Understanding the Quality of Life Impacts of Providing Informal Care to People with Dementia: A Systematic Review of Qualitative Studies

Emotion coping

Emotion coping describes the capacity and approaches utilized by informal carers to regulate positive and negative emotional responses to potentially stressful situations in caring [86]. Positive emotional coping refers to approaches taken by informal carers to enable positive reappraisal of their situation, regulation of emotions and acceptance of their situation [86]. Positive emotion coping was positively associated with improved QoL. Several papers reported that participants utilized positive emotional coping strategies such as self-compassion, humor, hobbies, reliance on faith and preserving normalcy to regulate their emotions, reframe situations positively, and facilitate resilience in situations that can cause informal carers’ distress [30, 73]. Informal carers mentioned that having a sense of humor has been a helpful approach in maintaining positive emotional health and wellbeing when confronted with stressful situations and adjusting to changes in the person with dementia [30, 52]. Faith has been expressed as a source of inner strength and to a lesser extent, a method to give carers perspective of realities in caring and the practice of gratitude for their situation not being worse [62, 73].

Positive reappraisal refers to viewing positive aspects of caring such as providing carers with a sense of purpose, an identity, and their achievements from their caring role and demonstrating their capability in supporting a person with dementia [40, 70]. For example, one study reported a carer who felt responsible to serve as a role model to their children after taking on the role of a carer for a person with dementia [50]. A few factors that facilitated carer resilience included accepting current caring situation and changes in the person with dementia and their lifestyle and directing their focus on fulfilling daily caring duties instead of ruminating on the past and future concerns [34, 57]. Carers’ acceptance of their role was associated with carers feeling a sense of responsibility towards their care recipient, finding meaning in supporting a person with dementia and associating their caring role with their own identity [55, 64]. A few studies reported that adult child carers who define caring as a means of “giving back” to their parent with dementia for their previous care and felt a sense of “satisfaction” from “giving back” [55, 61]. From a family perspective, maintaining shared family values and memories of helping each other evoke a sense of togetherness and normalcy, which can be interpreted as a form of positive emotion coping for both carer and the person with dementia [54]. Emphasis on positive thoughts about caring in recognizing joyful and positive experiences in caring was associated with building strength [55]. In terms of coping for the future, some carers expressed a sense of hopefulness that Alzheimer’s disease medication can delay or prevent disease progression [73]. Self-compassion was mentioned in only one study, where a carer felt like their mistakes should be met with self-forgiveness [45]. The practice of emotion coping such as feeling fulfilled through caring and ascribing meaning to caring role is positively associated with the subtheme ‘control over caring situation’, which refers to carers’ capacity to manage their situation (ref Fig. 2).

Negative emotional coping describes a person’s focus on negative aspects of a situation, negative emotional responses (e.g. anger, resentment) and venting of emotions and denial of caring situation, existence of dementia and limited caring capacities [86]. Denial of stressful situation or predicament can negatively affect emotional and mental wellbeing of carer [86]. Negative emotion coping is associated with poorer QoL, poorer emotional and mental health, and problem avoidance.

Problem-coping

Problem coping is an approach that employs either a problem-solving approach or a problem-avoidance approach. Problem-solving involves finding the capacity to manage a stressful situation and strategically plan solutions to resolve the issue and action their plans [86]. Problem avoidance refers to carers using denial as a coping mechanism to disengage from the reality of their situation and presentations of dementia in person with dementia [86].

From the perspective of problem avoidance, carers in denial of their limited capacity to manage their caring situation could potentially contribute to poorer QoL [32, 58]. A few papers described carers in denial of visible signs of dementia in people with dementia and deterioration in their cognitive function, which may reflect lack of resilience in carers [45, 65]. One study reported self-medication with alcohol as a coping mechanism to manage carer stress [43]. Problem avoidance can be deemed as a form of disengagement from reality as demonstrated by carers in denial or self-medicating. This denial of emotional stress in problem coping is also reflective of negative emotional coping (ref Fig. 2).

