Coping with cognitive impairment and dementia: Rural caregivers' perspectives.

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Article

Coping with cognitive impairment and dementia: Rural caregivers’ perspectives

Dementia 0(0) 1–18 ! The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301214539956 dem.sagepub.com

Camille Branger, Rachel Burton and Megan E O’Connell Department of Psychology, University of Saskatchewan, Saskatoon, Canada

Norma Stewart College of Nursing, University of Saskatchewan, Saskatoon, Canada

Debra Morgan Canadian Centre for Health and Safety in Agriculture, University of Saskatchewan, Saskatoon, Canada

Abstract Caregiving in a rural context is unique, but the experience of rural caregivers is understudied. This paper describes how rural caregivers cope with caring for a loved one diagnosed with mild cognitive impairment or dementia using qualitative description to generate a low-inference summary of a response to an open-ended question. This approach allowed these rural caregivers to describe their positive experiences in addition to the more commonly explored caregiver experiences related to stress. Analyses of coping revealed use of social support, engaging in relaxing and physical activity, and cognitive reframing. In addition, caregivers reported strong faith and religiosity, and to a lesser frequency behavioral changes, checking in with the person with dementia via telephone, and joint activity. Predominantly, these methods reflect approach-based strategies. The current data suggest that these caregivers manage well and adopt adaptive coping strategies to meet the demands of the caregiving role. Keywords caregivers, dementia, coping, rural, positive

Coping with dementia: Rural caregivers’ perspectives In Canada, informal caregivers provide care with a yearly estimated value of $26 billion (Hollander, Liu, & Chappell, 2009), but the incidence of dementia is projected to increase 250% between 2008 and 2038 (Dupuis, Epp, & Smale, 2004; Smetanin et al., 2010), which Corresponding author: Megan E O’Connell, Department of Psychology, University of Saskatchewan, 9 Campus Drive, Saskatoon, SK, S7N 5A5, Canada. Email: [email protected]

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will increase the number of informal caregivers (hereafter referred to as caregivers). Caregivers act as gatekeepers to health and social services, manage estate and finances, and delay long-term institutionalization for care recipients (Brodaty, 2007); consequently, the well-being of caregivers is important on a political, social, and economic front (Van Durme, Macq, Jeanmart, & Gobert, 2012). Caregiving in a rural context is unique, but the experiences of rural caregivers have not been well studied (Innes, Morgan, & Kosteniuk, 2011). The purpose of the current study is to describe how rural caregivers cope with caring for a loved one with cognitive impairment or dementia. This study used the methodology of qualitative description, as described by Sandelowski (2000, 2010), to create a low-inference summary of the experience of coping with the demands of caregiving. Qualitative description allowed us to take an explorative approach to an understudied area, rural dementia caregiving, and generate a description of the most salient themes brought forth by the research participants. The data collection method was an open-ended question, which, importantly, allowed rural caregivers to describe their positive experiences in addition to the more commonly explored caregiver experiences related to stress.

Stress theory Stress theory is often applied to caregiver research (Pearlin, Mullan, Semple, & Skaff, 1990); popular conceptualizations of the caregiver experience (i.e., caregiver burden or caregiver stress) are based on the process-based theory of stress which states stress is the result of an interaction between personal characteristics and situational factors (Lazarus & Folkman, 1984). Pearlin et al. (1990) postulate that stress represents a dynamic and ongoing process that directly affects the physical and psychological outcomes associated with caregiving (henceforth referred to as caregiver outcomes) (Pearlin et al., 1990). As the caregiving experience is assumed to be stressful, caregiver research has predominantly focused on the negative outcomes (e.g., depression, anxiety, and psychological distress) of caregiving and factors which serve to mediate these outcomes. Coping has been identified as a paramount mediator of caregiver outcomes and previous research has revealed that caregivers use a variety of coping strategies, some of which have been found to be adaptive and others maladaptive in the context of caregiving.

Coping strategies Broadly, coping strategies can be categorized as approach-based and avoidant-based (Suls & Fletcher, 1985). Approach-based coping describes strategies that direct attention to the stressor, promoting cognitive reframing, and behavioral changes aimed at mediating the negative effect of the event (Suls & Fletcher, 1985). Examples of approach strategies are: problem solving (i.e., actively seeking a solution or new solutions to a problem), positive reframing (i.e., attempting to view or reappraise the stressful event in a positive way), and seeking social support (McCarther Neundorfer, 1991; Papastavrou et al., 2011; Zucchella, Bartolo, Pasotti, Chiapella, & Sinforiani, 2012). Avoidance-based coping describes strategies that direct attention away from the stressor (Suls & Fletcher, 1985). Such strategies include: wishful thinking (i.e., wishing or thinking about life without the caregiving role), denial (i.e., refusing to acknowledge the stressful event), confrontive (i.e., lashing out or expressing anger), and emotive/palliative coping which attempts to pacify the negative feelings associated with the stressor rather than the stressor itself (e.g., smoking, eating, or



