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Changes in caregiver personal support networks: Gender differences and effects on health (cuidar-se study)

Background: Technological changes have led to important advances in medical diagnoses and treat-ments that prolong the informal care process. Support from the personal network of informal caregivers is an undervalued resource and the changes that have occurred over time are unknown.

Wed, 08/24/2022 - 00:46

Communication in home care: Understanding the lived experiences of formal caregivers communicating with persons living with dementia

Background: Little is known about formal caregivers’ lived experiences communicating with persons living with dementia (PLWD) who live in their own homes. Most information comes from research conducted in long‐term care settings or home care settings involving family care partners. Yet, there are expected needs and rising demands for formal caregivers to provide support within clients’ homes.

Wed, 08/24/2022 - 00:34

Ethical challenges in end-stage dementia: Perspectives of professionals and family care-givers

Background: In Israel, caring for people with end-stage dementia confined to home is mainly done by home care units, and in some cases by home hospice units, an alternative palliative-care service. Because life expectancy is relatively unknown, and the patient’s decision-making ability is poor, caring for this unique population raises ethical dilemmas regarding when to define the disease as having reached a terminal stage, as well as choosing between palliative and life-prolonging-oriented care.

Tue, 08/23/2022 - 23:18

Caregiver identity in care partners of persons living with mild cognitive impairment

Background: Research on caregiver identity in the context of memory impairment has focused primarily on more advanced stages of the cognitive impairment trajectory (e.g., dementia caregivers), failing to capture the complex dynamics of early caregiver identity development (e.g., MCI; mild cognitive impairment caregivers). Objectives: The aim of this study was to develop a nuanced understanding of how caregiver identity develops in family and friends of persons living with MCI.

Tue, 08/23/2022 - 18:26

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

Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005–2019

Background: Dementia palliative care is increasingly subject of research and practice improvement initiatives. Objectives: To assess any changes over time in the evaluation of quality of care and quality of dying with dementia by family caregivers. Methods: Combined analysis of eight studies with bereaved family caregivers’ evaluations 2005–2019.

Tue, 08/23/2022 - 15:00

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

The emotional experience of caregiving in dementia: Feelings of guilt and ambivalence underlying narratives of family caregivers

Objective: The aim of this study was to explore narrative domains of family caregivers’ emotional experiences, beyond intentional and explicitly reported contents, and to examine their associations with subjects defining characteristics, such as gender, kinship, duration of caregiving, and burden levels. Methods: The study participants were 17 Italian family caregivers (88.23% women) with a mean age of 59.14 years (SD = 7.76), who provided their loved ones affected by dementia with in-home care.

Wed, 08/10/2022 - 20:57

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