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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Available from: José M Peeters
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    • "The experience of informal caregivers when providing care and service to older PwD may differ from person to person. Some perceive the caring as a positive experience [10] but it can also be physically and mentally demanding and sometimes more than they can manage101112 . Informal caregivers caring for older PwD are at increased risk of stress, depression, strain, and other health complica- tions [13, 14] and have higher mortality compared to informal caregivers caring for older persons without dementia [11] . "
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    ABSTRACT: Background In European countries, knowledge about availability and utilization of support for informal caregivers caring for older persons (≥65 years) with dementia (PwD) is lacking. To be able to evaluate and develop the dementia support system for informal caregivers to PwD, a survey of European support systems and professionals involved is needed. The aim of this study was to explore support for informal caregivers to PwD in European countries. We investigated the availability and utilization of support in each of the participating countries, and the professional care providers involved, through the dementia disease. Methods A mapping system was used in 2010–2011 to gather information about estimations of availability, utilization, and professional providers of support to informal caregivers caring for PwD. Data collected was representing each country as a whole. Results There was high availability of counselling, caregiver support, and education from the diagnosis to the intermediate stage, with a decrease in the late to end of life stage. Utilization was low, although there was a small increase in the intermediate stage. Day care and respite care were highly available in the diagnosis to the intermediate stage, with a decrease in the late to end of life stage, but both types of care were utilized by few or no caregivers through any of the disease stages. Professionals specialized in dementia (Bachelor to Master’s degree) provided counselling and education, whereas caregiver support for informal caregivers and day care, respite care, and respite care at home were provided by professionals with education ranging from upper secondary schooling to a Master’s degree. Conclusions Counselling, caregiver support, and education were highly available in European countries from diagnosis to the intermediate stage of the dementia disease, decreasing in the late/end of life stages but were rarely utilized. Countries with care systems based on national guidelines for dementia care seem to be more aware of the importance of professionals specialized in dementia care when providing support to informal caregivers. Mapping the systems of support for informal caregivers of PwD is a valuable tool for evaluating existing systems, internationally, nationally and locally for policy making.
    Full-text · Article · Dec 2016 · BMC Geriatrics
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    • "For those living at home, much of the care falls to informal carers, such as partners or adult children. Almost all informal carers experience problems in caring for a relative with dementia: for instance, difficulties in dealing with behaviour changes and fears about admitting their relative to a nursing home (Zwaanswijk, Peeters, van Beek, Meerveld, & Francke, 2013). In addition, informal carers often experience moderate to high-carer burden (Etters, Goodall, & Harrison, 2008; Kurasawa et al., 2012), with feelings of overwhelming responsibility, difficulties combining work commitments with their role as carers, sleep disturbance and psychological problems (De Boer et al., 2012; McCurry, Logsdon, Teri, & Vitiello, 2007; Pot, van Dyck, & Deeg, 1995). "
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    ABSTRACT: This paper focuses on the evaluation of dementia case management in the Netherlands, as well as factors associated with positive evaluations of informal caregivers. A survey was completed by 554 informal carers. The majority of the informal carers were older (69% was 55+), and female (73%), and often concerned the partner or adult children of the person with dementia. Eighty percent indicated that the contact with the case manager facilitated their role as informal carer, while 95% or more stated that the case manager showed sufficient understanding, allowed enough space to decide together on how to approach problems in the care, took time to listen to their story, gave sufficient attention to and showed interest in their relative, took their schedule into account and/or kept appointments. Contrary to the expectations, multilevel analyses did not show association between informal caregivers' care burden and the evaluation of case management. Neither were the period living with dementia and the number of personal contacts with the case manager associated with the evaluations of informal caregivers. However, being the partner of the patient was significantly related (p < 0.05) to a positive overall evaluation by informal carers. These results suggest that sufficient case management resources should be offered and targeted especially towards partners of people with dementia.
    Full-text · Article · Nov 2015 · Dementia
    • "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.
    No preview · Article · Oct 2015 · Health Policy
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