scholarly journals "Sidelined": Family Caregiver's Experience of the  Emergency Department: Insights from Family Caregivers of People with Alzheimer's Disease

2021 ◽  
Author(s):  
◽  
Sandra Roberta Ridley
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Lived Experience ◽  
Family Caregivers ◽  
Healthcare Professionals ◽  
Care Facility ◽  
Structured Interviews ◽  
Presenting Symptoms ◽  
Information Giving ◽  
Inpatient Settings

<p>Older patients with a cognitive deficit, such as seen in Alzheimer's Disease (AD), have not been extensively researched in ED. Often patients with AD are accompanied by a familiar person such as a family caregiver when they present to an acute care facility. Literature has shown that family caregivers' have reported dissatisfaction with interaction with healthcare professionals in inpatient settings. There is a paucity of research on the experiences family caregivers have in ED. This study explored the experiences of family caregivers of people with Alzheimer's Disease in the ED of a regional hospital in New Zealand. A Hermeneutic phenomenology method was used to bring meaning to the lived experience of family caregivers in the ED. Ricouers Interpretation theory was used to analyse and interpret the data. Six family caregivers were interviewed, using semi-structured interviews, to explore and give meaning to their experience. Findings revealed family caregivers were 'sidelined'; felt invisible, ignored and abandoned by the healthcare professionals in ED. There appeared to be little understanding about dementia symptoms, or the needs of caregivers of people with AD. The experience was distressing for participants who felt they were not able to relay information about their loved one that was pertinent to their health and presenting symptoms. Health Professionals tended to speak directly to their loved ones and not with the participants. Consequently there was a risk of misinformation and poor communication driving treatment decisions for these patients. Participants reported poor information giving and family caregivers were left for long periods of time with no contact, and no support. Despite this, caregivers justified and excused the actions of healthcare professionals. They became passive recipients of process and procedures that were not adequately explained.</p>

scholarly journals "Sidelined": Family Caregiver's Experience of the  Emergency Department: Insights from Family Caregivers of People with Alzheimer's Disease

2021 ◽  
Author(s):  
◽  
Sandra Roberta Ridley
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Lived Experience ◽  
Family Caregivers ◽  
Healthcare Professionals ◽  
Care Facility ◽  
Structured Interviews ◽  
Presenting Symptoms ◽  
Information Giving ◽  
Inpatient Settings

<p>Older patients with a cognitive deficit, such as seen in Alzheimer's Disease (AD), have not been extensively researched in ED. Often patients with AD are accompanied by a familiar person such as a family caregiver when they present to an acute care facility. Literature has shown that family caregivers' have reported dissatisfaction with interaction with healthcare professionals in inpatient settings. There is a paucity of research on the experiences family caregivers have in ED. This study explored the experiences of family caregivers of people with Alzheimer's Disease in the ED of a regional hospital in New Zealand. A Hermeneutic phenomenology method was used to bring meaning to the lived experience of family caregivers in the ED. Ricouers Interpretation theory was used to analyse and interpret the data. Six family caregivers were interviewed, using semi-structured interviews, to explore and give meaning to their experience. Findings revealed family caregivers were 'sidelined'; felt invisible, ignored and abandoned by the healthcare professionals in ED. There appeared to be little understanding about dementia symptoms, or the needs of caregivers of people with AD. The experience was distressing for participants who felt they were not able to relay information about their loved one that was pertinent to their health and presenting symptoms. Health Professionals tended to speak directly to their loved ones and not with the participants. Consequently there was a risk of misinformation and poor communication driving treatment decisions for these patients. Participants reported poor information giving and family caregivers were left for long periods of time with no contact, and no support. Despite this, caregivers justified and excused the actions of healthcare professionals. They became passive recipients of process and procedures that were not adequately explained.</p>

scholarly journals Alzheimer’s desease: challenges faced by family caregivers

2016 ◽  
Vol 19 (6) ◽  
pp. 1022-1029 ◽  
Author(s):  
Luciane Salete Kucmanski ◽  
◽  
Leoni Zenevicz ◽  
Daniela Savi Geremia ◽  
Valeria Silvana Faganello Madureira ◽  
...  
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Family Caregivers ◽  
Qualitative Approach ◽  
Health Policies ◽  
Structured Interviews ◽  
Daily Lives ◽  
Psychological Suffering ◽  
The Family ◽  
The City

