They are still the same – family members’ stories about their relatives with dementia disorders as residents in a nursing home

Abstract

In order to better understand the context of suffering from dementia disorders, greater efforts should be made to understand and identify what persons with such disorders experience when living in a nursing home. The aim of this qualitative study was to gain further understanding of how persons with dementia disorders experienced and coped with their changed life situation after being relocated to a nursing home as described by their family members' perceptions. Qualitative data were collected from ten interviews with family members and evaluated using content analysis. The main findings suggest that residents with dementia disorders largely maintained their personality intact throughout the trajectory of illness as they were able to keep their habits and interests. The local environment of the nursing home and the residents' relationships to staff were important in order to feel accepted. Four categories were discerned during the analysis: living in limbo; coming to peace; keeping old habits and relationships; and thoughts about impending death. It is reasonable to believe that old habits and interests may be preserved as the embodiment of such habits are deeply rooted and connected to a person's identity even when going through various changes and transitions in life. Therefore, to be accepted as the person you are requires care and services to specific needs, i.e. person-centeredness. Lack of understanding from staff may therefore have an adverse effect on a person's self-respect and identity. For that reason, staff needs to reflect on their attitudes and relationships as well as extending their knowledge about how to address sensitive topics such as the residents' impending death. To achieve this support from managers is pivotal. Future research should focus on support to nursing staff to further knowledge and understanding about the individual changes resident go through near the end of life.

Emotional safety of people living with dementia: a systematic review

“…Seven main "inner conditions related to psychological aspects" were identified: "perceived self-efficacy and selfdetermination" (Brataas et al, 2010;Ericsson et al, 2013;Mazaheri et al, 2014;Panke-Kochinke, 2013), "willingness to receive support" (Panke-Kochinke, 2013), "perceived dependency on others" (Panke-Kochinke, 2013), "perceived mental stability" (Wang et al, 2015), "perceived familiarity" (Brittain et al, 2010;Brorsson et al, 2011;Duggan et al, 2008;Genoe, 2009;Genoe & Dupuis, 2011), "perceived information need" (Panke-Kochinke, 2013) and "assurance that others care for PLWD" (Brorsson et al, 2013;Cronfalk et al, 2017;Hung et al, 2017;Mjørud et al, 2017;Nijhof et al, 2013). These conditions were often reported in a context or setting related to the use of outdoor environments and to interacting with others, e.g.…”

“…Two "outer conditions related to social aspects" were identified: "opportunity to interact socially" (Brataas et al, 2010;Faith, 2014;Hansen et al, 2017;Hung et al, 2017;Hynninen et al, 2015;Mazaheri et al, 2014;Mjørud et al, 2017;Panke-Kochinke, 2013;Sørensen et al, 2008) and "receiving support" (Brataas et al, 2010;Cronfalk et al, 2017;Ericsson et al, 2013;Hung et al, 2017;Mjørud et al, 2017;Panke-Kochinke, 2013;Wang et al, 2015). The first category comprises the following three conditions related to the basics of social interaction among people: "attitude towards people living with dementia" (Brataas et al, 2010;Mazaheri et al, 2014;Mjørud et al, 2017;Panke-Kochinke, 2013), "behavior of others" (Hansen et al, 2017;Hung et al, 2017;Sørensen et al, 2008) and "living in relationships" (Faith, 2014;Hynninen et al, 2015).…”

“…The second category is related to the special care situation and focuses on the implementation and receipt of support. This category includes "establishing relationships in care" (Ericsson et al, 2013), "performing stressful tasks" (Brataas et al, 2010) and "access to help" (Cronfalk et al, 2017;Hung et al, 2017;Mjørud et al, 2017;Panke-Kochinke, 2013;Wang et al, 2015) as the three main conditions. Only the avoidance of interactions is described as a strategy performed by people living with dementia (Cronfalk et al, 2017;Panke-Kochinke, 2013).…”

“…This category includes "establishing relationships in care" (Ericsson et al, 2013), "performing stressful tasks" (Brataas et al, 2010) and "access to help" (Cronfalk et al, 2017;Hung et al, 2017;Mjørud et al, 2017;Panke-Kochinke, 2013;Wang et al, 2015) as the three main conditions. Only the avoidance of interactions is described as a strategy performed by people living with dementia (Cronfalk et al, 2017;Panke-Kochinke, 2013). The strategies performed by other people highlight the adjustment of health care services at the organizational level or at higher levels (no longer at the individual level) (Wang et al 2012;Clare et al, 2008;Ericsson et al, 2013).…”

“…Six "outer conditions related to physical aspects" were identified: "time of day" (Brorsson et al, 2011), "background sounds/stress of noises" (Brorsson et al, 2013;Hung et al, 2017), "changing living home" (Cronfalk et al, 2017), "private spaces" (Genoe, 2009;Genoe & Dupuis, 2011), "building design" (Hadjri et al, 2015;Hung et al, 2017;Lawrence et al, 2011) and "technologies" (Brittain et al, 2010;Brorsson et al, 2011;Groenewoud et al, 2017;Manera et al, 2016;Nijhof et al, 2013). Various contexts and settings are considered, ranging from living at home to transitioning between home care and a nursing home.…”