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drinking) (Jalowiec, Murphy, & Powers, 1984; McCarther Neundorfer, 1991; Papastavrou et al., 2011; Zucchella et al., 2012). Previous research that investigated coping strategies along with negative caregiver outcomes revealed that avoidant coping strategies predict caregiver physical health problems, depression, and anxiety in dementia caregivers (McCarther Neundorfer, 1991) and correlate highly and positively with depression and anxiety for caregivers of persons with dementia due to Alzheimer’s disease (AD; Cooper, Katona, Orrell, & Livingston, 2006). Avoidant strategies were found to be predictive of caregiver burden in caregivers of persons with early stage AD (Zucchella et al., 2012), in Asian caregivers of persons with dementia (Lim, Griva, Goh, Chionh, & Yap, 2011), and in correlated positively with burden in dementia caregivers (Papastavrou et al., 2011). In caregivers coping with Alzheimerrelated aggressive behaviors, avoidant strategies were found to correlate negatively with caregiver resilience (Wilks, Little, Gough, & Spurlock, 2011). Conversely, approach-based strategies have been found to correlate negatively with burden and depression (Papastavrou et al., 2011) and reduce perceived stress in caregivers of persons with dementia (Di Mattei et al., 2008; Goode, Haley, Roth, & Ford, 1998; McConaghy & Caltabiano, 2005). Interestingly, although caregivers use a variety of coping strategies, a common finding is that caregivers predominantly use approach-based coping as opposed to avoidant coping strategies (e.g., Cooper et al., 2006; Lim et al., 2011; McCarther Neundorfer, 1991; O’Connell, Germain, Burton, Stewart, & Morgan, 2013; Papastavrou et al., 2011; Wilks et al., 2011; Zucchella et al., 2012). This pattern of strategy use appears consistent across demographic variables suggested to affect use of coping style such as gender (Papastavrou et al., 2011) and degree of residential rurality (O’Connell et al., 2013).

Caregiving in a rural context Rural caregivers have been understudied compared to urban caregivers. For example, following a systematic review, Innes et al. (2011) concluded that rural caregiver experiences have been neglected in the literature on carer experiences. Coping in rural caregivers has been described as predominantly approach-based (O’Connell et al., 2013) or deliberate (another active) coping styles (Sun, Kosberg, Kaufman, & Leeper, 2010). More recently, Ehrlich, Bostro¨m, Mazaheri, Heikkila¨, and Emami (2014) conducted a cross-sectional comparison of rural and urban dementia caregivers in Sweden. Using a self-report questionnaire, the Caregiver Reaction Assessment, Erhlich et al. found differences between urban and rural dementia caregivers: financial impact was greater for rural caregivers, and support from family and friends was less for rural caregivers relative to urban caregivers. The social support finding is similar to that revealed from 68 caregivers from Thunder Bay, Canada, all of whom resided in relatively isolated communities, which revealed that coping strategies reflected a lack of available resources (such as respite) and inadequate social supports (Bowd & Loos, 1996).

Positivity in caregiving Studies of the impact of coping strategies on positive caregiver outcomes are less common in the literature and the findings from these few are inconsistent. For example, approach-based strategies were found to positively correlate with caregiver resilience (Wilks et al., 2011), but found to have no association with caregiver gains (i.e., personal satisfaction and growth)



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(Lim et al., 2011). This latter finding, however, may be due to coping strategies having an indirect effect on caregiver gains, or positive caregiver outcomes (Lim et al., 2011), as conceptualized by Pearlin’s caregiver stress process model (Pearlin et al., 1990). Further, investigating positive caregiver outcomes is challenging because these outcomes remain difficult to define and measure, in comparison to pathological caregiver outcomes (Farran, 1997). Consequently, positive caregiver outcomes have been largely understudied in contrast to negative outcomes; thus our understanding of the positive effects of approach-based coping remains limited. Although the effect of approach strategies on caregiver outcomes remains unclear, some approach-based strategies are considered positive outcomes in and of themselves, for example, finding meaning in caregiving. The notion of meaning comes from existential philosophy and describes the method by which persons make sense of challenging events in life, reframing the event in a positive light wherein it becomes meaningful in their understanding of themselves and their life (Farran, 1997). Coping strategies such as finding means are problematic when working within the stress and coping model. Not only is it unclear whether such a strategy should be considered a mediator, an outcome, or both, but the model assumes that the caregiving experience is overall stressful. Some researchers have suggested that the stress process model be expanded to incorporate positive aspects of caregiving, such as finding meaning (Farran, 1997). Others have developed a conceptual framework of positive aspects of caregiving (Carbonneau, Caron, & Desrosiers, 2010). Despite such efforts, a stress-based approach continues to dominate caregiver research, and this is evidenced in the content of most quantitative measures of caregiver coping, where items infer distress.

Measures of coping A strength in caregiver coping measures is their quantification of both approach and avoidant coping strategies, for example: the Coping Orientations to Problems Experienced (COPE) (Zucchella et al., 2012), the Ways of Coping Checklist (McCarther Neundorfer, 1991; Papastavrou et al., 2011), the Revised Ways of Coping Checklist (Maushbach et al., 2012), the Brief COPE (Cooper et al., 2006; Lim et al., 2011), the Coping Task Situations Questionnaire (Wilks et al., 2011), and Jalowiec Coping Scale (JCS) (Jalowiec et al., 1984). Nevertheless, a commonality in these measures is a tendency for the items to infer stress. For example, the JCS requires caregivers to respond on a Likert scale with the frequency by which they use a coping item such as ‘‘take off by yourself’’ or ‘‘want to be alone’’ (Jalowiec et al., 1984). The caregiver’s frequency rating on an item such as this would not capture the possibility that taking time alone may not be causing strain in the caregiver role and may serve to benefit the caregiver. In addition, the instructions of some measures may be limiting. For example, the COPE measure used by Zucchella et al. (2012) requires the caregiver to answer items based on how they believe they behave in stressful situations generally, which is inconsistent with the common finding that caregivers use a diverse repertoire of coping strategies (Pearlin et al., 1990). Finally, these diverse strategies may not be adequately addressed by current measures wherein a finite number of items can only address a finite number of factors. For example, the JCS provides three types of coping strategies (confrontive, emotive, and palliative) (Jalowiec et al., 1984), as does the Brief COPE (problem-focused, emotion-focused, and avoidant), (Cooper et al., 2006) and the Coping Task Situations Inventory (task-focused, emotion-focused, and avoidance-focused) (Wilks et al., 2011). The COPE measure is slightly more in depth as it addresses five



