Preserving personhood of individuals with advanced dementia: Lessons from family caregivers

This article reports on a phenomenological study of 15 family caregivers who admitted their spouse or parent with probable Alzheimer's disease to long-term care. The caregivers were attuned to the needs, desires, moods and concerns of their family members with dementia; thus, they were attuned to personhood. Caregivers also reported observations of care by nurses and nursing staff. Observations were of individualized care and actions that promoted personhood and impoverished care delivered with minimal or no communication. These family caregivers' perspectives can inform the care of individuals with advanced dementia by nurses and nursing staff.     

Effects of formal supports on stress outcomes in family caregivers of Alzheimer's patients

The aim of this study was to examine whether formal support and coping would mediate the effects of primary stressors and caregiver characteristics on three stress outcomes: yielding of role, anxiety, and physical health. Secondary analysis of longitudinal data from a convenience sample of 452 spouse and adult child caregivers of Alzheimer's patients was used for model testing. Path analysis suggested that decreased physical health of the caregiver was best explained by caregiver overload. Caregiver anxiety was explained by lower levels of care receiver dependency, higher levels of caregiver overload, and higher levels of caregiver anxiety measured 1 year earlier. Yielding of the caregiver role was explained by the direct effect of higher levels of care receiver problem behaviors as well as more use of formal supports. Spouse relationship had a negative effect and care receiver dependency had a positive effect on yielding of the role through the mediating influence of formal support. Neither coping nor formal support mediated primary stressors and caregiver characteristics in the directions hypothesized. © 1997 John Wiley & Sons, Inc. Res Nurs Health 20: 27–37, 1997     

Feasibility and short‐term impact of the “case study in‐house group training program for family nursing” at medical facilities

The aim of this study was to evaluate the feasibility and short‐term impact of case study training in family nursing care targeting midlevel nursing professionals. The intervention group participated in four 90‐minute case study training sessions over 6 months, while the control group participated in two 90‐minute lectures. Using primary outcome variables as evaluation indexes, we measured the participants' total scores on the Family Importance in Nursing Care Scale and 4 subitems 3 times (before, immediately after and 1 month after training) from May 2014 to March 2015 and then conducted 2‐way repeated‐measure analysis of variance. We asked the participants and training planners/managers to provide feedback on their evaluation and then performed content analysis on their responses. Although the primary impact due to the different measurement times was significant, no significant difference was observed in the interaction between measurement time and training differences. Of the 4 subitems, significant interactions because of measurement time and training differences were observed only in Fam‐B. Feedback data showed all participants felt that their understanding of the importance of family nursing care was strengthened, and participants in the intervention group specifically described how they were utilizing what they had learned from training in practice.     

Alzheimer's disease caregiving information and skills. Part II: family caregiver issues and concerns

In recent years researchers have carried out an increasing number of clinical trials with family caregivers of the elderly. The results of these interventions have suggested that caregiver skill-building interventions may be more effective than information/support interventions. Although researchers have given considerable attention to the information and support needed by family caregivers, less is known about how this information and support translates into caregiver skills or into changes in behavior. This is the second in a series of three articles on a study in which researchers used qualitative methods to analyze summaries from the group component of a larger caregiver clinical trial. In this article we describe caregiver issues and concerns in five major areas: (a). dealing with change, (b). managing competing responsibilities and stressors, (c). providing a broad spectrum of care, (d). finding and using resources, and (e). experiencing emotional and physical responses to care. We identify specific skills needed by caregivers in addressing these caregiving issues and concerns, and we compare and contrast skilled with less skilled caregivers. Further work is needed concerning the focus and methods of future caregiver skill-based interventions.     

‘Living Together With Dementia’: preliminary results of a training programme for family caregivers

The aim of this article was to present the preliminary results of a training programme for family caregivers of people with dementia at an early to moderate stage living at home – ‘Living Together With Dementia’. In this randomised controlled trial, 27 family caregivers who met the inclusion criteria were recruited from the neurology outpatient consultation clinic of a hospital in the north of Portugal and randomised into two groups (control and experimental) between October 2015 and March 2016. The programme ‘Living Together With Dementia’ was applied to the participants of the experimental group. The strategies used, overload, difficulties and satisfaction of the caregivers were assessed at three different stages (at the beginning and end of the intervention, as well as at follow‐up). For the data analysis, quantitative parametric measures were applied. The Health Ethical Commission of the Hospital Centre approved the study, and its protocol and Helsinki Declaration ethical principles were considered throughout the process. In the final assessment, an improvement in the overload and difficulties was confirmed, as was an increase in the caregivers’ satisfaction level and an improvement in coping/problem‐solving strategies. In the follow‐up stage, the results tended to revert towards those of the initial assessment. The programme ‘Living Together With Dementia’ appeared to be a major contribution enabling family caregivers of people with dementia, although there is a need to develop an efficacy study using a more substantial sample. The programme contributed to a reduction in the overload and difficulties borne by the family caregivers of people with dementia at an early to moderate stage living at home and to increased caregiver satisfaction.     

