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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    • "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.
    Health Policy 10/2015; DOI:10.1016/j.healthpol.2015.09.014 · 1.91 Impact Factor
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    • "In particular , spouses are more likely to care for a person with dementia than adult children ( Brodaty & Donkin , 2009 ) ; caring for a person with dementia may be more stressful than caring for a person with other disability . Moreover , hands - on care , dressing , and assisting with finances and other important everyday activities are more frequently performed by spouses than other carers but assuming these caregiving duties and responsibilities is related to higher stress levels ( Brodaty & Donkin , 2009 ) . Also , spousal carers tend to be older and may suffer from more health problems compared to other caregivers , lead - ing to greater perceived stress when assuming the caregiv - ing role ( Pinquart & S€ orensen , 2011 ) . "
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    ABSTRACT: Objectives: To prospectively investigate the impact of transitions in informal caregiving on emotional well-being over two years in a large population study of older people. Methods: Information on provision of unpaid care in 2004/2005 and 2006/2007 was available for 6571 participants in the English Longitudinal Study of Ageing. Three well-being domains were also assessed on each occasion: life satisfaction (measured with the Satisfaction with Life Scale); quality of life (assessed with the CASP-19 scale); and depression symptoms (measured using the Centers for Epidemiologic Studies Depression Scale). Multivariable analyses of the impact on well-being of two-year caregiving transitions (caregiving entry and caregiving exit, or continued caring) were conducted separately for spousal/child carers and carers of other family/non-relatives. Results: Compared to non-caregiving, entry into spousal/child caregiving was associated with decline in quality of life (B = -1.60, p < .01) whereas entry into caregiving involving other kin relations increased life satisfaction (B = 1.02, p < .01) and lowered depression symptoms (B = -0.26, p < .05). Contrary to expectations, caregiving exit was related to increased depression in both spousal/child (B = 0.44, p < .01) and non-spousal/child (B = 0.25, p < .05) carers. Continued spousal/child caregiving was also related to decline in quality of life (B = -1.24, p < .05). Other associations were suggestive but non-significant. Conclusion: The emotional impact of different caregiving transitions in later life differs across kin relationships; notably, spousal and child carers' well-being was consistently compromised at every stage of their caregiving career over the two-year study period.
    Aging and Mental Health 09/2015; DOI:10.1080/13607863.2015.1088510 · 1.75 Impact Factor
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    • "In order to understand differences in resources for family caregivers of individuals with AD, a closer look at racial/ethnic differences in correlates for positive experiences of caregiving contexts is essential. A few existing studies have addressed the importance of cultural context in family caregiving of Alzheimer's patients to reduce caregivers' stress and care recipients' nursing home admissions (Brodaty & Donkin, 2009; Spillman & Long, 2009). One pertinent study examined differences in positive aspects between African American and Caucasian caregivers with the Resources for Enhancing Alzheimer's Caregiver Health (REACH I) intervention (Roff et al., 2004). "
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    ABSTRACT: Taking a socioecological perspective, this study assessed the relationship of intrapersonal, interpersonal, and organizational factors to positive aspects of caregiving (PAC) for 642 dementia caregivers by racial/ethnic group from the baseline data of the multisite Resources for Enhancing Alzheimer's Caregiver Health II (REACH II) intervention. Nine intrapersonal indicators, 4 interpersonal indicators, and 12 organizational indicators were used. Blocked-multiple regression analyses by three racial/ethnic groups were computed to examine significant factors related to PAC among caregivers after controlling for memory and behavioral problems. Data showed a significant difference in PAC and significantly different indicators of PAC by racial/ethnic group. Hispanic caregivers reported the highest level of PAC while White participants showed the lowest scores on the measure of PAC. Education, marital status, and using formal transportation services were significant predictors for PAC among Hispanic caregivers; age, education, caregiving duration, and received social support were significant for PAC among African American caregivers; and sex, education, being a spousal caregiver, satisfaction with social support, using help from homemaker and visiting nurse services, and participating in support groups were significant among White caregivers. Findings indicate that PAC varies significantly across the three studied racial/ethnic groups of family caregivers and that intrapersonal, interpersonal, and organizational factors relate uniquely to PAC. Additional investigations of PAC could serve an important role in the development of family caregiving supports and services.
    Aging and Mental Health 07/2015; DOI:10.1080/13607863.2015.1068739 · 1.75 Impact Factor
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