The narrative self in rural dementia: a case study from eastern Nova Scotia

2018 ◽  
Vol 39 (7) ◽  
pp. 1436-1458 ◽  
Author(s):  
RILEY CHISHOLM ◽  
KATHERINE BISCHOPING

ABSTRACTThis analysis examines how the narrative self of a person with dementia is maintained by family members in a small rural Nova Scotian community. In the literature, the expectation is often that rurality is a condition of isolation, distance from family and limited health resources. However, drawing on three years of ethnographic and interviewing research with a large extended family whose patriarch, Alexander, is a person with dementia, we demonstrate how a community's rurality influences interpretations of dementia. In Alexander's rurality, of particular import are local definitions of belonging, which privilege intimate knowledge of local history, working as a farmer to shape the land, and being of Scottish descent and male. As family members find Alexander's belonging to come into question in their community, we show them to employ narratives in which he is valorised for continuing to uphold local values – of ‘usefulness’ and of ‘being the land’. We show how the family members must also revisit and revise these narratives when Alexander's belonging is further called into question outside the family setting and, specifically, at the local farmer's market, where Alexander is often no longer greeted by other marketgoers. The men and women of the family arrive at different interpretations of this development, with the women considering marketgoers to demean and dehumanise Alexander, while the men feel that the marketgoers are avoiding interactions that would embarrass him. Such disagreements reveal the ongoing emotional labour of creating narratives that lack closure, certainty and consensus, as well as ways in which gender and rurality operate intersectionally in the process of meaning-making.

Author(s):  
Darby Morhardt ◽  
Marcia Spira

When a member of a family is diagnosed with Alzheimer's disease, the impact of the disease reverberates throughout the relationships within the family. This paper explores the challenges and strengths within one family as members manage and cope with Alzheimer's disease. The person with dementia and his family members are individually interviewed and each person explores the consequences of the disease on personal well-being as well as the relationships within the family. The family demonstrates how dementia in one family member demands flexibility in family roles as they navigate life through the challenges of living with dementia.


Author(s):  
Friday A. Eboiyehi

The continuous increase in the number of older people and the gradual erosion of the extended family system which used to cater to them are alarming. While older people in much of the developed countries have embraced old people's homes as an alternative, the same cannot be said of older people in Nigeria who still believed that it is the duty of the family to accommodate them. The chapter examined the perception of older people about living in old people's home in some selected local government areas in Osun State, Nigeria. The study showed that their perception about living in old people's home was poor as many of them still held on to the belief that it was the responsibility of their family members to house them as it was done in the olden days. Although a few of the interviewees (particularly those who are exposed to what is obtained in the Western world and those with some level of education) had accepted the idea, many preferred to live with their family rather than being dumped in “an isolated environment,” where they would not have access to their family members. Pragmatic policy options aimed at addressing this emerging social problem were highlighted.


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.


Author(s):  
M. Prasad ◽  
B. Narayan ◽  
A.N. Prasad ◽  
C.A. Rupar ◽  
S. Levin ◽  
...  

Background:the maternally inherited MTTL1 A3243G mutation in the mitochondrial genome causes MelaS (Mitochondrial encephalopathy lactic acidosis with Stroke-like episodes), a condition that is multisystemic but affects primarily the nervous system. Significant intra-familial variation in phenotype and severity of disease is well recognized.Methods:retrospective and ongoing study of an extended family carrying the MTTL1 A3243G mutation with multiple symptomatic individuals. tissue heteroplasmy is reviewed based on the clinical presentations, imaging studies, laboratory findings in affected individuals and pathological material obtained at autopsy in two of the family members.Results:there were seven affected individuals out of thirteen members in this three generation family who each carried the MTTL1 A3243G mutation. the clinical presentations were varied with symptoms ranging from hearing loss, migraines, dementia, seizures, diabetes, visual manifestations, and stroke like episodes. three of the family members are deceased from MelaS or to complications related to MelaS.Conclusions:the results of the clinical, pathological and radiological findings in this family provide strong support to the current concepts of maternal inheritance, tissue heteroplasmy and molecular pathogenesis in MelaS. neurologists (both adult and paediatric) are the most likely to encounter patients with MelaS in their practice. genetic counselling is complex in view of maternal inheritance and heteroplasmy. newer therapeutic options such as arginine are being used for acute and preventative management of stroke like episodes.


2020 ◽  
Vol 13 (2) ◽  
pp. 32
Author(s):  
S. M. Ayoob

The family is considered as the most important and outstanding primary group in the society. The extended family type is diminishing in the modern era due to multiple and unavoidable reasons. However in some countries, people give their support to preserve extended family system at least keeping their senior citizens in the same household. Senior citizens also play active roles by supporting the family members in numerous ways. This study was conducted to identify the living arrangements, roles played by the senior citizens in family and household and the reasons behind the active role taking behavior among senior citizens. Out of 20 Divisional Secretariat Divisions in Ampara district, 08 Divisional Secretariat Divisions where Muslims predominantly live have been selected as the study area using simple random sampling method. The sample size is 392. The primary data was collected from key informant interviews, case studies and focus group discussions. The study highlighted that 95% of the senior citizens in the study area are living with their family members. Maintaining household activities, guiding the family members, providing counselling, providing security, socialization, mediating, providing monetary support and mobile role are the major roles played by senior citizens. The reasons for this active role taking behaviour are physical fitness and healthy lifestyle of senior citizens, disaster situation, economic condition, loneliness and isolation, lack of organizational structure and social recognition in study area. Beyond their old age, the contribution of senior citizens to the family is immeasurable.


