Abstract
This study aims to investigate the association between management and communication strategies and the presence of neuropsychiatric symptoms presented by elderly people with Alzheimer’s disease. One hundred and thirty-four family caregivers answered a questionnaire with socio-demographic data and questions regarding the care context, the Small Communication Strategies Scale, the Dementia Management Strategy Scale, and the Neuropsychiatric Inventory. Caregivers used the criticism management strategy more when the elderly presented hallucination, agitation, depression, anxiety, irritability, nighttime behavior, and appetite abnormalities. The encouragement strategy was more significantly used only in the presence of euphoria/elation. The caregivers who used the most active management strategy were those who cared for the elderly with delirium, hallucination, agitation, depression, anxiety, irritability, and appetite and eating abnormalities. The use of communication strategies did not differ between groups with or without neuropsychiatric symptoms. It is concluded that criticism management and active management strategies are strongly associated with neuropsychiatric symptoms. The results of this study may be useful for planning treatment interventions that aim to modify the use of management strategies used by caregivers.
Introduction
Neuropsychiatric symptoms (NPSs, also known as behavioral and psychological symptoms of dementia) affect most people with dementia. A recent longitudinal study showed that the frequency of NPSs increased over a three-year period in a population sample of elderly people with dementia. Approximately 90% of the elderly participants in this study had at least one NPS and more than half of the sample had four or more NPSs at some point during disease progression (Brodaty et al., 2015).
NPSs include depression, anxiety, disinhibition, irritability, delusions, and hallucinations. These symptoms are associated with increased caregiver burden (Truzzi, Valente, Engelhardt, & Laks, 2013) and are strong predictors of institutionalization (Brodaty, Connors, Xu, Woodward, & Ames, 2014; Gaugler, Yu, Krichbaum, & Wyman, 2009). According to Kales, Gitlin, and Lyketsos (2015), NPSs are related to a complex interaction of psychological, social, and biological factors and should be understood within a dynamic process involving the person with dementia, the family caregiver, and environmental factors.
The response of the family caregiver to NPSs is a crucial and modifiable aspect, but rarely explored in the literature. Caregiver-related factors such as negative communication style (anger, shout, or negative affect), coping skills, coping strategies, incompatibility between caregiver expectations and the stage of illness may trigger or worsen symptoms (de Vugt et al., 2005). In addition, the quality of life of the patient and caregiver is very dependent on the caregiver’s ability to respond adequately to the patient’s symptoms and needs. However, it is known that caregivers differ in their management strategies, with some caregivers being more successful than others (de Vugt et al., 2004).
Hinrichsen and Niederehe (1994) developed a scale to evaluate specific care management strategies for patients with dementia. They proposed three strategies: criticism, encouragement, and active management. Criticism involves caring authoritarian attitudes which include cries, threats, criticisms, and dysfunctional behaviors. Encouragement includes efforts to laud, encouraging discussion about the patient’s feelings, and demonstrating positive views about life. Active management consists of safeguarding, monitoring, and assisting the patient, modifying the environment and daily routine. In the original study conducted by the authors, the use of active management and criticism was associated with a greater burden of caregivers.
Another behavior management strategy for patients with dementia refers to communicative skills (Gitlin, Kales, & Lyketsos, 2012). With disease progression, the complexity of speech problems increases because language and communication deteriorate in elderly people who are affected by dementia (Savundranayagam & Orange, 2014). The language disorder in the elderly with Alzheimer’s disease (AD) has been associated with the development of behavioral problems and significant psychological symptoms (Potkins et al., 2003). Communication difficulties including conversation, language comprehension, speech, and reading/writing have been reported by caregivers as one of the most problematic aspects of AD (Georges et al., 2008).
There is a considerable scientific community effort to identify which strategies are effective in reducing NPSs. Most non-pharmacological interventions are dependent on families to implement recommended strategies for managing behaviors. However, some caregivers may be more able than others to learn and enact strategies that require behavioral changes on their part (e.g. employing different communication strategies) and their commitment may affect the participation and benefits derived from the intervention (Gitlin & Rose, 2014).
Given this scenario, studies are required to investigate whether certain dementia and communication management strategies are related to the presence of NPSs in the elderly with AD, and this was the objective of the current study. The investigation of these relationships is relevant, since some of these characteristics of the caregiver can be controlled and worked on with interventions aimed at improving the management of dementia and consequently achieving better results for patients.
