“I’ve learned to just go with the flow”: Family caregivers’ strategies for managing behavioral and psychological symptoms of dementia

Introduction

Behavioral and psychological symptoms of dementia (BPSD) pose significant challenges for the well-being of persons living with dementia (PLWDs) and their family caregivers. BPSD such as psychomotor agitation, sleep disturbances, and delusions have been associated with elevated caregiver burden and depression, along with excess morbidity, nursing home placement, and earlier mortality among PLWDs (Kales, Gitlin, & Lyketsos, 2015). Caregivers vary in how they manage and cope with BPSD (Kales et al., 2015). Nevertheless, little is known about the specific strategies that caregivers use in their everyday management of these behaviors. Gaining greater knowledge of these strategies would inform the design of targeted interventions to sustain both care partners’ optimal health and functioning. This study used in-depth focus group data to examine family caregivers’ perspectives on the strategies they use to manage BPSD.

Although BPSD arise from underlying neurodegeneration, their presence and severity are often influenced by interacting characteristics of the PLWD (e.g., fatigue, physical illness), the caregiver (e.g., ineffective communication), and the environment (e.g., lack of routine or activity; Kales et al., 2015; Sink, Covinsky, Barnes, Newcomer, & Yaffe, 2006). Consequently, theoretical frameworks have been developed to guide caregivers in the use of psychological, social, and environmental strategies to manage these behaviors. The progressively lowered stress threshold (PLST) model proposes that dementia gradually diminishes the PLWD’s capacity to cope with stressors that are internal (e.g., pain, impaired communication skills) and external (e.g., noise overload, interpersonal conflict) as a result of declines in their cognitive, affective, and functional abilities (Hall & Buckwalter, 1987; Smith, Gerdner, Hall, & Buckwalter, 2004). In turn, BPSD may occur when the PLWD encounters stressors that exceed his or her coping threshold. Consistent with this perspective, research has found that caregivers manage BPSD in part by adapting the social or physical environment in ways that minimize the PLWD’s exposure to stressors (Moore, Ozanne, Ames, & Dow, 2013). Similarly, other studies show that caregivers with nonconfrontational approaches to BPSD that are sensitive to the PLWD’s level of functioning (e.g., not challenging his or her understanding of events or situations) report more effective management of these symptoms and less decline in feelings of competence than those who use corrective or punitive tactics which could amplify stress within the care dyad (Colling, 2004; de Vugt et al., 2004; Harvath, 1994).

Complementing the PLST model, the need-driven dementia comprised behavior (NDB) model holds that BPSD are partly attributed to unmet physical, psychological, and social needs (Algase et al., 1996; Colling & Buettner, 2002). Dementia-related cognitive and social difficulties increasingly lead PLWDs to express their needs through various behaviors. In accord with this model, previous research demonstrates that caregivers recognize these needs and commonly manage BPSD through engaging the PLWD in enjoyable activities (e.g., exercise, socializing) or ameliorating physiological discomfort (e.g., cold, hunger; Harvath, 1994; Huis in het Veld et al., 2016; Moore et al., 2013).

It is important to enhance further understanding of caregivers’ views about how they manage BPSD for at least three reasons. First, the few studies on this topic have limitations including a focus on behavior-specific management (e.g., wandering, passivity; Colling, 2004; Dodds, 1994) and the consideration of general response orientations (e.g., being calm, patient, or positive) more than distinct strategies (e.g., using written prompts; de Vugt et al., 2004; Harvath, 1994; Huis in het Veld et al., 2016; Turner et al., 2015). As a consequence much remains unknown about particular approaches that caregivers use to manage a range of behaviors. Second, prior studies have primarily used individual interviews. Although this work has made key contributions, research examining an in-person focus group for Latino caregivers and an online caregiver focus group suggest that interviewing caregivers about managing BPSD among their peers generates candid and nuanced information may extend beyond what is shared during one-on-one interviews (Huis in het Veld et al., 2016; Turner et al., 2015). Finally, even caregivers who report knowing how they should respond to BPSD, in theory, have trouble putting these skills into practice (Huis in het Veld et al., 2016). Caregiver reactions to BPSD in daily life may therefore not align with prior education or knowledge about dementia, underscoring the value of capturing their own accounts of everyday strategies to manage these behaviors.

