scholarly journals ‘And so I took up residence’: The experiences of family members of people with dementia during admission to an acute hospital unit

Dementia ◽  
2016 ◽  
Vol 18 (1) ◽  
pp. 36-54 ◽  
Author(s):  
Kay de Vries ◽  
Jenny Drury-Ruddlesden ◽  
Chris Gaul
Keyword(s):  
New Zealand ◽  
Family Members ◽  
Acute Hospital ◽  
Hospital Unit ◽  
People With Dementia ◽  
The Family ◽  
Hospital Beds ◽  
Acute Hospital Admission ◽  
Primary Focus ◽  
Person With Dementia

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.

Ethical aspects of researching subjective experiences in early-stage dementia

2011 ◽  
Vol 18 (5) ◽  
pp. 651-661 ◽  
Author(s):  
Hanna-Mari Pesonen ◽  
Anne M Remes ◽  
Arja Isola
Keyword(s):  
Early Stage ◽  
Family Members ◽  
Subjective Experiences ◽  
Ethical Aspects ◽  
People With Dementia ◽  
The Family ◽  
Research Interviews ◽  
Conducting Research ◽  
Person With Dementia

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.

scholarly journals The family accompaniment of persons with dementia seen through the lens of the capability approach

Dementia ◽  
2016 ◽  
Vol 18 (1) ◽  
pp. 55-79 ◽  
Author(s):  
Catherine Le Galès ◽  
Martine Bungener
Keyword(s):  
Capability Approach ◽  
Family Members ◽  
The Past ◽  
People With Dementia ◽  
The Social ◽  
The Family ◽  
And Gender ◽  
Person With Dementia ◽  
The Capability Approach

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.

Cognitive Decline and the Changing Self in Relationship

2015 ◽  
pp. 61-75
Author(s):  
Darby Morhardt ◽  
Marcia Spira
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Cognitive Decline ◽  
Family Member ◽  
Family Members ◽  
Well Being ◽  
Family Roles ◽  
The Family ◽  
Person With Dementia ◽  
The Impact

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.

scholarly journals “I Know Who I Am; the Real Me, and That Will Come Back”

2017 ◽  
Vol 28 (2) ◽  
pp. 119-140 ◽  
Author(s):  
Tamsin MacBride ◽  
Emma Miller ◽  
Belinda Dewar
Keyword(s):  
Quality Of Life ◽  
Qualitative Interviews ◽  
Family Members ◽  
The Real ◽  
Core Theme ◽  
The Core ◽  
People With Dementia ◽  
Care Systems ◽  
Person With Dementia

Effective support to carers of people with dementia can be critical to maintain quality of life for people with dementia and their families and to sustain the future of health and care systems. Qualitative interviews were undertaken with 14 carers of people with dementia across Scotland, and the data were analysed to identify the outcomes important to the carers. The importance of relationships emerged as the core theme, including relationship with the person with dementia, family members, other carers, and professionals. Although not evident in the literature, the authors noted that the concept of self-relationship was important to carers in the context of changing relationships with others. A multilayered approach to understanding relationships, and an approach to engagement that enables carers to define and express their priorities, is necessary to fit with the relational nature of care.

scholarly journals How are decisions on care services for people with dementia made and experienced? A systematic review and qualitative synthesis of recent empirical findings

2014 ◽  
Vol 26 (11) ◽  
pp. 1849-1862 ◽  
Author(s):  
Annika Taghizadeh Larsson ◽  
Johannes H. Österholm
Keyword(s):  
Social Services ◽  
Knowledge Production ◽  
Integrative Approach ◽  
Qualitative Synthesis ◽  
Care Services ◽  
People With Dementia ◽  
The Family ◽  
Legislative Changes ◽  
Person With Dementia ◽  
Academic Search

ABSTRACTBackground:During recent decades, there has been a growing recognition that people cannot be assumed incapable of making decisions about their own care solely on the basis of a dementia diagnosis and international agreements and legislative changes have strengthened the formal right for people with dementia to participate in decisions on care services. This raises important questions about how these decisions are currently made and experiencedin practice. In this review, we address this question and highlight directions for further research.Methods:We searched CINAHL, PsycINFO, ASSIA, Social Services Abstracts, Science Direct, Academic Search Premier, and PubMed. Twenty-four pertinent articles were identified, all representing qualitative studies. Relevant findings were extracted and synthesized along dimensions of involvement of the person with dementia in decisions on care services, using an integrative approach to qualitative synthesis.Results:We identified three overarching ways in which people with dementia are involved, primarily, in the informal part of a process of decisions:excluded, prior preferences taken into account, andcurrent preferences respected.Several (10) articles seemed to be based on the assumption that decisions on care services are invariably and solely made within the family and without participation of the person with dementia.Conclusions:The review emphasizes the need for more updated research about international debates and agreements concerning capabilities and rights of people with dementia and about the (potential) formal contexts of care decisions in the country concerned. This, we argue, is vital for future knowledge production in the area.

