I becomes we, but where is me? The unity–division paradox when caring for a relative with dementia: A qualitative study

Abstract

Background The number of older people living with dementia is increasing. Admiral Nurses work with these individuals and their families in the UK to manage challenges associated with the condition, providing guidance, advice and reassurance, alongside practical solutions. Aim To explore the input of Admiral Nurses as part of people's journey to becoming and being a carer for someone with dementia. Design A qualitative study was conducted to describe and understand how Admiral Nurses are experienced and encountered by carers as part of their narrative around supporting a relative with dementia. Methods Semi‐structured interviews were conducted with 19 carers between November 2017–April 2018. They lasted between 45 and 90 min. Thematic analysis was used to interpret data. Findings An overarching concept of “the unity–division paradox” was derived from the data. This highlights the complex interchange between the carer with (a) the person with dementia, (b) other individuals and (c) external services. Such interactions can make carers feel part of a larger network (unity) but also as if they are on their own, fighting on behalf of the person with dementia (division). This concept was underpinned by the following themes: (a) I becomes we; (b) My private world is encroached by dementia; (c) I’m left navigating an unwieldy system; (d) Are you with or against us?; and (e) Recreating boundaries to rediscover me. Conclusion The identity and unique characteristics and interests of those caring for a person with dementia may be lost as they encounter tensions associated with the unity–division paradox. Admiral Nurses can help carers feel less alone in managing internal and external struggles by supporting them to do their best for a loved one with dementia. Implications for practice Understanding carers’ experience and supporting their work may help to increase and sustain their capacity to provide care.

Information seeking amongst informal caregivers of people with dementia: a qualitative study

“…Access to supportive professionals undertaking a proactive role in information sharing varied within the sample, as also found in previous research (Hole and Harrison Dening, 2019;Peel and Harding, 2014;Tierney et al, 2019). Our findings suggest a need for the systematic provision of proactive information sharing at service level, rather than the present patchwork provision based on good practice in individual settings (Bunn et al, 2017).…”

“…This study provided examples of strategies employed to shift the responsibility from individuals to a collective approach (Table 3). Sharing this information-seeking role within formal and informal networks can reduce the burden on individuals (Tierney et al, 2019;White et al, 2020) and the bridging of individual and community dimensions provides an opportunity to build resilience (Windle and Bennett, 2012). Approaches differed within our sample, with some participants benefitting from a whole family approach to information seeking.…”

“…, 2014; Department of Health, 2016), proactive information provision and space given within interactions to answer questions (Dean et al. , 2014; Tierney et al. , 2019).…”

“…This study provided examples of strategies employed to shift the responsibility from individuals to a collective approach (Table 3). Sharing this information-seeking role within formal and informal networks can reduce the burden on individuals (Tierney et al. , 2019; White et al.…”

Family dynamics in dementia care: A phenomenological exploration of the experiences of family caregivers of relatives with dementia

“…Wong et al (2015) agree that when there is an absence of sibling support, caregivers feel they are missing out on the opportunity to have somebody with whom they can discuss care-related challenges. Mental health nurses can assist family caregivers to feel less alone in the daily struggles that they encounter (Tierney et al, 2019).…”