Who cares? Managing obligation and responsibility across the changing landscapes of informal dementia care

2012 ◽  
Vol 33 (5) ◽  
pp. 888-907 ◽  
Author(s):  
VALERIE EGDELL
Keyword(s):  
Nursing Homes ◽  
Qualitative Data ◽  
Dementia Care ◽  
Health Geography ◽  
Care Giving ◽  
Cultural Expectations ◽  
People With Dementia ◽  
Informal Carers ◽  
Socially Situated ◽  
Research And Policy

ABSTRACTThis paper explores the different ways in which informal carers for people with dementia negotiate their care-giving role across the changing organisational and spatial landscape of care. In-depth qualitative data are used to argue that the decisions of carers are socially situated and the result of negotiations involving individuals, families and wider cultural expectations. These decisions affect where care occurs. In addressing these issues this paper draws attention to the lack of choice some carers may have in taking on the care-giving role; how and why carers draw upon support; and the different expectations of the care-giver's capabilities across the different sites of care, specifically at home and in nursing homes. It concludes that research and policy attention should focus on how the expectations about the role and abilities of carers are affected by where, and how, care is delivered. In doing so this paper contributes to the emerging health geography literature on care-giving as well as developing the spatial perspective in the established gerontological literature.

scholarly journals Facilitators and barriers to implement nurse-led interventions in long-term dementia care: a qualitative interview study with Swiss nursing experts and managers

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Julian Hirt ◽  
Melanie Karrer ◽  
Laura Adlbrecht ◽  
Susi Saxer ◽  
Adelheid Zeller
Keyword(s):  
Nursing Home ◽  
Nursing Homes ◽  
Public Perception ◽  
Dementia Care ◽  
Term Care ◽  
Face To Face ◽  
People With Dementia ◽  
Qualitative Interview Study ◽  
Facilitators And Barriers

Abstract Background To support the implementation of nurse-led interventions in long-term dementia care, in-depth knowledge of specific supporting factors and barriers is required. Conditions and structures of caring for people with dementia differ widely, depending on the country and the care context. Our study aimed to describe the experiences and opinions of nursing experts and managers with regard to facilitators and barriers to the implementation of nurse-led interventions in long-term dementia care. Methods We conducted a qualitative descriptive study using individual interviews based on qualitative vignettes as a useful stimulus to generate narrations allowing to study peoples’ perceptions and beliefs. The study took place in nursing homes in the German-speaking part of Switzerland and in the Principality of Liechtenstein using purposive sampling. We intended to conduct the interviews face-to-face in a quiet room according to the participant’s choice. However, due to the lockdown of nursing homes during the COVID-19 pandemic in spring 2020, we performed interviews face-to-face and by video. We analysed data thematically following Braun and Clarke to achieve a detailed, nuanced description. To verify our interpretation and to ensure congruence with participants’ perspectives, we conducted member checks. The Standards for Reporting Qualitative Research (SRQR) served to structure our manuscript. Results Six dyads of nursing home managers and nursing experts from six nursing homes took part in our study (n = 12). Our thematic analysis yielded seven themes reflecting facilitators and barriers to implementing nurse-led interventions in long-term dementia care: «A common attitude and cohesion within the organization», «Commitment on several levels», «A needs-oriented implementation», «The effect and the public perception of the intervention», «A structured and guided implementation process», «Supporting knowledge and competencies», as well as «Resources for implementing the intervention». Conclusions To support the implementation of nurse-led interventions in long-term dementia care, active commitment-building seems essential. It is necessary that the value of the intervention is perceptible.Commitment-building is the precondition to reach the persons involved, such as nursing home managers, nursing staff, residents and relatives. Furthermore, nurses should precisely inform about the intervention. It is necessary that the value of the intervention is perceptible. In addition, nurses should adjust the interventions to the situational needs of people with dementia, thus. Therefore, it is important to support dementia-specific competencies in long-term care. Findings indicate that the barrier is determined by the intervention and its implementation – and not by the behaviour of the person with dementia.

