scholarly journals CARING FOR OLDER INDIGENOUS PEOPLE WITH DEMENTIA: ATTENDING TO THE PERSONALITY

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S433-S433
Author(s):  
Kathleen R Mason ◽  
Tess H Moeke-Maxwell ◽  
Merryn Gott

Abstract Māori, the indigenous people of New Zealand, are living longer and dying older. The prevalence of conditions associated with older people, such as Dementia are expected to increase amongst the Māori population. Pae Herenga, a qualitative research project investigating traditional Māori end-of-life care customs, identified an indigenous narrative of Dementia care, as carried out by their families. Sixty participants took part in face-to-face interviews to systematically record the traditional care customs employed by Māori families. Of these families, five experienced caring for someone with dementia. A traditional Māori family values approach based on biological connections, relationships, empathy, love, patience and inclusiveness aimed to care for the individual with Dementia as an important member of the family, and sought to maintain as much of the person’s autonomy as possible, for as long as possible. Sharing care roles between family members and maintaining connections to Māori communities helped to prevent isolation of the person with Dementia and their family members caring for them. Involvement in family and community activities, and attending to the individual’s personality and their spiritual needs were just as important as tending to their physical care needs. These findings emphasize the importance of a holistic approach to caring for indigenous people with Dementia.

2021 ◽  
pp. 1-16
Author(s):  
Christine Brown Wilson ◽  
Jan Hinson ◽  
Jacinda L. Wilson ◽  
Stephanie Power ◽  
Daniel Hinson ◽  
...  

Abstract Language can shape and reinforce attitudes and stereotypes about living with dementia. This can happen through use of metaphors. However, common metaphors may not capture the complexity of experience of dementia from the perspective of the individual person or a family carer. This paper presents an alternative metaphor – that of a theatre production – based on the strategies used by carers to support people with dementia to live well in the community. We conducted face-to-face semi-structured interviews with 12 family members caring for someone with dementia in the community in Queensland, Australia. Our aim was to explore the strategies these carers used to provide support. Interview recordings were fully transcribed and thematically analysed. We identified positive care-giving strategies that described multiple roles that carers fulfilled as they felt increasingly responsible for day-to-day decision making. Family carers explained how they supported the person with dementia to remain a central character in their life and continued to support the person to be themselves. To achieve this, family carers embodied roles that we identified as similar to roles in a theatre production: director, stage manager, supporting cast, scriptwriter, and costume designer and wardrobe manager. Our metaphor of a theatre production offers a fresh perspective to explore the experience of informal care-giving in the context of dementia.


2019 ◽  
Author(s):  
Robert Sumaguingsing ◽  
Rudolf Cymorr Kirby Palogan Martinez

Among cultures which place emphasis on the centrality of family in ones lives, the care for the dying patient is more often than not delegated on family members. Given this context, it is interesting to note that few research have been done on the experiences of these individuals who provide care to their dying relatives. This research aims to understand the lives of these informal carers as they provide care to their dying relatives. After securing clearance from an IRB, seven (5) informants, deemed as coresearchers, were recruited and agreed to participate in this study. The co-researchers where selected based on a pre-set criteria and the number were reached based on theoretical saturation. Multiple individual in-depth face-to-face interviews were done to create the individual narratives which was later reflectively analysed. Interpretive phenomenology as espoused by van Manen served as the philosophical underpinning of the study. Consequently, the proposed analytic technique of van Manen was utilized as the process of reflective analysis. After the process of reflective analysis, three (3) themes were gathered, namely: Ambivalence in anticipation, Courage in uncertainty, Meaning in suffering. These themes represent for the co-researchers their lives as they care for their dying relatives. Further, these themes reflects for the co-researchers a phenomenon of living moment-to-moment, unsure of what tomorrow will bring, patiently waiting for their relative to cross over. For them, there seems to be a constant struggle of finding a reason for being and a sense of what has happened, what is happening and what could happen to their dying relative and their family after their death. This essence can be symbolically represented by a swinging pendulum, constantly in motion trying to situate ambivalence in their anticipation, looking for courage amidst uncertainty and finding formeaning in their experience of suffering. The insights suggest that there is a need for constant dialogue among family members and health care providers as they assumed the role of primary caregivers. Further continued emotional, moral and spiritual support is implied during this transition as well as follow-ups when the families are at the home setting.


