scholarly journals Caring for a Family Member With Mild Dementia: Perceptions, Connections, and Relational Dynamics With the Sacred

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 464-464
Author(s):  
Jocelyn McGee ◽  
Dennis Myers ◽  
Rebecca Meraz ◽  
Davie Morgan

Abstract Researchers define spirituality as the search for or connection with the “sacred”, which is transcendent and considered blessed, holy, or revered. For some, the sacred is connection with a divinity (e.g., God, gods) and for others, a close relationship with something else bigger than themselves (e.g., the Universe, Nature, a life philosophy). Current research reports that family caregivers with a strong connection to the sacred, as compared with those who do not, have fewer symptoms of depression, more positive perceptions of the caregiving experience, improved coping, and bolstered resilience. However, there is limited research on the impact of spirituality on the perceptions of familial caregivers whose loved ones have recently been diagnosed with dementia. In this study, 27 family caregivers of persons with mild dementia (CDR=1) were interviewed using the Dimensions of Caregiving Interview (DCI, McGee & Carlson, 2013). The DCI identified positive psychological aspects of the caregiving experience, including spirituality. Three heuristic themes emerged from Directed Content Analysis: perceptions about the sacred reflect variability in the early part of the caregiving journey; specific characteristics, traits, and functions of the sacred shape caregiver coping and adjustment; and the relational dynamics between caregivers and the sacred inform adaptation. Recommendations for clinical practice and additional research are provided.

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 871.2-871
Author(s):  
F. Araujo ◽  
N. Gonçalves ◽  
A. F. Mourão

Background:The outcomes of the infection by the SARS-CoV-2 in patients with immune-mediated inflammatory diseases were largely unknown during the early days of the COVID-19 pandemic. It was hypothesized that these patients were at higher risk of morbidity and mortality due to their inherent immune dysfunction and immunosuppressive therapy. Several rheumatology societies issued recommendations urging patients not to stop their anti-rheumatic treatments.Objectives:To assess treatment compliance of patients with rheumatoid arthritis (RA) during the first wave of the SARS-CoV-2/COVID-19 pandemic in Portugal.Methods:The web-based survey COVIDRA (COVID in RA) was developed to assess the impact of the first wave mandatory confinement in patients with RA focusing on 5 domains: RA symptoms, attitudes towards medication, employment status, physical exercise and mental health. The questionnaire was sent to RA patients through e-mail and social media of the Portuguese Society of Rheumatology and two patient associations; and it was filled locally at two rheumatology centers in Lisbon. Recruitment took place during June and July 2020. Descriptive statistics were generated by the survey software and were afterwards transported and evaluated using appropriate biostatistics software.Results:We obtained 441 valid questionnaires. Most respondents were female (88.4%), caucasian (93.6%), with a mean age of 58 (+/-13) years. The majority (57.6%) had longstanding disease (>10 years) and were treated with csDMARDs (63.2%) and/or bDMARDs/tsDMARDS (23,7%). Only 14% (N=61) discontinued or reduced the dosage or frequency of their RA treatment. Most of these changes were previously planned by the attending physician (27.9%). Only 11 patients (18%) discontinued their immunosuppressive medication out of fear of becoming infected with SARS-CoV-2 (corresponding to 2.5% of total responders). Another 11 patients did so because they had no prescription, couldn’t go to the community/hospital pharmacy or couldn’t afford the medication. Although these numbers preclude any statistical analysis, when compared to patients who persisted on their treatment, those discontinuing due to fear of contagion were younger (56.4 vs 58.5 years), all female (100 vs 86.8%), with long-lasting disease (≥ 11 years) (90.9% vs 57.5%), more frequently treated with bDMARDs (36.4 vs 23.1%) and presenting more symptoms of depression (54.5 vs 49.7%).Conclusion:Most RA patients complied with their treatment during the first wave of the SARS-CoV-2 pandemic in Portugal. Only a minority changed their immunosuppressive treatment due to fear of SARS-CoV-2 infection. Very similar rates of immunosuppressive discontinuation due to fear of contagion were reported by other authors (such as Schmeiser et al, Pineda-sic et al and Fragoulis et al).Disclosure of Interests:Filipe Araujo Speakers bureau: Pfizer, Biogen, Novartis, Menarini, Consultant of: MSD, Nuno Gonçalves: None declared, Ana Filipa Mourão: None declared.


