Introduction

The Diagnostic and Statistical Manual of Mental Disorders 5^th Edition (DSM-5), defines dementia as major Neurocognitive Disorder (NCD) which is characterised by an acquired, progressive deterioration of cognitive functions [1–3] that leads to impairment in the person’s activities of daily living (e.g., bathing, talking, eating, shopping, paying the bills) [4] and neuropsychiatric symptoms such as agitation, depression and hallucinations [4]. Hence, majority of persons with dementia (PWD) are significantly dependent on the informal caregivers such as their family, relatives or friends for their care [5, 6].

According to the World Alzheimer's report in 2010, the cost of informal caregiving (e.g., unpaid care provided by families, informal caregivers and others) contributed almost 40 to 60 percent worldwide (US$604 billion) of the total cost of dementia [7, 8]. In Singapore, the total cost of dementia was estimated to be SG$532 million [9]. The mean annual cost of informal caregiving for PWD in Singapore was 1.7 times higher as compared to formal caregiving (SG$44,530.55 versus SG$25,654.11), which was largely contributed from the time informal caregivers spent with the PWD [10]. In addition, caregivers are often required to cope with the illness; where many are unfamiliar and are even unprepared to recognise the symptoms and adapt to the changes in behaviour of the PWD [11]. The role of caregiving involves bringing PWD for treatments, making decisions on their behalf; overseeing medications, paying for the expenses, liaising with various healthcare professionals, coping with PWD’s behavioural problems etc., thus playing a very important role in the care plan for PWD [12]. Over a period of time, such responsibilities may result in financial burden and caregivers neglecting their mental and physical wellbeing thus reducing their quality of life [13, 14]. However, many of them remain filial and appreciate the positive sides of their role as they consider it their responsibility and duty to care for the PWD [15].

Thus, despite all the challenges, caregiving has been positively associated with a perceived sense of satisfaction, improved personal resilience, self- efficacy and a sense of purpose in life [12, 16, 17]. The positive aspect of caregiving (PAC) was defined as "the gains or satisfaction resulting from the caregiving experience" [17]. Studies have reported that in spite of the stress, almost 80% of caregivers experienced positive caregiving (e.g., personal growth, sharing activities, strengthened relationship with PWD, increase in self-esteem, and spirituality) [6, 17–20].

Lawton et al. [21] proposed a 2-factor model of caregiving appraisal and psychological well-being in caregiving experience whereby positive caregiving experiences that are perceived as rewarding serve as a coping mechanism against negative effects. Besides improving caregivers' life satisfaction and quality of life, these components also influence their involvement in providing a better quality of care to the PWD [22, 23].

Within the caregiving experience, positive aspects seem to be influenced by several factors. David et al. [24] showed that socio-demographic differences among caregivers such as age, race, gender, education level, health and relationship status of the informal caregiver with the PWD play a role in the caregiving experiences. Caregivers are often women, usually spouse, who generally provide more hours of care and have reported higher physical burden, financial strain, depression symptoms and lower psychological wellbeing as compared to adult-child caregivers [25]. Specifically, wives and female adult-child caregivers have reported less positive experiences as compared to husband and male adult-child caregivers [26]. Baker and Robertson [27] reported that older age group male caregivers and lower family income caregivers had a more positive caregiving experience.

One widely used scale for measuring psychological benefits of caregiving among caregivers is the PAC scale [28]. A 11-item PAC scale was used in the initial REACH I project by Tarlow and colleagues, which was later found to be psychometrically valid through exploratory factor analysis (EFA), and confirmatory factory analysis (CFA). As such, they proposed the 9-item PAC scale, consisting of 2-factors (Self Affirmation; six items); (Outlook on Life; three items) and an overall PAC score. Both the 9-item and 11-item PAC scale have been used extensively in many countries [29–32]. A study by Siow et al. [31] assessed the validity and reliability of the 9- item PAC scale among a representative sample of caregivers of older Singaporeans adults with functional limitations. The 9-item PAC scale showed acceptable content and constructs high validity as well as cross-language reliability indices, similarly to other studies [12, 33].