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factors (social support, avoidance, positive attitude, problem solving, and religious orientation) which importantly includes a measure of religiosity. High religiosity or spirituality has been reported as strong mediators of caregiver outcomes (Farran, 1997; Lim et al., 2011; Zucchella et al., 2012). Although measures such as the JCS and the COPE have provided invaluable insight into how factors in caregiving interact to impact caregiver outcomes, the nature of the stress and coping model and the measures born out of this model limit researchers’ ability to capture caregivers’ experiences in entirety, particularly in the case of positive coping and outcomes. Positive coping and positive outcomes are ill-fitted for stress models wherein coping infers adjustment rather than personal growth, the latter of which is commonly reported by caregivers (e.g., Farran, 1997; Farran, Keane-Hagerty, Salloway, Kupferer, & Wilken, 1991; Lim et al., 2011). Stress models also fail to explain the finding that problem-solving strategies (i.e., approach-based coping strategies) are associated with feelings of personal gain (Kramer, 1997; Talkington-Boyer & Snyder, 1994); a caregiver outcome that describes feelings of personal satisfaction, personal and spiritual growth, increased appreciation for life, and improved interpersonal relationships (Lim et al., 2011; Saunders, 2005). Due to difficulty reconciling these personal growth/gain findings within stress-based models of caregiving, some researchers have called for more qualitative investigation into the caregiver experience (e.g., Farran, 1997; Lim et al., 2011), which would allow a better understanding of ‘‘how’’ and ‘‘why’’ caregivers appear to manage well with the challenging role of caregiving for a person with dementia (Farran, 1997). To avoid presupposing a stress and coping theory when asking caregivers’ about their experiences, rather a general broad question is preferred. A non-directional question leaves it to each caregiver to provide their own interpretation of coping with caregiver demands. The purpose of the current study was to determine, through qualitative design with an open-ended question, how rural caregivers of persons with dementia view coping with the caregiver role.

Method Methodology This study used the methodological approach of qualitative description (Sandelowski, 2000, 2010). Qualitative description is a category of qualitative method described by Sandelowski (2000, 2010) and it was used to describe how caregivers of persons with dementia cope with the demands of the caregiver role. Here, we assumed a primarily unidirectional relationship between meaning, experience, and language; moreover, we assumed that participants were using language to articulate their experience (Braun & Clarke, 2006). Qualitative description was used to create a low-inference descriptive summary of the experience of coping with the demands of caring for an individual with memory difficulties living in a rural community. We were particularly interested in generating a comprehensive summary of what helps caregivers to cope that could be used to guide professionals while supporting caregivers and inform future research.

Data sources and methods of data generation The sample was consecutive caregivers of persons diagnosed with mild cognitive impairment (MCI) or some form of dementia after attending a Rural and Remote Memory Clinic (RRMC; Morgan et al., 2009). Informed consent (and patients’ proxy consent in the



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event of diminished capacity) was obtained for these data, in accordance with ethical guidelines. The patient population of the RRMC includes persons living in rural areas (defined as 100 km outside the two main urban centers of the province) who have been referred to the clinic for memory or other cognitive or behavioral concerns (Morgan et al., 2009). The geographic characteristics of this sample vary from what would be considered urban to remote in Canada. It is important to note the ‘urban’ centers of families in this sample are relatively small (i.e., populations of 43,000; 33,000; 15,500; 15,000, and 14,000), which overlaps with what has been described as rural in other studies (e.g., Bedard, Koivuranta, & Stuckey, 2004). In addition to the patient’s psychological assessment, the caregivers complete measures of caregiver burden, psychological distress, and quality of life (Morgan et al., 2009). As part of the assessment, individuals caring for a person diagnosed with dementia were asked the open-ended question, ‘‘What helps you cope on a day-to day basis with the demands experienced as a caregiver to someone with memory difficulties?’’ Participants wrote their responses to this question and these written responses formed the data that were analyzed.

Participants The responses of 166 caregivers of persons diagnosed with MCI or dementia were included in the analysis. Caregivers included wives (n ¼ 59), husbands (n ¼ 30), daughters (n ¼ 51), sons (n ¼ 16), and others (n ¼ 10). Seventy percent of caregivers were in contact with the patient every day. Patient diagnoses were dementia due to Alzheimer’s disease (AD, n ¼ 64), frontotemporal dementia (FTD, n ¼ 16), Lewy body dementia (DLB, n ¼ 9), vascular dementia (VaD, n ¼ 3), dementia due to multiple etiologies (n ¼ 15), other dementias (n ¼ 30), or mild cognitive impairment (MCI, n ¼ 31).

Data analysis Participants’ written responses were coded using qualitative content analysis (Sandelowski, 2000, 2010). The data were coded and analyzed by four coders, three of whom met to discuss the patterns and regularities that had emerged from the data. The themes that are presented were reviewed, defined, and named collaboratively. Data analysis occurred following data collection, and although all 168 responses were reviewed, it was clear that saturation was reached early in the coding process. Finally, to provide a richer understanding of the data, frequency counts of commonly endorsed themes were provided and wherever possible these frequencies were described within sub-groups of caregivers based on relationship to the person with cognitive impairment or dementia.

