scholarly journals A Qualitative Study on Formal and Informal Carers' Perceptions of Dementia Care Provision and Management in Malaysia

2021 ◽  
Vol 9 ◽  
Author(s):  
Michaela Goodson ◽  
Emma McLellan ◽  
Roshaslina Rosli ◽  
Maw Pin Tan ◽  
Shahrul Kamaruzzaman ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Traditional Medicine ◽  
Public Perception ◽  
Social Care ◽  
Dementia Care ◽  
Care Provision ◽  
Care Providers ◽  
People With Dementia ◽  
Care And Support ◽  
Qualitative Interview Study

Background: The number of people living with dementia worldwide is increasing, particularly in low- and middle-income countries (LMICs) where little is known about existing post-diagnostic care and support. This study aimed to better understand healthcare provision for people living with dementia in Malaysia, and to identify priorities for providing timely, quality, and accessible care and support to all.Methods: This is a qualitative interview study on care providers and facilitators (health and community care professionals, paid carers, traditional medicine practitioners, faith healers, community leaders, non-governmental organisations). A topic guide, piloted in Malaysia and peer reviewed by all LMIC partners, elicited the understanding of dementia and dementia care and barriers and facilitators to care for people living with dementia and carers, and perceptions of key priorities for developing efficient, feasible, and sustainable dementia care pathways. Verbatim transcription of audio-recorded interviews was followed by iterative, thematic data analysis.Results: Twenty interviews were conducted (11 healthcare professionals, 4 traditional medicine practitioners, and 5 social support providers). The findings indicate that dementia care and support services exist in Malaysia, but that they are not fully utilised because of variations in infrastructure and facilities across the country. Despite a locally recognised pathway of care being available in an urban area, people with dementia still present to the healthcare system with advanced disease. The interviewees linked this to a public perception that symptoms of dementia, in particular, are normal sequelae of ageing. Earlier detection of dementia is commonly opportunistic when patients present to GPs, government clinic staff, and general physicians with other ailments. Dementia may only be identified by practitioners who have some specialist interest or expertise in it. Workforce factors that hindered early identification and management of dementia included lack of specialists, overburdened clinics, and limited knowledge of dementia and training in guideline use. Post-diagnostic social care was reported to be largely the domain of families, but additional community-based support was reported to be available in some areas. Raising awareness for both the public and medical professionals, prevention, and more support from the government are seen as key priorities to improve dementia management.Conclusions: This qualitative study provides novel insight into the availability, delivery, and use of post-diagnostic care and support in Malaysia from the perspective of care providers. The respondents in this study perceived that while there was a provision for dementia care in the hospital and community settings, the different care sectors are largely unaware of the services each provides. Future work should explore how care provision across different service sectors and providers can be supported to better facilitate patient access and referral between primary, secondary, and social care. The importance of supporting families to understand dementia and its progression, and strategies to help them care for relatives was emphasised. There is also a need for broad workforce training and development, at both the postgraduate and undergraduate levels, as well as improved general awareness in the community to encourage earlier help-seeking for symptoms of dementia. This will enable the use of preventive strategies and access to specialist services to optimise care and quality of life for people living with dementia in Malaysia.

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.

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.

scholarly journals A Multiple Stakeholder Perspective for Evaluating Community-Based Dementia Care

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 60-61
Author(s):  
Johan Suen
Keyword(s):  
Dementia Care ◽  
Structural Constraints ◽  
Care Provision ◽  
Care Providers ◽  
Structured Interviews ◽  
Community Based ◽  
Relational Factors ◽  
Care Relationships ◽  
The Individual ◽  
The Impact