Influence of leadership on implementing Dementia Care Mapping: A multiple case study

Dementia ◽  
2017 ◽  
Vol 18 (6) ◽  
pp. 1976-1993 ◽  
Author(s):  
Tina Quasdorf ◽  
Sabine Bartholomeyczik
Keyword(s):  
Nursing Homes ◽  
Leadership Style ◽  
Qualitative Content Analysis ◽  
Dementia Care ◽  
Primary Study ◽  
Successful Implementation ◽  
People With Dementia ◽  
Care Mapping ◽  
Dementia Care Mapping

Dementia Care Mapping is an internationally applied method for enhancing person-centred care for people with dementia in nursing homes. Recent studies indicate that leadership is crucial for the successful implementation of Dementia Care Mapping; however, research on this topic is rare. This case study aimed to explore the influence of leadership on Dementia Care Mapping implementation in four nursing homes. Twenty-eight interviews with project coordinators, head nurses and staff nurses were analysed using qualitative content analysis. Nursing homes that failed to implement Dementia Care Mapping were characterised by a lack of leadership. The leaders of successful nursing homes promoted person-centred care and were actively involved in implementation. While overall leadership performance was positive in one of the successful nursing homes, conflicts related to leadership style occurred in the other successful nursing homes. Thus, it is important that leaders promote person-centred care in general and Dementia Care Mapping in particular. Furthermore, different types of leadership can promote successful implementation. Trial registration of the primary study: Current Controlled Trials ISRCTN43916381.

scholarly journals 414 - Supporting staff delivering person-centered care to people with dementia in Dutch nursing homes

2021 ◽  
Vol 33 (S1) ◽  
pp. 37-38
Author(s):  
Henriëtte van der Roest ◽  
Milan van der Kuil ◽  
Anouk Overbeek ◽  
Egbert Hartstra
Keyword(s):  
Nursing Homes ◽  
Living Arrangements ◽  
Online Survey ◽  
Dementia Care ◽  
Person Centered Care ◽  
People With Dementia ◽  
Modifiable Factors ◽  
Centered Care ◽  
Organizational Features

BackgroundPositive evidence has been found for person-centered care provisioning (PCC), the level of person- centeredness of care is positively associated with residents’ quality of life, quality of care an wellbeing.When providing PCC, care and support are provided in line with the needs, preferences and capacities of people with dementia. PCC is seen as the golden standard for dementia care. However, in nursing homes, needs and preferences of people with dementia are not always obvious, due to the relatively high levels of cognitive impairment. This, and amongst others time constraints might hinder high PCC by care professionals. Limited evidence show that certain organizational and environmental conditions, such as satisfactory leadership, interdisciplinary collaboration, and continuing education, lead to higher PCC. In order to facilitate care professionals as much as possible in providing PCC, more insight is desirable.ObjectiveThis study aims to provide more insight into the modifiable factors that contribute to PCC for people with dementia in Dutch nursing homes.MethodsA cross-sectional design was applied. Data were collected during the fifth assessment of the Living Arrangements for people with Dementia (LAD)-study from April 2019 until February 2020. Care professionals working in psychogeriatric units in nursing homes filled in an online survey. Organizational characteristics of participating nursing homes were inventoried.The level of PCC was assessed with the Dutch version of the ‘Person-centred care questionnaire’ (PCCq). Modifiable factors potentially impacting the level of provided PCC with regard to staff characteristics (e.g. autonomy, education), organizational features (e.g. size, involvement of family in care), and culture (e.g. learning climate) were included in multiple linear modelling.Preliminary resultsIn total 58 nursing home facilities were included in the study, and 814 care professionals completed the survey. Average PCCq score was 3.2 (SD = 0.4; range 0 to 4, higher scores indicating higher PCC).ConclusionFactors related to staff, and organizational features and culture, that contribute to PPC will be presented. The outcomes of the study will provide input for the optimal organization of dementia care, in order to support care professionals working in nursing homes to provide PCC.

Implementing Microlearning in Nursing Homes: Implications for Policy and Practice in Person-Centered Dementia Care

2020 ◽  
pp. 073346482092983
Author(s):  
Jenny Inker ◽  
Christine Jensen ◽  
Sonya Barsness ◽  
Mary Martha Stewart
Keyword(s):  
Job Satisfaction ◽  
Nursing Homes ◽  
Best Practices ◽  
Policy Development ◽  
Dementia Care ◽  
Policy And Practice ◽  
Knowledge And Attitudes ◽  
People With Dementia ◽  
Training Modality ◽  
Centered Care

The aim of this study was to develop and pilot a 52-week Microlearning curriculum on person-centered dementia care in nine nursing homes. The goal was to evaluate the usability and application of Microlearning as a tool to increase staff knowledge and improve perceptions of people with dementia, thus increasing their ability to deliver person-centered care and their job satisfaction. Findings indicate that participants enjoyed the flexible, 24/7 access to training and found that the immediacy of the format encouraged them to apply their learning directly to practice. Staff knowledge and attitudes toward people with dementia were positively impacted by the training, as was job satisfaction. Further research to test the efficacy of Microlearning compared to usual training is warranted, as are coordinated policy development efforts that can guide the implementation of best practices in the use of Microlearning as an innovative training modality in nursing homes.

