between specific types of problematic behavior and the total impact experienced from caregiving. Little is known about the impact of specific problem behaviors on caregivers (Davis et al. 1997).

Research questions
This study was designed to answer the following questions:
What is the relationship between frequency of problem behavior in the client with AD and impact from caregiving experienced by the caregiver?;
What is the relationship between the caregiver's reaction to the problem behavior and impact experienced from caregiving?.

Discussion
The study of the association between frequency of problem behavior and impact from caregiving is important as researchers seek to understand the consequences of problem behaviors and overall impact on caregiving. This study found the strongest association for total frequency of problem behavior was on personal and social restrictions in the caregiver's life. Additionally, a significant correlation was identified among the total frequency of problem behavior and an increase in the provoking nature of the care recipient. Other studies have also found that behavioral problems exert greatest impact on restrictions in the caregiver's life. Behavior problems appear to have far greater impact than do cognitive or functional impairment (Coen et al. 1997).

Related to the second research question, it is important to note that the caregiver reaction was more highly associated with caregiving impact than the actual frequency of behavior. The level of upset reaction to the care recipients' total, memory, disruption, and depression related behavior had even higher significant correlations with five of the six indicators for caregiving impact. These five indicators included: increased restrictions on caregivers activities, decline in physical and emotional health, increased economic costs, provoking nature of the care recipient, and the total impact score. Thus, the caregiver perception of the severity of the person's behavior is more important than the actual 'objective' frequency of impairment. This finding may have great implications for intervention programs. Caregivers must learn to understand depression and disruption in terms of symptoms of memory loss and gain knowledge about how to manage the behavior. Interventions designed for caregivers might include educational programs with content on knowledge about AD, understanding problem behaviors in terms of memory loss, and content on anger and frustration management (Gallagher-Thompson & DeVries 1994). Interventions designed for persons with AD would increase pleasurable and meaningful activities, and support previous skills and positive behaviors (Burgener et al. 1993). Thus, positive patient outcomes could be experienced with a decreased prevalence of depressive and disruptive symptoms. After caregiver education about management of the problem behaviors, possibly the reaction scores may decrease even through actual frequency of behaviors is expected to remain the same due to the progressive nature of the disease. Our findings support other research reports that some problem behaviors provoke greater caregiver reaction and impact than others (Pallett 1990, Miller et al. 1991). Numerous studies carried out over the past decade have addressed the impact on the health and well-being of the caregiver. In a review of the dementia caregiving literature, recipient behavior problems overwhelmingly predicted caregiver depression (Schulz et al. 1995, Schulz & Quittner 1998). Findings of this study suggest an explanation for these findings, as separate types of problem behavior was found to impact different aspects of the caregivers life (Davis et al. 1997). Perhaps dementia caregivers experience higher levels of strain because they have to more often cope with problem behaviors such as wandering, screaming, or destroying property.

Related to the demographic characteristic of gender, female caregivers experienced greater reaction to two problem behaviors (depression and disruptive behavior) when compared with male caregivers even though both genders reported similar frequencies of these behaviors. Examples of the depression behaviors included: appearing sad or depressed, crying, making comments about hopelessness, loneliness, death, being a burden, a failure, or threatening suicide. The other type of behavior that was most upsetting was disruptive behavior. Examples of disruption related behaviors include: arguing, talking loudly or rapidly, waking the caregiver up, verbal aggression, embarrassing behavior, dangerous behavior to self or others, and destroying property. These types of behaviors were associated with the most upset reaction in female caregivers. It is not surprising that these types of behaviors may be the most threatening. The female caregiver probably is concerned about her own safety or that of others and her ability to control the disruptive behavior. Thus caregiver knowledge and understanding about anger and frustration management may be important interventions for women.

Certain personal characteristics of the caregiver have been thought to contribute to the impact of family caregiving. Our findings are supportive of other research that suggests female caregivers experience a greater impact from caregiving. Females also had higher impact from caregiving in four of the six indicators when compared with men (restricted activity, decline in health, provoking nature of the care recipient, and total impact of care). The finding that women report a higher level of impact from caregiving than male caregivers do (Miller & Cafasso 1992) was interpreted in many ways, including the possibility that women assist in more personal aspects of caregiving such as toileting and bathing. Another interpretation was that females have more stress from multiple social roles than male caregivers do. Our findings add still another interpretation for increased impact: women may react more to depressed and disruptive care recipient behaviors, thus experiencing more negative consequences. Women's reaction to depressed and disruptive behaviors is an additional variable to be added to the study of gender differences that determine caregiving outcomes. Future interventions are also needed that promote a positive attitude toward use of respite and other community resources to decrease personal and social restrictions experienced by women caregivers (Robinson & Yates 1994).

Conclusions
Findings from this study indicated that caregiver's reactions to depressive and disruptive behaviors may put them at risk for problems of declining physical and emotional health, and loss of economic resources. More studies are needed to determine how the response to problem behavior changes over the course of illness as the disease progresses. Many caregivers would reply that this problem behavior was stressful at first but over time they have learned to accept it. The reasons for how and why some caregivers adapt over time whereas others do not is one of the least understood yet most important research questions deserving of further attention (Dunkin & Anderson-Hanley 1998). More intervention research is needed to determine how to best support caregivers in management of problem behaviors for each stage of the disease. Replication of studies with larger randomized samples, studied over extended periods of time, are needed to validate instruments and avoid contradictory evidence.
- Robinson, Karen M.; Adkisson, Pam; Weinrich, Sally; Problem behavior, caregiver reactions, and impact among caregivers of persons with Alzheimer’s disease; Journal of Advanced Nursing; Nov2001; Vol. 36 Issue 4

Personal Reflection Exercise #10
The preceding section contained information about the impact of dementia-related behaviors on caregivers.  Write three case study examples regarding how you might use the content of this section in your practice.
Reviewed 2023

Update
Impact of behavioral and psychological symptoms of Alzheimer’s disease on caregiver outcomes

Pinyopornpanish, K., Soontornpun, A., Wongpakaran, T., Wongpakaran, N., Tanprawate, S., Pinyopornpanish, K., Nadsasarn, A., & Pinyopornpanish, M. (2022). Impact of behavioral and psychological symptoms of Alzheimer's disease on caregiver outcomes. Scientific reports, 12(1), 14138. https://doi.org/10.1038/s41598-022-18470-8


Peer-Reviewed Journal Article References:
Basak, C., Qin, S., & O'Connell, M. A. (2020). Differential effects of cognitive training modules in healthy aging and mild cognitive impairment: A comprehensive meta-analysis of randomized controlled trials. Psychology and Aging, 35(2), 220–249.

Bayly, M., Morgan, D., Elliot, V., Kosteniuk, J., Froehlich Chow, A., Peacock, S., & O'Connell, M. E. (2021). Does early-stage intervention improve caregiver well-being or their ability to provide care to persons with mild dementia or mild cognitive impairment? A systematic review and meta-analysis. Psychology and Aging, 36(7), 834–854.

De Lucia, N., Grossi, D., Milan, G., & Trojano, L. (2020). The closing-in phenomenon in constructional tasks in dementia and mild cognitive impairment. Neuropsychology, 34(2), 168–175.

Di Nuovo, S., De Beni, R., Borella, E., Marková, H., Laczó, J., & Vyhnálek, M. (2020). Cognitive impairment in old age: Is the shift from healthy to pathological aging responsive to prevention? European Psychologist, 25(3), 174–185. 

QUESTION 17
In Robinson’s study, what factor was the most highly associated with caregiving impact? To select and enter your answer go to Test.

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