Findings Caregivers who participated in the study wrote about a range of approaches to coping with everyday demands that fit within six themes. Broadly, these themes can be described as use of social support, making time for self, adaptation through behavioral and cognitive changes, reliance on faith and God, checking in, and engaging in joint or reciprocal activity with the care recipient. The most common coping method reported by this sample of caregivers was social support (55%) followed by time for self (38%) (see Table 1 for frequency and percentage of coping method used across caregiver/care-recipient relationship type).



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Table 1. Coping method by caregiver/care-recipient relationship type, presented in frequency and percentage rating. Social support

Time for self

Restructuring

Faith/religion

Joint activity

Checking in

Multiple methods

Relationship N

n

%

n

%

n

%

n

%

n

%

n

%

n

%

Wife Husband Daughter Son Other Total

33 11 34 8 6 92

56 37 67 50 60 55

28 11 15 5 4 63

47 37 29 31 40 38

17 9 16 2 3 47

29 30 31 13 30 28

13 3 6 2 1 25

22 10 12 13 10 15

7 0 5 1 1 14

12 0 10 6 10 8

0 8 6 3 1 27

0 26 12 19 10 16

41 15 31 8 4 99

41 53 61 50 40 59

59 30 51 16 10 166

Table 2. Frequency of co-occurring coping themes endorsed by caregivers. Co-occurrence of coping

Frequency

Social support/time for self Social support/restructuring Social support/time for self/spirituality Social support/spirituality Social support/time for self/restructuring Social support/time for self/restructuring/joint activity Social support/restructuring/spirituality Social support/check-in Social support/restructuring/joint activity Social support/time for self/restructuring/spirituality Social support/joint activity/restructuring Social support/joint activity/check-in Social support/time for self/spirituality Time for self/restructuring/joint activity Time for self/spirituality

20 11 8 8 4 3 3 3 2 1 1 1 1 1 1

Fifty-nine percent of this sample reported using more than one coping method. Social support and time for self were the most common co-occurrence (20/166) of coping themes among these caregivers (Table 2).

Social support Relying on social support from either friends or family members or, less frequently, from professional services emerged as the most common method of coping – reported by 55% of the sample (92 of 166 caregivers). Social support coping appeared to vary to some degree based on relationship: daughter caregivers (67% of all daughter caregivers), ‘other’ caregivers (60%), wife caregivers (56%), and son caregivers (50%). In contrast, husband caregivers reported using social support as commonly as time for self (37%). Predominantly,



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friends and family appeared to provide emotional support either through phone conversations or in-person contact, the latter of which also provided opportunities for the caregiver to engage in activity outside the home. Friends - I have good friends I can phone when the pressure is too much. I like to go to our seniors’ club, play cards and socialize. Going for coffee with friends, . . . They [activities outside the home] get me out and I associate with other people with different interests. If I could not call on . . . daughters hourly (or often), I would have much more trouble. We’re so blessed to have 3 daughters in COMMUNITY and a son 45 min away who are very supportive.

A few caregivers reported that their partner, and a strong marriage, was integral in coping with caregiving. These partners appear to serve as a sounding board for the caregiver, offering advice and at times providing a fresh perspective on the caregiver’s experiences. Have a very close relationship and excellent marriage, so we talk a lot, do a lot of things together. Have very close contact and relationship with our children and their families. Our son and his family live in the same yard, so we have a very close relationship with them and partake in many of the grandchildren’s activities, which gets us out of the house frequently. We are in constant contact with our children over the phone and through regular visits. I help cope with mom’s difficulty with the upbeat of my husband E. We try and go out once a day for coffee with friends and most days mom will come with us. Also a precious little granddaughter we babysit one day a week. She’s a joy to all of us. She can surely brighten up Nana V’s day and it’s so nice for us to see. My husband is a big help and support and probably is called on to shoulder more than he should have to at times, but sometimes it is my turn. My husband is very patient and kind and reminds me when I get impatient with my Mom.

Help with planning and decision making. Although reported less frequently, some caregivers noted that friends and family provided instrumental care, occasionally alleviating daily demands, but also weighing in and offering advice on difficult decisions. My sister and I have regular telephone conversations and we discuss our experiences with Mom. During the conversation we discuss possible plans of action for future.

Professional services. Importantly, caregivers who received information from professionals regarding, for example, the nature of the care recipient’s illness, or the most effective method of performing certain caregiving duties, reported this information as bolstering their ability to cope. Additionally, a few caregivers were able to employ professional services, which reduced daily demands such as food preparation or activities of daily living for the care recipient. (I took care of my mother for 22 years, the last 8 months as a bed patient) I was grateful for the hospital training I received. It helped me. At the present time I can cope with things. Went to 1.5 hour Alzheimer awareness class. The videos and information they gave us at the brain injury clinic helped me to understand and kind of know what to expect after someone has suffered a stroke.



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I depend on . . . health care professionals and workers to provide help for B and share the care. I have housecleaners come in once a week as well as people to do the lawn care. I work during the day away from home and have home care come in to help B shower up.

