Family Carers of People with Dementia

Primary Dementia Collaborative Research Centre and School of Psychiatry, University of New South Wales, Sydney, Australia.
Dialogues in clinical neuroscience 02/2009; 11(2):217-28.
Source: PubMed


Family caregivers of people with dementia, often called the invisible second patients, are critical to the quality of life of the care recipients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship. Caregivers vulnerable to adverse effects can be identified, as can factors which ameliorate or exacerbate burden and strain. Psychosocial interventions have been demonstrated to reduce caregiver burden and depression and delay nursing home admission. Comprehensive management of the patient with dementia includes building a partnership between health professionals and family caregivers, referral to Alzheimer's Associations, and psychosocial interventions where indicated.

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    • "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] . Informal caregivers sometimes experience strain, and changes such as shifts in power, health, quality of life, and social networks [10, 14]. "
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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
    • "To care for a spouse affected with dementia can be stressful and can risk the caregiver's health and wellbeing and lead to reduced life satisfaction (Ask et al, 2014). Nevertheless, most family members want to nurture and care for their loved one at home and try their best for as long as possible (Brodaty and Donkin, 2009). Wimo et al (2013) state that without the family, people affected with dementia would have a lower quality of life, need institutional care sooner, and the economy would become over-burdened. "

    No preview · Article · Jan 2016 · British journal of community nursing
    • "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. Compared with non-caregivers, caregivers showed significantly higher rates of depressive disorders [7] [10], they experienced decrements in immunity measures relative to controls [11] [12], and (to a smaller extent) reported more physical morbidity [7]. The findings regarding the extent to which bad health can be explained by the amount of assistance provided on the one hand and moderator variables like CRs' physical and cognitive impairment or the presence of behavioral problems on the other hand are not consistent across studies. "
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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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