From the perspective of problem coping, adaptability to changes in the caring situation and care-recipient’s behavior served as a measure to cope with life changes [44, 60]. Carers also used critical thinking, strategic planning, and knowledge application to meet care-recipients’ needs. Examples of employing problem-solving skills among carers to strengthen patience included seeking to understand dementia and issues related to caring, recognizing carer’s own capacities and need for additional support [48, 75]. Problem-solving approaches for carers overlap with ‘positive emotion coping’ and ‘social health’ (ref Fig. 2). This overlap is seen in the context of carers utilizing hobbies and socializing as a distraction that can assist a carer in reducing the likelihood of being depressed or lonely and help reduce carer stress [43, 80].

Sense of loss

Sense of loss from the perspectives of partner carers and adult child carers posed a significant negative impact on carers’ QoL [55, 57]. Carers’ feelings of sense of loss in communication, loss or drastic change of care-recipient’s personality, and sacrifices made by the carer (e.g., retiring from work) was conceived as a sign of grief [53, 79]. A common re-occurring concept with loss was the feeling of an “absent-presence” relationship with care-recipients and the disappearance of a loved one with the progression of dementia [28, 77]. Across studies, many carers felt a sense of isolation, loneliness, sadness, abandonment, unfairness, and anger with the loss of their previous relationship with their care-recipient [44, 78]. For adult children, loss of previous relationship with a care-recipient was described as the loss of a parental figure [55]. Sense of loss was also seen in the loss of joint activities between a couple as the carer was not able to enjoy the care-recipient’s company due to loss of the care-recipient’s ability to communicate [58].

Among partner carers, sense of loss was described as a loss of intimacy and connection, referring to the loss of physical touch or desire for physical touch [34, 39]. A few studies reported carers feeling distant from the person with dementia, which was largely associated with discomfort or desensitization towards the person with dementia in a sexual manner or loss of connectedness with progression of disease and burden of carers’ duties [34, 39]. One study reported that partner carers with low sexual desire for the care-recipient was due to the fatigue of performing caring duties [39]. In comparison, other studies mentioned lack of initiation or interest in sex from the care-recipient contributed to loss of intimacy, feelings of insecurity and rejection [39, 77]. Another study mentioned that despite a carer longing for sexual intimacy with their partner, they managed to retain value in other aspects of their relationship [77].

Change in relationship

Change in relationship mainly describes the impact of changes in person with dementia on relationship dynamics and perception of informal carers towards their care-recipient [59, 66]. A small number of studies reported positive aspects of caring on relationship with people with dementia such as improved communication, emotional closeness, companionship, and even deepened feelings of love for the person with dementia contributing to improved QoL [35, 65]. Studies also reported patience and acceptance of changes in relationship and reframing caring as a source of personal development and inner strength as qualities that fostered carer resilience [52, 61]. This overlap in acceptance of situation and approaching caring situation with patience is also seen in ‘positive emotional coping’ and ‘control over caring situation’ (ref Fig. 2). An example of fostering carer resilience was seen among adult child carers who made sense of their caring situation by accepting role reversal and positively framed role reversal as a tool to manage the person with dementia and viewed caring as a strength [33, 78]. In comparison, other studies on adult child carers reported role reversal as challenging and “emotionally traumatic” due to feelings of a sense of loss of their parent-child relationship [66, 78].

Most carers regarded care-recipient’s increased dependency and behavioral changes as difficult to accept and manage. Changes in relationship due to progression of dementia, loss in cognitive function and communication skills and behavioral changes in care-recipient were likely to negatively impact emotional health and QoL by invoking a ‘sense of loss’ and ‘emotional pain’ from the loss (ref Fig. 2) [59, 66]. One study reported that progression of dementia created distance between adult child carers and care-recipients as they could not recognize each other as parent and child [78]. Some studies reported poorer QoL among carers due to overwhelming demands, such as managing care-recipient’s aggression, irritation, and sometimes physical abuse [36, 76]. Care-recipient’s irritability created tensions in the carer-care-recipient relationship and led one carer to feel hatred towards the care-recipient [59].

Control over caring situation

This subtheme describes the decision-making processes of carers for person with dementia, carers’ daily roles and responsibilities and the impact of these responsibilities on carers’ QoL. Carers reported that they assumed a more authoritative role in decision-making, advocating for the person with dementia and taking over the responsibilities of meeting care-recipient’s needs [27, 66]. As a consequence of assuming decision-making roles for care-recipients, studies reported some carers felt traumatized and overwhelmed from the experience [34, 83]. Carers recognized increasing dependency of care-recipients in terms of daily tasks such as bathing, grooming, dressing, cooking, providing medication, and cleaning [41, 66].

