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Supporting family carers of children and adults with intellectual disability

Summary: The extra strains experienced by families who care for a relative with intellectual disabilities are well documented. The provision of overnight (respite) breaks or supports in the home are common ways of supporting family carers. Often demand exceeds supply. Using data from a national register in Ireland, child and adults who received overnight breaks and in-home support were identified along with the characteristics that distinguished them from families that did not have these services.

Thu, 01/14/2021 - 09:39

An exploration of care‐burden experienced by older caregivers of adults with intellectual disabilities in Ireland

Accessible summary: ·Older family carers of an adult with an Intellectual disability were asked about how they sometimes feel when supporting another person.·Most carers felt a little stressed or strained.·Older carers felt less stressed than younger carers.·The value of supports that help carers was identified.

Thu, 01/23/2020 - 12:18

146 The Lived Experience of Carer Resilience Told by Carer Advocates

Background Established in 2013 this network of volunteer family carers is a national advocacy group that presents a vital opportunity for carers to use their voice to raise awareness of issues affecting families living with dementia in Ireland. The network is facilitated by a dementia specific service provider. These carer advocates wish to present on a piece of qualitative research they have recently conducted on the topic of carer resilience at the advanced stages of caring for a loved one with dementia.

Wed, 12/18/2019 - 14:58

77 Behind the Scenes: the Burden Experienced by Informal Carers of People with Dementia

Background Informal care is undoubtedly a vital to dementia care in Ireland. To date, little research has been carried out exploring the burden experienced by informal carers of people with mild to moderate dementia. The main aim of this quantitative study is to explore the burden experienced by caregivers, relative to dementia severity. The secondary aim is to identify risk factors which may be contributing to this perceived burden.

Wed, 12/18/2019 - 14:43

330 Insights into Dementia- An Integrated Care Approach to Family Support

Background The increase in the number of people with dementia in the coming years will be significant and could be as high as 132,000 people by 2041. There is a growing need for enhanced post diagnostic supports for patients living with dementia and their families.

Wed, 12/18/2019 - 14:29

333 A Transnational Effectiveness-Implementation Study of the Family Carer Decision Support Intervention to Improve End of Life Care in Long-Term Care

Background The Family Carer Decision Support (FCDS) intervention has been designed to inform family carers about end of life care options available to a person living with advanced dementia. The FCDS intervention demonstrated a statistically significant impact in reducing family carer decision uncertainty on establishing goals of care at the end of life and, improved family carer satisfaction on quality of care in a study conducted in the United Kingdom.

Wed, 12/18/2019 - 13:08

59 Male Family Carers' Perceptions of Formal Support Services, a Meta-ethnography

Background Family carers provide thousands of hours of unpaid work every year, a third of whom are men, however this group are generally under-represented in research. Comparative studies have shown that male carers experience their caring role differently to female counterparts. Social concepts related to masculinity can help to explain help-seeking behaviours of male carers, as well as their attitudes to accessing outside support. Compared to women carers, men have lower rates of uptake of formal support services.

Wed, 12/18/2019 - 12:59

266User-Centered Design of a Mindfulness Application to Support Older Informal Carers

Background: Mindfulness-based interventions (MBIs) have grown in popularity in recent years and have been shown to reduce stress and increase quality of life among older informal carers. A digital application delivering MBIs has been iteratively designed based on user-centered designed principles and aims to support older informal carers to manage stress and sleep. We describe a qualitative study with older informal carers and the resulting digital application. Methods: A qualitative study with 20 older adults took place over a 2-year period.

Wed, 06/05/2019 - 15:39

296Exploring Personhood in Formal Care Provision in Ireland: Perspectives from Family Carers of People with Dementia

Background: Personhood in dementia is about treating people with dementia with dignity and respect and in a manner that supports their sense of self. It is a key element of person-centered care and a guiding principle in dementia care policy in Ireland. However, there is uncertainty around the concept of personhood and in particular how it is operationalised within formal care provision. This research examines the experiences and perceptions of family carers of people with dementia in relation to personhood and formal care provision.

Wed, 05/29/2019 - 11:02

Adaptation and resilience in families of individuals with Down syndrome living in Ireland

Accessible Summary: This study describes an Irish‐based study that examined how families of children with Down syndrome living in Ireland adapt to their child’s diagnosis. We found that good family communication and family hardiness have a positive affect on how families adapt. Families of children with Down syndrome have the potential to lead full and productive lives and positively adapt to their child’s diagnosis. Abstract: Background: Down syndrome is a genetic condition that affects people of all races, nationalities and socioeconomic status.

Fri, 05/24/2019 - 10:23

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