Family caregivers 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

ABSTRACT 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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    ABSTRACT: ABSTRACT Background: Numerous studies have reported that caring for a person with dementia is a stressful experience. Nevertheless, quality of life (QoL) measures have commonly focused on patients, while factors that influence caregivers' QoL have not been clearly identified. In order to contribute to the understanding of caregivers' QoL, we explored how QoL among caregivers is related to their perceived level of burden, their reported number of depressive symptoms, and the level of care recipients' dependency. Methods: Seventy-six caregivers referred by the two main referral centers of patients with dementia in Cyprus participated in a cross-sectional survey with a descriptive correlational design. Caregivers completed four instruments, measuring burden (ZBI), depression (CES-D), quality of life-Alzheimer's disease (QoL-AD), and activities of daily living (ADL) of the care recipients and provided socio-demographic information. Results: The majority of the participants scored high levels of burden (M = 43.32/SD = 15.23) and depression (59.2% scored over the cut-off point of 16). QoL was only moderate (M = 30.89/SD = 8.21) and negatively correlated with burden (r = -32, p = 0.01) and depression (r = -0.296, p < 0.05). Only a weak correlation was observed between QoL and ADL (r = 0.167, p = 0.15). Hierarchical multiple regression analyses revealed that overall burden scores and income were associated with QoL, explaining 20% of the overall variance of the caregiver's QoL. Conclusion: Further research is necessary to investigate which additional domains determine QoL and further our understanding of the factors that may reduce the burden imposed on dementia caregivers.
    International Psychogeriatrics 12/2013; · 2.19 Impact Factor
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    ABSTRACT: ABSTRACT Background: Behavioral and psychological symptoms of dementia (BPSD) are often considered to be the greatest challenge in dementia care, leading to increased healthcare costs, caregiver burden, and placement into care facilities. With potential for pharmacological intervention to exacerbate behaviors or even lead to mortality, the development and rigorous testing of non-pharmacological interventions is vital. A pilot of the Tailored Activities Program (TAP) for reducing problem behaviors in people with dementia was conducted in the United States with promising results. This randomized trial will investigate the effectiveness of TAP for reducing the burden of BPSD on persons with dementia and family caregivers within an Australian population. This trial will also examine the cost-effectiveness and willingness to pay for TAP compared with a control group. Methods: This randomized trial aims to recruit 180 participant dyads of a person with dementia and their caregivers. Participants will have a diagnosis of dementia, exhibit behaviors as scored by the Neuropsychiatric Inventory, and the caregiver must have at least 7 h per week contact. Participants will be randomly allocated to intervention (TAP) or control (phone-based education sessions) groups, both provided by a trained occupational therapist. Primary outcome measure will be the revised Neuropsychiatric Inventory - Clinician rating scale (NPI-C) to measure BPSD exhibited by the person with dementia. Conclusions: This trial investigates the effectiveness and cost-effectiveness of TAP within an Australian population. Results will address a significant gap in the current Australian community-support base for people living with dementia and their caregivers.
    International Psychogeriatrics 02/2014; · 2.19 Impact Factor
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    ABSTRACT: To examine factors influencing the caregiver burden in adult-child and spousal caregivers of community-dwelling patients with Alzheimer's disease (AD). Baseline data from the 18-month, prospective, observational GERAS study of 1,497 patients with AD in France, Germany, and the UK were used. Analyses were performed on two groups of caregivers: spouses (n = 985) and adult children (n = 405). General linear models estimated patient and caregiver factors associated with subjective caregiver burden assessed using the Zarit Burden Interview. The caregiver burden increased with AD severity. Adult-child caregivers experienced a higher burden than spousal caregivers despite spending less time caring. Worse patient functional ability and more caregiver distress were independently associated with a greater burden in both adult-child and spousal caregivers. Additional factors were differentially associated with a greater caregiver burden in both groups. In adult-child caregivers these were: living with the patient, patient living in an urban location, and patient with a fall in the past 3 months; in spouses the factors were: caregiver gender (female) and age (younger), and more years of patient education. The perceived burden differed between adult-child and spousal caregivers, and specific patient and caregiver factors were differentially associated with this burden.
    Dementia and geriatric cognitive disorders extra. 01/2014; 4(1):51-64.

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