Poorer QoL was associated with experiences of hardships in managing daily uncertainty and struggles in adjusting to their carer roles and responsibilities [78, 80]. In assuming caring responsibilities, a carer expressed experiencing undesirable changes in their sense of self including forced aging [34]. Another study reported a carer harboring resentment towards their caring role [41]. The level of difficulty experienced in fulfilling daily caring is dependent not only on the carer’s capability, but also the care-recipient’s willingness to be supported. One study reported that carers struggled with daily caring, where a carer accidentally bruised the care-recipient when bathing as they were not being cooperative causing the carer to feel a sense of shame [43]. Studies reported that carer’s struggle in accepting their new caring role stemmed from difficulty in accepting changes in the person with dementia and/or from the time-consuming tasks involved in daily caring [52, 80]. External challenges that contribute to carer strain include managing multiple responsibilities such as work and childcare, in addition to caring [49, 55]. Financial hardship was also recognized as a contributing factor to carer struggle and was linked to care-recipient’s uninhibited spending, change in flow of their finances, where carers were now solo financial managers, and lacked access to government financial support [36, 83]. Carers with limited knowledge and awareness of information and resources were less prepared for their caring role, with lesser understanding of dementia, and less support for coping with their caring situation [72, 81]. One study described the impact of carers’ lack of preparedness for care-recipients’ arrangements for dying and death causing some carers to feel regret about delaying discussing this aspect with the person with dementia while they were still cognizant [78].

Carers with a sense of preparedness, dedication to honing their caring skillset, and building their knowledge were seen as central components to accepting the caring role, which contributed to carer’s confidence, resilience, and improved QoL [38, 52]. Components that facilitate resilience are reflective of ‘positive emotion coping’ and ‘problem solving’. Maintaining normality within carer and care-recipient relationship was also seen as being positively associated with ‘having control over caring situation’ (ref Fig. 2). For example, to retain care-recipient’s agency, one carer would include the care-recipient’s opinion in decision-making like choosing clothing [57]. Carers also mentioned their previous work experience in the healthcare sector, which gave them a sense of preparedness in managing practical challenges, such as administration of medication or flexibility when posed with unexpected situations in caring [68, 81]. Other facilitators of control over caring included positive framing of their situation, having a scheduled daily routine, continual switching of responses (dependent on the care-recipient’s mood and behavior) and having the financial means to maintain lifestyle [42, 80]. Some carers utilized positive reappraisal as seen in positive emotion coping, where they associated caring with a sense of achievement, fulfilment or as a form of personal development from caring [50, 70].

Freedom and independence

This subtheme explores the impact of caring on carers’ freedom and independence. Studies reported that carers stressed that freedom and independence, such as having a sense of identity beyond caring, time for self-care, work and time for social engagement was associated with improved QoL, while loss of freedom and independence was negatively associated with those aspects [56, 78]. Engaging in self-care was associated with maintaining physical and mental wellbeing and to fulfill the caring role [33, 83]. Self-care is closely linked to positive impact in all aspects of health (Fig. 2).

Most studies reported that carers experienced a loss of freedom and independence due to caring responsibilities and reported feeling trapped, loss of personal time, and experience of self-neglect [56, 64]. Carer sacrifices include giving up their paid employment, education, and missing social events due to caring [38, 84]. Studies also reported that carers were unable to do things without planning ahead (i.e., lack of spontaneity) but in certain instances, even planning ahead did not have the expected outcome [56, 64]. Lack of freedom and independence to participate in social gatherings resulted in relationship strain with family members and negative impact on emotional well-being stemming from social isolation and exhaustion from caring [56, 79]. Loss of self-identity was associated with carer’s self-identity being subsumed by their caring role and inability to switch off from their role due to care-recipient’s need for constant supervision [30, 55]. Loss of freedom and independence was associated with frustration, exhaustion and isolation associated with emotional and mental health, and social health (Fig. 2) [38, 49].

Formal support

A few studies reported informal carers experienced improved QoL after seeking formal support, but most informal carers reported having unmet needs.