Author(s):  
Katherine R. Allen

Same-sex relationship dissolution has reverberations for individuals beyond the nuclear family. This chapter discusses a lesbian-parent family, consisting of two moms and two kids—when it broke up nearly two decades ago, many other family members, including the donor and his husband, were deeply affected. This chapter reflects on this experience from the author’s perspective of a family scholar and an activist for LGBTQ family rights. In the absence of legal marriage and thus legal divorce, family lives turned out in ways that even the most careful, deliberate efforts could not anticipate nor protect. The experiences described highlight many losses and regrets, despite the intentional love and concern for all of the parents, children, and extended family members involved. These reflections on this experience are intended to honor the family as it once was and the families they have become.


Dementia ◽  
2016 ◽  
Vol 18 (1) ◽  
pp. 55-79 ◽  
Author(s):  
Catherine Le Galès ◽  
Martine Bungener

Using the capability approach initially developed by A Sen as a theoretical framework, this paper analyses both what people with dementia and their families do in response to difficulties in their daily life brought about by the disease, and the reasons they give for acting as they do. Individual and collective interviews and ethnographic observations with 15 persons with dementia and one or more of their family members were conducted. Follow-up interviews were possible for nine families. Results highlight a great diversity in ways of doing things and in accompaniment by family members. Daily adjustments are often hidden or minimized, at least at the onset of the dementia. Later, they become more frequent, repetitive and indispensable but remain influenced by the social and gender roles that existed prior to the illness. The inventiveness of families, in a context marked by various kinds of constraints, is primarily motivated by their desire to maintain the apparently intact abilities of the person with dementia but especially to preserve forms of liberty and what counted for the person, what that person valued before the disease. There are some ways of living with dementia, even when accompanied, which may long remain preferable to others, which better answer to the past and present aspirations of persons with dementia and the purposes of the accompanying persons. It is thus essential that health professionals, as well as society in general, recognize and address this issue.


Dementia ◽  
2016 ◽  
Vol 18 (1) ◽  
pp. 36-54 ◽  
Author(s):  
Kay de Vries ◽  
Jenny Drury-Ruddlesden ◽  
Chris Gaul

It is estimated that a quarter of acute hospital beds are in use by older people with dementia at any one time. Little empirical research has been carried out that has specifically examined the day-to-day input of family members into the care of people with dementia during an acute hospital admission. In this article, we present the results of analysis of interviews with 26 family members of people with dementia about their experiences of supporting an admission of a person with dementia to an acute hospital unit in New Zealand. For all family members, the desire to support the person with dementia during their admission was at the forefront and was their primary focus. The theme, ‘And so I took up residence’, exemplifies fully the experiences of all of the family member participants. This study provides evidence that family members are a resource that may be unrecognised, untapped and unsupported in the event of hospitalisation of people with dementia.


Author(s):  
Carolyn J. Rosenthal

ABSTRACTThis paper presents a novel conceptualization of emotional support in intergenerational families. In a stratified random sample of 458 adults in Hamilton, Ontario, over half the respondents said that there was currently, or had been in the past, a person in their family to whom other family members turned for emotional support and personal advice. In the paper, this person is referred to as the “comforter.” Many people also identified the person who provided emotional support prior to the present comforter. On the basis of the data, a “position” of family comforter is inferred. The paper investigates the social correlates of the position, the type of activities associated with being the family comforter, and the pattern of succession as different generations in the family move in and out of the position. The paper demonstrates the family provision of emotional support at the level of the extended family. It is shown that occupancy, activities and succession of the comforter position are patterned by gender. Further, the data suggest that people seek emotional support from a generational peer.


PEDIATRICS ◽  
1983 ◽  
Vol 72 (5) ◽  
pp. 731-735
Author(s):  
Randall C. Wetzel ◽  
J. Michael Dean ◽  
Mark C. Rogers

Recently, a 7-month-old, terminally ill Gypsy infant was admitted to a pediatric intensive care unit. Treating this child and her extended family was a challenging experience during which numerous culture-related problems were encountered. The Gypsy approach to acute medical care consisted of the presence of a large extended family unit, the lack of decision making by the patient's parents, and several different Gypsy traditions. There were diverse, and often derogatory, reactions and prejudices from the hospital staff. After interviewing family members, this family's needs were easier to understand, and interaction with them in culturally relevant terms was possible. When dealing with Gypsy families, identification of the responsible elder male members of the family, establishment of firm lines of communication with essential family members and the parents, and education of the medical staff concerning Gypsies are recommended.


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