2020 ◽  
Vol 32 (S1) ◽  
pp. 123-123
Author(s):  
Ken Schwartz ◽  
Robert Madan ◽  
Anna Berall ◽  
Marsha Natadira ◽  
Anna Santiago

Background:Responsive behaviours in dementia are associated with poor outcomes for the person with dementia (PWD) and caregiver burnout. Family caregivers need a variety of tools to manage responsive behaviours. The Baycrest Quick-Response Caregiver Tool was developed to provide caregivers with a tool that can be used in real time. In this study, the feasibility, impact, and effectiveness of this new tool were studied in family caregivers and health care providers (HCP) using quantitative and qualitative measures.Methods:Family caregivers were recruited and were asked to complete a pre-survey before being sent the link to the educational tool. One month after the telephone survey, caregivers were sent an online post-survey to gather their feedback on the tool and the impact of the tool on caregiver well -being. Healthcare providers were also recruited and reviewed the tool through an online feedback survey. The feasibility, impact, and effectiveness of the tool were assessed using quantitative and qualitative measures.Results:Caregivers had a moderate degree of and reported a high level of competence - these scores were maintained throughout the study. Caregivers reported that tool positively impacted their compassion towards the person with dementia (PWD), and that their interactions with improved. 100% of HCP who completed the feedback survey would recommend the tool to other HCP and to caregivers of PWD. The caregivers and HCP provided specific suggestions for improvement.Conclusions:The Baycrest Quick-Response Caregiver Tool was found to be feasible and helpful. It provides caregivers and HCP with an additional approach for responsive behaviours.


2021 ◽  
Vol 10 (6) ◽  
pp. 1161
Author(s):  
Raluca Pais ◽  
Thomas Maurel

The epidemiology and the current burden of chronic liver disease are changing globally, with non-alcoholic fatty liver disease (NAFLD) becoming the most frequent cause of liver disease in close relationship with the global epidemics of obesity, type 2 diabetes and metabolic syndrome. The clinical phenotypes of NAFLD are very heterogeneous in relationship with multiple pathways involved in the disease progression. In the absence of a specific treatment for non-alcoholic steatohepatitis (NASH), it is important to understand the natural history of the disease, to identify and to optimize the control of factors that are involved in disease progression. In this paper we propose a critical analysis of factors that are involved in the progression of the liver damage and the occurrence of extra-hepatic complications (cardiovascular diseases, extra hepatic cancer) in patients with NAFLD. We also briefly discuss the impact of the heterogeneity of the clinical phenotype of NAFLD on the clinical practice globally and at the individual level.


Healthcare ◽  
2021 ◽  
Vol 9 (2) ◽  
pp. 226
Author(s):  
Rishabh Garg ◽  
Khurshid Mattoo ◽  
Lakshya Kumar ◽  
Imran Khalid ◽  
Fawaz Baig ◽  
...  

Geriatric patients in various outpatient department (OPDs) have been found to agonize from elder abuse and neglect (EAN). Such suffering imposes depressive states within individuals, which in turn affects treatment compliance. The objective of this study was to evaluate the impact of sensitization (psychotherapeutic) of family caregivers (FCGs) upon two denture treatment parameters (maintenance and treatment satisfaction) among EAN patients and compare the differences in outcome with non-abused patients. A survey of completely edentulous subjects (n = 860, aged 41–80 years) provided a sampling frame of 332 EAN patients from which 150 patients (including FCGs) fulfilling the study criteria were distributed (simple random, convenient) into two groups (Group A—control, Group B—test). FCG sensitization for subjects in Group B was performed by a clinical psychologist in 2–4 short (30 min) sessions. Demographic characteristics (frequency) were measured using a self-reported questionnaire, denture maintenance was measured using a denture hygiene index (scores), and treatment satisfaction was analyzed on a 10-point visual analog scale. Relevant data were calculated for means and absolute/relative frequencies. Any difference between two groups was estimated using an unpaired t-test while the level of relationship was determined by Karl Pearson’s test at a p-value of < 0.05. The results showed highest frequency (38.6%) for neglect, with elder neglect (EN) being most common (38.14% alone and 14% in combination). EN was found more if the FCG was a son (52%), in the age group (21–30 years), and with low education and low income (75%). Patients whose FCGs were counselled (Group B) demonstrated low denture plaque scores (mean = 1.38 ± 0.618), while demonstrating comparatively higher scores in six different parameters of treatment satisfaction. Differences between the two groups for both parameters were also found to be statistically significant. Psychotherapeutic counselling in the form of FCG sensitization brings better results of denture maintenance and treatment satisfaction.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.


2021 ◽  
pp. 002076402110102
Author(s):  
Rochelle A Burgess ◽  
Niklas Jeske ◽  
Shahana Rasool ◽  
Ayesha Ahmad ◽  
Anna Kydd ◽  
...  