At the healthcare level, healthcare professionals who exhibited poor knowledge and awareness of dementia and carer’s needs—learning resources or support groups for informal carers—contributed to carers’ isolation, feelings of disappointment, and poorer QoL [27, 83]. Similarly, some studies reported carers’ experiences of feeling unseen or unheard by healthcare professionals who did not acknowledge carers’ potential health needs and only focused on the care-recipient’s condition or disrespected carer’s opinions [27, 81]. Carer stress was exacerbated by inconsistent information delivered by healthcare professional [48].

At the professional support services level, a few studies reported carers’ reluctance in using respite care due to their commitment to care-recipient, or respecting care-recipient’s wants [79]. A few carers developed mistrust and lack of confidence in quality of residential care and respite care services due to their personal experiences of poor treatment by staff and tardiness [61, 65]. In terms of family dynamics, disapproval or stigma from family members of carers seeking additional support from professional support services served as an obstacle for the carer to overcome [31, 72]. Lack of flexibility and continuity with formal support was associated with negative perception of care and emotions like anger and lack of freedom and independence to participate in social activities [57]. Positive perception towards professional support was associated with the informal carer feeling heard by formal carers or flexibility to changing needs and schedules and a sense of “continuity” when establishing or having established a relationship between formal carer, informal carer and care-recipient [29, 57].

At the level of support groups, carers had an unmet need for targeted support that address specific groups like young carers [29, 52]. Some studies reported support groups as a helpful form of social support for carers to relieve stress and as a medium to foster inner strength [34, 74]. On the other hand, one study reported that carers felt that time spent attending support groups was not useful [74]. For some carers, a support group was a source for learning about caring and dementia [66, 72]. Knowledge-seeking behavior in understanding dementia was a contributing factor in facilitating carer’s resilience [59].

Navigating unfamiliar areas like legal support or financial support has been a struggle for informal carers, in addition to time-consuming nature of caring [64, 74]. Additionally, the complexity of administrative processes in formal support services and long processing times contributed to carer frustration [29].

Informal support

This subtheme explores the perception of informal support, types of informal support, and impact of informal support and its absence. Most informal carers reacted positively to informal support from family, partners, friends, and, to a lesser extent, neighbors, community members, and religious groups. Informal support enabled informal carers time for self and work, and a source to enable caring [66, 67]. The concept of time for oneself and work ties into ‘freedom and independence’ (ref Fig. 2). A few studies found carers who rejected informal support did so due to personal wishes to maintain their and the care-recipient’s privacy [63, 77]. However, this can result in isolation for some carers [77]. Other studies found carers felt like they did not want to impede on their family member’s lives so they did not seek informal support [73, 77].

Most informal carers who received little to no informal support expressed need for further support in the form of practical support, like assisting with caring duties and emotional support [64, 78]. One study identified gender constructs as justification for women to fulfill caring roles but this standard was not expected for male family members [67]. Lack of emotional support was described as lack of appreciation from others for caring [78]. Other carers expressed a sense of isolation due to other people’s lack of familiarity with dementia and carers being unable to separate themselves from their caring role and making comparisons of their situation with the situation of others [27]. One study identified lack of visitation from local religious groups with lack of informal support and feeling dispirited [83]. Social stigmatization towards dementia served as a barrier to seeking informal support [52]. A few studies mentioned that the caring role created family tensions due to the time-consuming nature of caring and dissatisfaction with sharing caring duties [30, 81].

Informal carers who lacked support were more likely to experience negative emotions like disappointment, resentment towards family members, and frustration [64, 70]. Experience of negative emotions greatly impacted carers’ emotional and mental health, and social isolation contributes to poorer social health (ref Fig. 2).

Physical health

In terms of valuing physical health, several studies reported carers acknowledging the physical burden of caring on health, with only a few carers having the capacity to maintain their health to manage their caring duties [sub theme – control over caring situation] (see Fig. 2) [68, 79]. Lack of time for rest or self-care due to caring and caring stress has led to health deterioration, poorer ageing, tiredness, physical drain, weight loss, lack of sleep, and even slow recovery from illness [27, 64]. Carers with pre-existing chronic illness reported that their condition had worsened after becoming a carer [56, 83].

