Lived Experience of Caregivers of Persons with Dementia and the Impact on their Sense of Self: A Qualitative Study in Singapore

Abstract

The prevalence of dementia is increasing, especially in Asia. Caregivers of people with dementia are at greater risk of psychological morbidity; however, most studies on caregiving have been conducted in Western populations. As a caregiver's experience can be influenced by cultural factors, this needs exploring further. This study explored the lived experience of caregivers of dementia patients in Singapore and the impact of caring on their sense of self. Six Chinese female spousal caregivers were interviewed and their experiences were analyzed using interpretative phenomenological analysis (IPA). Four super-ordinate themes were identified: impact of caregiving, acceptance of destiny, taking control, and view of self. The findings reflected the influence of Confucian values. Clinical implications are discussed, including more culturally sensitive services.

That mr. Alzheimer… you never know what he’s up to, but what about me? A discourse analysis of how Swedish spouse caregivers can make their subject positions understandable and meaningful

“…The spouses have to switch between necessary subject positions in order to support their partners, family or other caregivers. This study also supports the findings of Tumola et al (2016), namely that spouses lack time for themselves, that they are obliged to accept their fate and have to try to stay healthy. The burdens that Tumola et al describe are also present in the form of carrying the weight of being a parent and coping with the loss of both themselves and their partners.…”

“…In addition, they report feelings of losing their partners due to difficulties such as sharing thoughts, feelings and experiences as a couple, which in turns leads to reduced intimacy and a sense that they are no longer married (Ask et al, 2014;Eloniemi-Sulkava et al, 2002;Kaplan, 2001;Pozzebon, Douglas, & Ames, 2016). Tumola, Soon, Fisher, and Yap (2016) highlight that spouses experience not having enough time for themselves, that they bear a heavy burden due to not having enough rest, feelings of guilt, the loss of a sense of self and having to accept their fate. There is also the possibility of historical artefacts in the form of negative stereotypes or associations of mental health, dementia and institutional care, all of which produce fear and stigma and contribute to keeping dementia a hidden condition (Stokes, Cobes, & Stokes, 2014).…”

Experiences of Adults Who Identify as Primary Caregivers

“…Whether the participants provided care for their spouse or parent, Anna stated, “I wouldn't have it any other way” and Rose believed, “It was my calling.” In line with a previous study, the caregivers’ experiences centered on the theme of accepting their destiny and their duty as a wife to care for their loved one (Tuomola, Soon, Fisher, & Yap, ). Moreover, Tuomola et al () found that caregivers experience a sense of empowerment when making decisions and conquering obstacles throughout the caregiving process. As found in this particular study, the participants reported having confidence in their ability to provide care due to the significance of the relationship with their loved one.…”

Trapped like a butterfly in a spider's web: Experiences of female spousal caregivers in the care of husbands with severe mental illness

“…It could be concluded that caregiving is stereotyped as a woman's duty owing to the emphasis on care and nurturing; these gender roles in turn increase women's susceptibility to the distress of being a caregiver (Miller & Cafasso, ). Over a period of several decades, many studies have extensively examined the female spousal caregivers’ experiences of living with a patient with chronic disease such as dementia (Laakkonen et al., ; Tuomola, Soon, Fisher, & Yap, ) or Alzheimer (Daley, O'Connor, Shirk, & Beard, ). However, there is little information about the experiences of women when caring for a spouse with severe mental illness.…”