Method
Participants
The sample comprised 134 caregivers of patients with AD enrolled in a geriatric clinic in Marília, SP, Brazil, being a non-probabilistic convenience sample. All participants provided written informed consent for participation in accordance with the study protocol, as approved by the Ethics Committee of the State University of Campinas (UNICAMP) (CAAE 47901615.5.0000.5404). To be part of the sample, they had to be a primary caregiver. That is, to provide daily care in the activities of daily living, for at least 4 hours committed per day; and be a caregiver of an elderly who received the diagnosis of AD, according to the criteria recommended by the National Institute of Neurological and Communicative Diseases and Stroke/Alzheimer’s Disease and Related Disorders Association (NINCDS-ADRDA) (McKhann et al., 1984).
After the screening, all participants were assessed for the following exclusion criteria: (a) caregivers who care for the elderly with other diagnoses such as cancer and psychiatric disorders (such as schizophrenia, bipolar disorder, obsessive-compulsive disorder, and other psychiatric disorders); (b) caregivers who provide care for the elderly who score above the cut grade in the Mini Mental State Exam, according to the score suggested by Brucki, Nitrini, Caramelli, Bertolucci, and Okamoto (2003) (for 1–4 years of education the cutoff score is 22, for 5–8 years, the score is 24, and over 9 years of education, the score is 26); (c) taking care of elderly institutionalized or those in terminal stages, which is expected to be less than 6 months, according to medical evaluation.
Interview procedures
First, the medical records of the elderly who had the diagnosis of AD were checked to collect information about the caregivers and the results of the Mini Mental State Exam tests. Caregivers who met the criteria established in this study were contacted via telephone to schedule the interview. The interviews were conducted by a researcher who was trained to apply the selected instruments. The caregiver could not be accompanied by the patient at the time of the interview, so the patient waited in a waiting room, where he was monitored by the clinic staff. The duration of each interview ranged from 35 minutes to 80 minutes. The average interview length was 46 minutes.
Measures
Caregivers responded to the Neuropsychiatric Inventory (INP) (Cummings et al., 1994; Stella et al., 2013). It is a questionnaire that independently evaluates 12 behavioral domains (delirium, hallucinations, sadness, anxiety, agitation/aggression, euphoria, disinhibition, irritability/emotional lability, apathy, aberrant motor activity, nighttime behavior disturbances, and appetite abnormalities). The caregiver initially responds to a screening question and, in case of a positive result, the frequency and intensity of each item are evaluated. The total score for each domain is calculated by the frequency equation × intensity. Finally, the total sum of the items provides a full-scale score.
To investigate the management strategies, Dementia Management Strategy Scale (DMSS) was used: this 28-item scale measures the ways in which the caregiver manages dementia problems presented by patients. These strategies are categorized into criticism (11 items), encouragement (8 items), and active management (9 items). Each item of the three subscales is rated from 1 (never) to 5 (most of the time). The DMSS measures the frequency with which a caregiver employs specific strategies tied to behavioral problems evidenced by the dementia patient. Scores for the three DMSS subscales were derived by summing the raw score values for each of the included items rather than calculating factor scores. Each DMSS subscale is rated independently, measuring the frequency (never to most of the time) that the caregiver employs each different strategy. The maximum scores are 55, 40, and 45 for criticism, encouragement, and active management, respectively. Yelling, criticizing, threatening, and related behaviors are considered criticism items, while efforts to praise the patient, get him or her to discuss feelings or look on the bright side of things are encouragement strategies. Activities to safeguard, assist, engage, stimulate, monitor, and associated behaviors primarily directed toward modifying the environment or daily routine are part of the active management category (Hinrichsen & Niederehe, 1994).
A Small Communication Strategies Scale (SCSS) is a 17-item questionnaire that measures the frequency in which the caregiver uses communicative strategies to relate to family members with dementia. It was constructed from the scale used by Small and Gutman (2002), which was adapted to Portuguese (Delfino, Komatsu, Komatsu, Neri, & Cachioni, 2017). For this study, we included seven more communicative strategies considered functional in a systematic review conducted by Delfino and Cachioni (2016). The caregiver was asked to indicate how often they use each strategy when communicating with the person with AD by checking one of the five options: always, often, occasionally, rarely, or never. The total score range was from 17 to 85, and the lowest score indicates that the caregiver uses communicative strategies more frequently.
Data analysis
Descriptive analyses of the INP data were performed to determine the prevalence, and the DMSS and SCSS subscales were used to determine the mean and standard deviation. The Mann–Whitney test was used to compare the values of the management and communication strategy subscales between the two groups (those who presented and did not present each NPS). To investigate the associations between the variables investigated, we used the Spearman correlation test. The analyses were done in SPSS version 22 (IBM SPSS Statistics).
Results
Most caregivers were women (n = 107, 80%) and children of the person with dementia (n = 86, 64%). The mean age of caregivers was 58.24 years (between 26 and 96 years). The majority of people with dementia were also female (n = 82, 61%), with a mean age of 80 years (between 59 and 100 years) and had at least one NPS (95%), MMSE = 18 and used psychotropic medications (90%).
