scholarly journals THE ALZHEIMER’S ASSOCIATION NATIONAL HELPLINE: EFFECTS ON FAMILY CAREGIVERS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S217-S217
Author(s):  
Nancy Hodgson ◽  
Darina V Petrovsky ◽  
Beth Kallmyer ◽  
Joanne Pike ◽  
Sam Fazio
Keyword(s):  
Family Caregivers ◽  
Social Isolation ◽  
Emotional Distress ◽  
Emotional Support ◽  
Support Services ◽  
Master's Level ◽  
Limited Access ◽  
Core Content ◽  
Free Resource ◽  
The Mean

Abstract Family caregivers of persons with dementia experience high rates of social isolation and limited access to emotional support. The Alzheimer’s Association National Helpline is an accessible and free resource available 24 hours/day, 365 days/year in which master’s-level clinicians offer confidential emotional support and information on resources in the form of “action steps.” We evaluated the preliminary effectiveness of the Helpline for family caregivers of persons with dementia. Between January and October 2018, 185 non-crisis, caregiver calls to the Helpline were assessed at the time of call, one week, and 1 month post-call for effects on caregivers’ self-reported emotional distress, ability to manage anxiety, implement plan of action and access of services. The mean age of callers was 56 years; 22% were non white; 79% were women. Callers reported significantly (p <.05) improved caregiver emotional distress (27% net improvement) and ability to manage anxiety (29% net improvement). At one week, 70% of callers had put action steps in place, and by 1 month 80% of callers had put action steps into place. Over 80% of callers reported action steps were “helpful” and 65% reported that they had accessed additional dementia support services. This study suggests that support provided via the Alzheimer’s Association National Helpline is effective at reducing caregiver emotional distress and improving the ability of callers to “take action”. The results provide support for a larger study investigating caller characteristics and core content of the calls that provided sustained benefit to standardize the key elements of Helpline calls.

scholarly journals Burden in family caregivers of the elderly: prevalence and association with characteristics of the elderly and the caregivers

2013 ◽  
Vol 47 (5) ◽  
pp. 1129-1136 ◽  
Author(s):  
Lara de Sa Neves Loureiro ◽  
Maria das Gracas Melo Fernandes ◽  
Sueli Marques ◽  
Maria Miriam Lima da Nobrega ◽  
Rosalina A. Partezani Rodrigues
Keyword(s):  
Data Collection ◽  
Family Caregivers ◽  
Emotional Support ◽  
The Elderly ◽  
Demographic Characteristics ◽  
Spousal Caregivers ◽  
Cross Sectional ◽  
High Prevalence ◽  
The Mean ◽  
The City

A cross-sectional, epidemiological study aimed to estimate the prevalence of burden among family caregivers of impaired elderly residents in the city of João Pessoa, and to identify associations between the mean burden and social and demographic characteristics of the elderly and the caregivers. A total number of 240 elderly residents in a previously drawn census tract participated in this research. The sample was composed of 52 elderly and their caregivers. For data collection, a questionnaire was applied with questions on social and demographic characteristics of elderly and caregivers, and the Burden Interview Scale was used. Results showed a high prevalence of burden among caregivers (84.6%), in which a statistically significant association was found with the following characteristics: retired elderly, elderly as head of family, spousal caregivers, and caregivers with less education. The findings of this study may contribute to the development of activities focused on formal and emotional support for the caregivers.

scholarly journals IMPCAT study: measuring the impact of caregiving on families and healthcare professionals of children and adults living with mucopolysaccharidoses in Ireland

2021 ◽  
Vol 2 ◽  
pp. 263300402110207
Author(s):  
Suja Somanadhan ◽  
Hannah Bristow ◽  
Ellen Crushell ◽  
Gregory Pastores ◽  
Emma Nicholson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Coping Strategies ◽  
Family Caregivers ◽  
Support Services ◽  
Parental Stress ◽  
Healthcare Professionals ◽  
Healthcare Providers ◽  
The Mean ◽  
The Impact