Background: Depression is a leading cause of disease burden worldwide but is often undertreated in low- and middle-income countries. Reasons behind the treatment gap vary, but many highlight a lack of interventions which speak to the socio-economic and structural realties that are associated to mental health problems in many settings, including South Africa. The COURRAGE-PLUS intervention responds to this gap, by combining a collective narrative therapy (9 weeks) intervention, with a social intervention promoting group-led practical action against structural determinants of poor mental health (4 weeks), for a total of 13 sessions. The overall aim is to promote mental health, while empowering communities to acknowledge, and respond in locally meaningful ways to social adversity linked to development of mental distress. Aim: To pilot and evaluate the effectiveness of a complex intervention – COURRAGE-PLUS on symptoms of depression as assessed by the Patient Health Questionnaire (PHQ-9) among a sample of women facing contexts of adversity in Gauteng, South Africa. Methods: PHQ-9 scores were assessed at baseline, post collective narrative therapy (midline), and post social intervention (endline). Median scores and corresponding interquartile ranges were computed for all time points. Differences in scores between time points were tested with a non-parametric Friedman test. The impact across symptom severities was compared descriptively to identify potential differences in impact across categories of symptom severity within our sample. Results: Participants’ ( n = 47) median depression score at baseline was 11 (IQR = 7) and reduced to 4 at midline (IQR = 7) to 0 at endline (IQR = 2.5). The Friedman test showed a statistically significant difference between depression scores across time points, [Formula: see text](2) = 49.29, p < .001. Median depression scores were reduced to 0 or 1 Post-Intervention across all four severity groups. Conclusions: COURRAGE-PLUS was highly effective at reducing symptoms of depression across the spectrum of severities in this sample of women facing adversity, in Gauteng, South Africa. Findings supports the need for larger trials to investigate collective narrative storytelling and social interventions as community-based interventions for populations experiencing adversity and mental distress.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 360-360
Author(s):  
Barbara Hodgdon ◽  
Jen Wong

Abstract Filial caregivers (e.g., individuals caring for a parent or parent-in-law) are a part of the growing number of family caregivers in midlife and late adulthood. The responsibilities that filial caregivers navigate in midlife and late adulthood may expose them to multiple types of discrimination that may decrease their physical health, though this relationship has been understudied. As numbers of family caregivers grow, it is important to examine the potential vulnerability of younger and older filial caregivers’ physical health in the context of discrimination. Informed by the life course perspective, this study compares the physical health of younger (aged 34-64) and older (aged 64-74) filial caregivers who experience discrimination. Filial caregivers (N=270; Mage=53; SD=9.37) from the Midlife in the United States (MIDUS-II) Survey reported on demographics, family caregiving, daily discrimination, self-rated physical health, and chronic conditions via questionnaires and phone interviews. Regression analyses showed no differences between younger and older adults’ self-rated physical health or average chronic conditions. However, moderation analyses revealed that younger filial caregivers who experienced greater discrimination reported poorer self-rated physical health than their older counter parts as well as younger and older filial caregivers who experienced less discrimination. Additionally, younger caregivers with greater discrimination exposure exhibited more number of chronic conditions as compared to other caregivers. The study results highlight the impact of the intersection between filial caregivers’ age and discrimination on physical health. Findings have the potential to inform programs that could promote the health of filial caregivers in the face of discrimination.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 152-152
Author(s):  
Afeez Hazzan

Abstract Family caregivers of older people living with dementia are relatives, friends, or neighbors who provide assistance related to this condition, but who are unpaid for the services they provide. Although caregiving could be personally rewarding, many caregivers report a high level of strain. Compared to caregivers of older adults who do not have dementia, family caregivers of older people living with dementia report lower quality-of-life (QoL). In a published systematic review examining the relationship between family caregiver QoL and the quality of care provided, only one study was found to be somewhat relevant. The study suggested that the primary reason for an absence of research into the link between family caregiver QoL and quality of care was the absence of a questionnaire for measuring quality of care in dementia. Therefore, any attempt to investigate the impact of caregiver QoL on the care provided to older people with dementia must first address the lack of an instrument to measure quality of care. To address this issue, we interviewed approximately 20 family caregivers in order to elicit feedback on measurements and interpretation of the quality of care provided by family caregivers of older people living with dementia. Content analysis of the interview transcripts revealed that the quality of relationships with family, caregiver availability to provide or supervise care, and availability of paid or volunteer help are important for the quality of care provided. These results have important implications, particularly for the development of an instrument to measure quality of care in dementia.


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