Communicative strategies and dementia management strategies
The communicative strategies classified as having the highest frequency of use according to the caregivers are described in Table 1. The mean score of the total SCSS score was 39.46 (SD = 5.95). In Table 2 are presented the means of management strategies used by caregivers.
Classification of communicative strategies used by caregivers.
a1 = always, 2 = frequently, 3 = occasionally, 4 = rarely, 5 = never.
Means of management strategies used by caregivers (n = 134).
Neuropsychiatric Inventory
The results show that 95% of the elderly with a diagnosis of AD presented at least one NPS. The prevalence rates in the current sample from largest to smallest were as follows: apathy (53%), anxiety (48.5%), depression (42.6%), delusions (41%), aberrant motor behavior (38%), irritability (36.6%), agitation/aggression (30%), nighttime behavior disturbances (36.6%), appetite abnormalities (29%), disinhibition (28.3%), hallucinations (20.3%), and elation (3%).
The results show that caregivers used the criticism strategy more when the elderly presented hallucination, agitation, depression, anxiety, irritability, nighttime behavior, and appetite abnormalities. The encouragement strategy was more significantly used only in the presence of elation. The caregivers who used the most active management strategy were those who cared for the elderly with delirium, hallucination, agitation, depression, anxiety, irritability, and appetite abnormalities. The use of communication strategies did not differ between groups with or without NPSs (Table 3).
Mean and standard deviation values of management and communication strategy variables for each neuropsychiatric symptom.
Note: P-value for the Mann–Whitney test for comparison of values between the two groups (those who presented and did not present each NPS). Bold values indicate the statistically significant values (p<0.05).
The correlation data between the NPSs and the management and communication strategies are shown in Table 4. The criticism and active management strategies correlated positively with the total score of NPSs.
Correlations between neuropsychiatric symptoms and the variables of management and communication strategies.
r: Spearman correlation coefficient; NPS: neuropsychiatric symptoms. Bold values indicate the statistically significant values (p < 0.05).
Discussion
Many studies have demonstrated associations between NPSs and negative outcomes in the caregiver’s life, such as depressive symptoms and burden. No research has been found in the literature that reports the relationship between each NPS and strategies used by the caregiver to manage behavior and communicate with the person with dementia. In this study, it was observed that caregivers often use communicative strategies to relate to the elderly with dementia; however, these strategies were not associated with the NPSs presented by the elderly. In contrast, active and criticism management strategies were significantly associated with NPSs.
The communicative strategies have been reported in the literature as facilitators in living with patients with AD. In the study by Stanyon, Griffiths, Thomas, and Gordon (2016), the successful communicative strategies used by professionals to relate to clinic patients consisted of using simple language, short phrases, avoiding the use of abstract ideas, keeping the speech quiet, and not changing the tone of voice (to avoid agitation and confusion). Participants in this study stated the importance of explaining activities as they occur, repeating instructions, and paraphrasing. Among non-verbal facilitators, they observed eye contact, positive facial expression, touch, communication media (showing images and gestures to assist in verbal communication) as important elements to initiate and maintain the attention of the demented elder.
It was hoped that the communicative strategies investigated had associations with the presence of NPSs. According to Savundranayagam, Hummert, and Montgomery (2005), there is a clear link between disease progression, loss of communication skills, and problematic behaviors of the individual with dementia. In the study conducted by these authors, it was concluded that the progression of the disease could lead to indirect behavior problems because of communication difficulties in the relationship between caregiver and patient. Frustration can be a trigger feeling arising from the inability to communicate that manifests itself in the form of behavioral problem.
Williams and Herman (2011) have shown that control communication is highly associated with resistance in being cared for, and it is manifested as aggressive behavior in the elderly with dementia. In the study by Hazelhof, Schoonhoven, van Gaal, Koopmans, and Gerritsen (2016), it was observed that the elderly who present communication problems allied to the difficulty in performing daily activities and cognitive impairment are the ones that manifest the most behavioral problems in an institution. Elderly people with dementia reacted negatively (through negative vocalizations such as shouts and cries) more often when communication was infantilized (Herman & Williams, 2009).
Regarding dementia management strategies, the results showed that caregiver critical attitudes were associated with NPSs in the elderly with AD. According to Stevens, Biggs, Dixon, Tinker, and Manthorpe (2013), inadequate treatment by the caregiver may influence the response of the elderly with dementia. That is, the critical caregiver may worsen the patient’s symptoms and this worsens the patient, which can increase caregiver burden, creating a vicious cycle.
