The purpose of this study was to examine the effects that changes in behavioral and psychological symptoms of dementia of persons with Alzheimer's disease have on their caregivers' mental health and physical health. The research design was a prospective, longitudinal follow-up study conducted in a major medical center and in participants' homes. Longitudinal analysis linking change in behavior to caregiver outcomes was based on 64 cases. Care recipients were assessed at the time of diagnosis with the Mini-Mental State Examination (MMSE). To provide information on the care recipient's behaviors, caregivers participated in an interview with the Modified Neuropsychiatric Inventory at diagnosis and at follow-up. Caregivers also completed a battery of established instruments to measure stress appraisal, mental health, and perceptions of their physical health at follow-up. Results showed that increases in problem behaviors among persons living with dementia, along with residence status, were significant predictors of caregivers' mental health and also their physical health. However, these relationships were mediated through stress appraisal. Variables such as MMSE score of the person with dementia, number of years caregiving, relationship status, and education level were not significant predictors of caregivers' health when behavior change was in the model.
"Family caregivers of persons with dementia are more likely to spend more time providing care and dealing with challenging behaviour compared with caregivers to people with other diagnoses. They can also experience a greater feeling of captivity in the caregiving role (Bertrand, Fredman, & Saczynski, 2006; Hooker et al., 2002). However, there are also documented positive consequences of caring for a person with dementia , such as feeling appreciated and loved and having a sense of accomplishment (Duggleby, Williams, Wright, & Bollinger, 2009; Netto, Goh, & Yap, 2009). "
[Show abstract][Hide abstract] ABSTRACT: Objectives:
This qualitative study aimed to illuminate former family caregivers' experiences of aspects that facilitate and hinder the process of relinquishing the care of a person with dementia to a nursing home.
Ten narrative interviews with former family caregivers were performed and subjected to qualitative content analysis.
An overall theme showed that family caregivers were remaining connected to the person with dementia despite separation. They experienced being 'caught by surprise' when the placement occurred. Negative expectations of dementia care made the separation more difficult. Lacking adequate information increased feelings of insecurity. Despite these hurdles, family caregivers found meaning in the new situation as they felt that they could remain connected to their loved one. Being recognized as partners in care of the person with dementia after placement was a facilitating aspect. Family caregivers regarded a well-functioning interaction with staff and a supportive social network as reassuring since they facilitated staying in touch.
Knowledge of the relinquishing process and adequate information about dementia and its progression may help family caregivers better prepare for and adapt to the situation. Family caregivers need to be recognized as partners in care and a welcoming nursing home environment is of utmost importance.
Aging and Mental Health 05/2014; 18(8):1-8. DOI:10.1080/13607863.2014.908456 · 1.75 Impact Factor
"They frequently experience high levels of stress, associated with a higher risk of developing mood disorders, depression, insomnia and a lower quality of life . Anxiety and stress also increase their likelihood of developing physical problems, such as headache, back pain and excess weight, and exposes them to a higher rate of mortality compared to their non-caregiver counterparts [9,10]. "
[Show abstract][Hide abstract] ABSTRACT: Background
The epidemic of Alzheimer's disease (AD) represents a significant challenge for the health care and social service systems of many developed countries. AD affects both patients and family caregivers, on whom the main burden of care falls, putting them at higher risk of stress, anxiety, mortality and lower quality of life. Evidence remains controversial concerning the effectiveness of providing support to caregivers of AD patients, through case management, counseling, training, technological devices and the integration of existing care services. The main objectives of the UP-TECH project are: 1) to reduce the care burden of family caregivers of AD patients; and 2) to maintain AD patients at home.
A total of 450 dyads comprising AD patients and their caregivers in five health districts of the Marche region, Italy, will be randomized into three study arms. Participants in the first study arm will receive comprehensive care and support from a case manager (an ad hoc trained social worker) (UP group). Subjects in the second study arm will be similarly supported by a case manager, but in addition will receive a technological toolkit (UP-TECH group). Participants in the control arm will only receive brochures regarding available services. All subjects will be visited at home by a trained nurse who will assess them using a standardized questionnaire at enrollment (M0), 6 months (M6) and 12 months (M12). Follow-up telephone interviews are scheduled at 24 months (M24). The primary outcomes are: 1) caregiver burden, measured using the Caregiver Burden Inventory (CBI); and 2) the actual number of days spent at home during the study period, defined as the number of days free from institutionalizations, hospitalizations and stays in an observation unit of an emergency room.
The UP-TECH project protocol integrates previous evidence on the effectiveness of strategies in dementia care, that is, the use of case management, new technologies, nurse home visits and efforts toward the integration of existing services in an ambitious holistic design. The analysis of different interventions is expected to provide sound evidence of the effectiveness and cost of programs supporting AD patients in the community.
"Consistently with previous research on dementia caregiving (Gaugler, R.L. Kane, R.A. Kane, & Newcomer, 2005; Hooker et al., 2002; Teri, 1997), the present study has found that caregivers' reported frequency of behavioral problems is significantly associated with subjective stressors (burden) and negative outcomes (depression and anxiety). The stress and coping model (e.g., Haley, Levine, Brown, & Bartolucci, 1987) hypothesizes that caregivers' selfefficacy may influence the relationship between stressors and outcomes. "
[Show abstract][Hide abstract] ABSTRACT: Studies analyzing the moderator role of self-efficacy have centered their attention on the relationship between stressors and distress. However, drawing upon the stress and coping model, the moderator effects of self-efficacy may appear in the relationship between other key elements of the stress process.
The purpose of this study was to analyze, in a sample of 167 dementia family caregivers, (1) the moderating effect of self-efficacy for managing behavioral problems on the relationship between frequency of behavioral problems and burden; and (2) the moderating effect of self-efficacy for controlling upsetting thoughts on the relationship between burden and caregivers' distress (depression and anxiety).
While no support has been found for the hypothesis that self-efficacy for managing behavioral problems moderates the relationship between frequency of behavioral problems and burden, our findings support the moderator role of self-efficacy for controlling upsetting thoughts in the relationship between burden and distress. No differences in distress measures are found between caregivers with high and low scores on self-efficacy for controlling upsetting thoughts when they report low levels of burden. However, when the levels of burden are high, caregivers with high self-efficacy for controlling upsetting thoughts report significantly lower levels of distress than caregivers with low self-efficacy for controlling upsetting thoughts.
Self-efficacy for controlling upsetting thoughts may be particularly effective for caregivers who report high burden scores, attenuating the impact of burden on caregivers' distress (depression and anxiety).
Aging and Mental Health 10/2010; 15(2):221-31. DOI:10.1080/13607863.2010.505231 · 1.75 Impact Factor
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