Dementia ◽  
2018 ◽  
Vol 19 (2) ◽  
pp. 182-194 ◽  
Author(s):  
Kate Gridley ◽  
Yvonne Birks ◽  
Gillian Parker

Introduction Despite growing international interest in life story work as a tool for person-centred dementia care, there is little agreement on what constitutes good practice and little evidence from the perspectives of people with dementia or their family carers. Design and methods This paper reports the findings from the qualitative element of a larger study looking at the feasibility of evaluating life story work. Ten focus groups were held with 73 participants: four groups of people with dementia (25 participants); three with family carers (21 participants); and three with staff, professionals and volunteers with experience of life story work (27 participants). Findings: It became apparent through our focus groups that, when people talk about ‘life story work’, different people mean different things. This related to both process and outcomes. In particular, a person with dementia may have very different views from others about what life story work is for and how their life story products should be used. There was general agreement that a good practice approach would be tailored to the individual needs and preferences of the person with dementia. However, in practice many settings used templates and the process was led by staff or completed by family carers. Conclusion We produced nine key features of good practice which could be used to guide the life story work process. Key elements include the recognition that not everyone will want to take part in life story work and that some people may even find it distressing; the importance of being led by the person with dementia themselves; the need for training and support for staff, carers and volunteers; and the potential for life story work to celebrate the person’s life today and look to the future.


Religions ◽  
2018 ◽  
Vol 9 (10) ◽  
pp. 312
Author(s):  
Kerem Toker ◽  
Fadime Çınar

Background: The determination and fulfillment of the spiritual needs of the individual in times of crisis can be realized by the health care professionals having the knowledge and skills to provide individual-specific care. This research was conducted to determine the perceptions of health professionals about spirituality and spiritual care. Methods: The study of 197 health professionals working in a state hospital was performed. This study is a descriptive study which was conducted between December 2017 and January 2018. Data in the form of an “Introductory Information Form” and “Spirituality and Spiritual Care Grading Scale” was collected. In the analysis of the data, the Mann–Whitney U test, Kruskal–Wallis tests, frequency as percentage, and scale scores as mean and standard deviation were used. Results: It was determined that 45.7% of the health professionals were trained in spiritual care, but that they were unable to meet their patients’ spiritual care needs due to the intensive work environment and personnel insufficiency. The total score averaged by the health professionals on the spirituality and spiritual care grading scales was 52.13 ± 10.13. Conclusions: The findings of the research show that health professionals are inadequate in spiritual care initiatives and that their knowledge levels are not at the desired level. With in-service trainings and efforts to address these deficiencies, spiritual care initiatives can be made part of the recovery process.


2019 ◽  
Vol 17 (6) ◽  
pp. 707-719 ◽  
Author(s):  
Adele J. Kelly ◽  
Tim Luckett ◽  
Josephine M. Clayton ◽  
Liam Gabb ◽  
Slavica Kochovska ◽  
...  

AbstractBackgroundAdvance care planning (ACP) is identified as being an important process for people with dementia. However, its efficacy for improving outcomes relevant for the individual, carers and the health system has yet to be established.AimWe conducted a systematic review with the aims of testing the efficacy of ACP for people with dementia and describing the settings and population in which it has been evaluated.MethodsA search was completed of electronic databases in August 2016. Articles were included if they described interventions aimed at increasing planning for future care of people with dementia, delivered to the person with dementia, their carers and/or health professionals.ResultsOf 4,772 articles returned by searches, 30 met the inclusion criteria, testing interventions in nursing home (n= 16) community (n = 10) and acute care (n = 4) settings. Only 18 interventions directly involved the person with dementia, with the remainder focusing on surrogate decision-makers. In all settings, interventions were found effective in increasing ACP practice. In nursing homes, ACP was found to influence care and increase the concordance between end of life wishes and care provided. Interventions in the community were found to improve patient quality of life but were not shown to influence concordance.ConclusionFuture research should focus on ways to involve people with dementia in decision-making through supported means.


2007 ◽  
Vol 19 (3) ◽  
pp. 559-592 ◽  
Author(s):  
Henriëtte G. van der Roest ◽  
Franka J. M. Meiland ◽  
Raffaella Maroccini ◽  
Hannie C. Comijs ◽  
Cees Jonker ◽  
...  

Objective: Insight into the individual care needs of the growing number of people with dementia is necessary to deliver more customized care. Our study aims to provide an overview of the literature on the subjective needs of people with dementia.Method: Electronic databases were searched for publications on subjective needs between January 1985 and July 2005, and reference lists were cross-referenced. Extracts of needs were classified within problem areas of the (Dutch) National Dementia Program and quality of life domains, and the extracts were classified as a “need” (an implicitly communicated felt state of deprivation), “want” (expression of a need) or “demand” (suitable solution to fulfill a need).Results: Subjective needs were found in 34 studies with various research aims, such as awareness and coping. Few studies aimed to measure needs of people with dementia. The most frequently reported needs of people with dementia were the need to be accepted and respected as they are, the need to find adequate strategies to cope with disabilities, and the need to come to terms with their situation. Explicit wants or demands were reported less frequently than needs.Conclusion: The high number of reported needs and the limited number of wants and demands show that people with dementia do not frequently mention how they want their needs to be met. Most reported needs are not instrumental, but are related to well-being and coping. Further research to inventory these needs could help achieve more demand-directed and better attuned care in the future.


