Patient Related Outcome Measures, 2025

“Time to Be Young?” – A Qualitative Study Exploring the Impact of Attending a Course for Young Carers Who Have a Parent with Dementia

Abstract

Abstract:

Purpose: Being a young carer of a parent with dementia can be challenging, with many carers undertaking various practical and caring tasks. The weekend course Time to be young? gathers young carers, aiming to support them to cope with their challenges in everyday life. The aim of this study was to explore their role as a caregiver and the experienced impact of the course on their strategies of coping in their everyday life.

Participants and Methods: The study had a qualitative descriptive design inspired by Lindseth and Norberg’s phenomenological hermeneutical method, using individual semi-structured interviews for data collection. The participants were recruited from former participants of the course Time to be young?, and the final sample included eight participants.
Results: Through the analysis, four main themes were identified: 1) Help to accept the situation, 2) A sense of community, 3) The need for information and 4) The need to live one’s own life. The study found that attendance at Time to be young? for young adults having a parent with dementia affected their coping strategies in their situation as a young care.
Conclusion: The study demonstrated the importance of courses like Time to be young?, and need for a meeting place, tailored information about dementia, and an opportunity to share and reflect upon their experiences as a young carer.

Forfattere

Celine Haaland-Johansen, Ingebjørg Haugen & Anne Marie Mork Rokstad

Tilgang til artikkelen

Journal of Affective Disorders, 2024

Sense of coherence, subjective burden, and anxiety and depression symptoms in caregivers of people with dementia: Causal dynamics unveiled by a longitudinal cohort study in Europe

Abstract

Online ahead of print.

Background: Sense of coherence (SOC) is a disposition to perceive things as comprehensible, manageable and meaningful. Lower SOC is associated with subjective burden and psychological morbidity in family caregivers, including in dementia. However, the evidence-base mainly comprises small-scale or cross-sectional studies. More should be known about SOC stability, causal relationships, and international contexts. We aimed to study longitudinal links between dementia caregivers’ SOC, subjective burden, and anxiety and depression symptoms in a multinational sample.

Methods: We analyzed the EU-Actifcare cohort (451 dyads of community-dwelling people with mild-moderate dementia and their caregivers). Caregivers’ assessments included: SOC scale, Relatives’ Stress Scale, Hospital Anxiety and Depression Scale. A cross-lagged panel model was used to investigate associations between these measures at baseline, 6 and 12-month follow-ups, controlling for covariates.

Results: Caregivers’ subjective burden, anxiety and depression symptoms increased over time, SOC remaining overall stable. Considering the first six-month follow-up, we found bidirectional relationships between SOC and subjective burden, and SOC and anxiety symptoms, while lower SOC predicted depression symptoms but not vice versa. For the remaining follow-up period, both anxiety and depression symptoms predicted lower SOC but not vice versa.

Limitations: Convenience sampling precludes full generalizability.

Conclusions: This large longitudinal study shed more light on interplays between SOC, subjective burden and mental health outcomes in dementia caregivers. Findings were consistent with SOC potential protective role against burden and psychological morbidity. However, they also supported reverse causality regarding part of the associations. Caregivers’ SOC levels may be directly influenced by subjective burden and psychological morbidity.

Forfattere

Manuel Gonçalves-Pereira, Maria J Marques, Regina F Alves, Hannah Jelley, Claire Wolfs, Gabriele Meyer, Anja Bieber, Kate Irving, Louise Hopper, Orazio Zanetti, Daniel M Portolani, Geir Selbaek, Janne Røsvik, Anders Sköldunger, Britt-Marie Sjölund, Marjolein de Vugt, Frans Verhey, Bob Woods

Tilgang til artikkelen