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Impacts and Burden of Niemann pick Type-C: a patient and caregiver perspective

Background: Niemann-Pick disease type C (NPC) is a debilitating condition that impacts patients’ and caregivers’ quality of life (QOL) and reduces the patient’s life expectancy. Objectives: Since there is little qualitative research from the perspective of patients and family caregivers, this study explored the impact of NPC on patients’ and caregivers’ daily lives to understand the burden of disease.

Fri, 09/02/2022 - 22:10

Impact of COVID-19 restrictions on carers of persons with dementia in the UK: a qualitative study

Background: informal carers provide the majority of the support for persons with dementia living at home. Restrictions imposed due to COVID-19 have had a profound impact on the daily life of the entire population. This study provides insight into the impact of these restrictions on carers of people with dementia living at home. Methods: qualitative semi-structured interviews. PARTICIPANTS: purposive sample of carers who provide at least 10 hours of care a week for the person with dementia living at home.UK.

Fri, 09/02/2022 - 20:44

Future outlook of people living alone with early-stage dementia and their non-resident relatives and friends who support them

Background: Little is known about the experiences of people living alone with dementia in the community and their non-resident relatives and friends who support them. Objectives: In this paper, we explore their respective attitudes and approaches to the future, particularly regarding the future care and living arrangements of those living with dementia.

Fri, 09/02/2022 - 12:11

Exploration of caregiver experiences of conservatively managed end‐stage kidney disease to inform development of a psychosocial intervention: The acorn study protocol

Background: End‐stage kidney disease (ESKD) is an overwhelming illness that impacts not just patients, but also their informal carers. Patients who opt for conservative management rather than dialysis experience difficult symptoms and the psychosocial consequences of their condition.

Thu, 09/01/2022 - 10:26

The experiences of those affected by parental young onset dementia: A qualitative systematic literature review

Objectives: To develop understanding of the lived experiences of children of people living with young onset dementia, defined as individuals both under and over the age of 18 years whose parent was diagnosed with dementia before the age of 65 years. Method: A critical appraisal and thematic synthesis of the available qualitative literature regarding the lived experience of individuals whose parent has a diagnosis of young onset dementia. A three-stage approach for conducing thematic synthesis was followed.

Thu, 09/01/2022 - 10:12

Support system diversity among family caregivers of stroke survivors: a qualitative study exploring Asian perspectives

Background: Caregiving is a global phenomenon which is bound to increase in tandem with the aging population worldwide. Stroke is a condition common in older people that requires complex caregiving necessitating provision of adequate support to the caregivers. Past literature consists of limited accounts of types and organization of support arrangements needed by different caregivers. Objectives: We aimed to describe the support system of caregivers of stroke survivors in Singapore, highlighting differences across the different caregiver identities (i.e.

Tue, 08/30/2022 - 18:01

Family Caregiver Experience of Resistance to Care: Occurrence Patterns, Context, and Impact on Caregiver

Background: Although the extant literature identifies resistance to care (RTC) as one of the most frequently reported and impactful caregiver (CG) stressors, typical studies that rely on quantitative measures of RTC do not fully explain how and why RTC negatively influences CGs’ well-being. As such, it is difficult to develop specific intervention strategies to support CGs in dealing with RTC.

Tue, 08/23/2022 - 17:06

Balancing care demands and personal needs: A typology on the reconciliation of informal dementia care with personal life based on narrative interviews

Background: Finding a balance between care and personal needs is often challenging for individuals caring for a person with dementia. Objectives: The present study aimed to understand how primary and secondary family carers of people with dementia perceive the reconciliation of informal care and their personal life throughout the course of care. Methods: Narrative interviews with 14 carers (n=10 female, mean age: 48.79) from seven care networks were conducted. The interviews were analysed using the documentary method.

Thu, 08/18/2022 - 12:40

A qualitative exploration of how gender and relationship shape family caregivers’ experiences across the Alzheimer’s disease trajectory

Background: Caregiving experiences are not static. They change across the disease trajectory and care continuum. However, it is not clear how caregiver gender or relationship type is related to evolving caregiver experiences over time. Objectives: This qualitative study informed by constructivist grounded theory and framework analysis explored the experiences over time of men and women who were adult children and spousal caregivers to persons with Alzheimer’s disease.

Wed, 08/17/2022 - 18:21

Family carers’ narratives of the financial consequences of young onset dementia

Background: Individuals with young onset dementia and their families face unique challenges, such as disruptions to their life cycle and relationships and a dearth of appropriate supports. Financial consequences have also been noted in the literature yet have not been explored in-depth. Objective: The purpose of this research was to qualitatively explore carers’ experiences of financial consequences resulting from the young onset dementia of a family member and how these consequences may be managed.

Wed, 08/17/2022 - 16:26

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