Abstract Gaps identified in Brazilian health policies and the need to develop and implement strategies for the empowerment and monitoring of family caregivers support the development of care proposals aimed at the family. The present study aimed to analyze the challenges faced by family members providing day to day care of patients with Alzheimer's disease in the city of Chapecó, Santa Catarina. The method employed was the qualitative approach through semi-structured interviews. The speeches were grouped, categorized and analyzed using the hermeneutic method. The results showed that during the period of Alzheimer's disease, caregivers experience a range of situations, including: a need to learn about the disease; dealing with guilt; and handling situations of pain, addiction and physical and psychological suffering. In conclusion the study described the challenges of the daily lives of these families, explaining the importance of and highlighting the need to adopt tools and strategies that provide physical, emotional, psychological and financial support to family caregivers of patients with Alzheimer's disease.

scholarly journals A Massive Open Online Course to Educate Healthcare Professionals & Caregivers About Alzheimer’s Disease

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 759-759
Author(s):  
Mary DiBartolo
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Family Caregivers ◽  
Healthcare Professionals ◽  
Physical Therapists ◽  
Adult Population ◽  
Online Course ◽  
Educational Strategy ◽  
Massive Open Online ◽  
Massive Open Online Course

Abstract Over 6 million Americans and 50 million persons worldwide are estimated to have Alzheimer’s disease (AD) as it remains the major cause of dementia in the older adult population. Both healthcare professionals and family caregivers struggle with the complexities of caring for individuals with this progressive neurological disease. To address the ongoing knowledge and care gap regarding Alzheimer’s disease among both healthcare professionals and family caregivers, a comprehensive massive open online course (MOOC) was developed and made available via the edX platform. MOOCs are open access and interactive courses offered via the web; they have emerged as a popular, self-paced mode of distance learning. Launched in 2020, the MOOC titled, Alzheimer’s Disease & Dementia Care, consists of five modules reviewing symptoms, diagnosis, medications, communication and care tips, as well as a module outlining special considerations when the person with AD is hospitalized. While this educational strategy targets healthcare professionals (such as nurses, physical therapists and related practitioners), it is also designed for lay caregivers or anyone who wants to learn more the disease. The course utilizes a variety of teaching modalities and is free. To date over 7000 persons have enrolled from over 140 countries. MOOCs remain an innovative and engaging educational strategy to reach a global audience. More importantly, they can serve as an another outlet to enhance both the competence and confidence of both healthcare professionals and family caregivers by sharing best practices in caring for those with Alzheimer’s disease and related dementias.

Sleep Behaviors in Persons With Alzheimer’s Disease: Associations With Caregiver Sleep and Affect

2020 ◽  
pp. 073346482097924
Author(s):  
Molly A. Mather ◽  
Holly B. Laws ◽  
Jasmine S. Dixon ◽  
Rebecca E. Ready ◽  
Anna M. Akerstedt
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Family Caregivers ◽  
Daily Diary ◽  
Poor Sleep ◽  
Multilevel Mediation ◽  
Diary Data ◽  
Retrospective Reports ◽  
Disease Associations ◽  
Sleep Behaviors

Poor sleep in persons with Alzheimer’s disease (AD) is a common stressor for family caregivers. Retrospective reports support associations between sleep disturbance in persons with AD and worse caregiver mood; however, prospective associations between sleep in persons with AD and caregiver outcomes have not been studied. The current study determined associations between affect and sleep of persons with AD and their caregivers using daily diary data. Multilevel mediation models indicated that sleep in persons with AD is linked to caregiver affect; furthermore, these associations are mediated by sleep characteristics in caregivers and affect in persons with AD. Daily fluctuations in sleep behaviors in persons with AD—rather than average values—were most strongly associated with caregiver outcomes. Interventions to improve sleep in persons with AD may decrease their negative affect and improve caregiver mood.