Abstract For holistic interventions and research on dementia, it is fundamental to understand care experiences from the perspectives of carers, care recipients, and care professionals. While research on care dyads and triads have highlighted the effects of communication and interactional aspects on care relationships, there is a lack of knowledge on how individual-contextual and relational factors shape the provision and receipt of care in terms of decision-making processes, resource allocation, and expectations of care outcomes. Thus, this paper sheds light on (i) how carers negotiate care provision with other important life domains such as employment, household/family roles and conflicts, as well as their own health problems, life goals, values, and aspirations for ageing; (ii) how older adults with dementia perceive support and those who provide it; (iii) the structural constraints faced by care professionals in delivering a team-based mode of dementia care; and, taken together, (iv) how community-based dementia care is impeded by barriers at the individual, relational, and institutional levels. Findings were derived from semi-structured interviews and observational data from fieldwork conducted with 20 persons with dementia (median age = 82), 20 of their carers (median age = 60), and 4 professional care providers. All respondents were clients and staff of a multidisciplinary and community-based dementia care system in Singapore. Our analysis indicates the impact of dementia care is strongly mediated by the interplay between institutional/familial contexts of care provision and the various ‘orientations’ to cognitive impairment and seeking support, which we characterised as ‘denial/acceptance’, ‘obligated’, ‘overprotective’, and ‘precariously vulnerable’.

Management of dementia

2020 ◽  
pp. 557-570
Author(s):  
Sarah Cullum ◽  
Tesema Taye
Keyword(s):  
Quality Of Life ◽  
Social Care ◽  
Ethical Issues ◽  
Family Members ◽  
Dementia Care ◽  
Psychosocial Aspects ◽  
People With Dementia

The cornerstone of dementia care is social care, and much of this is delivered by the families and carers of people with dementia. The management of dementia should therefore focus on supporting and developing the care provided by family members and carers in the community, because their education and enablement will help to optimize the quality of life for all people living with dementia. This chapter concentrates on the assessment and management of people with dementia in the early and later stages of the disorder. At both stages we consider engagement, autonomy, respect, protection, and ethical issues, as well as describing the clinical and psychosocial aspects of treatment. The emphasis is on the broader principles of management, which apply to people with dementia of any aetiology, their families, carers, and communities, and take into account the different settings in which they may present.

scholarly journals Implementation of patient-centred care: which organisational determinants matter from decision maker’s perspective? Results from a qualitative interview study across various health and social care organisations

BMJ Open ◽  
2019 ◽  
Vol 9 (4) ◽  
pp. e027591 ◽  
Author(s):  
Kira Isabel Hower ◽  
Vera Vennedey ◽  
Hendrik Ansgar Hillen ◽  
Ludwig Kuntz ◽  
Stephanie Stock ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Social Care ◽  
Qualitative Content Analysis ◽  
Qualitative Interviews ◽  
Sampling Strategy ◽  
Well Being ◽  
Decision Makers ◽  
Patient Centred Care ◽  
Qualitative Interview Study ◽  
Health And Social Care

ObjectivesHealth and social care systems, organisations and providers are under pressure to organise care around patients’ needs with constrained resources. To implement patient-centred care (PCC) successfully, barriers must be addressed. Up to now, there has been a lack of comprehensive investigations on possible determinants of PCC across various health and social care organisations (HSCOs). Our qualitative study examines determinants of PCC implementation from decision makers’ perspectives across diverse HSCOs.DesignQualitative study of n=24 participants in n=20 semistructured face-to-face interviews conducted from August 2017 to May 2018.Setting and participantsDecision makers were recruited from multiple HSCOs in the region of the city of Cologne, Germany, based on a maximum variation sampling strategy varying by HSCOs types.OutcomesThe qualitative interviews were analysed using an inductive and deductive approach according to qualitative content analysis. The Consolidated Framework for Implementation Research was used to conceptualise determinants of PCC.ResultsDecision makers identified similar determinants facilitating or obstructing the implementation of PCC in their organisational contexts. Several determinants at the HSCO’s inner setting and the individual level (eg, communication among staff and well-being of employees) were identified as crucial to overcome constrained financial, human and material resources in order to deliver PCC.ConclusionsThe results can help to foster the implementation of PCC in various HSCOs contexts. We identified possible starting points for initiating the tailoring of interventions and implementation strategies and the redesign of HSCOs towards more patient-centredness.