How collaboration is improving acute hospital admission for people with dementia

2017 ◽  
Vol 29 (9) ◽  
pp. 21-25
Author(s):  
Nicola Wood ◽  
Yvonne Cairns ◽  
Barbara Sharp
Keyword(s):  
Hospital Admission ◽  
Acute Hospital ◽  
People With Dementia ◽  
Acute Hospital Admission

scholarly journals 473 - Post-diagnostic Dyadic Intervention for People with Dementia and their Family Carers

2020 ◽  
Vol 32 (S1) ◽  
pp. 195-195
Author(s):  
Marleen Prins ◽  
Elsemieke van Belzen ◽  
Henriëtte van der Roest
Keyword(s):  
Psychosocial Support ◽  
Early Stage ◽  
Psychosocial Interventions ◽  
Emotional Impact ◽  
Family Carer ◽  
Family Carers ◽  
People With Dementia ◽  
The Family ◽  
The Future ◽  
Person With Dementia

Background and objectives Support directly after the diagnosis is often experiences as inadequate by people with dementia and their family carers. In this phase, appropriate psychosocial support is important to adapt to and cope with the dementia diagnosis. Often, available support is focused on practical matters and not on the emotional impact of the diagnosis. Also, very often problems have already started to accumulate before support is provided. In the US, the intervention SHARE [Support, Health, Activities, Resources, Education] was therefore developed and studied. This intervention is innovative, because it is designed for dyads (e.g., the person with dementia and their family carer) dealing with early-stage dementia. Its’ primary goal is to enhance communication between people with dementia and their family carers and to prepare them for the future. Several years ago, the intervention was adjusted and pilot -tested in the Netherlands, with positive results. This RCT study evaluates the (cost-)effectiveness of the Dutch SHARE intervention.Methods During four or five session and a pre-session, a healthcare psychologist carries out the intervention with dyads dealing with early-stage dementia. This to enhance skills of the dyad to cope with changes and stressors that might be expected in the future due to the dementia. The intervention takes place in an early stage when the person with dementia is still able to participate actively and before the family carer is overwhelmed by care-related stress. The primary outcome measurements are the quality of life of the person with dementia and self-efficacy of the family carer. Secondary outcomes are stress, communication in the relationship and perspective taking measured only for family carers. The design and procedures of the RCT will be presented in this session as well as the content of the intervention and demographic characteristics of participating dyads.Conclusion This intervention increases the ability of the dyad to cope with the disease and capacity to deal with the situation, with positive experiences of participating dyads and professionals. The study enhances knowledge about psychosocial interventions for people with dementia and family carer

scholarly journals Demência e pedagogia social

2006 ◽  
Vol 10 ◽  
Author(s):  
Fred Karl ◽  
Johannes Doll
Keyword(s):  
Alzheimer Disease ◽  
Family Members ◽  
Point Of View ◽  
Cognitive Capacity ◽  
Social Pedagogy ◽  
People With Dementia ◽  
Communication Partner ◽  
Keywords Aging ◽  
Person With Dementia

Resumo: O artigo aborda a problemática da comunicação com pessoas que sofrem algum tipo de demência, a partir de uma perspectiva da Pedagogia Social. O trabalho argumenta que o fundamento de qualquer comunicação é a possibilidade de assumir, pelo menos parcialmente, a perspectiva do outro. Com a perda das capacidades cognitivas causada pela demência, a pessoa com demência é cada vez menos capaz de assumir a perspectiva de uma outra pessoa. Desta forma, o doente perde o contato com o mundo exterior que se torna cada vez menos compreensível. O artigo aponta ainda para algumas formas de lidar com esta situação por parte de profi ssionais e familiares. Palavras-chave: Envelhecimento. Demência. Doença de Alzheimer. Pedagogia Social. Abstract: The article offers refl ections about the problems of communication with people with dementia on the point of view of social pedagogy. It arguments that the base of all communication is the possibility to assume, at least partially, the point of view of the communication partner. Loosing the cognitive capacity, the person with dementia is each time less capable to realize the cognitive movement. On this way, he starts to loose the contact with the exterior world, which becomes less and less comprehensible for him. The article points out different ways to deal with this situation for professionals and family members. Keywords: Aging. Dementia. Alzheimer Disease. Social Pedagogy.

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
Keyword(s):  
Meaning Making ◽  
Extended Family ◽  
Family Members ◽  
Health Resources ◽  
Narrative Self ◽  
Emotional Labour ◽  
The Family ◽  
Scottish Descent ◽  
Family Setting ◽  
Person With Dementia

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.

Tensions in support for family caregivers of people with dementia in Singapore: A qualitative study

Dementia ◽  
2021 ◽  
pp. 147130122199056
Author(s):  
Iccha Basnyat ◽  
Leanne Chang
Keyword(s):  
Family Support ◽  
Family Caregivers ◽  
Emotional Support ◽  
Family Members ◽  
Primary Caregivers ◽  
Support Needs ◽  
Physical Support ◽  
Cultural Expectations ◽  
People With Dementia ◽  
The Family

Background Family members as informal caregivers are considered the first line of support for people with dementia across the world. In Singapore, caregiving expectations revolve around the cultural expectations of providing care in the home environment. However, studies in Singapore have identified a lack of family support for primary caregivers. Family support has been discussed in the literature as the provision of care for people with dementia, and rarely as a resource for family caregivers. Method To understand family support among primary caregivers in Singapore, 24 semi-structured interviews were conducted. Thematic analysis found four themes: excuses for lack of physical support for the caregiver, tensions between cultural expectations of caregiving and the provision of support, unmet emotional support, and lack of awareness of dementia and caregiving needs. Findings Caregivers rationalized and forgave the absence of physical support but were frustrated when the lack of support impacted people with dementia. This was seen as a lack of fulfilling cultural obligations of caring for elderly parents. The caregivers also felt frustrated with the lack of emotional support provided to them, but these were unspoken between the caregiver and the family members. Insufficient and unhelpful support giving was exacerbated with the perception of family members’ limited understanding of the demands of caregiving. Conclusion The findings offer four practical suggestions to address unmet support needs. First, public education is needed to enhance general knowledge about the symptoms and progression of dementia. Second, help is needed to address miscommunication about support within the family. Third, the development of guidebooks is needed to help family caregivers communicate with family members about their various support needs. Fourth, the relationship between cultural expectation and caregiving must be understood within the context of modernity and urbanism.

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