Many studies [12, 17, 29, 32] have examined the relationship between PAC and its influence on caregivers well-being or role in providing care. However, the majority of these studies involved Western populations. Hence, there is a need for local studies to examine and recognize factors associated with PAC especially in a multi-ethnic country such as Singapore which can help to identify and provide insight into planning interventions for caregivers' well-being. Thus, in view of these findings our study aims to (1) investigate the applicability of the 2-factor structure of the 9-item PAC scale among informal caregivers of PWD in Singapore; and (2) explore the different factors associated with PAC among primary informal caregivers providing care to PWD in Singapore.

Methods

Results

Sociodemographic characteristics of the participants are shown in Table 1. A total of 282 participants comprising a majority of female caregivers (75.2%), of Chinese ethnicity (83%), ever married (72%), and with Secondary and below education (42.5%) constituted the sample. In terms of socioeconomic status, majority were employed (57.1%) and had a monthly income ranging from SGD 2,000 to SGD 5,999 (27.66%). Participants were mainly daughter caregivers (55.32%), currently living with the care recipient (70.21%) and did not have a domestic helper hired specifically for the care recipient (56.4%). In addition, most of the participants (75.9%) had not received any formal training on caregiving. Prior to further analysis, CFA was conducted to test if the factor structure proposed by the scale developer [28] fit our caregiver sample. Results suggested that the 2-factor structure showed an acceptable model fit–CFI = 0.992, TLI = 0.989, RMSEA = 0.091 (above 0.08 but still shows mediocre fit) [37]. The first factor consisting of 6 items was labelled as ‘Self-Affirmation’ with statements pertaining to affirmation of oneself in dementia caregiving. The second factor consisting 3 items was labelled as ‘Outlook on Life’. The mean PAC factors scores among the informal caregivers for ‘Self-Affirmation’ was 23.34 (SD = 4.78), and for ‘Outlook on Life’ was 12.03 (SD = 2.56) (Table 2). The average PAC was 35.37 (SD = 6.58). The internal reliability statistics (Cronbach’s alpha) for the PAC, ‘Self-Affirmation’ and ‘Outlook on Life’ were 0.883, 0.873, and 0.785 respectively.

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Table 1. Socio-demographic characteristics.

https://doi.org/10.1371/journal.pone.0237677.t001

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Table 2. PAC factor scores among informal caregivers with PWD.

https://doi.org/10.1371/journal.pone.0237677.t002

The present study also examined the correlates of the overall PAC and those of the two factors (see Table 3). Multiple linear regression results were tabulated after adjusting for confounding variables. The results showed that Malay informal caregivers (versus Chinese) were found to be significantly and positively associated with higher PAC (β = 2.94, 95% CI [0.20 to 5.68]) and ‘Self-Affirmation’ (β = 2.37, 95% CI [0.38 to 4.36]) scores. On the other hand, informal caregivers with Secondary or below education level (versus university and above) had higher PAC (β = 2.41, 95% CI [0.31 to 4.51]) and ‘Outlook on Life’ (β = 0.95, 95% CI [0.13 to 1.76]) scores. Similarly, informal caregivers with ‘A’ Level or Diploma education level (versus university and above) had higher PAC (β = 1.04, 95 CI [0.20 to 1.88]) scores. Those who had attended formal training in caregiving (versus no formal training) were associated with significantly higher PAC (β = 2.57, 95% CI [0.65 to 4.49]), ‘Self-Affirmation’ (β = 1.48, 95% CI [0.08 to 2.87]) and ‘Outlook on Life’ (β = 1.09, 95% CI [0.35 to 1.83]) scores. No significant associations were found between the PAC factors and informal caregivers’ relationship with PWD.

