Miyawaki (2020) [17]Structured interviews n = 40 caregivers Description: 2nd, 2.5 and 3rd generation female Chinese-American caregivers caring after older relatives, some with dementia (NB. dementia type and number of carers for people with dementia not specified)USA (Seattle and Houston)Later generation caregivers had higher acculturation
Filial responsibility remained high across generations
Traditional caregiving was seen across all generations
If the interviewed caregivers needed care in the future, their views upon this differed. Thus, caregivers from Seattle preferred the concept of longer-term care facilities whilst caregivers from Houston preferred being cared for by their children.
This research emphasised the importance of caregiving attitudes and preferences being generationally and ethnically specific, and the importance of our understanding of this in a geographical context.Sterritt and Pokorny (1998) [18]Semi-structured interviewsn = 9 caregivers, with 3–8 years in caregiving; male and female African American Caregiver’s of relatives with Alzheimer’s Disease South-Eastern USAFound that caregiving is seen as a traditional family value
Caregiving is thought of as an act of love
Social support can be considered a mediator of caregiving burden
Caregiving is considered to be a female roleGray et al. (2009) [20]Structured Interviewsn = 236 white, Hispanic, and Chinese-American women caring for relatives with either a diagnosis of Alzheimer’s Disease (or other dementia)USA (San Francisco Bay area)Attitudes and beliefs regarding AD/Dementia seen in Hispanic and Chinese caregivers may delay help-seeking activities for people with AD/Dementia.
Hispanic and Chinese subjects were more likely to believe it to be a normal part of ageing diagnosable via a blood test than their white counterparts. This was attributed to their traditional and cultural beliefs.Jones et al. (2011) [23]Scale developmentQuestionnaires completed by 593 individuals. Filial concepts from scales using African-, Asian-, Euro-, Latino-, and Native American subjects were examined. USA (Southern California and Native Americans)Filial values predicted caregiving activities and caregiver health
Three filial concepts were identified: Responsibility, Respect, and Care. These reflect attitudes and beliefs inherent in the complex multidimensional construct of filial values.
A positive relationship between adult children professed filial values and their actual filial conduct was found.
There was a stronger association between responsibility and care in males than females.
Asians and African Americans displayed more filial responsibility.Holland et al. (2010) [24]Interventional studyn = 47 Chinese American dementia caregiversUSA (San Francisco Bay area)Caregivers were found to report significant levels of distress, depressive symptoms, and also showed indications of resiliency—High levels of self-efficacy, positive caregiving experiences, and problem solving.
Stronger beliefs in Asian values were associated with more normal cortisol patterns, less depressive symptoms, and greater self-efficacy, highlighting the salience of culture in shaping the caregiving experience of Chinese Americans.Zhan (2004) [25]Interviewsn = 4 Chinese-American caregivers of family members with AD USAThere were ethnocultural and structural barriers facing the subjects; stigmatism of AD in the Chinese community, lack of knowledge about AD, a lack of culturally and linguistically appropriate AD services.
There were negative impacts on mental and physical health.Jones et al. (2001) [26]Questionnaire based studyn = 50 Asian-American Women caregivers for aging parents (29 Chinese-American; 21 Filipino-American). All participants born outside of the USA.USAInvolvement in caregiving was associated with health in Chinese-American women.
Caregiving role integration was positively associated with all three perceived health measures in the Filipino group, but not in the Chinese group.
Caregiving role satisfaction was consistently high in both groups.
Caregiving role satisfaction and psychological well-being were significantly correlated for the combined group and for the Filipino caregivers.
Total caregiving role stress was significantly correlated with overall health and current health only in the combined group.
Support that helps to decrease role stress and to increase role satisfaction may be more effective than efforts to decrease the extent of role involvement.Lawrence et al. (2008) [27]In-depth interviewsn = 32 male and female caregivers of people with dementia (PwD)UK (four socially and ethnically diverse south London boroughs: Lambeth, Southwark, Lewisham and Croydon)Caregivers were identified as holding “traditional” or “non-traditional” caregiving ideologies. Within traditional ideologies caregiving was seen as a natural and honourable concept, something that is expected to happen.
The majority of the South Asian, half of the Black Caribbean and a minority of the White British participants were found to possess a traditional ideology.van de Ree et al. (2018) [29]Structured Interviewsn = 123 informal caregivers of older adults (n = 22, 17.9%. had dementia; subtype not specified)Netherlands (North Brabant)Partners of the older adults provided more informal care than any other relative relationship.
Female caregivers were 3-fold more likely to experiences relational problems due to caregiving.