The present study examined family caregivers’ perceptions of the strategies they use to manage their relative’s BPSD. We extend the literature by using data from face-to-face caregiver focus groups, which enable spontaneous responses and allow caregivers to build on one another’s thoughts and reflections in a supportive social context.

Methods

A total of 26 family caregivers participated in four focus groups that were part of an NIH-funded project (NINR R01NR014200) to develop a web-based caregiver tool for assessing and managing BPSD (Kales et al., 2017). This project was approved by the University of Michigan’s Internal Review Board (HUM00066639). Caregivers were recruited from a variety of settings including outpatient clinics and local senior resource centers by (1) responding to fliers; and (2) staff referrals. Participants were eligible if they were primary caregivers of a relative with dementia. Caregivers provided written informed consent and completed a brief survey on sociodemographics, caregiving characteristics, and technology use before the group meeting.

An experienced facilitator led each group. Three groups included 5 caregivers and one group had 11 caregivers. Using an outline developed by the research team, participants were asked about their: (1) perceived need for psychoeducation about BPSD; (2) language used to describe BPSD; (3) opinions about medication versus behavioral management; and (4) related communication and experiences with providers and family members. Specific to the present study, caregivers were asked to discuss the strategies or approaches they use to deal with their relative’s challenging behaviors. Sessions lasted for roughly 90 minutes, were audio-recorded, and were later transcribed and verified for accuracy. The facilitator instructed participants to be respectful of one another’s opinions and vulnerabilities. Caregivers were reminded that they had the option to withdraw at any time for any reason, including focus group discussions that made them feel uncomfortable. No concerns were voiced, and many caregivers commented that they found the focus groups to be interesting and informative. None of the caregivers described unethical approaches for managing BPSD.

Content analysis was used to determine categories of caregivers’ strategies for managing BPSD. Six study team members (CAP, LMS, BS, MT, BB, and HCK) coded transcript data from four focus groups in succession during one in-person meeting. An all-inclusive data table technique in Microsoft Excel was used to code and analyze the data contained in separate spreadsheets for each focus group with seven row headings: transcript number, outline section, question asked, participant response, notes, code, and category (Guest & MacQueen, 2008; Watkins, 2012, 2017). The team coding session was led by BS, who has had extensive training and experience using this technique. Rigorous and accelerated data reduction (RADaR) was used to efficiently produce results (Watkins, 2012, 2017). Open coding identified concepts associated with caregivers’ approaches for managing BPSD. The coded data were then reduced by the first author to determine major categories of caregivers’ management strategies. All co-authors separately provided feedback on the categories. Minor differences of opinion were discussed and resolved among the authors as a group.

Results

Table 1 shows background characteristics for the 26 family caregivers. The majority of caregivers cared for a parent, provided care for at least 2 years, and gave over 10 hours of care per week. Most were women, married, and White, with a college degree or higher.

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Table 1.

Background characteristics for family caregivers of persons living with dementia (PLWDs) (N = 26).

Characteristic	n (%)
Relationship to PLWD
Adult child	15 (57.7)
Spouse	6 (23.1)
Other relative	5 (19.2)
Mean age 52 (range = 24–76)
Gender
Female	21 (80.8)
Male	5 (19.2)
Race
White	25 (96.2)
African American	1 (3.8)
Marital status
Married	18 (69.2)
Divorced	5 (19.2)
Never married	2 (7.7)
Widowed	1 (3.8)
Education
High school or less	1 (3.8)
Some college/Associate’s degree	5 (19.2)
Bachelor’s degree	11 (42.3)
Graduate degree	9 (34.6)
Duration of care
1 year or less	3 (11.5)
2–3 years	9 (34.6)
4–5 years	7 (26.9)
>5 years	7 (26.9)
Care hours per week
<5	1 (3.8)
5–10	5 (19.2)
11–15	8 (30.8)
16–20	1 (3.8)
>20	11 (42.3)
Mean age of PLWD 82 (range = 61–96)

Six major categories were determined (Table 2). Caregivers managed BPSD through (1) modifying interactions within the care dyad; (2) modifying the care environment; (3) activity engagement; (4) humor; (5) self-care; and (6) social support.

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Table 2.

