The paradoxes experienced by informal caregivers of people with dementia during the transition from home to a nursing home

Abstract

Background The transition from home to a nursing home is a common care process experienced by older persons with dementia and their informal caregivers. This transition process is often experienced as fragmented and is paired with negative outcomes for both older persons (e.g. mortality) and informal caregivers (e.g. grief). Due to the central role that informal caregivers play, it is crucial to capture their experiences throughout all phases of the transition. Methods A secondary data analysis was conducted using an interpretative phenomenological design. A total of 24 informal caregivers of older persons with dementia, moving to a nursing home, participated in in-depth interviews. Data were collected between February 2018 and July 2018 in the Netherlands. Data were analysed using Interpretative Phenomenological Analysis. Results The transition experiences are characterised by three paradoxes: (i) contradicting emotions during the transition process; (ii) the need for a timely transition versus the need to postpone the transition process and (iii) the need for involvement versus the need for distance. All paradoxes are influenced by the healthcare system. Conclusions The identified paradoxes show the impact of the healthcare system and the importance of timely planning/preparing for this transition on the experiences of informal caregivers. In addition, it provides healthcare professionals insight into the thought processes of informal caregivers. Future research can use these paradoxes as a foundation to develop innovations aiming to improve the transition process from home to a nursing home for informal caregivers and, consequently, older persons.

Navigating Hospital To Home Transitions: Exploring Israeli Older Adult And Informal Caregiver Experiences, Challenges And Opportunities.

“…Previous studies can be comparable to our study ndings in the sense of experiences navigating hospital-to-home transitions. In the broader context of transitions of care for older adults who require care across different settings, e.g., from hospital to home, home to hospital, hospital to a nursing home, etc., older adults and informal caregivers have similarly reported experiences indicating satisfaction, while others have reported a lack of person-centered care and negative care outcomes (8, 15,[31][32][33][34]. The varied experiences encountered during hospital-to-home transitions suggest the importance of assessing individual older adult health conditions and family dynamics and providing tailored practical information to address unique situations (31).…”

Exploring informal caregivers' well‐being during COVID‐19 through online discussion forums

“…The theme 'Locked in or locked away' involved transitions from home to a care home, which without the complexity of a pandemic have been found to be stressful and complex for informal caregivers [6,29]. Others have identified that while this transition can be relieving for informal caregivers, it is still emotionally draining [33]. Groenvynck et al [33] and Samsi et al [6] have found that caregivers can feel guilty for placing their care recipient in care home.…”

“…Others have identified that while this transition can be relieving for informal caregivers, it is still emotionally draining [33]. Groenvynck et al [33] and Samsi et al [6] have found that caregivers can feel guilty for placing their care recipient in care home. It is now evident that COVID‐19 added an ‘all or nothing’ – aspect to care home transition decisions.…”

Continuous Change as a Disruptive Force: Exploring Homecare Transitions for Carers of People Living with Dementia in Scotland

“…The carer experience is widely reported as being complex and constituting multiple paradoxes, such as a sense of relief alongside guilt, or a need for respite but a desire to stay close (Crawford et al, 2015;Groenvynck et al, 2022;Høgsnes et al, 2014;Lee et al, 2022;McCormack et al, 2017;Cronfalk et al, 2017). Not all transitional experiences of informal carers of a person living with dementia are exclusively negative and often some positivity comes to light at the same time as acknowledging sadness (Johansson et al, 2014;Moon et al, 2017;Pritty et al, 2020;Rondon-Sulbaran et al, 2021).…”