Time for self As part of their coping repertoire, 38% of caregivers (63/166) reported the necessity of making time for self, and this was a particularly prevalent approach to coping in wives (47%). Within this broad category, we identified relaxing activities, physical activity, work and career, and routine as sub-themes. Extracts that describe how participants took time for themselves are presented for each of these categories. Relaxing activity. Participants took time for themselves by engaging in a relaxing activity such as watching TV, reading, or engaging in personal hobbies. Listening and singing along with music. Relaxing in my reclining chair – possibly catching a nap in the warm afternoon sun . . . .two weeks ago I drove to TOWN without my husband, just to get away from him . . . .I also really enjoy reading- but not fiction. I also find just letting him go his own way and do his own thing is best. Thank heavens for a driver’s license for both of us. If I can find 15 minutes to sit down, read, knit, or crochet or just nap, I’m fine. Doing an activity that is just for me, I started a pottery class and find it enjoyable and relaxing. Sometimes I need a break, get away to shop and have lunch. Tend to leave home - go for drive when needing time to self.

Physical activity. Physical activity was commonly reported as a means of coping, and caregivers did this either alone as part of their time for self, or with the care recipient. Best thing I can do is go for a brisk 45 minute walk with my dog. I walk the dog most days anyway for 30 – 45 minutes as that is ‘my’ time and it helps me deal with everyone better. I do gardening, which I just love to do. I garden and mow the lawn for exercise. We walk a lot, probably at least twice a day for 20 to 30 minutes. Getting out of the house and going to the shop to tinker, hunting, ice fishing, going for a drive.

Work and career. Caregivers who were able to continue working or volunteering note this as an important method of coping. Working provided these caregivers with personal time that enables them to participate in a role outside of the caregiving role. Caregivers may feel a greater sense of control within the work environment and success here may serve to bolster feelings of self-efficacy, which appears to extend to the caregiving role, enhancing the caregivers’ ability to cope. I really enjoy my job and work and I know that I can control my environment there so I have that to feel good about. Satisfaction from my job and support from my co-workers. My work and keeping customers happy. You have to have a reason to get up in the morning- a project, new job site, new people, event, something.



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Dementia 0(0) Keeping busy doing volunteer work and listening to and playing music, . . . , riding and caring for my horses.

Routine. Keeping busy and establishing a routine often emerged from the data in addition to planning positive outings for the near and distant future. I keep myself busy with my everyday work. Go out to do volunteer work at the museum. Try to plan daily activities that don’t interrupt Dr. appointments, etc. Routines that she agrees to follow (e.g. Laundry- Monday, bridge- Thursday . . .). We always have something positive coming up and are always planning ahead for something positive to do. That may be only a drive in the country, a cruise in the near future or an extended holiday in V. (everyone needs something to look forward to).

Restructuring Behavioral changes. Twenty-eight percent of caregivers reported that making changes to their daily routines aided in their ability to cope. For daughters, this restructuring was the second most common method of coping used (31%). Some of these reflected changes in daily activities that serve to offset the additional demands of caregiving. We are starting to use more pre-prepared meals. Organizing my daily activities carefully. I am a very routine person. I cope best by trying to be in control of my environment.

Other caregivers report actively changing the way they respond to the challenging behaviors associated with the care recipient’s changes. I try and challenge some of her rigid thinking ex. What will happen if you don’t arrive half an hour to an hour early? Sometimes use avoidance techniques like just not talking in order to avert confrontation. Just try to give her little reminders. Some caregivers report making personal changes, for example, journaling their caregiving experiences. I write in a diary of the day’s activities and if I’ve reacted to/on an issue that arose. Have started to journal incidents that have happened. I have accepted the responsibility for us.

Cognitive changes. Active cognitive changes were also reported, and these changes may reflect accepting the reality of the care recipient’s illness and modifying their expectations in the caregiving role. I understand that her memory is failing and there is not much I can do about that. I know that memory loss is a part of getting older and understanding that is how I cope. I don’t think I could if I didn’t understand that. I realize that this is beyond his control and I know he would wish it to be different. I no longer have much expectation of him in doing things, if he will do something helpful, I am appreciative.



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I am learning to reduce my expectations of myself and my mother in an effort to reduce frustrations when those expectations aren’t met. I have also learned I cannot be everything to everyone (my sisters, my mother, my husband, my kids) and that they will have to do some problem solving on their own.

Some cognitive changes reflect actively acknowledging the positive aspects of the situation or focusing on virtues that would benefit coping with the caregiving demands, such as patience and remaining positive. Thinking on positive things and by counting my blessings. When I work and see people who are worse off than me. I cope by telling myself that I don’t have as many problems as many other people and some of my problems may be taken care of in the near future by standing on my own feet. Remember when I get up it’s a new day, yesterday has been forgotten. There is always time in the day to so something new and fun. But, always make some time for myself. Basic cleaning chores will always be there. Knowing that tomorrow is a new day and that everyday isn’t always as bad as the last. Try to remain focused on what we can do to have a good day- remind myself ‘‘in the big picture, does it really matter?’’ Self-affirmation - remind myself that I’m doing the best I can. Understand[sic] and patience.

A few caregivers report that reflecting on what the care recipient was like before their dementia, and reflecting on the nature of their relationship with the recipient, aids in their coping with the current challenges of fulfilling the caregiver role. Being grateful for the many years that my mom took care of myself and my children. Recalling fond memories of what mom was like. I cope because I promised T that I would do everything I possibly can to help her remain in her own home and I will to the best of my ability.