Evaluation of a Music Intervention on Well-being and Behavior of People with Dementia Using Dementia Care Mapping

2020 ◽  
Author(s):  
Rebecca Dahms ◽  
Cornelia Eicher ◽  
Drin Ferizaj
Keyword(s):  
Nursing Homes ◽  
Well Being ◽  
Dementia Care ◽  
Music Intervention ◽  
Intervention Phase ◽  
People With Dementia ◽  
Essential Components ◽  
And Behavior ◽  
Care Mapping ◽  
Dementia Care Mapping

Introduction: Dementia Care Mapping (DCM) was originally developed as an observation tool to examine person-centered care in long-term care facilities and to evaluate the quality of life and well-being of people with dementia (PwD). However, the effects of a music intervention using this tool have not been investigated so far. This leads to the following research question: How does a music intervention which involves music therapy and other music-based interventions affect the observed well-being and behavior of PwD living in nursing homes? Methods: In this 14-week, non-controlled music intervention study, data from 30 PwD aged between 52 and 97 (M = 81.4 years) were analyzed. DCM coding involves continuous observation for five hours on four days in the baseline and intervention phase. In the follow-up phase PwD were mapped on two days for five hours. The DCM method were used to measure well-being and certain behaviors of PwD. Results: The well-being during the observation remained almost constant and corresponds to a neutral state of affect and focused contact, with no indication of positive or negative sensations. Significant improvements in certain behaviors were observed in the course from baseline to intervention phase. For example, it was shown that physical activities of the participants, such as (instructed) sports exercises, strengthening or physically challenging exercises in the intervention phase were significantly higher (M = 0.99, SD = 1.82) than at baseline phase (M = 0.00, SD = 0.00) (z = -2.37, p = .02, n = 26). Similar results were shown for expressive/creative activities or work-related activities (e.g. washing dishes). Conclusion: In summary, it can be stated that music interventions can promote communication and movement. However, musical stimulation is not one of the essential components of improving behavioral and psychological symptoms or well-being for PwD in nursing homes.

scholarly journals What Facilitates and Hinders the Implementation of Nurse-Led Interventions in Long-Term Dementia Care? A Qualitative Interview Study With Swiss Nursing Experts and Managers

2021 ◽  
Author(s):  
Julian Hirt ◽  
Melanie Karrer ◽  
Laura Adlbrecht ◽  
Susi Saxer ◽  
Adelheid Zeller
Keyword(s):  
Nursing Homes ◽  
Public Perception ◽  
Dementia Care ◽  
Complex Nature ◽  
Successful Implementation ◽  
Face To Face ◽  
People With Dementia ◽  
Qualitative Interview Study ◽  
Facilitators And Barriers

Abstract Background: To support the implementation of nurse-led interventions in long-term dementia care, in-depth knowledge of specific supporting factors and barriers is required. Conditions and structures of caring for people with dementia differ widely, depending on the country and the care context. Our study aimed to describe the experiences and opinions of nursing experts and managers with regard to facilitators and barriers to the implementation of nurse-led interventions in Swiss long-term dementia care.Methods: We conducted a qualitative descriptive study using individual interviews based on qualitative vignettes as a useful stimulus to generate narrations allowing to study peoples’ perceptions and beliefs. The study took place in nursing homes in the German-speaking part of Switzerland and in the Principality of Liechtenstein using purposive sampling. We intended to conduct the interviews face-to-face in a quiet room according to the participant’s choice. However, due to the lockdown of nursing homes during the COVID-19 pandemic in spring 2020, we performed interviews face-to-face and by video. We analysed data thematically following Braun and Clarke to achieve a detailed, nuanced description. To verify our interpretation and to ensure congruence with participants’ perspectives, we conducted member checks. The Standards for Reporting Qualitative Research (SRQR) served to structure our manuscript.Results: Six dyads of nursing home managers and nursing experts from six nursing homes took part in our study (n=12). Our thematic analysis yielded seven themes reflecting facilitators and barriers to implementing nurse-led interventions in Swiss long-term dementia care: «A common attitude and cohesion within the organization», «Commitment on several levels», «A needs-oriented implementation», «The effect and the public perception of the intervention», «A structured and guided implementation process», «Supporting knowledge and competencies», as well as «Resources for implementing the intervention».Conclusions: Successful implementation of nurse-led interventions in dementia care is highly challenging due to the complex nature of interventions. Therefore, it is important to know the facilitators and barriers to optimally design implementation strategies. Our results might support researchers and other key persons involved in implementing nurse-led interventions in Swiss long-term dementia care.

