Continuity of home-based care for persons with dementia from formal and family caregivers’ perspective

Larsen, Lill Sverresdatter; Normann, Hans Ketil; Hamran, Torunn

doi:10.1177/1471301216682626

Cited by 15 publications

(22 citation statements)

References 23 publications

(38 reference statements)

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“…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].…”

Section: Discussionmentioning

confidence: 99%

“…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].…”

Section: Low Expectations and Adapting To The Home Care Service Receivedmentioning

confidence: 99%

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

Hoel

Rokstad

Feiring

et al. 2021

BMC Health Serv Res

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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.

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Section: Discussionmentioning

confidence: 99%

Section: Low Expectations and Adapting To The Home Care Service Receivedmentioning

confidence: 99%

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

Hoel

Rokstad

Feiring

et al. 2021

BMC Health Serv Res

View full text Add to dashboard Cite

show abstract

“…The need for coordination, planning and organization of the homecare service can exceed the capacity the service has to adapt to the individual patient (Fjørtoft et al., 2020). This may explain why homecare services have traditionally been minimally specialized and adapted to people with dementia (Bokberg et al., 2015) and have been described as providing the same type of help to most patients (Bokberg et al., 2015; Larsen et al., 2019; Turjamaa et al., 2014). Although the complexity experienced by the staff can be challenging, the need for a tailored service for people with dementia is emphasized.…”

Section: Discussionmentioning

confidence: 99%

Staff's perspectives on the organization of homecare services to people with dementia—A qualitative study

et al. 2021

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Aims The aim of the study was to explore the experiences of homecare staff about the impact of the organization of homecare services for people with dementia. Design This study has a qualitative, exploratory design based on a phenomenological‐hermeneutic approach, using individual in‐depth interviews with homecare staff to collect data. Methods A convenience sample of 14 homecare staff from five municipalities participated in the study. Main topics introduced: (a) how homecare services for people with dementia are organized and (b) challenges in respondents' everyday practice of caring for people with dementia. Interviews were conducted from October to December 2017. Results Three main themes were identified from the interviews. (a) Complexity and need for individualized facilitated homecare services; homecare services were described as complex in regard to both the patient and the service. The complexity of the service made it challenging to tailor the service to the individual patient. (b) The importance of trust and relationships; establishing trust in the relationship between the patient and the staff resulted in better‐quality care. This was crucial for identifying the patient's need for help. (c) Organizational challenges; homecare services could be vulnerable to changes in the organization. Practical tasks and following the daily scheduled task list were often prioritized at the expense of an individually tailored service.

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“…Research into the continuity of care for such individuals living at home is scant (Larsen et al, 2019), and so the present study has added to this literature and highlighted the importance of meaningful interaction between the person with dementia and their carer, which was highly valued by families. This was vital and should not solely focus on the functional aspects of care, allowing for communication and connection at a meaningful level.…”

Section: Discussionmentioning

confidence: 94%

Home care in dementia: The views of informal carers from a co-designed consultation

et al. 2021

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Background In the United Kingdom, there is a current priority for high-quality dementia care provided at home. However, home care or domiciliary care is an area where problems have been reported, in terms of a lack of consistency, coordination and appropriate responses to the specific needs of those with dementia. The views of informal carers, who often must respond to these problems when supporting relatives, are crucial in shedding light on the issues and in seeking to promote solutions. Methods This study explored the views of informal carers of those with dementia concerning home care, through a consultation using an electronic survey. The survey questions were designed by informal carers, through a public involvement group within an existing programme of dementia research. The survey elicited responses from 52 informal carers in 2017/18. The data were analysed qualitatively using framework analysis. Findings Carers’ views focused on the need for investment into meaningful personalisation, recognising the value of providing care and valuing formal carers, systemic failings of care coordination and provision and the importance of ongoing collaboration and care planning. Conclusion Based on a framework drawn from the views of informal carers themselves, this study articulated issues of concern for home care and its delivery for people with dementia. Attempts should be made to make dementia home care more consistently personalised, inclusive and collaborative with informal carers and key others involved. Further areas to explore include working conditions of formal carers and current models utilised in homecare provision.

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Continuity of home-based care for persons with dementia from formal and family caregivers’ perspective

Cited by 15 publications

References 23 publications

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

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

Staff's perspectives on the organization of homecare services to people with dementia—A qualitative study

Home care in dementia: The views of informal carers from a co-designed consultation

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