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Table 3. Factors associated with PAC and informal caregivers sociodemographic variables.

https://doi.org/10.1371/journal.pone.0237677.t003

Discussion

The present study aimed to explore the different factors associated with PAC among primary informal caregivers providing care to PWD in Singapore. Similar to the study by Tarlow et al. [28], the present study confirmed that the 2-factor structure comprising ‘Self-Affirmation’ and ‘Outlook on Life’ of the 9-item PAC was applicable to informal caregivers of PWD in Singapore.

Several studies [38–40] have reported the disadvantages that caregivers with lower education face such as inability to regulate negative emotions or stress, formulate coping strategies, finding available resources and getting easily depressed. However, the present study found that informal caregivers with lower education reported higher PAC and better ‘Outlook on Life’ in their caregiving roles. Similarly, other studies [41, 42] have suggested that caregivers with lower education are positively associated with a lower caregiving burden due to a more simplistic mind-set or lifestyle as compared to those with a higher academic multitasking lifestyle. In addition, with a simple daily life, the need for caregivers to sacrifice their daily habits is less likely which unfortunately often occurs in dementia caregiving [41].

Cultural differences often influence the relationships between caregivers’ caregiving experiences and their roles. Current findings showed that Malay informal caregivers were more likely to have a positive perception of caregiving experiences as compared to informal caregivers belonging to other ethnicities. One possible explanation could be related to cultural and religious beliefs that are more strongly valued among Malay informal caregivers. In Singapore, majority of the Malay population are predominantly Muslim, hence established Islamic ethics and practices are dominant in this group [43, 44]. Historically in the Islamic teaching, suffering, illness and challenges are perceived as trials from God by which one’s sins are removed if endured with patience and resilience [45]. In addition, caring for older adults, not just parents is also considered a religious and moral obligation in the Muslim community [46].

On the basis of previous research [47–50], the present study had anticipated that immediate family caregivers (e.g., adult- child or spouse) would report lower PAC as compared to distant family caregivers (e.g., siblings, nephews, niece, etc.). Reasons for such differences include immediate family caregivers experiencing a higher level of emotional responsibility (e.g. sense of guilt and social pressure), psychological distress and stronger tradition (e.g., filial piety) among collectivist societies [51, 52]. However, no significant associations were found between PAC and the informal caregivers’ relationship status with PWD in the present study.

Current findings also show that informal caregivers who attended formal training in caregiving reported high levels of PAC and both factors (‘Self-Affirmation’ and ‘Outlook on Life’). In the early stages, families or caregivers of PWD are often unprepared to handle the challenges such as decision making, managing the level of care, communicating effectively that commonly follows after the person has been a diagnosed to have dementia [53]. Caregivers lack of understanding, poor access to information and available support causes knowledge gap which affects and delays both caregiver and PWD’s adjustment to the diagnosis [11, 53]. This result in caregivers having a harder time in making sense of the changes the PWD is experiencing [11]. Hence, training programs, interventions and information can contribute to a better caregiving experience, quality of life and mental wellbeing for caregivers and even decrease the risk of early institutionalization for the PWD [54]. The findings of the present study support the notion that formal training for informal caregivers may play a crucial role in PAC.

Conclusion

In conclusion, the present study confirmed that the PAC scale had the same 2-factor structure among informal caregivers of PWD in Singapore as proposed by Tarlow et al. [28]. Results demonstrated that the 9-item PAC scale comprises two distinct components of caregiving experience: Self-Affirmation and Outlook on Life. Overall, our findings underscore the need for training and educational interventions in improving PAC levels for informal caregivers. An earlier study in Singapore established that a pilot mobile application based psycho-educational intervention, resulted in significant reduction in perceived burden, and distress while positive emotional outcomes improved among caregivers of PWDs [55]. Hence, it is possible that adopting more positive caregiving strategies and attending caregiver training or educational interventions can improve psychological well-being among caregivers.

Acknowledgments

The authors would like to thank all the participants for their time and efforts in the study.