Introduction: Disease trajectories are often uncertain among individuals living with mucopolysaccharidoses (MPS) due to the progressive nature of the illness and the goal of care. This study investigated the impact on caregivers and care providers of children and adults living with MPS. Methods: The study used a cross-sectional design and a convenience sampling strategy which involved two sequential study components. The stage 1 quantitative component included three validated scales: the abbreviated World Health Organization Quality of Life (WHOQOL-BREF), the Paediatric Inventory for Parents (PIP) and the 14-item Resilience Scale (RS-14). The stage 2 qualitative component consisted of two focus groups with healthcare professionals (HCPs) ( n = 9) working with children and adults living with MPS across three clinical sites in Ireland. Data were collected between November 2017 and July 2019. Results: A total of 31 parents identified as caregivers participated in this study. The mean quality of life (QoL) score was 93.81, indicating a significantly high QoL. The PIP frequency total mean was 102.74 and difficulty mean 104.94. The mean score for the RS-14 was notably high, 81.42 out of a maximum of 98. The majority of the results showed high levels of concern for the future, with just under 50% finding themselves very often feeling scared that their child’s condition will deteriorate or that their child will die and finding these thoughts very difficult. The healthcare professionals’ (HCPs) perceptions were focused on the complexity of MPS, coping strategies, managing expectations and support services. Conclusion: The overall findings of the study reinforced the need for sustained and enhanced psychological support to ensure both families of children and adults living with MPS and the HCPs are supported in the continued delivery of quality patient care and outcomes. Subjective and objective measures from family caregivers and HCPs yield results that can decrease stress and improve psychological support. Plain language summary Impact of caregiving on families and healthcare professionals of children and adults living with mucopolysaccharidoses in Ireland Mucopolysaccharidoses (MPS) is a group of one of the many rare inherited metabolic disorders that come under category three of life-limiting conditions. Children born with this genetic condition show no change at birth, but effects start to show in subsequent years as it is a progressive disease. The severity of the condition varies according to the specific type, ranging from very mild symptoms to, in most cases, multisystemic, restricted growth or mental and physical disabilities. Recent developments in treatments for some forms of MPS have dramatically changed the quality of life (QoL) for patients. Other forms of treatment are currently under investigation and development. This study aimed to provide a detailed and reliable evidence base on the impact of caregiving for patients living with MPS on family caregivers and healthcare providers. Paper questionnaires were completed by the family caregivers of children and adults living with MPS. These three questionnaires focused on measuring QoL, parental stress and anxiety, and resilience among these families. Two focus group interviews were carried out with healthcare professionals working with children and adults living with MPS across three clinical sites in Ireland. A total of 31 parents completed the questionnaires in this study, indicating a significantly high QoL and notably high resilience. The majority of the parental stress results were related to concern for the future, with just half of the families finding themselves very often scared that their child’s condition will deteriorate or that their child will die and find these thoughts very difficult. The healthcare providers also spoke about the complexity of MPS, coping strategies, managing expectations and support services for the families of children and adults living with MPS. This study provided evidence for clinicians and policymakers to improve the availability of appropriate healthcare provisions for people living with MPS and their families.

scholarly journals Family caregiver emotional distress in advanced cancer: the DME-C scale psychometric properties

2020 ◽  
pp. bmjspcare-2020-002608
Author(s):  
Joaquín T Limonero ◽  
Jorge Maté-Méndez ◽  
María José Gómez-Romero ◽  
Dolors Mateo-Ortega ◽  
Jesús González-Barboteo ◽  
...  
Keyword(s):  
Psychometric Properties ◽  
End Of Life ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Emotional Distress ◽  
Family Caregiver ◽  
Screening Tools ◽  
Anxiety And Depression ◽  
The Family ◽  
End Stage

BackgroundFamily caregivers of patients with advanced illness at end of life often report high levels of emotional distress. To address this emotional distress is necessary to have adequate and reliable screening tools.AimThis study analyses the psychometric properties and clinical utility of the Family Caregiver Emotional Detection Scale for caregivers of patients with end-stage cancer (DME-C, Spanish acronym) who are receiving palliative care (PC).DesignMulticentre, cross-sectional study.Settings/participantsFamily caregivers of patients with advanced cancer at end of life receiving palliative treatment were interviewed to explore their emotional distress through the DME-C scale and other instruments measuring anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), distress thermometer (DT) and overload (B), as well as a clinical psychological assessment (CPA).Results138 family caregivers, 85 (61.6%) female and 53 (38.4%) male, with an average age of 59.69±13.3 participated in the study. The reliability of the scale, as measured by Cronbach’s alpha, was 0.76, and its stability over time was 0.734. Positive, significant correlations were found between the DME-C and the scores for anxiety and depression registered on the HADS scale, as well as with the total result of this latter scale and the results for B, the DT and the CPA. A statistical analysis of the receiver-operating characteristic curves showed that the scale has a sensitivity and specificity of 75%, and that the cut-off point for the detection of emotional distress was a score ≥11. Fifty-four per cent of the caregivers displayed emotional distress according to this scale.ConclusionsThe DME-C displays good psychometric properties. It is simple, short, reliable and easy to administer. We believe that the instrument is useful for the detection of emotional distress in the family caregivers of hospitalised patients suffering from end-stage illnesses and receiving PC.

scholarly journals Impact of Social Isolation on People with Dementia and Their Family Caregivers

2021 ◽  
pp. 1-11
Author(s):  
Lílian Viana dos Santos Azevedo ◽  
Ismael Luis Calandri ◽  
Andrea Slachevsky ◽  
Héctor Gastón Graviotto ◽  
Maria Carolina Santos Vieira ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Social Isolation ◽  
Clinical Symptoms ◽  
Memory Function ◽  
South American ◽  
Severe Dementia ◽  
Dementia Caregivers ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Severity Of Dementia