Some caregivers reported a focus on being positive and patient in the caregiving role. Laughter and the use of humor were reported by several caregivers. These cognitive changes seem to reflect a sense of acceptance, a desire to ‘make the most’ of the situation, accepting responsibility, and acknowledging personal gain. Being cheerful and positive. And a positive attitude. So many things to be thankful for. Being pleasant . . . I try to stay positive and optimistic about our future. Patience and understanding. I also have to use a lot of patience to not get angry when my wife forgets things. As the wife I do my best not to get emotional about things he talks about in a negative way. So I am resigned to have whatever patience and love needed to help her in her time of need. It makes me feel good to be able to help.

Faith and religion Fifteen percent of caregivers in this sample, particularly wife caregivers (22%) reported strong faith in God, and finding strength in prayer as integral in their ability to cope.



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Assuming the caregiving role can be associated with a sense of loss of control, in comparison to life before caregiving, these reports seemed to reflect relinquishing control over to a higher power, or praying for personal strength. In the morning I give myself over to God. Daily mass on TV, Bible readings, listening to gospel songs gives me strength for the day. Start the day with prayer, asking for guidance and patience. Other caregivers used praying as a form of meditation, or relaxation. Having personal faith . . . I depend on God’s strength and comfort . . . I also keep a daily prayer and meditation journal. My faith in God and praying and meditation. Prayer - we pray a lot especially the Rosary. It sure keeps me rolling along.

Joint/reciprocal activity Eight percent of caregivers reported engaging in joint or reciprocal activity with the care recipient as a means of coping. This method of coping was not reported by husband caregivers and was endorsed less often by son caregivers (6%) compared with wife and daughter caregivers. This theme seems to reflect caregivers who continue to identify as a partner to the care recipient rather than solely a caregiver. Trying to make it easier for him. I am sure at first he felt very awful and degraded. I try to say, ‘‘you’re okay’’ and even though I know there is no ‘‘cure’’ I’m trying to make him get through the changes and hold only the ‘‘good days’’ now. We seem to communicate very well as both of us being retired we spend a lot of time with relatives and family. I try to keep her occupied with different things to do. If one of us cannot remember something, usually the other can.

Checking in For those caregivers who do not live with the care recipient the ability to check-in with the care recipient, or family members/health care professionals who are in frequent contact with care recipient was important in their coping. This method of coping was endorsed by 16% of the caregivers, and slightly overrepresented by husband and son caregivers. Because my mom does not live in CITY I usually just call every day or two to see how she is and to remind her of what needs to be done or suggestions as to what to have for supper that day. Frequent contact with care manager (info), plus phone calls to my mother. For now I keep in contact with her and my sisters and brothers frequently by phone. We’ve also agreed to take turns visiting her throughout the year- at least once a month to see how’s she’s managing. I live closest so I probably will see her the most.

Discussion Through qualitative design, the current study investigated how a sample of caregivers of persons with dementia viewed coping with caregiving demands. From the data, seven key themes of coping emerged. Consistent with previous literature (Pearlin et al., 1990), the



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majority of these caregivers reported two or more methods of coping. The most common methods reported were the use of social support, engaging in relaxing and physical activity, and cognitive changes; followed by strong faith and religiosity; and to a lesser degree behavioral changes, checking in, and joint activity. Social support emerged as the most common approach to coping, and this is consistent with Ehrlich et al.’s (2014) finding that rural caregivers report fewer difficulties accessing support from family and friends than urban caregivers. It is inconsistent with the findings of Bowd and Loos (1996) that rural caregivers lack social support, but these communities were particularly remote which could account for our different findings. Predominantly, the methods reported here reflect approach-based strategies. The current data suggest that these caregivers manage well and adopt adaptive coping strategies to meet the demands of the caregiving role. These findings are consistent with some aspects of Pearlin et al. (1990) stress process model, yet in the context of the current findings it becomes clear that the assumptions put forth by the model limits its ability to aptly describe these data. The findings of this study are consistent with the stress process model in that they support the notion of coping interacting with a number of factors affecting the caregiver experience. Although Pearlin et al. (1990) describe social support as separate from coping, the model acknowledges that both are mediating elements. The influence of caregiver characteristics and caregiving context on coping and social support is easy to appreciate in the current study’s findings. For example, the nature of a caregiver’s social network prior to caregiving, or their personal disposition, likely influences their reliance on social support, or positive thinking, respectively. As predicted by the model, the efficacy of coping with the cognitive and behavioral challenges (primary stressors) of the care recipient would influence the caregiver’s experience of secondary strains such as family conflict and constriction of social life. Here, the results of this study blur the lines between coping, social support, and social life. The majority of caregivers report frequent communication with friends and family as a means of coping; this interaction is reported in the findings as expanding rather than constricting social life by getting the caregiver ‘out of the house’ and appears to strengthen family ties rather than create conflict. The stress process model runs into further challenges in the context of caregivers who report feelings of personal gain as a method of coping. According to Pearlin et al. (1990), ‘gain’ belongs to the element of intrapsychic strains, which affect caregiver outcomes. Yet, one caregiver reports that coping is possible because fulfilling the caregiving role ‘‘makes me feel good to be able to help’’ suggesting this is not only a means of coping but also a positive caregiving outcome. Finally, the finding that caregivers predominantly use approach-based coping strategies poses an additional challenge to the stress process model. The majority of coping methods described in this study appear to be approach-based strategies. Whereas avoidant-based strategies have been found to be predictive of caregiver burden and depression (Lim et al., 2011; Sun et al., 2010 Zucchella et al., 2012), approachbased strategies have been found to negatively correlate with these caregiver outcomes (Papastavrou et al., 2011), to reduce caregiver stress (Di Mattei et al., 2008; Goode et al., 1998; McConaghy & Caltabiano, 2005) and to bolster caregiver resilience (Wilks et al., 2011). The stress process model assumes that the experience of caregiving is overall stressful and will impact negatively on the caregiver’s physical and psychological health. However, if caregivers predominantly rely on approach-based strategies then it is possible that researchers have exaggerated the degree to which caregiver experience negatively impacts caregiver health.