It is not clear in the literature the bidirectional causal relationship between management strategies and NPSs, that is, if the strategies used by the caregiver predispose the NPSs or if in the presence of NPSs the caregivers develop certain management strategies. In the study by Huang et al. (2015), it was observed that caregivers used the “avoid” strategy to distract attention and think less about what was happening. Disruptive behaviors, such as aggression and other aberrant behaviors, are difficult to deal with in general, and caregivers tend to avoid them to prevent suffering (Huang et al., 2015). In criticism factor of dementia management scale, there are items that recall the caregiver clearance to difficult situations in the relationship with the family with dementia.
García-Alberca et al. (2014) investigated the role of coping strategies used by caregivers in the NPSs of elderly people with dementia. The results showed that those who reported a higher rate of NPS were more likely to use disengagement coping strategies (avoid problems, have wishful thinking, self-criticism, and social isolation) and they were these strategies, and not the burden experienced by the caregiver, which explained their greater vulnerability to NPSs. Caregivers who used more engagement strategies (problem solving, cognitive restructuring, expression of emotions, and social support) reported lower NPS scores. In addition, disengagement strategies have been shown to be associated with NPSs regardless of the demographic and clinical characteristics of the patient and the caregiver, suggesting that the caregiver coping strategy is the most important predictor of NPSs.
In the study by de Vugt et al. (2004), a dysfunctional strategy used by the caregiver, such as non-acceptance and understanding of the patient with dementia, was associated with the presence of more hyperactivity symptoms (disinhibition, irritability, agitation, elation, and aberrant motor behavior) than caregivers who used a functional strategy (support). This finding could indicate that the hyperactive behavior in patients with dementia is triggered by caregiver interactions with the patient. Caregiver impatience or anger can result in further agitation in the patient. Efforts to adjust the behavior and patient skills probably create a safe environment and minimize the frustration of the patient. However, caregivers may also tend to use different strategies when problematic behaviors are presented in the patient, suggesting a two-way causality pattern.
In this sense, the active management strategies that have been associated with the NPSs can be explained by the adaptive factor of the caregivers. Caregivers select strategies to control, resolve, or minimize the consequences of NPSs. Thus, they attempt to control efforts to manage NPSs as a form of adaptation strategy (García-Alberca et al., 2014).
There are few studies that investigate which strategies used by caregivers in the presence of high NPS scores in the elderly, although there is much evidence that pharmacological and non-pharmacological strategies are effective in managing NPSs (Moore, Ozanne, Ames, & Dow, 2013). Moore et al. (2013) found that in the face of high levels of NPSs, caregivers used, on average, less than four strategies to manage these symptoms. Encouraging participation in activities, using psychotropic medications, identifying triggers or threats that predispose behavior change, restricting or treating in a paternalistic way, and meeting physiological needs were the strategies most used by caregivers.
For Melo, Maroco, Lima-Basto, and de Mendonça (2017), to adopt certain strategies depend on the patient’s behavior. The reaction (presumably the strategy) would cause the person with dementia and the caregiver’s own mood at that particular moment. The caregiver may use different strategies in similar situations, indicating the complexity of coping responses within a process of multiple interactions between the caregiver, the person with dementia, and the environment.
The present study has some limitations. First, this study has an observational cross-sectional design, which prevents establishing cause and effect relationships. Second, any generalization about the results should be cautioned, considering the nature of the sample (non-probabilistic convenience). Another limitation of the study is that the caregiver’s account of the patient’s NPS may not accurately reflect the actual symptom. Caregivers’ perceptions about NPS may be influenced by characteristics of the caregiver such as education and depressive symptoms.
Conclusion
Many patients with dementia have at least one NPS, which makes it a challenge for the caregiver to manage such symptoms. Criticism management and active management strategies are associated with NPSs. On the other hand, the communicative strategies did not present associations with the NPSs, contrary to the hypothesis of this study. Other studies are important to clarify the causal relationship between the use of dementia management strategies and the presence of NPSs. It was observed that the management strategies investigated in this study associate with certain NPSs. However, there are several management strategies that are not explored in the selected instrument in this study which may also be associated with the presence of NPSs. More studies are important to investigate this issue. The results of this study may be useful for planning treatment interventions aimed at changing the use of management strategies used by caregivers, thereby reducing the frequency of the patient’s NPSs and thus the caregiver burden.
Footnotes
Authors’ contributions
LLD involved in devising the study, literature review, keying in and analysis of data, discussion, and final review of the manuscript. RSK involved in devising the study and final review of the manuscript. CK interviewed the caregivers and applied the questionnaire. ALN involved in devising the study and final review of the manuscript. MC involved in devising the study and final review of the manuscript.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the CAPES Foundation, Ministry of Education of Brazil for the scholarship.
