Positive Aspects of Caregiving Experience among Caregivers of Patients with Dementia

Abstract Objective: To assess the positive aspects of caregiving and its correlates among caregivers of patients with dementia. Methods: A total of 55 primary caregivers of patients with dementia were invited to complete the Scale for Positive Aspects of Caregiving Experience (SPACE), Coping Checklist, Social Support Questionnaire, and World Health Organization Quality of Life--BREF version. Caregivers were also assessed by a clinician using the Burden Interview Schedule. Patients were assessed using the Hindi Mental State Examination and Instrumental Activities of Daily Living Scale. Results: The mean SPACE domain score was highest for motivation for caregiving role (2.63) followed by caregiver satisfaction (2.54), caregiving personal gains (2.4), and self-esteem and social aspect of caring (2.23). More educated caregivers scored significantly lower in the self-esteem and social aspect of caring. Married caregivers had a higher mean score in the motivation for caregiving role. There were some correlations between subjective burden and various SPACE domains, but the total objective burden score had no correlation with the SPACE. Higher use of avoidance coping was associated with a positive caregiving experience. Stronger social support was associated with higher score in the motivation for caregiving role. Higher level of caregiver burden in various domains was associated with lower motivation for caregiving. Caregiver satisfaction was associated with better quality of life for caregivers in terms of the environment. Conclusion: A positive caregiving experience for primary caregivers of patients with dementia is associated with both objective and subjective burdens, avoidance coping, and perceived social support. Key words: Caregivers/psychology; Dementia Introduction Due to high dependency needs, the role of caregivers in the management of dementia is vital. Such caregivers spend a lot of their time in caregiving and may consequently neglect their own health and experience psychological morbidity and poor physical health. (1-4) Caregiving is also associated with a sense of satisfaction and pride that derives from the care-related activity and provides a sense of purpose in the caring role. (5) Various theoretical frameworks have been proposed to understand the caregiving outcome. Of these, the predominant framework is that of a stress appraisal model, according to which the outcome of the caregiving stress on the caregiver is influenced by the stressor (i.e. caregiving demands), mediators (in the form of coping, social support, personality of the caregiver), and the positive and negative appraisal of their caregiving role. (3) In general, there is more literature on the negative impact of caregiving and only a few studies have evaluated the positive aspects of caregiving. (6,7) Positive aspects of the caregiving experience (PACE) is considered a subjective event. Research suggests that such positive aspects are not opposite to negative aspects, can be experienced along with the negative caregiving outcomes, and bear a modest correlation with the negative aspects of caregiving. (8,9) There is marked heterogeneity in understanding the PACE. Most literature on the PACE is in the form of qualitative studies. These qualitative studies suggest that various authors have understood PACE in terms of emotional rewards as well as job satisfaction related to feeling appreciated as a caregiver, personal growth, self-respect, being more self-aware, increased faith and spiritual growth, a sense of mastery or competency in the role of caregiving, improved relationships (carers described gains relating to companionship and simply being in the company of their husband or wife), greater emotional closeness, increased intimacy in the relationship, and reciprocity or the opportunity to give back to their loved one leading to satisfaction, a sense of duty and expressed pride in being able to care for their lifelong partners. …