Dementia patients’ transition to residential aged care: Carers’ and social workers’ experiences

Specific information gaps were noted around options for long-term care, day-care centers, palliative and hospice services, and in-home support.

“Specific information gaps were noted around options for long-term care, day-care centers, palliative and hospice services, and in-home support (Armstrong et al., 2020; Fitzpatrick & Grace, 2019; Kupeli et al., 2019; Larsen et al., 2020; Radcliffe et al., 2023; Rognstad et al., 2020).”

Despite implementation of support initiatives intended to simplify care transitions, such as Australia's informational gateway services, caregivers reported that these were helpful in intent but insufficient in practice, often confusing, bureaucratic, and difficult to navigate during already stressful periods, with limited individualized or timely support.

“Despite the implementation of support initiatives intended to simplify care transitions, such as Australia’s informational gateway services, caregivers reported that these were helpful in intent but insufficient in practice, often confusing, bureaucratic, and difficult to navigate during already stressful periods, with limited individualized or timely support (Brooks et al., 2022a; Fitzpatrick &”

Caregivers described that profit-driven care models, insurance limitations, or lack of subsidized services restricted choices and increased out-of-pocket costs during critical transitions.

“In several studies, caregivers described how profit-driven care models, insurance limitations, or lack of subsidized services restricted choices and increased out-of-pocket costs during critical transitions (Armstrong et al., 2020; Cottrell et al., 2020; Fitzpatrick & Grace, 2019; Freedman et al., 2022; Gilmore-Bykovskyi et al., 2021; Gresham et al., 2018; Hanssen & Tran, 2019; Holton et al., 2023”

Emotional responses to transitions for both the individual with dementia and caregivers ranged from guilt and grief to relief and acceptance, depending on the level of preparation and perceived quality of care.

“Emotional responses to transitions for both the individual with dementia and caregivers ranged from guilt and grief to relief and acceptance, depending on the level of preparation and perceived quality of care (Fitzpatrick & Grace, 2019; Statz et al., 2022).”

The decision to move a loved one, frequently perceived as a "last resort," was commonly met with resistance, anxiety, and grief.

“The decision to move a loved one, frequently perceived as a “last resort,” was commonly met with resistance, anxiety, and grief (Fitzpatrick & Grace, 2019; Hui et al., 2022; Saragosa et al., 2023; Wright et al., 2024).”