Social health

This theme describes the shortfall of social connections due to caring and the impact of caring on carers’ social health and QoL. Social aspects described in this study include carers’ ability to sustain and develop social connections, as well as impact of care-recipient’s condition and caring on carers’ relationships with friends, family members, members of organized religion, and neighbors [36, 56].

Carers positively associated improved wellbeing through having time separate from caring and socializing with friends, family, members of organized religion, and online communities [44, 84]. A few studies highlighted the importance of planning and scheduling social activities with friends and family outside of caring to enable carer time to de-stress [44, 80]. Another study emphasized a feeling of anticipation with carer receiving regular social engagement outside of caring [40].

Factors associated with poorer QoL in informal carers include carers’ feeling a sense of loneliness and isolation due to lack of companionship, lack of capacity to socialize, people distancing themselves from carer, people’s unfamiliarity with caring and dementia, or feeling misplaced in social activities due to a struggle in separating themselves from their caring role [30, 80]. Feelings of loneliness and isolation can be linked to not only poorer social health but also poorer emotional and mental health and wellbeing (ref Fig. 2). Lack of familiarity or understanding of full scope of dementia and its presentation has been a contributing factor to carer stress. In terms of partner relationships, some adult child carers have attributed relationship tensions and failed relationships to carers prioritizing the care-recipient over their own partner [84]. A few carers highlighted the difficulty in fostering new partner relationships due to ambiguity of relationship with care-recipient or consuming nature of caring [69, 77]. Some studies reported that carers experienced tensions in family relationships when discussing care of the person with dementia, which contributed to carer stress [47]. Another study outlined family tensions were due to carers prioritizing care-recipient over another family member [47].

Emotional and mental health

This subtheme describes the key emotions that influence carers’ QoL. Several studies identified the negative impact of caring on their emotional wellbeing and exacerbation of pre-existing mental health conditions in some carers [56, 68]. Receiving adequate practical, social and emotional support, freedom and time for oneself, and utilization of positive emotion coping strategies was associated with positive emotions. Positive emotions are reported as feeling glad from engaging in self-care and finding happiness from providing support to care-recipient [38, 85].

A diverse range of negative emotions were identified, with the most common emotions being anger, frustration, guilt, worry, anxiety, depression and lesser common emotions of sadness, sense of hopelessness, distress, emotional drain, and ambivalence [50, 78]. Carers’ guilt stemmed from their own perception of failing to fulfill care-recipients’ needs, not being able to regulate their negative emotions and lashing out at care-recipient, having separation from their role as carer to work or engage in other activities, and in an adult child carer, sharing their caring obligations with a partner [34, 78]. One study reported a carer who associated time away from caring with guilt due to feeling like they were not fulfilling their caring responsibilities [57]. Anger, frustration, and deterioration was associated with the stress of caring and lack of recognition by other people for their caring efforts [57, 83]. Studies reported that carers permitted themselves to get angry with their care-recipient since they would “forget” due to the deterioration of their memory [50]. Some studies reported carers resorted to physical and verbal abuse out of anger, tiredness, and stress [82]. Self-criticism is seen as a by-product of negative emotion coping from ruminating over past mistakes and negative emotions like guilt [34].

The time-consuming nature of caring and lack of time to seek professional mental health support led to emotional drain [79]. One study reported that carers experienced a sense of hopelessness from struggling to accept alterations to their lives [46]. Ambivalence was expressed across a few studies. Carers found themselves oscillating between different emotions and responses towards the person with dementia and caring complexities [76, 81]. Examples of ambivalence have been described as carers feeling anger towards person with dementia and feeling a sense of closeness to them or feeling anger to indifference towards caring [76, 81]. Carers’ projections about the future—carers’ and care-recipient’s health and wellbeing and ability to manage caring responsibilities with the progression of dementia—were often associated with worry and anxiety [49, 57]. Some carers reported that their caring experiences led to suicidal ideation and homicidal thoughts of care-recipient as a means to end their caring role [37, 82]. Carers who ruminated over homicidal thoughts towards care-recipient expressed either relief or framed death of care-recipient through euthanasia as an act of sympathy towards person with dementia due to their perceived poorer QoL [82].

An interrelationship between emotional/mental health and emotional coping, in the form of positive or negative emotions, was found during our analysis, which in turn is linked to greater control over the caring situation (ref Fig. 2).