Surviving or Thriving : Resilience in informal carers of people with dementia

Jones, Susan May (2020) Surviving or Thriving : Resilience in informal carers of people with dementia. Doctoral thesis, University of East Anglia.

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Background: Providing care for a friend or relative with dementia can be stressful. Dementia carers are at greater risk of developing mental health problems than other carers or the general population. However, not all carers experience distress; caring can also be a positive experience. Resilience has been identified as the defining characteristic between carers who are merely surviving and those who are thriving.

Aims: This study aimed to explore resilience in carers of people with dementia.

Methods: A two-phase sequential mixed-methods approach was used. Phase one employed quantitative methods to investigate the relationships between resilient coping, subjective wellbeing, and social support. In phase two, qualitative methods were used to understand carers’ conceptualisations of resilience and to identify the resilient coping strategies carers used to overcome care-related challenges.

Results: Phase one results showed that highly resilient carers report less psychological distress. Resilient coping was a partial mediator in the distress-wellbeing relationship. Attending a Dementia Café was positively associated with higher resilient coping and subjective wellbeing, although no causal relationship could be identified from the data. Investigations of social support showed that all four domains of support (emotional/informational support, affection, tangible support, and positive social interaction) had a positive relationship with resilient coping but no single domain had greater influence on resilience overall.

Phase two findings revealed that carers’ conceptualisations of resilience align with definitions found in the literature but carers place greater emphasis on self-compassion and the fluctuating nature of resilience. Highly resilient carers used strategies that maintained their self-identity, and supported them to engage with support networks, e.g. Dementia Cafés, and navigate formal care services.

Conclusion: Together, these findings emphasise the importance of resilient coping in promoting carer wellbeing. Health and social care providers should design and deliver personalised services that support carers to develop and maintain resilient coping strategies, which help them to achieve their caring goals.

Item Type: Thesis (Doctoral)
Faculty \ School: Faculty of Medicine and Health Sciences > School of Health Sciences
Depositing User: Chris White
Date Deposited: 07 Sep 2020 14:01
Last Modified: 30 Sep 2021 00:38


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