“Spontaneous Twiddler's” Syndrome: The Importance of the Device Shape

Twiddler's syndrome is caused by patient manipulation of the cardiac implantable device (CID) around its central axis within the pocket, resulting in retraction and dislocation of the electrodes. There are, however, some reports that Twiddler's syndrome may occur spontaneously without the patient's manipulation. This remains contentious as it may be argued that patients may not want to admit to manipulating the CID or may have been unaware of their actions. Recently, we have observed three very similar cases with a “spontaneous” Twiddler's syndrome resulting in lead displacement. All of the three patients denied device manipulation and were not prone to somnambulism or repetitive involuntary motor behaviors. It, therefore, seems highly unlikely that all patients could have manipulated the device in exactly the same way to result in the same postrotational position within the implant pocket. The fact is that the same device was implicated in all these cases in a relatively similar time sequence from implant to recognition of the implantable cardiac defibrillator rotation. We postulate that the unique elongated decision of the Fortify Assura (St. Jude Medical, Minneapolis, MN, USA) ICD makes this device prone to spontaneous rotation as is exemplified by our case series.     

Methodological issues in male caregiver research: an integrative review of the literature

PURPOSE OF THE PAPER: The purpose of this integrative review of the literature is to identify sampling and analysis issues related to gender in caregiver research in the nursing and health literature. BACKGROUND: Men provide approximately 28% of the care in the home to functionally impaired elders in the United States of America (USA), and because of demographic predictions are expected to provide more in the future. Social science research related to male caregivers has been criticized as having many limitations. A critical review of the nursing and health literature would be helpful to nursing researchers and clinicians by identifying limitations in caregiving research related to gender and providing direction for future research. METHODS: A literature search using the CINAHL database and the terms 'family caregiver', 'dementia', and 'male' was conducted. Thirty-six articles were retrieved, reviewed, and abstracted. FINDINGS: Thirteen articles were qualitative studies, 22 were quantitative, and one had both qualitative and quantitative components. Many of the studies used small samples, and no analysis was included by gender. Most of the samples were convenience samples, with many being self-selected. There was also a lack of analysis of data by family relationship. No qualitative studies and only nine of the quantitative studies included analysis of the data by gender. Studies that reported by gender were all cross-sectional. CONCLUSIONS: There is a need for caregiver research that has larger samples of males, and includes analysis by gender and family relationship. There is also a need for more intervention studies that are well controlled, and evaluate the effect of the intervention on both male and female caregivers.     

Effect of dementia on receipt of influenza vaccine: a cohort study in French older adults using administrative data: 2007–2012

Despite guidelines stating the vaccine benefit in this population, older adults with dementia may be less likely to receive influenza vaccine than cognitively intact older adults. But no study has yet reported on vaccine uptake in patients newly diagnosed with dementia or whether years since dementia diagnosis influences vaccine uptake. We conducted a cohort study in the French Health Insurance database (Echantillon Généraliste de Bénéficiaires) which contains hospital data and claims for a 1/97th random sample of the French population. Diseased subjects were ≥65 years and had a new record of dementia diagnosis between September 1, 2007, and August 31, 2008. Vaccine receipt was measured via influenza vaccine dispensing in community pharmacies. We described influenza vaccination rates up to 2011–2012 and estimated adjusted relative risks (aRR) for vaccine receipt each year using multivariate modified Poisson models controlling for sociodemographics, comorbidities, and health resources use. Four hundred and seven subjects with dementia (mean age 81.8 years, 69.3% females) and 4862 subjects (mean age 75.2 years, 61.3% females) without dementia were included. In 2008–2009, influenza vaccination prevalence was 70.0% (95% CI = [65.3–74.4]) and 70.2% (95% CI = [68.9–71.4]) in subjects with and without dementia, respectively (aRR = 0.93; 95% CI = [0.87–1.00]). In 2009–2010, the aRR was of the same magnitude (aRR = 0.96, 95% CI = [0.90–1.03]), but in 2010–2011 and 2011–2012, the aRR was 1.02 (95% CI = [0.94–1.11]) and 1.05 (95% CI = [0.96–1.14]), respectively. Subjects with dementia had a slightly nonsignificant lower receipt of influenza vaccine in the year following dementia diagnosis than subjects without dementia. In subsequent years, divergent trends were observed in vaccine uptake according to dementia status.     

Modeling the effects of past relationship and obligation on changes in the health and health promotion of women caregivers of family members with dementia

Wuest's (1998, 2001) caregiving theory was tested with 282 women self-identified as caregivers of family members with dementia to examine how quality of past relationship within caregiving dyads and sense of obligation to care affected their health outcomes and health promotion over 9 months, using latent growth curve analysis. The model explained 62% of the variance in women's health (Time 4). Health was affected positively by past relationship and negatively by obligation. Health promotion was positively affected by health (Time 1) and by obligation. Change observed in health promotion was nonlinear and positively affected health (Time 4). Findings suggest past relationship and obligation to care predict health outcomes for caregivers and that interventions to increase caregivers' health promotion may improve health outcomes.