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

Abstract

Background Dementia is one of the main causes of disability and dependence in older people, and people with dementia need comprehensive healthcare services, preferably in their own homes. A well-organized home care service designed for people with dementia is necessary to meet their needs for health- and social care. Therefore, it is important to gain knowledge about how people with dementia experience the home care service and if the service responds to their wishes and needs. The aim of this study was to explore the experience of home care services among people with dementia, to understand the continuity in services, how the service was adapted to people with dementia, and how the patient experienced person-centered care and shared decision-making. Methods We used a qualitative, exploratory design based on a phenomenological-hermeneutic approach and performed individual in-depth interviews with persons with dementia. A convenience sample of 12 persons with moderate to severe degrees of dementia from four Norwegian municipalities participated in the study. The interviews were conducted in February 2019. Results The findings identified that the participants appreciated the possibility to stay safely in their own homes and mostly experienced good support from staff. They expressed various views and understanding of the service and experienced limited opportunities for user involvement and individualized, tailored service. The overall theme summarizing the findings was: “It is difficult for people with dementia to understand and influence home care services, but the services facilitate the possibility to stay at home and feel safe with support from staff.” Conclusion The participants did not fully understand the organization of the care and support they received from the home care services, but they adapted to the service without asking for changes based on their needs or desires. Although person-centered care is recommended both nationally and internationally, the participants experienced little inclusion in defining the service they received, and it was perceived as unclear how they could participate in shared decision-making.

Autonomy conquers all: a thematic analysis of nurses’ professional judgement encountering resistance to care from home-dwelling persons with dementia

“…In this study the understanding of autonomy seemed to be synonymous with self-determination. One aim of modern legislation and guidelines for dementia care is shared decision-making, but previous studies have illuminated that the aim of shared decision-making in care for persons with dementia is often a dilemma and may be difficult to achieve [ 46 , 47 ]. In persons with dementia, their choices are not always well informed due to cognitive decline [ 48 ].…”

Individuals' Awareness of and Willingness to Accept Hospital-at-Home Services and Related Factors: A Cross-Sectional Study

“…More mature compensatory policies are needed, and the experience of developed countries is enlightening. For instance, in Norway, home care is free for patients, and in Canada, it is funded by the government (32). Moreover, the results of this study showed that 391 participants were not clear about the cost of HaH services, and most hoped that it would be <20% of their monthly family income.…”

Development, reliability, and validity of a self‐assessment scale for dementia care management

“…In the factor analysis, the eigenvalue of Factor I, ‘Person‐centred care’, was the highest. In the home setting, the emphasis is on individualized care, based on the conditions, needs, preferences, and available resources for people with dementia 23–25 . It was considered that care management for home‐dwelling people with dementia should focus on helping them continue living in their community, while promoting their autonomy 26 and abilities and getting them to participate in care 27 .…”

“…In the home setting, the emphasis is on individualized care, based on the conditions, needs, preferences, and available resources for people with dementia. [23][24][25] It was considered that care management for home-dwelling people with dementia should focus on helping them continue living in their community, while promoting their autonomy 26 and abilities and getting them to participate in care. 27 It was reported that caregivers have tried to work to emphasize person-centred care based on their competencies even in crisis situations under the COVID-19 pandemic.…”