Major categories of caregivers’ strategies for managing behavioral and psychological symptoms of dementia.

Category	Example
1. Modifying interactions within the care dyad	“… I have to hold myself back and say, you know, we have to go at this pace, you know. Even though it’s not my pace, it’s their pace and patience is critical.”
2. Modifying the care environment	“Sometimes with my mom I can write her a note and I’ll answer that question like, ‘Yes, I'm working tonight.’ So she’ll have it there, and sometimes when she gets ready to ask she’ll look and, ‘Oh okay, yes, you’re working tonight.’”
3. Activity engagement	“He loved the song 'Side by Side.' … We sang that song many times a day and often if things were kind of on edge or headed in a different direction, I would just start singing that song and he would sing along with me.”
4. Humor	“You know, developing a sense of humor about it and just trying to not take it seriously, not take it personally, and lots of little stories, you know, just laughing. . . . Try to bring in some laughter, something to share, kind of share the journey.”
5. Self-care	“So I would add to the breathing and the music, the self-care things like the prayer, the meditation, the exercise, and trying to get enough sleep yourself.”
6. Social support	“I talk to people that I feel I can unload on. Sometimes it comes up when I didn’t really intend to. I have to be able to talk about what I'm going through. I was just thinking today, you can't go through this alone. It’ll kill you.”

Discussion

The present study sheds light on the everyday strategies that family caregivers use to manage BPSD. In accord with the PLST and NDB models, caregivers modified interactions within the care dyad and the care environment to minimize stressors and address the PLWD’s unmet needs. Caregivers also expressed the value of humor, self-care, and social support in coping with the day-to-day challenges of difficult behaviors. The focus group approach used in this study expands the literature by interviewing caregivers among their peers, generating unique insights for interventions to mitigate caregiving stress.

Similar to other studies (e.g., Harvath, 1994; Huis in het Veld et al., 2016; Moore et al., 2013; Turner et al., 2015), caregivers adapted their interactions with the PLWD to fit his or her current functioning. Strategies included moving at a slower pace, simplifying communication, allowing BPSD to occur when they pose no harm, and refraining from challenging the PLWD’s beliefs. Such approaches may help to prevent distress for both care partners by avoiding unnecessary confrontation. As proposed by the PLST model, these strategies may also decrease BPSD through reductions in stressors that contribute to their occurrence (Hall & Buckwalter, 1987; Smith et al., 2004). Some caregivers indicated that they learned to modify how they interact with the PLWD over time as they realized their confrontational tactics (e.g., arguing) were unsuccessful. Indeed, caregivers who use punitive or confrontational strategies to manage BPSD report similarly negative reactions (e.g., resisting, becoming upset) from the PLWD (Song, Park, Park, Cheon, & Lee, 2016). This implies that education in the use of effective interaction strategies may be beneficial for caregivers early in the disease process.

Many caregivers discussed how they modified the care environment to manage BPSD. These modifications included maintaining a daily routine and using prompts to prevent problem behaviors. Such strategies are proactive and demonstrate caregivers’ recognition of BPSD as need-driven behavior. Caregivers also applied creativity and problem solving to maximize the PLWD’s strengths and capabilities, indicating their perceptions that he or she retains needs for autonomy and control. Environmental strategies that minimize potential triggers of BPSD can reduce their frequency (Kales et al., 2015). Consequently, these antecedent approaches may help to alleviate stress for PLWDs as well as their caregivers. By contrast, several caregivers observed that distraction strategies used in response to already occurring BPSD were not always effective. Taking the PLWD to get ice cream or engage in another pleasant activity when BPSD occur, for instance, could backfire by accidentally reinforcing these behaviors. Distraction strategies may also be limited to short-term reductions in BPSD or result in a constant need for redirection that is exhausting for caregivers (Moore et al., 2013; Song et al., 2016). Hence, caregivers could benefit from clinical guidance in the application of environmental modification strategies that are more or less likely to be successful.

In line with previous studies (de Vugt et al., 2004; Moore et al., 2013), a number of caregivers compared their management of BPSD to caring for children. Analogies to childcare may be useful in building on caregivers’ patience and empathy toward the PLWD. Furthermore, such comparisons could help caregivers draw from established skill sets (e.g., caregivers who are parents or have experience working with children) to more effectively manage BPSD. It is important to ensure, however, that caregivers with a nurturing orientation are not inclined to provide support over and above what the PLWD requires. Performing care tasks (e.g., dressing or eating) that the PLWD is still capable of completing independently, for example, may lead to excess disability (Verbugge & Jette, 1994).

