Informal Caregivers of People with Dementia: Problems, Needs and Support in the Initial Stage and in Subsequent Stages of Dementia: A Questionnaire Survey

NIVEL, Netherlands Institute for Health Services Research, P.O. Box 1568, 3500 BN Utrecht, The Netherlands.
The Open Nursing Journal 01/2013; 7(1):6-13. DOI: 10.2174/1874434601307010006
Source: PubMed


The ageing of the population is expected to lead to an increase in the prevalence of dementia. Providing support to informal caregivers is essential to promote their wellbeing and prevent serious caregiver burden. The aim of the study is to investigate whether differences occur between the initial and later stages of dementia in terms of (1) problems experienced by informal caregivers in the provision of care, (2) use of professional support by persons with dementia, (3) informal caregivers' needs for additional professional support.
The data were collected within the framework of the Dutch National Dementia Program, which was instigated in 2005 by the Dutch Ministry of Health, Welfare and Sport to improve integrated care for people with dementia and their informal caregivers. This paper is based on data of a questionnaire survey among 1494 informal caregivers, collected between September 2007 and December 2008.
Most informal caregivers (98-99%) experienced problems in caring for a person with dementia, irrespective of the stage of the illness process. In later stages, informal caregivers more often experienced problems in their social networks. Most dementia patients (87-94%) received ambulatory professional support.
Since informal caregivers indicate a need for additional professional support in all stages of dementia, professional support should be provided during the entire illness process. Informal caregivers need advice on how to cope with symptoms of dementia, how to deal with behavior problems and receive more information about (early and advanced stages of) dementia and the supply of support.