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We do not argue that the stress process model is incorrect, as the important elements and interactions are there. Rather, the assumptions of stress and negativity limit the understanding the caregiving experience as a whole. Many measures of caregiver coping are based on stress/adaptation models (e.g., Ways of Coping Checklist, Coping SelfEfficacy scale, COPE, Brief COPE, Coping Inventory, and JCS) wherein phrasing of the items insinuate stress and the method of response (i.e., Likert scale frequency rating) does little to allow elaboration on the content of these items. Although the question posed in the current study also insinuates the caregiving experience is stressful (i.e., ‘‘What helps you cope on a day-to-day basis with the demands experienced as a caregiver to someone with memory difficulties?’’), the data gleaned from these interviews reveal the impressive resilience of caregivers and presence of positive outcomes in caring for a person with dementia. These findings are consistent with previous qualitative caregiver investigations. Farran, Keane-Hagerty, Salloway et al., (1991) report on a sample of caregivers who appear to manage well and seem ‘‘completely content and at peace’’ fulfilling the caregiving role. Attempts to interpret these data within the stress/adaptation framework resulted in the data regarding positive outcomes being unaccounted for (Farran, 1997). Instead, Farran applied the notion of finding meaning, which was a good fit with the data, leading to the suggestion that the stress process model be expanded to incorporate finding meaning as well as positive caregiver outcomes. ‘‘Meaning’’ from this perspective refers to the process by which one makes sense of their reality, in relation to their experiences and their affective responses to those experiences (Hunt, 2003). In this perspective, feelings hold a dialectical relationship, wherein, for example, the caregiver cannot experience hope without having experienced hopelessness, or gain without loss. This is important as it allows for the challenges and stresses associated with the caregiving role to exist alongside, and indeed engender, the positive aspects of the caregiver experience through the method of finding meaning. Finding meaning is a method by which the caregiver reconciles the incongruence between what their expectations are and what is actualized (Hunt, 2003). These incongruences can exist on a small-scale level of daily events and can exist on a large scale level of life. In this way, caregivers can find ‘provisional meaning’ in the demands associated with the caregiving role but can also seek and find ‘ultimate meaning’ as it relates to the entire caregiving experience (Farran, 1997; Kramer, 1997; Noonan & Tennstedt, 1997). Extrapolating on this, Farran, Miller, Kaufman, Donner, & Fogg (1999) devised the finding meaning through caregiving scale (FMTCS). This 43-item scale addresses: feeling of loss and powerlessness (e.g., ‘‘I feel the quality of my life has decreased), finding provisional meaning (e.g., ‘‘Caregiving makes me feel good that I am helping’’), and finding ultimate meaning (e.g., ‘‘I believe in the power of prayer’’). By expanding the stress/adaptation framework, the FMTCS provides a means of describing the caregiver experience that addresses the negative and positive aspects of the role without imposing assumptions about their experience. Measures based on the stress adaptation framework, where items infer stress, necessarily limit the caregiver’s ability to express any positive or beneficial experience associated with the caregiving role. A more fulsome understanding is important, as the goal of caregiver research is to better understand the caregiver’s experience such that we may support them in this very crucial role. If researchers and clinicians adjust their conceptualization of the caregiver experience to reflect that challenges of caregiving co-exist with benefits, then



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we can continue efforts to decrease strain and burden while aiming to facilitate caregiver gain. All caregivers in this sample lived in rural and remote areas, which could affect the pattern of coping methods used, and thus the generalizability of the findings. These caregivers also represent a help-seeking sample, thus the information and guidance gained from interaction with the RRMC may have bolstered the caregiver’s confidence in fulfilling the caregiving role. Another caveat to consider is that although the question posed to this sample inferred the caregiving experience is stressful, this did not appear to influence responses as they were predominantly positive in nature. However, future studies should be cautious in the wording and framing of questions. Acknowledgements The authors acknowledge all of the families who attend the Rural and Remote Memory Clinic.

Conflict of interests None declared.

Funding CB’s work was supported by a Master’s award from the Social Sciences and Humanities Research Council. RB’s work was supported by a doctoral award from the Alzheimer Society of Canada. DM’s work was supported by a an Applied Chair in Health Services and Policy Research from the Canadian Institutes of Health Research (CIHR) and the Saskatchewan Health Research Foundation (SHRF).