2011 ◽  
Vol 18 (5) ◽  
pp. 651-661 ◽  
Author(s):  
Hanna-Mari Pesonen ◽  
Anne M Remes ◽  
Arja Isola

This article is based on a qualitative longitudinal study that followed the subjective experiences of both people living with dementia and their family members during the early stages of the illness. The purpose of this article is to describe and reflect on the ethical and methodological issues that occurred during data collection. The article focuses on the situation of the person with dementia and the family member and the role of the researcher when conducting the research interviews. Based on the results of this study, conducting research interviews with people with dementia and their family members poses several ethical and methodological challenges that must be addressed. In doing so, ethically sound dementia-specific research methods will be actively developed enhancing our understanding of living with dementia and providing new insights into the care of people with dementia and their family members.


1997 ◽  
Vol 17 (5) ◽  
pp. 597-607 ◽  
Author(s):  
MURNA DOWNS

The purpose of this review is to identify and explore the emerging attention being paid to the individual in dementia research. Following a brief introduction, the review will examine literature which recognises three aspects of the person with dementia: the individual's sense of self; the person's rights; and the value to be gained from a concern with the perspectives of people with dementia. To date the medical model has dominated dementia research. This model tends to reduce the person with dementia to his/her neurobiology or neuropsychology (Cotrell and Schulz 1993). The experience and manifestation of dementia has been attributed solely to the disease process, with a consequent neglect of the psychosocial context surrounding the individual (Lyman 1989). Research on the psychosocial aspects of dementia has concentrated on family carers. Keady (1996) provides a useful categorisation of this research into the following topics: gender and coping style; marital relationships and the impact of dementia; access to information and services; participation in and effectiveness of support groups; adjustment and circumstances surrounding admission into care; and perception of own health needs. No literature focuses on people with dementia.


2021 ◽  
Author(s):  
◽  
Lucy Hester Nunns

<p>Dementia is now recognised as a progressive terminal illness causing significant health-care needs for people with dementia and challenges to their family member caregivers. The purpose of this study was to understand the lived experience of family member caregivers of people with dementia at end-of-life. The research was conducted using a phenomenological approach and data were analysed using Colaizzi’s framework. Five family members were interviewed about their experiences of caregiving for six people with dementia. Four themes were revealed. These were: ‘Being at the Coalface’ with subthemes of overload, and experiencing guilt, shame and resentment; ‘Moving Heaven and Earth’ with subthemes of love and preserving dignity; ‘Facing the Change’ with subthemes of loss of the person, living arrangement transitions, and one dimensional conversations; and the fourth theme was ‘Finding the Answers’ with subthemes of diagnosis and preparedness. All the themes are closely interrelated and throughout all of the participants’ narratives, ‘love’ was the one constant that wove the themes together. This study gives voice to the inner experiences of the family caregivers who were supporting people with dementia in New Zealand. The findings of this study have elucidated many implications for practice and areas for innovation in supporting family member caregivers of people with dementia. This study has identified that the areas in most need of improvement are timely diagnosis, access to wrap-around support services, advance care planning opportunities and optimal care at end-of-life.</p>


2021 ◽  
Author(s):  
◽  
Lucy Hester Nunns

<p>Dementia is now recognised as a progressive terminal illness causing significant health-care needs for people with dementia and challenges to their family member caregivers. The purpose of this study was to understand the lived experience of family member caregivers of people with dementia at end-of-life. The research was conducted using a phenomenological approach and data were analysed using Colaizzi’s framework. Five family members were interviewed about their experiences of caregiving for six people with dementia. Four themes were revealed. These were: ‘Being at the Coalface’ with subthemes of overload, and experiencing guilt, shame and resentment; ‘Moving Heaven and Earth’ with subthemes of love and preserving dignity; ‘Facing the Change’ with subthemes of loss of the person, living arrangement transitions, and one dimensional conversations; and the fourth theme was ‘Finding the Answers’ with subthemes of diagnosis and preparedness. All the themes are closely interrelated and throughout all of the participants’ narratives, ‘love’ was the one constant that wove the themes together. This study gives voice to the inner experiences of the family caregivers who were supporting people with dementia in New Zealand. The findings of this study have elucidated many implications for practice and areas for innovation in supporting family member caregivers of people with dementia. This study has identified that the areas in most need of improvement are timely diagnosis, access to wrap-around support services, advance care planning opportunities and optimal care at end-of-life.</p>


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