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Family carers

Supporting family carers of people with dementia: A discrete choice experiment of public preferences

Background: Community-based care for people with dementia is mainly provided by family carers, many of whom experience decreased mental, physical and financial well-being due to their caring role. Many countries are now implementing ageing-in-place policies that have increased pressure on family carers as care-work is redistributed from residential to community-based settings. Family caring responsibilities for people with dementia are made even more complicated by the economic, social and cultural expectations that underpin existing provision.

Tue, 06/28/2022 - 16:39

Relationship-centred CogniCare: an academic–digital–dementia care experts interface

Purpose: This paper aims to reports on an academic–industry service development innovation to advance the symptom monitor and track feature within the CogniCare app to support family carers of people living with dementia. Expert opinion from dementia care professionals identified key monitoring strategies for enhanced carer competence and confidence in the early identification of relevant symptoms that would help facilitate meaningful hospital/social care consultations.

Sat, 06/18/2022 - 12:55

The lived experience of family members who care for children with cancer: An interpretative phenomenological approach

Objectives: This study aimed to explore the lived experiences of family carers in the care of children with cancer. A phenomenological hermeneutic approach was conducted, informed by the philosophy of Martin Heidegger. Methods: Fourteen interviews were conducted with family members: mothers (n = 9), grandmothers and fathers (n = 5). Fourteen family carers were voluntarily enrolled from a public children's oncology department in Bethlehem in the Occupied Palestinian Territories. Interpretative Phenomenological Analysis (IPA) was used to analyze the data.

Tue, 06/07/2022 - 18:53

Impact of the covid-19 pandemic on family carers of older people living with dementia in Italy and Hungary

Background: The COVID-19 pandemic has had a major effect on both older people with dementia and families caring for them. Methods: This paper presents the results of an online survey carried out among Italian and Hungarian family carers of people with dementia during the first pandemic wave (May–July 2020, n = 370). The research questions were the following: (1) How has the pandemic changed the lives of family carers? (2) How did government restriction measures change the availability of care-related help? (3) What other changes did families experience?

Sun, 06/05/2022 - 17:40

'I want to make myself useful': the value of nature-based adult day services in urban areas for people with dementia and their family carers

Background: Nature-based adult day services (ADSs) in urban areas are relatively new services in the Netherlands. Since knowledge about these services is still scarce, this study aimed to elucidate their value for people with dementia and their family carers in terms of health and wellbeing. Methods: We interviewed 39 people with dementia attending nature-based ADSs in urban areas and their family carers, and 17 providers of these services.

Fri, 06/03/2022 - 17:59

Factors predicting quality of life in family carers of people with dementia: The role of psychological inflexibility

Aims: The current study aimed to investigate the impact of carer-related modifiable factors (i.e., knowledge about dementia, psychological inflexibility, self-compassion and hours of support from other family members) on quality of life (QoL) among family carers. Methods: A multiple regression analysis was conducted with QoL as a dependent variable. All factors were entered into the model simultaneously as independent variables. Ninety-one family carers with a mean age of 69.5 years old were assessed.

Sun, 05/15/2022 - 16:29

Establishing priorities for psychosocial supports and services among family carers of people with dementia in Ireland

Introduction: Many family carers, particularly those caring for people with dementia, report significant personal and social challenges associated with caring. The aim of this article is to identify the range of challenges experienced by family carers of people with dementia and to ascertain their preferences for various supports and services that address those challenges. Method: Three modified nominal group technique (NGT) focus groups were conducted with family carers of people with dementia.

Tue, 02/22/2022 - 15:15

Social welfare needs of bereaved Australian carers: Implications of insights from palliative care and welfare workers

An individual and psychological emphasis has influenced practice and research on bereavement following informal care provision in the context of life-limiting illness. Consideration of the potential for bereavement to be shaped by intersecting social and structural inequities is needed; and should include an understanding of interactions with government institutions and social policy.

Fri, 07/23/2021 - 15:03

Family carers managing personal budgets for adults with learning disabilities or autism

Accessible summary Direct payments can help people with learning disabilities or autism to have good support. Often, family carers manage the direct payments for people who would find this very difficult. We asked family carers who managed direct payments to tell us why they decided to do this and what their experiences were. Family carers told us they found managing direct payments difficult and stressful at first, but this got easier over time. They also said that direct payments helped their family members to have more person-centred support.

Tue, 03/23/2021 - 11:00

Family carer support in home and hospital: a cross-sectional survey of specialised palliative care

Objectives To evaluate: (1) to what extent family carers of people supported by specialised palliative care services felt they had been provided with information, support and aftercare and (2) how this varied by type of palliative care service, length of enrolment and characteristics of deceased. Methods A cross-sectional postal survey was conducted using a structured questionnaire with nine items on information, support and aftercare provided by specialised palliative care services to family carers.

Tue, 03/23/2021 - 10:56

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