The experiences, priorities, and perceptions of informal caregivers of people with dementia in nursing homes: A scoping review

Abstract

Background Person-centered care has been shown to increase desired outcomes for people with dementia, yet informal caregivers’ dissatisfaction with care is often reported. For those living in a nursing home, informal caregivers are uniquely situated to provide key insights into the individual’s care. However, little is known of the informal caregivers’ perspective, which hinders efforts to improve their satisfaction with person-centered nursing home care. Thus, we examined the comprehensive experiences, priorities, and perceptions of informal caregivers of nursing home residents with dementia. Methods In collaboration with stakeholders, a scoping review of Medline (Ovid), EMBASE.com , CINAHL (EBSCO), the Cochrane Library (Wiley), and PsycINFO (Ovid) databases from January 2000 to July 2020 was conducted. Data were extracted reflecting the experiences, priorities, and preferences of caregivers of people with dementia residing in nursing homes. Results We identified 114 articles that revealed nine themes: (1) communication, (2) transition to nursing home, (3) quality of care, (4) quality of life, (5) informal caregiver role, (6) knowledge of dementia, (7) end-of-life preferences, (8) medication use to manage neuropsychiatric behaviors, and (9) finances. Conclusion Informal caregivers described aspects of care that led to both positive and negative experiences with and perceptions of nursing home care. The shortcomings in communication were discussed most frequently, indicating a high priority area. While researchers define the identified themes individually, informal caregivers perceive them to be interwoven as they relate to person-centered care delivery. Although we did not assess the quality of included articles, by identifying themes relevant to caregivers’ perspectives of nursing home care, our findings may help to inform efforts to optimize caregivers’ satisfaction with nursing home care for residents with dementia.

Informal caregivers and assistive technology in Norwegian nursing homes

“…According to the informal caregivers’ technological experiences in their own lives, some suggested the possible use of AT to improve the quality of care, such as improving the sharing of information both with the staff and with their family member. A recent scoping review highlighted the informal caregivers’ experiences of shortcomings in the information [ 20 ]. Sufficient information is crucial to obtaining information about the person with dementia, in order to stay involved in decision-making, and for advocacy for the family member.…”

“…A metasynthesis by Tranvåg et al [ 36 ] describes that formal caregivers need to ensure that each person’s essential needs are met and their dignity is protected. In the fulfilment of this, informal caregivers are crucial collaborators [ 20 , 37 ].…”

“…Enabling informal caregivers’ involvement in AT, however, requires an organisation and care culture that is underpinned by person-centred values, where the informal caregivers are empowered to contribute according to individual wishes, and are seen as partners and not just a mean to achieve goals [ 18 , 19 ]. In many cases, the informal caregivers can provide important information about the patient’s wishes, hopes and preferences, especially in cases where the patient is unable to express these on their own, both in general [ 20 ] and more specifically concerning the use of AT. Developing a fruitful collaboration between staff and informal caregivers can therefore be crucial regarding the successful implementation and use of AT to improve the quality of care.…”

“…Developing a fruitful collaboration between staff and informal caregivers can therefore be crucial regarding the successful implementation and use of AT to improve the quality of care. A scoping review of informal caregivers’ perspectives on person-centred care in nursing homes revealed shortcomings in the quality of care, such as in communication with the staff and in the residents’ quality of life [ 20 ]. The literature on both informal caregivers’ and service users’ perspectives on AT is growing [ 19 , 21 – 23 ], but to date there is a lack of knowledge regarding informal caregivers’ experiences and perspectives explicitly concerning AT in nursing homes.…”

A Systematic Review of Tools Assessing the Perspective of Caregivers of Residents With Dementia

“…Yet, our stakeholders and current evidence highlighted the importance of caregivers’ perceptions of staff’s dementia-specific knowledge as it relates to competent dementia care provision (Gaugler et al, 2015; Reid & Chappell, 2017). In addition, our stakeholders highlighted communication between multiple dyads that include the caregiver, individual with dementia, facility staff, and physician (Harper et al, 2021). Caregivers’ perceptions of communication between the individual with dementia and staff were not represented in our sample of studies.…”