Cardiometabolic morbidities and dementia

2020 ◽  
pp. 65-72
Author(s):  
Chengxuan Qiu ◽  
Davide Liborio Vetrano ◽  
Laura Fratiglioni
Keyword(s):  
Cognitive Decline ◽  
Social Care ◽  
Early Recognition ◽  
Well Being ◽  
Dementia Care ◽  
Cardiovascular Comorbidities ◽  
People With Dementia ◽  
Brain Ageing ◽  
Poor Outcomes ◽  
Brain Connection

Cardiometabolic morbidities and dementia are increasingly common as people age. In this chapter, we summarize the epidemiological literature concerning: (1) mixed dementia due to cerebrovascular and neurodegenerative lesions as the most common form of dementia in older people; (2) the relation of cardiovascular disease with cognitive decline and dementia and the underlying pathophysiological mechanisms; and (3) cardiovascular comorbidities in dementia and impact on dementia care and prognosis. Atherosclerotic and arteriosclerotic disorders resulting from long-term exposures to cardiovascular risk factors, together with neurodegeneration in brain ageing, contribute to accelerated cognitive decline and dementia. The heart-brain connection in ageing has implications for dementia interventions. Furthermore, cardiovascular comorbidities in dementia contribute to poor outcomes, create complex challenges for dementia care, and substantially increase social care costs of dementia. Thus, early recognition and management of cardiovascular comorbidities in dementia may help health and social care providers maximize the well-being of people with dementia.

scholarly journals Blurring and Bridging: The Role of Volunteers in Dementia Care within Homes and Communities

2020 ◽  
Vol 49 (3) ◽  
pp. 622-642 ◽  
Author(s):  
VIKKI MCCALL ◽  
LOUISE MCCABE ◽  
ALASDAIR RUTHERFORD ◽  
FEIFEI BU ◽  
MICHAEL WILSON ◽  
...  
Keyword(s):  
Social Policy ◽  
Survey Data ◽  
Dementia Care ◽  
Ageing Population ◽  
Policy Makers ◽  
People With Dementia ◽  
Care And Support ◽  
Informal Volunteering ◽  
Community Environments ◽  
Political Spectrum

AbstractPolicy makers across the political spectrum have extolled the virtues of volunteering in achieving social policy aims. Yet little is known about the role that volunteering plays in addressing one of the significant challenges of an ageing population: the provision of care and support to people with dementia. We combine organisational survey data, secondary social survey data, and in-depth interviews with people with dementia, family carers and volunteers in order to better understand the context, role and challenges in which volunteers support people with dementia. Social policies connecting volunteering and dementia care in homes and communities often remain separate and disconnected and our paper draws on the concept of policy ‘assemblages’ to suggest that dementia care is a dynamic mixture of formal and informal volunteering activities that bridge and blur traditional policy boundaries. Linking home and community environments is a key motivation, benefit and outcome for volunteers, carers and those living with dementia. The paper calls to widen the definition and investigation of volunteering in social policy to include and support informal volunteering activity.

scholarly journals Workforce development in dementia care through education and training: an audit of two counties

2016 ◽  
Vol 11 (2) ◽  
pp. 112-121 ◽  
Author(s):  
Andrea Mayrhofer ◽  
Claire Goodman
Keyword(s):  
Workforce Development ◽  
Social Care ◽  
Education And Training ◽  
Development Planning ◽  
Dementia Care ◽  
Content Type ◽  
People With Dementia ◽  
Health And Social Care ◽  
Care Health ◽  
And Training

Purpose – People with dementia require care at home, in care homes and in hospitals, which has implications for the current and future workforce in health and social care. To inform regional workforce development planning in dementia care, Health Education East of England commissioned an organisational audit of current dementia training at NHS Trusts and in social care across Hertfordshire and Bedfordshire. The paper aims to discuss this issue. Design/methodology/approach – Qualitative methods and non-probability purposive sampling were used for recruitment and data collection. The audit included NHS Trusts, local authorities, clinical commissioning groups, and health and social care organisations involved in commissioning and providing dementia education and training in the two counties. Findings – Whilst there was considerable investment in dementia awareness training, learning was not targeted, assessed or structured to ensure on-going professional development. Practical implications – This has implications for workforce development and career-progression for staff responsible for the care of older people with dementia. Conclusion: if a future workforce is expected to lead, coordinate, support and provide dementia care across health and social care, a qualifying curriculum could play a critical part in ensuring quality and consistency of approach and provision. Originality/value – This paper makes a timely contribution to discussions on the skills and competencies needed to equip the future workforce for dementia care across health and social care.

Sign in / Sign up

Export Citation Format

Share Document