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Sandelowski, M. (2000). Focus on research methods-whatever happened to qualitative description? Research in Nursing and Health, 23(4), 334–340. Sandelowski, M. (2010). What’s in a name? Qualitative description revisited. Research in Nursing & Health, 33(1), 77–84. Saunders, S. (2005). Is the glass half empty or half full? Reflections on stain and gain in the caregivers of individuals with Alzheimer’s disease. Social Work Health Care, 45, 57–73. doi:10.1300/ J010v40n03_0. Smetanin, P., Koback, P., Briante, C., Stiff, D., Sherman, G., & Ahmad, S. (2010). Rising tide: The impact of dementia on Canadian Society 2008 to 2038. Alzheimer Society. Retrieved from www.alzheimer.ca. Suls, J., & Fletcher, B. (1985). The relative efficacy of avoidant and nonavoidant coping strategies: A meta-analysis. Health Psychology, 4, 249–288. Sun, F., Kosberg, J. I., Kaufman, A. V., & Leeper, J. D. (2010). Coping strategies and caregiving outcomes among rural dementia caregivers. Journal of Gerontological Social Work, 53(6), 547–567. Talkington-Boyer, S., & Snyder, D. (1994). Assessing impact on family caregivers to Alzheimer’s disease patients. American Journal of Family Therapy, 94(1), 57–66. Van Durme, T., Macq, J., Jeanmart, C., & Gobert, M. (2012). Tools for measuring the impact of informal caregiving of the elderly: A literature review. International Journal of Nursing Studies, 49, 490–504. Wilks, S. E., Little, K. G., Gough, H. R., & Spurlock, W. J. (2011). Alzheimer’s aggression: Influences on caregiver coping and resilience. Journal of Gerontological Social Work, 54(3), 260–275. Zucchella, C., Bartolo, M., Pasotti, C., Chiapella, L., & Sinforiani, E. (2012). Caregiver burden and coping in early-stage Alzheimer disease. Alzheimer Disease & Associated Disorders, 26(1), 55–60.

Camille Branger is a graduate student in clinical psychology at the University of Saskatchewan working under the supervision of Dr. Megan O’Connell. Camille is studying the positive aspects of providing informal care to a person with dementia. Specifically, her dissertation research will investigate the relationship between finding meaning and caregiver well-being and will explore how culture and the caregiver/carerecipient relationship influence finding meaning in informal caregivers. Rachel Burton is a PhD student in clinical psychology at the University of Saskatchewan working under the supervision of Dr. Megan O’Connell. Rachel’s dissertation research focuses on cognitive rehabilitation for individuals diagnosed with early stage dementia due to Alzheimer’s disease. Her research interests focus on dementia care and include the use of videoconferencing, research ethics, and neuropsychological assessment. Megan E O’Connell (PhD, RD.Psych.) is an assistant professor in the Department of Psychology where she teaches in the graduate program in clinical psychology. She is the clinical psychologist at the Rural and Remote Memory Clinic, an interprofessional diagnostic clinic for dementia. She also collaborates with the Alzheimer Society of Saskatchewan to deliver a videoconferenced support group for spousal caregivers of persons diagnosed with dementia due to frontotemporal lobar degeneration. Current programs of research include neuropsychological measurement relevant to dementia and evaluation of telehealth videoconferencing for caregiver support, and issues specific to rural dementia care.



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Norma J Stewart (PhD, RN) is a professor in the College of Nursing at the University of Saskatchewan, Saskatoon, Canada. Her research interests are in rural dementia care and rural health services. She is co-principal investigator on a project, funded by the Canadian Institutes of Health Research (CIHR), which will replicate and extend a national survey of nursing practice in rural and remote Canada (2013–2016). Debra Morgan (PhD, RN) is a professor at the Canadian Centre for Health & Safety in Agriculture, University of Saskatchewan. She holds a Chair in Rural Health Delivery and a Canadian Institutes of Health Research (CIHR) Applied Chair in Health Services & Policy Research (2009–2014) titled ‘‘Healthcare Delivery Across the Continuum for Rural and Remote Seniors with Dementia.’’ Her research program focuses on rural and remote dementia care, including community- and institution-based care. She was the principal investigator of a CIHR New Emerging Team titled ‘‘Strategies to Improve the Care of Persons with Dementia in Rural Areas.’’ She is currently leading a new initiative in rural community-based primary healthcare for individuals with mild cognitive impairment or dementia – the Rural Dementia Action Research (RaDAR) Team.’’


Sleep disturbances and predictive factors in caregivers of patients with mild cognitive impairment and dementia.

Religious Coping in Caregivers of Family Members With Dementia.

Vascular cognitive impairment and dementia.

Biochemical Markers of Physical Exercise on Mild Cognitive Impairment and Dementia: Systematic Review and Perspectives.

Cognitive impairment: dementia and Alzheimer's disease.

Geriatric depression and its relation with cognitive impairment and dementia.

Caregiving stress and coping: a thematic analysis of Chinese family caregivers of persons with dementia.

Prevalence of cognitive impairment no dementia in a rural area of Northern China.

Prevalence and covariates of elevated depressive symptoms in rural memory clinic patients with mild cognitive impairment or dementia.

Nonamnestic mild cognitive impairment progresses to dementia with Lewy bodies.

Effectiveness of coping strategies intervention on caregiver burden among caregivers of elderly patients with dementia.

Stress-buffering Effect of Coping Strategies on Interrole Conflict among Family Caregivers of People with Dementia.

Help yourself: perspectives on self-management from people with dementia and their caregivers.

Cognitive profiling of Parkinson disease patients with mild cognitive impairment and dementia.

Clinical and Cognitive Phenotype of Mild Cognitive Impairment Evolving to Dementia with Lewy Bodies.

Problems experienced by informal caregivers with older care recipients with and without cognitive impairment.

Clinical-pathologic correlations in vascular cognitive impairment and dementia.

Intellectual Disability, Mild Cognitive Impairment, and Risk for Dementia.

Mild cognitive impairment and progression to dementia: new findings.

Translating cognitive and everyday activity deficits into cognitive interventions in mild dementia and mild cognitive impairment.

Diabetes: A risk factor for cognitive impairment and dementia?

Mild cognitive impairment and mild dementia: a clinical perspective.

White matter hyperintensities, cognitive impairment and dementia: an update.

Vascular contributions to cognitive impairment and dementia including Alzheimer's disease.