Majority of caregivers reported physical, mental and relational strain due to the intense nature of caregiving, particularly in the first six months.Kang et al. (2016) [35]Questionnaire based studyn = 87 caregivers of PwD (subtype unspecified)Korea (Busan)Caregiver burden, knowledge of dementia and levels of education predicted the quality of care given.
Caregivers’ decreased QoLcame from caregiving burdens. Interventional and educational programmes aimed at reducing these burdens and increasing knowledge were deemed necessary to improve QoL and the quality of care given.Shepherd-Banigan et al. (2020) [36]Cross-sectional approach n = 1509 familial caregivers of PwD within the Veteran Affairs (VA) programme (PwD = 44.9%)USA (Nationwide)Caregivers who care for veterans with trauma-based co-morbidities as well as cognitive decline reported high levels of depression, loneliness and financial strain even though they were part of the enhanced support system of the VA programme. Authors suggest a planned expansion of the programme to address these issues.Harding et al. (2015) [37]Secondary analysis Data from 4 UK studies of informal caregivers of people with cancer (n = 105), dementia (n = 131; dementia subtype not specified) and acquired brain injury (n = 215)UK (Sites not specified)Caregivers’ burden was highest in those caring for acquired brain injury (ABI) and was followed by dementia caregivers’ burden.
Total, subscale, and most individual elements of caregiver subjective burden differ between cancer, dementia, and ABI caregivers.
However, concepts of duty, responsibility, and perception of financial situation were similar between the 3 groups.
These should be considered when designing future intervention strategies to reduce caregivers’ burden in these groups.Ku et al. (2019) [38]Longitudinal study using interviewsn = 231 caregivers of PwD in a dementia clinic in Southern TaiwanTaiwan (Tainan)Behavioural disturbance [measured by the Neuropsychiatric Inventory (NPI)] showed no impact on the cost of care but was a significant predictor for caregiver burden. Caregiver burden was also associated with a functional decline in ADLs. Financial stability was associated with lower caregiver burden. These findings denote that financial assistance for low-income caregivers and educational training for behavioural disturbances are required to reduce caregiver burden.Kang (2021) [39]Secondary analysisn = 956 unpaid family caregivers (National Long Term Care Survey, USA)USAThe caregivers’ perceived burden was associated with financial strain, with variations due to familial relationships. The identification of these correlates can help with the development of effective interventions for caregivers’ burden.Semiatin and O’Connor (2012) [40]Interviewsn = 57 family caregivers of people with Alzheimer’s DiseaseUSA (Boston and Bedford)Self-efficacy accounted for a significant percentage of the variance in positive aspects of caregiving after controlling for other factors commonly associated with positive aspects of caregiving including caregiver demographics, care recipient neuropsychiatric symptoms, and caregiver depression.
High self-efficacy relates to caregivers’ perception of positive aspects of the caregiving experience.Pendergrass et al. (2019) [41]Cross-sectional studyn = 734 informal caregivers of PwD and other chronic illnessesGermany (Bavaria)There was an association between a higher experience of benefits, care duration, increase in depressive symptoms, increased physical grievances and a higher level of burden.Horrell et al. (2015) [42]Qualitativen = 60 informal caregivers New ZealandThe authors studied how emotions underpin informal caregiving. A caregiver’s choice of how they lived their lives was often influenced by their emotional attachment to the cared for, with higher attachment being associated with a decrease in wellbeing. The selflessness shown by the caregivers emphasised caregiving’s relational nature and challenged the prevalent perspective of caregiver burden documented previously.Abreu et al. (2018) [43]Cross-sectional studyn = 54 informal caregivers of PwD (n = 28 Alzheimer’s Disease, n = 12 vascular dementia, n = 9 mixed dementia, n = 2 Dementia with Lewy Bodies, n = 3 frontotemporal lobe dementia)Portugal (Porto district)Psychological distress was documented in half of the caregivers.
Somatization, obsessive–compulsion, interpersonal sensitivity, anxiety, and paranoid ideation were seen in a large proportion of caregivers.
The authors suggested placing focus on the alleviation of caregivers through education and additional support to help decrease their distress and burden Laparidou et al. (2019) [44]Qualitativen = 35, 18 caregivers, 17 healthcare professionalsUK (Lincolnshire)Primary stressors on caregivers came from lack of knowledge regarding Dementias and the challenge of diagnosis, often due to lack of understanding by healthcare-professionals. Secondary stressors were due the need for support and communication issues with healthcare professionals. The authors suggest that these stressors may be effecting the caregivers’ wellbeing r and may lead to an unnecessary move to institutionalised care for the care-recipient.