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

Lena Marmstål Hammar; Moudud Alam; Marie Olsen; Anna Swall; Anne-Marie Boström

doi:10.1016/j.jamda.2020.07.002

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

J Am Med Dir Assoc. 2021 Mar;22(3):656-662. doi: 10.1016/j.jamda.2020.07.002. Epub 2020 Aug 21.

Authors

Lena Marmstål Hammar¹, Moudud Alam², Marie Olsen³, Anna Swall⁴, Anne-Marie Boström⁵

Affiliations

¹ School of Health, Care, and Social Welfare, Mälardalen University, Västerås, Sweden; School of Education, Health and Social Studies, Dalarna University, Falun, Sweden; Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm, Sweden. Electronic address: lena.marmstal.hammar@mdh.se.
² School of Technology and Business Studies/Statistics, Dalarna University, Falun, Sweden.
³ School of Education, Health and Social Studies, Dalarna University, Falun, Sweden; Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm, Sweden.
⁴ School of Education, Health and Social Studies, Dalarna University, Falun, Sweden.
⁵ Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm, Sweden; Theme Ageing, Karolinska University Hospital, Huddinge, Sweden; Stockholms Sjukhem, R&D Unit, Stockholm, Sweden.

PMID: 32839126
DOI: 10.1016/j.jamda.2020.07.002

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 = 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.

Keywords: Dementia; dignity; home care service; mixed longitudinal study design; person-centered care; registry; respect.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Dementia* / therapy
Female
Home Care Services*
Humans
Longitudinal Studies
Perception
Respect
Sweden