Encouraging activity participation was mentioned as another approach to managing BPSD, aligning with prior work (Harvath, 1994; Huis in het Veld et al., 2016; Moore et al., 2013). Caregivers in this study used singing and dancing to engage the PLWD, along with activities that may promote his or her sense of usefulness or predementia identify. Activity-based strategies offer a host of potential advantages such as improving the PLWD’s mood, facilitating needed stimulation, and providing purposeful occupation, all of which may attenuate BPSD (Gitlin et al., 2008; Kolanowski, Fick, & Buettner, 2009; Teri & Logsdon, 1991). These approaches may also preserve core aspects of the PLWD’s personhood and help to sustain an emotional connection between care partners throughout the disease course.

Humor appeared to be a critical resource in managing BPSD for several caregivers, perhaps as a means to lighten the serious nature of dementia and reduce the tendency to feel hurt or offended by the PLWD’s upsetting behaviors (Dodds, 1994; Huis in het Veld et al., 2016). Having a sense of humor may also help caregivers keep a balanced perspective on dementia-related challenges and likely counteracts care-related stress. Additionally, humor may provide a way for caregivers to maintain positive elements of their predementia relationship with the PLWD (e.g., sharing a laugh).

Caregivers also stressed the centrality of self-care in their management of BPSD. Strategies such as participating in valued noncare activities, upholding healthy habits (e.g., getting adequate sleep and exercise), and taking a break from caregiving may restore caregivers’ emotional and physical capacity to handle the PLWD’s behavioral difficulties. Notably, research shows that caregivers have less exposure to care-related stressors, lower negative affect, and better cortisol regulation on days when the PLWD uses adult day services, suggesting that respite from caregiving offers a multitude of benefits (Leggett, Liu, Klein, & Zarit, 2016; Liu, Almeida, Rovine, & Zarit, 2016; Zarit, Kim, Femia, Almeida, & Klein, 2014). Similarly, whereas care-related activity restriction is linked to caregivers’ poorer mental and physical health, making time for social and leisure activities has been found to buffer caregiving stress (Chattillion et al., 2013; Mausbach et al., 2011; Schüz et al., 2015).

Lastly, caregivers emphasized the role of social support in managing BPSD. In particular, the caregivers in this study voiced their desire to meaningfully connect with peers who also care for a PLWD. This suggests that caregivers can serve as a crucial resource for one another by validating each other’s feelings, combating isolation, and sharing ideas for dealing with difficult behaviors. As one caregiver implied, support groups may be most useful in coping with BPSD when they involve frequent contact and facilitate opportunities for connecting outside the group to exchange ongoing emotional aid or practical assistance (e.g., stopping by to stay with the PLWD while the caregiver goes shopping).

This study has several limitations. First, caregivers were homogeneous in their sociodemographic characteristics and care situations, limiting generalizability. On average, the sample was highly educated and may use different strategies for managing BPSD than caregivers with lower education. Caregivers were also mostly women and adult children caring for a parent, consistent with current reports of dementia caregiving (Alzheimer’s Association, 2017). Future research should consider management strategies among more diverse types of caregivers. Second, the sample was self-selected and relatively small, which could introduce potential bias. Third, the retrospective appraisals assessed in this study may not represent the full spectrum of strategies that caregivers use in their real-time responses to BPSD. Fourth, among their peers, caregivers may have been more likely to highlight positive management strategies than more negative or punitive approaches. Nonetheless, the findings lay the groundwork for future research to delve more deeply into the everyday approaches that caregivers use to manage BPSD and their implications for both care partners.

In summary, the present study reveals that caregivers use a variety of strategies to avoid BPSD or lessen their impact. These approaches appear to be largely based on the perceived needs of each care partner, yet the findings suggest that routine clinical visits should include guidance in their implementation and evaluation. Elucidating understanding of how caregivers manage BPSD in their daily lives will inform the development of tailored interventions that more fully incorporate both care partners’ evolving needs and preferences.