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    • "However, in order to quantify the net savings on formal care expenditures, it has to be taken into account that informal caregiving might influence caregivers' health and health care utilization as well. Dementia caregiving is often perceived as stressful and extremely challenging by many caregivers [7] [8]. Even though providing care to a relative or a close friend can also be accompanied by positive aspects such as feeling useful or experiencing pride in one's own abilities to cope with crisis [9], past studies have shown that dementia caregiving has been linked to a number of adverse health conditions. "
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    ABSTRACT: Background: Informal (dementia) care has economic consequences throughout the health care system. Whilst the health and wellbeing of the care recipient might improve, the health of the caregiver might also change, typically for the worse. Therefore, this analysis aims to examine the association between caregiving intensity and caregivers' health and health care utilization. Data and methods: The empirical analysis is based on cross-sectional survey data generated by the European Project "RightTimePlaceCare" (RTPC). RTPC was a prospective cohort study conducted in eight European countries (Estonia, Finland, France, Germany, Netherlands, Sweden, Spain and the United Kingdom). The health status of 1029 informal caregivers was assessed by measures of psychological wellbeing (GHQ-12) and self-rated overall health (EQ-VAS). Health care utilization was measured by (i) the self-stated proportion of health care use influenced by caregiving and (ii) the probability of at least one visit to a general practitioner within in the last 30 days. The association between caregiving intensity and caregivers' health and health care utilization was assessed by descriptive analysis and multivariate OLS- and probit-models. Results: A higher amount of informal care was significantly related to negative health outcomes for informal caregivers. On average, one additional hour of informal caregiving per day was associated with a decrease of psychological wellbeing and self-rated overall health by 0.16 and 0.42 index points respectively. Furthermore, one more hour of informal caregiving corresponded with increased self-stated proportion of health care use by 0.56 percentage points. However, the claim of increased health care demand due to caregiving as measured by GP visits was only partly confirmed. Conclusion: When evaluating the full economic effect of informal care, the impact of providing care on caregivers' health and health care utilization has to be taken into account.
    Health Policy 10/2015; DOI:10.1016/j.healthpol.2015.09.014 · 1.91 Impact Factor
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    • "Throughout the Western world, female family members caring for relatives tend to suffer from stress and exhaustion to a greater extent than male caregivers (Gottlieb & Gignac, 1996; Almberg et al., 1997; Patterson et al., 1998; Williamson & Schaffer, 2001) and are also at greater risk of depression (Beeson et al., 2000; Covinsky et al., 2003; Mahoney et al., 2005). Zwaanswij et al. (2013) show that family caregivers taking care of a person with dementia experienced problems in caring irrespective of the stage of the illness. Studies in other cultural contexts show that a strong focus on the family can both reduce (Knight et al., 2002) and increase (Youn et al., 1999) burden and depression especially combined with a low income (Kim & Lee, 2003). "
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    ABSTRACT: This study aimed to describe and compare urban and rural family caregivers' reactions to caring for a relative with dementia and to examine the associations between caregiving and socio-demographic factors. Most studies on family caregivers' experiences caring for older people with dementia have been conducted in urban areas, and little is known about the experiences of family caregivers living in rural areas. A cross-sectional study design was used. A total of 102 caregivers (response rate 85%) from urban (n = 57) and rural (n = 46) areas completed the Caregiver Reaction Assessment (CRA) Scale and demographic information. Data were analysed using descriptive and inferential statistics and linear regression models. Overall, family caregivers reported high satisfaction even if they also reported high impact on finances and daily living. Rural caregivers experienced a higher negative impact on finances but reported more support from family members than urban caregivers. Age, gender and relationship were significantly associated with four of the five CRA subscales. Educational level and geographical setting were not associated with any of the CRA subscales. The results of the study raise questions about the financial situation of older female caregivers and on the expectations of built-in family structures in urban and rural areas. Further studies focusing on the meaning and constitution of a family would help us to understand how these factors influence family caregiving both in rural and urban areas. To provide person-centred care and to avoid stereotyped caregiving, a better picture of traditions in family caregiving can improve a more differentiated and appropriate professional caregiving pliable with the cultural context in which it is carried out.
    International Journal of Older People Nursing 01/2014; 10(1). DOI:10.1111/opn.12044
    • "As a result, informal caregivers of people with dementia have increasingly assumed the responsibility of care at home and provision of financial and social support. Informal caregivers face several challenges and stressors, including financial strain, increased vulnerability to emotional and physical burnout, and disruption in household and work routines as a result of the demands of caregiving (Brodaty and Donkin, 2009; Chan, 2010; Ornstein and Gaugler, 2012; Zwaanswijk et al., 2013). Several studies have highlighted the plight of informal caregivers; some have reported a range of caregiver burden (Mehta, 2005; Kurasawa et al., 2012), while others have presented them in the context of deinstitutionalization of care (Tew et al., 2010; Bakker et al., 2012). "
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    ABSTRACT: Background: This study aimed to explore the experiences and challenges of informal caregivers in Singapore with the intent of identifying the multi-dimensional unmet needs from their perspective and generating caregivers' needs checklist based on the findings. Methods: Informal caregivers were relatives of people with dementia and were responsible for organizing care and providing regular physical and/or financial support. Using a qualitative research design, informal caregivers' experiences were explored. A total of ten focus group discussions and 12 semi-structured interviews were conducted with adult caregivers. Caregivers' perceived unmet needs were identified using thematic analysis. Findings from the qualitative study were combined with inputs from professionals to create a checklist of caregivers' needs for dementia. Results: The average age of the participants was 52.9 years; the majority of the participants were of Chinese ethnicity (50%), followed by Indian (23%), Malay (22%), and other (3%) ethnic groups. Informal caregivers perceived four categories of unmet needs: (i) emotional and social support, (ii) information, (iii) financial support, and (iv) accessible and appropriate facilities. Caregivers strongly expressed the need for emotional support to overcome the psychological and physical burden of care. Challenges with obtaining adequate information, access to services, and financial barriers were discussed. Based on these findings and expert panel discussions, a checklist of 26 items representing their unmet needs was designed. Conclusions: Informal caregivers face several challenges while caring for their relative with dementia and hence there is a clear demand to address their unmet needs for information, services, respite, and emotional and financial support.
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