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Engaging the person with young-onset dementia: working in partnership to support meaningful activity

Imelda cared for her husband through his journey with young-onset Alzheimer's disease. He was diagnosed at the age of 64 and died aged 68. This article describes many of the challenges that she faced in ensuring that her husband continued to experience purpose and meaning even as the ravages of the disease robbed him of his skills. She focuses on the need for the caregiver and the care professional to respond to the unique way in which the person being cared for engages with his or her world and to co-develop activities that are meaningful to them.

Fri, 09/06/2019 - 12:30

Predictors of burden in Australian mental health caregivers: a cross-sectional survey

Background: The shift towards providing mental healthcare in the community has resulted in caregivers becoming more involved in the delivery of these services.

Tue, 07/02/2019 - 14:50

Using a six-step co-design model to develop and test a peer-led web-based resource (PLWR) to support informal carers of cancer patients

Objective: To co-design and test the acceptability of a peer-led web-based resource (PLWR) for cancer carers to provide practical and emotional advice on common issues. Methods: A six-step co-design model informed PLWR development. Content was developed through three cancer carer workshops and monthly meetings with an expert advisory team (n = 12). User-testing was conducted via web-based survey and telephone interview. Descriptive statistics and thematic analysis were utilised.

Mon, 07/01/2019 - 14:27

Systematic Review of the Relationship Between Autism Stigma and Informal Caregiver Mental Health

Families play a crucial role in determining the mental health of the autistic individual(s) they are caring for. However, the stigma associated with autism can impair caregiver health. To investigate this, empirical evidence pertaining to stigma's impact on informal caregivers' mental health was systematically reviewed. All twelve included studies (n = 1442 informal caregivers) consistently reported the impact of autism related stigma upon caregiver mental health to be significant, meaningful and complex.

Wed, 06/26/2019 - 15:00

Love and incomprehensibility: The hermeneutic labour of caring for and understanding a loved one with psychosis

Informal carers are increasingly involved in supporting people with severe and enduring mental health problems, and carers' perceptions impact the wellbeing of both parties. However, there is little research on how carers actually make sense of what their loved one is experiencing. Ten carers were interviewed about how they understood a loved one's psychosis. Data were analysed using a hermeneutic-phenomenological approach. Three themes described the carers' effortful quest to understand their loved one's experiences while maintaining their relational bonds.

Tue, 06/25/2019 - 11:56

Caring for the person with cancer and the role of digital technology in supporting carers

Purpose: Informal carers may experience a range of unmet needs during the caring period and, at times, lack support to adequately manage care of the person with cancer and balance personal family and work commitments. The aim of this study was to understand the needs of informal carers of people with cancer and how digital technology may be used to address carers' needs.; Methods: Focus groups and semi-structured interviews were conducted with 45 carers.

Tue, 06/18/2019 - 16:01

What do family caregivers know about palliative care? Results from a national survey

Objective: Despite their key role in caring for individuals with serious, chronic illness, there have been no national studies examining family caregiver awareness and perceptions of palliative care. Hence, our objectives were to ascertain level of knowledge of palliative care among U.S.

Tue, 06/11/2019 - 11:42

Crossing, Trudging and Settling: A phenomenological inquiry into lived experience of Asian family caregivers of older persons with dementia

Throughout Asian societies, family members often adopt the role of caregiving for older persons, providing essential care for loved ones with dementia. To date, there has been limited insight into the lived experience and meaning ascribed to the journey of these caregivers. This descriptive phenomenological study aims to explore the lived experience of Asian family caregivers of persons with dementia. Semi-structured face-to-face interviews were conducted with 16 family members caring for aged persons with dementia.

Mon, 06/10/2019 - 14:34

The role of informal carers in the diagnostic process of heart failure: a secondary qualitative analysis

Background: Heart failure (HF) is a common clinical syndrome, particularly in older people, and symptoms can develop gradually. The aim of this study was to explore the role of informal carers in the HF diagnostic process.; Methods: Secondary analysis of qualitative interviews with 16 participants with a new diagnosis of HF. Original interviews were conducted in the participant's home, with carers present in some cases.

Mon, 06/10/2019 - 11:39

A systematic review of cancer caregiver interventions: Appraising the potential for implementation of evidence into practice

Objective Informal caregivers provide substantial support for people living with cancer. Previous systematic reviews report on the efficacy of cancer caregiver interventions but not their potential to be implemented. The aim of this systematic review was to explore the potential for cancer caregiver interventions to be implemented into practice. Methods We searched three electronic databases to identify cancer caregiver interventions on 5 January 2018.

Fri, 06/07/2019 - 16:59