Longitudinal study of medication use in caregivers of people with Alzheimer’s disease – Kuopio ALSOVA study

Dementia ◽  
2018 ◽  
Vol 19 (5) ◽  
pp. 1573-1585
Author(s):  
Tarja Välimäki ◽  
Julia FM Gilmartin-Thomas ◽  
J Simon Bell ◽  
Tuomas Selander ◽  
Anne M Koivisto
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Family Caregivers ◽  
Social Insurance ◽  
Medication Use ◽  
Self Report ◽  
Rank Test ◽  
Kappa Statistics ◽  
Prescription Register ◽  
People With Dementia

Background The longitudinal pattern of medication use among family caregivers of people with dementia is not well understood, despite the potential for medication over- or under-use. Objectives To investigate caregiver medication use over a five-year follow-up using data obtained via self-report and from a national prescription register, and compare agreement between medication data obtained from the two sources. Methods Medication data for 222 family caregivers of people with Alzheimer’s disease were obtained via self-report and from the Finnish Social Insurance Institution. Generalised estimating equations, Kappa statistics and related samples Wilcoxon signed rank test were used to analyse medication use over time. Results The mean number of medications used by caregivers increased from 3.4 to 4.1 (self-reported current regular medications) and 2.4 to 2.8 (reimbursed prescription medications during the past 90 days) over five years (p < 0.001). Significantly, more medications were identified via self-report (mean 3.6, SD = 3.3) than the national prescription register (mean 2.6, SD = 2.4, Z= –12.300, p < 0.001). Agreement between the two data sources was good for cardiovascular medications and anti-hypertensives (Kappa = 0.883–0.967, p < 0.001) and medications for acid-related disorders (Kappa = 0.508–0.092, p < 0.001). Agreement was moderate for analgesics (Kappa = 0.281–0.477, p < 0.001) and psychotropics (Kappa = 0.281–0.562, p < 0.002). The proportion of caregivers using five or more medications increased from 27.5% to 44.6% (self-report), and 16.7% to 27.7% (register) (p < 0.001). Conclusion Caregivers use an increasing number of medications in the first five years of caring for persons with dementia, and self-report using a higher number of medications than data from the national prescription register suggest.

scholarly journals Social skills and well-being among family caregivers to patients with Alzheimer’s disease

2017 ◽  
Vol 44 (6) ◽  
pp. 159-161
Author(s):  
Flávia Araujo de Amorim ◽  
Mariana de Campos Pereira Giorgion ◽  
Orestes Vicente Forlenza
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Social Skills ◽  
Family Caregivers ◽  
Well Being

scholarly journals Ethnographic reflections on selfhood, embodiment and Alzheimer's disease

2004 ◽  
Vol 24 (6) ◽  
pp. 829-849 ◽  
Author(s):  
PIA C. KONTOS
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Care Facility ◽  
Ethnographic Study ◽  
The Body ◽  
Philosophical Tradition ◽  
Cultural Significance ◽  
Term Care ◽  
Long Term Care Facility ◽  
The World

Explicit in the current construction of Alzheimer's disease is the assumption that memory impairment caused by cognitive deficiencies leads to a steady loss of selfhood. The insistence that selfhood is the exclusive privilege of the sphere of cognition has its origins in the modern western philosophical tradition that separates mind from body, and positions the former as superior to the latter. This dichotomy suggests a fundamental passivity of the body, since it is primarily cognition that is held to be essential to selfhood. In contrast to the assumed erasure of selfhood in Alzheimer's disease, and challenging the philosophical underpinnings of this assumption, this paper presents the findings of an ethnographic study of selfhood in Alzheimer's disease in a Canadian long-term care facility. It argues and demonstrates that selfhood persists even with severe dementia, because it is an embodied dimension of human existence. Using a framework of embodiment that integrates the perspectives of Merleau-Ponty and Bourdieu, it is argued that selfhood is characterised by an observable coherence and capacity for improvisation, and sustained at a pre-reflective level by the primordial and socio-cultural significance of the body. The participants in this study interacted meaningfully with the world through their embodied way of ‘being-in-the-world’.

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