Experiences and concerns of family caregivers providing support to people with dementia: A cross-cultural perspective

Dementia (Impact Factor: 0.91). 11/2013; 12(6):806-820. DOI: 10.1177/1471301212446872
Source: PubMed


We examined experiences and concerns among caregivers of community-dwelling people with dementia from two ethnic groups. We conducted a thematic analysis of responses to the question, 'What is your life like as a caregiver?' in nine focus groups (n = 75) with Filipino and non-Hispanic White caregivers. Constant comparison methods identified themes by ethnicity. Experiences and concerns expressed across groups were related to care recipient symptoms commonly associated with dementia, including severe memory loss and behavioral changes. Participants in both ethnic groups described strategies that help them cope, such as receiving help from family and friends, receiving respite support, and participating in support groups. Filipino caregivers more often emphasized positive aspects of caregiving, whereas Whites often expressed that others do not understand the daily experiences of caregiving. Filipinos more commonly described caregivers as a 'good person' or 'saint' and emphasized that caregiving made them stronger.

Download full-text


Available from: Renée Lynn Beard, Aug 19, 2015
  • Source
    • "As individuals with dementia of the Alzheimer's type develop increased cognitive and functional impairments, they become more and more dependent upon external caregiving. Ivey et al. (2012) point out that there are " more than 10 million informal caregivers providing support for someone with AD or other dementia in the U.S (p. 807). "
    [Show description] [Hide description]
    DESCRIPTION: In this chapter we explore the potential impact of dementia on members of the global trans-identified population. In particular, we will focus on Alzheimer’s disease (AD) due to the loss of identity memory associated with the disease. In a recent study, it was found that dementia was so fearful to some trans-persons, along with the fear of abuse and inability to be authentic that a number of the survey respondents stated that they were planning to detransition or to self-euthanize. We argue that the complex interaction of AD dynamics and gender self-perception creates significant challenges for the trans-identified patient and for those around them. We observe that the transgender identity carries with it unique needs and that caregivers of transgender-identified individuals in later-life need to be sensitive to the complexities of the interaction of trans-identity and dementia. Consequently, we argue for specialized training for caregivers of AD trans-persons. Attention to bolstering individual, intergenerational and community-level social support must be considered when developing tailored interventions to address the needs of trans-elders with dementia. We observe that the continued need to reduce stigma and victimization and to include gender identity in non-discrimination and hate crime statutes are important steps to reduce health risks across the lifespan.
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: Introduction Limited research has examined primary care providers’ communication with patients about maintaining cognitive functioning. Our study’s objective was to compare the perceptions of consumers and primary care providers related to beliefs and communication practices about lifestyle behaviors beneficial for overall health and for maintaining cognitive functioning. Methods In 2009, we submitted 10 questions to Porter Novelli’s HealthStyles survey and 6 questions to their DocStyles survey. We compared consumers’ (n = 4,728) and providers’ (n = 1,250) beliefs, practices, and information sources related to maintaining health and cognitive functioning. We made comparisons using nonparametric statistics. Results Approximately 76% of consumers considered their health to be good or very good; 73.4% were concerned or very concerned about the possibility that their memory may worsen with age. Women were significantly more concerned than men, and white consumers were more concerned than black and Hispanic consumers. Consumers reported they believed that intellectual stimulation (86.6%), physical activity (82.6%), and healthful diet (82.5%) prevented or delayed cognitive impairment. Providers reported advising patients to reduce cognitive impairment risk through physical activity (85.9%), intellectual stimulation (80.3%), and social involvement (67.4%). Few consumers (7.8%) reported receiving this information from providers but reported learning about strategies to maintain memory, primarily from television (50.1%), magazines (44.1%), and newspapers (33.7%). Conclusion Providers reported advising patients about how to reduce risks of cognitive impairment. Consumers reported receiving this information from other sources. Findings suggest a need to examine and assess media messages and to better understand patient–provider communication about cognitive functioning.
    Preventing chronic disease 04/2013; 10(4):E58. DOI:10.5888/pcd10.120249 · 2.12 Impact Factor
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: Despite the rapid growth of the older ethnic minority population, knowledge about dementia care for this population is limited. This study examined the experience of dementia caregiving among Korean Americans. We conducted four focus groups with 23 family caregivers of older Korean Americans with dementia symptoms and identified eight themes: (a) struggling and overwhelmed; (b) keeping the cultural roles and responsibility; (c) doing it by themselves; (d) family as a source of stress; (e) limited knowledge and misconceptions; (f) learning as they go; (g) undiagnosed dementia and misunderstandings about medical care; and (h) barriers to use of services and need for culturally responsive services. The findings underscore that Korean Americans need dementia caregiver programs that are linguistically and culturally responsive.
    Clinical Gerontologist 01/2015; 38(1):32-48. DOI:10.1080/07317115.2014.970316 · 0.94 Impact Factor
Show more