The legislative and political contexts surrounding dementia care in India

2008 ◽  
Vol 28 (7) ◽  
pp. 913-934 ◽  
Author(s):  
BIANCA R. BRIJNATH
Keyword(s):  
Mental Health ◽  
Low Income ◽  
Cultural Context ◽  
Dementia Care ◽  
Low Income Countries ◽  
Health Staff ◽  
Mental Health Staff ◽  
Adequate Treatment ◽  
Care Giving ◽  
People With Dementia

ABSTRACTCurrently there is no specific policy on dementia care in India. Rather, the responsibility for care for people with dementia is not clearly articulated and formal care services straddle mental health and aged care. The result is that much care is placed upon individual families. This paper critically reviews Indian legislative and policy documents on this field of care, namely, the Mental Health Act 1987, the National Mental Health Programme, the National Policy on Older Persons and the Senior Citizen's Act 2007. The invisibility of dementia care in public policy translates into the absence of adequate treatment facilities and mental health staff, and leaves informal care-giving unsupported. This gap is replicated in mental health and dementia-care research and literature in India, with little being known about how family carers respond to the experiences of care-giving, manage the stigma, and access support. As India, like other middle-income and low-income countries, is experiencing an increase in its older population, more research is needed to develop the epidemiological, medical and anthropological understanding of ageing, dementia and care. This knowledge is vital to understanding the cultural context of the disease and must also be incorporated into public health policy if there is to be effective management of the rising need for personal care.

scholarly journals “Nobody Seems to Know Where to Even Turn To”: Barriers in Accessing and Utilising Dementia Care Services in England and The Netherlands

2021 ◽  
Vol 18 (22) ◽  
pp. 12233
Author(s):  
Clarissa Giebel ◽  
Sarah Robertson ◽  
Audrey Beaulen ◽  
Sandra Zwakhalen ◽  
Dawn Allen ◽  
...  
Keyword(s):  
The Netherlands ◽  
Thematic Analysis ◽  
Health Care Professionals ◽  
Systems Of Care ◽  
Dementia Care ◽  
Service Usage ◽  
Care Services ◽  
People With Dementia ◽  
Informal Carers ◽  
The Uk

Background: Accessing post-diagnostic care can be difficult for people with dementia and their informal carers. Little is known, however, about the determinants of barriers to access, and how these might vary between countries. The aim of this study was to explore potential inequalities in access to formal dementia care services between England and the Netherlands, specifically from more disadvantaged areas. Methods: This was a mixed-methods study, involving semi-structured qualitative interviews and a carer questionnaire. People with dementia and informal carers were recruited by clinicians. The postal survey was co-produced with people with dementia, informal carers, and health care professionals. The survey asked carers about their own and their relatives with dementia’s, social support service usage and financing; as well as how they were made aware of services and whether they required more support. Qualitative transcripts were analysed by two researchers in each country using thematic analysis. Results: A total of 103 carer questionnaires were received by post and 13 interviews were conducted with people with dementia and family carers between January 2020 and April 2020. Many services were accessed via self-funding. Thematic analysis generated five core themes: Health literacy; Having faith and lack of faith; Service suitability; Structural issues surrounding service provision; and Financing care. One major difference between both country’s systems of care were the case manager and network support which people with dementia and carers benefitted from in the Netherlands, which was rarely the case in the UK. Conclusions: People with dementia and informal carers need to be supported better in accessing formal dementia care services in both the UK and the Netherlands, whilst some learning can be taken to improve access.

scholarly journals Dementia Care: Intersecting Informal Family Care and Formal Care Systems

2014 ◽  
Vol 2014 ◽  
pp. 1-9 ◽  
Author(s):  
Prabhjot Singh ◽  
Rafat Hussain ◽  
Adeel Khan ◽  
Lyn Irwin ◽  
Roslyn Foskey
Keyword(s):  
Family Member ◽  
Family Care ◽  
Well Being ◽  
Dementia Care ◽  
Formal Care ◽  
Policy And Practice ◽  
People With Dementia ◽  
Physical Burden ◽  
Formal Services ◽  
Informal Carers

Dementia is one of the major causes of disability and dependence amongst older people and previous research has highlighted how the well-being of people with dementia is inherently connected to the quality of their relationships with their informal carers. In turn, these carers can experience significant levels of emotional stress and physical burden from the demands of caring for a family member with dementia, yet their uptake of formal services tends to be lower than in other conditions related to ageing. This paper is based on a qualitative study undertaken in the Australian state of Queensland and explores issues of access to and use of formal services in dementia care from the perspective of the informal family carers. It identifies three critical points at which changes in policy and practice in the formal care system could improve the capability of informal carers to continue to care for their family member with dementia: when symptoms first become apparent and a diagnosis is sought; when the condition of the person with dementia changes resulting in a change to their support needs; and when the burden of informal care being experienced by the carer is so great that some form of transition appears to be immanent in the care arrangement.

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