Background: People with dementia and their family caregivers may face a great burden through social isolation due to the COVID-19 pandemic, which can be manifested as various behavioral and clinical symptoms. Objective: To investigate the impacts of social isolation due to the COVID-19 pandemic on individuals with dementia and their family caregivers. Methods: Two semi-structured questionnaires were applied via telephone to family caregivers of people diagnosed with dementia in three cities in Argentina, Brazil, and Chile, in order to assess clinical and behavioral changes in people with dementia and in their caregivers. Results: In general, 321 interviews were conducted. A significant decline in memory function has been reported among 53.0%of people with dementia. In addition, 31.2%of individuals with dementia felt sadder and 37.4%had increased anxiety symptoms. These symptoms of anxiety were greater in individuals with mild to moderate dementia, while symptoms of agitation were greater in individuals with severe dementia. Moreover, compulsive-obsessive behavior, hallucinations, increased forgetfulness, altered appetite, and increased difficulty in activities of daily living were reported more frequently among individuals with moderate to severe dementia. Caregivers reported feeling more tired and overwhelmed during this period and these symptoms were also influenced by the severity of dementia. Conclusion: Social isolation during the COVID-19 pandemic triggered a series of negative behavioral repercussions, both for people with dementia and for their family caregivers in these three South American countries.

Extreme Social Isolation, Use of Community-Based Senior Support Services, and Mortality Among African American Elderly Women

1997 ◽  
Vol 25 (5) ◽  
pp. 721-732 ◽  
Author(s):  
Thomas A. LaVeist ◽  
Robert M. Sellers ◽  
Karin A. Elliott Brown ◽  
Kim J. Nickerson
Keyword(s):  
African American ◽  
Social Isolation ◽  
Support Services ◽  
Elderly Women ◽  
Community Based

scholarly journals Examining Dementia Family Caregivers’ Forgone Care for General Practitioners and Medical Specialists during a COVID-19 Lockdown

2021 ◽  
Vol 18 (7) ◽  
pp. 3688
Author(s):  
Perla Werner ◽  
Aviad Tur-Sinai ◽  
Hanan AboJabel
Keyword(s):  
Family Caregivers ◽  
Emotional Support ◽  
Online Survey ◽  
Behavioral Model ◽  
Cross Sectional Study ◽  
Enabling Factors ◽  
Dementia Caregivers ◽  
Predisposing Factor ◽  
Cross Sectional ◽  
Medical Specialists

The present study aimed to assess dementia caregivers’ reports of the prevalence and correlates of forgone care regarding visits to a general practitioner (GP) and to a specialist during the COVID-19 lockdown in Israel, using Andersen’s Behavioral Model of Healthcare Utilization. A cross-sectional study using an online survey was conducted with 73 Israeli family caregivers of persons with dementia residing in the community (81% Jews, 86% female, mean age = 54). Overall, one out of two participants reported having to delay seeking needed help from a GP or a specialist for themselves, as well as for their relatives with dementia, during the COVID-19 lockdown period. Among the predisposing factor, education was associated with caregivers’ reports regarding forgone care for themselves as well as for their loved ones. Living with the care-receiver and income level were the enabling factors associated with forgone care for caregivers. Finally, feelings of burden were associated with caregivers’ forgone care and feelings of loneliness and perceptions of the care-receiver’s cognitive functioning were associated with care-receivers’ forgone care. Our findings show that it is essential that this population receive appropriate practical and emotional support at times of distress and crisis to enable them to continue with their caregiving role.

Evaluation of Lebanon’s National Helpline for Emotional Support and Suicide Prevention: Reduction of Emotional Distress among Callers

Intervention ◽  
2021 ◽  
Vol 19 (2) ◽  
pp. 197
Author(s):  
PiaA Zeinoun ◽  
FarahE Yehia ◽  
LilaZ Khederlarian ◽  
SereneF Yordi ◽  
MiaM Atoui ◽  
...  
Keyword(s):  
Suicide Prevention ◽  
Emotional Distress ◽  
Emotional Support

Addressing food poverty in the UK

2017 ◽  
Author(s):  
Sarah Greenwood
Keyword(s):  
Social Isolation ◽  
Social Relations ◽  
Emotional Support ◽  
Third Sector ◽  
Community Life ◽  
The Government ◽  
The Uk

The foodbank network The Trussell Trust does not only give emergency food supplies, but also offers emotional support and a growing range of practical projects via the More Than Food programme to help tackle poverty-related issues. The mission is to bring communities together to end hunger and poverty in the UK by providing compassionate, practical help while challenging injustice. This chapter details the different programmes The Trussell Trust have devised and thereby examines some external challenges the London network faces. The chapter concludes that poverty and hunger are often amplified through social isolation. It suggests that more work needs to be done in order to increase collaboration across sectors, and specifically between the government, third sector, and businesses. There is increased need for more community life, and the fostering of social relations appears ever greater.

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