Experiences of informal caregivers of people with dementia with nursing care in acute hospitals: A descriptive mixed‐methods study

Abstract

Aims To explore the experiences of informal caregivers of people with dementia with the hospitalization of their relative concerning patient care, interactions with nurses, caregivers’ situation and the acute hospital environment. Design Mixed‐methods design. Methods The data were collected using an online questionnaire among a panel of caregivers (n = 129), together with a focus group and individual interviews from February to November 2019. The data were triangulated and analysed using a conceptual framework. Results Almost half of the respondents were satisfied with the extent to which nurses considered the patient's dementia. Activities to prevent challenging behaviours and provide person‐centred care were rarely seen by the caregivers. Caregivers experienced strain, intensified by a perceived lack of adequate communication and did not feel like partners in care; they also expressed concern about environmental safety. A key suggestion of caregivers was to create a special department for people with dementia, with specialized nurses. Conclusion Positive experiences of caregivers are reported in relation to how nurses take dementia into account, involvement in care and shared decision making. Adverse experiences are described in relation to disease‐oriented care, ineffective communication and an unfamiliar environment. Caregivers expressed increased involvement when included in decisions and care when care was performed as described by the triangle of care model. Caregivers reported better care when a person‐centred approach was observed. Outcomes can be used in training to help nurses reflect and look for improvements. Impact This study confirms that caregivers perceive that when they are more involved in care, this can contribute to improving the care of patients with dementia. The study is relevant for nurses to reflect on their own experiences and become aware of patients’ caregivers’ perspectives. It also provides insights to improve nurses’ training and for organizations to make the care and environment more dementia‐friendly.

Involvement, topics, and roles of nurses in shared decision‐making with patients with dementia in acute hospitals: An integrative review

“…Then, it is notable that asking about the patient's preferences has only been described in the preparation phase. This could explain the experiences of family caregivers and patients that their preferences are not considered (Bridges et al, 2020 ; Keuning‐Plantinga et al, 2021 ).…”

A shared decision‐making model about care for people with severe dementia: A qualitative study based on nutrition and hydration decisions in acute hospitals

“…5 In acute hospitals, around half of family carers reported that their relatives were left with insufficient supervision during mealtimes. 6 People with severe dementia who have frequent care transitions, including to and from hospitals, are also more likely to receive artificial nutrition and hydration (ANH), including tube feeding 7,8 ; however, current evidence in severe dementia shows that tube feeding does not prolong a person's life, prevent aspiration, lead to better nutritional parameters, nor improve quality of life. 9 The 2005 Mental Capacity Act in England and Wales assumes someone has capacity to make decisions about their care and treatment, unless proven otherwise.…”

“…Basic support, such as for eating and drinking, can be suboptimal in acute hospitals 5 . In acute hospitals, around half of family carers reported that their relatives were left with insufficient supervision during mealtimes 6 …”

“… 5 In acute hospitals, around half of family carers reported that their relatives were left with insufficient supervision during mealtimes. 6 …”

An exploration of the cultural appropriateness of the family-centered function-focused care intervention

“…The greater presence of troublesome symptoms including neuropsychiatric symptoms and delirium, increases care partner distress. The pre-existing, chronic strain borne by care partners of persons with dementia is also compounded by anxiety about the comfort and safety of the patient during their hospital stay and the potential for increased care needs at discharge that they feel unprepared to meet (Keuning-Plantinga et al, 2021; Kuzmik et al, 2021; Shankar et al, 2014).…”