Young Onset Dementia Informal Caregiver Experience in Caregiving: A Systematic Review

IF 3.4 3区医学 Q1 NURSING Journal of Advanced Nursing Pub Date : 2025-02-13 DOI:10.1111/jan.16811

Zong Han Lew, Adeline Su Lyn Ng, Wentao Zhou

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引用次数: 0

Abstract

Aim

To collate the common caregiving experience of Young Onset Dementia informal caregivers.

Design

Qualitative systematic review.

Methods

Qualitative grey literature and peer-reviewed journals published between 2013 and 2023 that addressed Young Onset Dementia informal caregivers' experiences were included without context limitation. Only English language publications were included because of limitations in translation. Study selection was conducted with two independent reviewers. Critical appraisal using Joanna Brigg Institutes Qualitative Appraisal Instrument, data extraction of participant's quote verbatim and data synthesis through categorisation of extracted verbatim were conducted without an independent reviewer.

Data Source

PubMed on 16 October 2023, Cochrane and MEDLINE on 17 October 2023, EMBASE, CINAHL, PsycINFO, ProQuest, Scopus, Web of Science and Google Scholar on 18 October 2023.

Results

A total of 37 studies included in this review represented the experiences of 566 informal caregivers. A total of 354 extracted findings were synthesised into 25 categories and four themes through meta-aggregation which addressed informal caregivers' diagnosis challenges, challenges with complex care, experience with various support services and coping strategies.

Conclusion

Young Onset Dementia informal caregivers experience unique caregiving challenges. These informal caregivers required age-appropriate support services to meet their unique needs.

Implications

Gaps in available appropriate support services for Young Onset Dementia informal caregivers existed. Therefore, these informal caregivers experienced unique challenges such as loss of employment that informal caregivers of other diseases do not experience.

Impact

Policymakers and healthcare professionals need to understand the unique experience of these informal caregivers to provide appropriate support services that could improve their caregiving experience.

Reporting Method

PRISMA 2020 Statement.

Patient or Public Contribution

No Patient or Public Contribution.

What Does This Paper Contribute to the Wider Global Clinical Community

This review highlighted the various unique challenges encountered by informal caregivers.

Trial Registration

PROSPERO Database (CRD42023467541). https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42023467541

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来源期刊

Journal of Advanced Nursing 医学-护理

CiteScore

6.40

自引率

7.90%

发文量

369

审稿时长

3 months

期刊介绍： The Journal of Advanced Nursing (JAN) contributes to the advancement of evidence-based nursing, midwifery and healthcare by disseminating high quality research and scholarship of contemporary relevance and with potential to advance knowledge for practice, education, management or policy. All JAN papers are required to have a sound scientific, evidential, theoretical or philosophical base and to be critical, questioning and scholarly in approach. As an international journal, JAN promotes diversity of research and scholarship in terms of culture, paradigm and healthcare context. For JAN’s worldwide readership, authors are expected to make clear the wider international relevance of their work and to demonstrate sensitivity to cultural considerations and differences.