Accessing community dementia care services in Ireland: Emotional barriers for caregivers

Ryan, Linda

doi:10.1111/hsc.13342

Cited by 3 publications

(2 citation statements)

References 62 publications

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“…The fear of being stigmatised or diminished by other family members or the healthcare service staff delayed the process diagnosing the dementia, thus leading to isolation, not only for the family member with dementia but also for the family caregivers. In a recent study, Ryan (2021) presents several emotional barriers to utilising healthcare services among family caregivers in the Republic of Ireland. These include a fear of stigmatisation, feelings of embarrassment and a sense of obligation to provide care regardless of the family's ethnicity.…”

Section: Discussionmentioning

confidence: 99%

Family caregivers’ experiences of providing care for family members from minority ethnic groups living with dementia: A qualitative systematic review

Lillekroken

Halvorsrud

Gulestø

et al. 2021

Journal of Clinical Nursing

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Aims and objectives:To review the literature on family caregivers' experiences of providing care for a family member from an ethnic minority group living with dementia within the European context. Background: Due to labour migration during the late 1960s and early 1970s, many European countries are now encountering an increasing number of older people from diverse ethnic minority groups who have been diagnosed with dementia. Although family care is predominantly used as a care pathway among families with immigrant backgrounds, little is known about family caregivers' experiences of providing care for a family member with dementia. Design: A systematic review of qualitative literature. Methods: Eight databases (CINAHL, EMBASE, MEDLINE, PsychINFO, SCOPUS, Social Care Online, SocIndex and Epistemonikos) were searched for original, peerreviewed papers, published in English between 2010 and 2021. The literature review was conducted and reported in accordance with PRISMA 2020 checklist for reporting systematic reviews.Results: After identifying, screening and assessing articles for eligibility, 14 articles were critically appraised using the standardised assessment tool Mixed methods Appraisal Tool (MMAT, version 2018) and included in the review. The data synthesis process identified four themes across the qualitative studies: controversies and challenges; a lack of health literacy; barriers to seeking support from the healthcare or social services; and models of care.Conclusions: Most of the family caregivers highlighted the value of being able to care for a family member living with dementia. However, the findings also reveal that they experience controversies and challenges due to their lack of dementia health literacy and perceived barriers to seeking healthcare support. Relevance to clinical practice:The findings from the current review can inform healthcare and social services in relation to implementing models of care that facilitate and complement family caregivers' role in caring for family members living with dementia from minority ethnic groups.

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Section: Discussionmentioning

confidence: 99%

Family caregivers’ experiences of providing care for family members from minority ethnic groups living with dementia: A qualitative systematic review

Lillekroken

Halvorsrud

Gulestø

et al. 2021

Journal of Clinical Nursing

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“…A key factor affecting if and when people access support through Recovery Colleges was stigma; this was mainly discussed by stakeholders living with dementia. Experiences of shame and stigma have been associated with the avoidance of participating in activities and accessing health services (Aldridge et al., 2019 ; Ryan, 2021 ). These experiences may be compounded by attitudes, beliefs, and perceptions related to mental health difficulties and further impact course attendance.…”

Section: Discussionmentioning

confidence: 99%

Operationalising the Recovery College model with people living with dementia: a realist review

Handley,

Wheeler,

Duddy

et al. 2024

Aging & Mental Health

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Objectives Post-diagnostic support is a significant factor in facilitating personal recovery following a diagnosis of dementia, but access is often inconsistent and insufficient. Recovery Colleges offer peer-led, co-produced courses that can support people to have meaningful lives and have been adapted for use in the context of dementia. A realist review was conducted to understand the application and sustainability of Recovery College dementia courses. Method An iterative, five-step process combined literature published to 2023 with knowledge from stakeholders with lived and professional experience of dementia involved with Recovery College dementia courses (PROSPERO registration CRD42021293687). Results Thirty-five documents and discussions with 19 stakeholders were used to build the initial programme theory comprising of 24 context-mechanism-outcome configurations. Reoccurring factors included: attending to aspects of co-production and course delivery to ensure they promoted inclusion and were not compromised by organisational pressures; how stigma impacted access to course opportunities; and embedding personal recovery principles throughout course development to be relevant for people living with dementia and those who support them. Conclusion People struggling to reconcile their future alongside dementia need practical and emotional support to access and benefit from Recovery College dementia courses, ways to achieve this will be explored through a realist evaluation.

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A systematic review on inequalities in accessing and using community-based social care in dementia

Giebel

Hanna

Watson

et al. 2023

Int. Psychogeriatr.

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Objectives: To evaluate and synthesize the evidence base on barriers and facilitators to accessing and using community-based social care in dementia. Design: Mixed-methods systematic review. Setting: Community-based social care (such as day care, respite care, paid home care, and peer support groups). Participants: People living with dementia and unpaid carers. Measurements: Seven databases were searched in March 2022, including English and German evidence published from 2000 focusing on inequalities in community-based social care for dementia across the globe. Titles and abstracts were screened by two reviewers, with all full texts screened by two reviewers also. Study quality was assessed using QualSyst. Results: From 3,904 screened records, 39 papers were included. The majority of studies were qualitative, with 23 countries represented. Barriers and facilitators could be categorized into the following five categories/themes: situational, psychological, interpersonal, structural, and cultural. Barriers were notably more prominent than facilitators and were multifaceted, with many factors hindering or facilitating access to social care linked together. Conclusions: People with dementia and carers experience significant barriers in accessing care in the community, and a varied approach on multiple levels is required to address systemic and individual-level barriers to enable more equitable access to care for all.

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Accessing community dementia care services in Ireland: Emotional barriers for caregivers

Cited by 3 publications

References 62 publications

Family caregivers’ experiences of providing care for family members from minority ethnic groups living with dementia: A qualitative systematic review

Family caregivers’ experiences of providing care for family members from minority ethnic groups living with dementia: A qualitative systematic review

Operationalising the Recovery College model with people living with dementia: a realist review

A systematic review on inequalities in accessing and using community-based social care in dementia

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