Being Treated With Respect and Dignity?—Perceptions of Home Care Service Among Persons With Dementia

Abstract

Objective: Studies on the quality of home care services (HCS) offered to persons with dementia (PwDs) reveal the prevalence of unmet needs and dissatisfaction related to encounters and a lack of relationships with staff. The objective of this study was to enhance knowledge of the perceptions of PwDs regarding their treatment with dignity and respect in HCS over time. Design: A mixed longitudinal cohort study was designed to study trends in the period between 2016 and 2018 and compare the results between PwDs (cases) and persons without dementia (controls) living at home with HCS. Setting and Participants: Persons aged 65 years and older with HCS in Sweden. Methods: Data from an existing yearly HCS survey by the Swedish National Board of Health and Welfare (NBHW) was used. The focus was on questions concerning dignity and respect. NBHW data sets on diagnoses, medications, HCS hours, and demographic information were also used. We applied GEE logistic and cumulative logit regression models to estimate effects and trends of interest after controlling for the effects of age, gender, self-rated health, and number of HCS hours. Results: Over the study period, 271,915 (PwDs ¼ 8.1%) respondents completed the survey. The results showed that PwDs were significantly less likely (3%-10% lower odds and cumulative odds) than controls to indicate that they were satisfied in response to questions related to dignity and respect. Both groups experienced a decrease in satisfaction from 2016 to 2018. Females, individuals with poor self-rated health, and individuals granted more HCS hours were found to be more dissatisfied. Conclusions and Implications: The HCS organization needs to shift from a task-oriented system to a person-centered approach, where dignity and respect are of the utmost importance. The HCS organizations need to be developed to focus on competence in person-centered care, and leadership to support staff.

Person-centered dementia care in home care services – highly recommended but still challenging to obtain: a qualitative interview study

“…Therefore, ensuring that the staff has sufficient knowledge about dementia may be important for customized service [25,26]. This can contribute to good quality of care [27,28] and better communication and cooperation between people with dementia and staff [7].…”

“…The findings in the current study might indicate that some people with dementia accept the care and support they receive as passive recipients with an overall desire to be satisfied with the service. Previous research has identified that care and support from home care services are described as standardized and based on routines that focus on practical tasks, and this can result in limited individualization to the patient's needs [24,27,28]. Furthermore, the communication between staff and the person with dementia during visits can become taskoriented [15,25].…”

Factors associated with older persons’ perceptions of dignity and well-being over a three-year period. A retrospective national study in residential care facilities

“…The generalizability might also be affected by the fact that we do not have any information about ethnicity/nationality of the respondents. Regarding the survey used for data collection, it was developed to support quality improvements in RCFs, but it has also been used in previous research [ 28 ]. For survey validity, it is critical to ensure that the questions in the survey measure what they are designed to measure [ 58 ].…”

“…Departing from the PCP framework, the aim of this study was to examine the associations between perceptions of dignity and well-being (dependent variables) and the attitudes of staff and the indoor-outdoor-mealtime environments (independent variables) over a three-year period. Individual factors for residents, such as self-rated health, mobility and diagnosed dementia, are not considered in the PCP framework, but in previous research conducted in both home-care settings and RCFs, it was found that persons perceiving poor health and persons diagnosed with dementia had higher odds of being more dissatisfied with aspects of dignity [ 27 , 28 ]. As most of the residents living in RCFs in Sweden have an extensive need for care due to poor health and diagnosed dementia [ 29 , 30 ], we need to increase our understanding regarding whether these factors are associated with perceptions of dignity and well-being over time.…”

Factors associated with perceptions of dignity and well‐being among older people living in residential care facilities in Sweden. A national cross‐sectional study

“…The survey was then tested by a cognitive process where an interviewer, together with older people, performed the survey and it was further peer‐reviewed by methodological expertise (The Swedish National Board of Health & Well‐fare, 2012b). The survey has been used in previous research (Hammar et al., 2020).…”