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.

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.

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 ‘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.

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
Keyword(s):  
Indigenous People ◽  
Family Members ◽  
Holistic Approach ◽  
Spiritual Needs ◽  
Care Needs ◽  
Face To Face ◽  
Community Activities ◽  
People With Dementia ◽  
The Individual ◽  
Person With Dementia

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.

scholarly journals Health Promotion Behavior among Older Korean Family Caregivers of People with Dementia

2021 ◽  
Vol 18 (8) ◽  
pp. 4123
Author(s):  
Aram Cho ◽  
Chiyoung Cha
Keyword(s):  
Older Adults ◽  
Health Promotion ◽  
Univariate Analysis ◽  
Family Members ◽  
Capital City ◽  
Care Plan ◽  
Term Care ◽  
Health Promotion Behaviors ◽  
People With Dementia ◽  
Health Promotion Behavior

People adopt health promotion behaviors to promote their health as they interact within the environment. The purpose of this study was to examine factors influencing health promotion behaviors among older adults caring for family members with dementia. For this cross-sectional study, data from 135 older adults who were the main caregivers were collected at an outpatient clinic at a university hospital in the capital city of South Korea between September and October in 2020. Sociodemographic characteristics, caregiver-related characteristics, dementia knowledge, fear of dementia, and health promotion behaviors were measured. Univariate analysis revealed that the level of health promotion behaviors differed by age, sex, educational level, monthly income, relationship with the family member with dementia, and cohabitation with family members with dementia. In the multivariate analysis, a hierarchical multiple regression model explained 33.9% of the variance. Sex, duration of caregiving, use of long-term care service, and fear of dementia predicted health promotion behavior. A strategic tailored care plan for target population is needed to improve the health promotion behavior of older adults caring for family members with dementia.

scholarly journals ‘Getting back to normality seems as big of a step as going into lockdown’: the impact of the COVID-19 pandemic on people with early to middle stage dementia

2021 ◽  
Author(s):  
Catherine V Talbot ◽  
Pam Briggs
Keyword(s):  
Well Being ◽  
Cognitive Stimulation ◽  
Social Worlds ◽  
Middle Stage ◽  
People With Dementia ◽  
The Social ◽  
Function Loss ◽  
The Government ◽  
Person With Dementia ◽  
The Impact

Abstract People with dementia can experience shrinkage of their social worlds, leading to a loss of independence, control and reduced well-being. We used ‘the shrinking world’ theory to examine how the COVID 19 pandemic has impacted the lives of people with early to middle stage dementia and what longer-term impacts may result. Interviews were conducted with 19 people with dementia and a thematic analysis generated five themes: the forgotten person with dementia, confusion over government guidance, deterioration of cognitive function, loss of meaning and social isolation, safety of the lockdown bubble. The findings suggest that the pandemic has accelerated the ‘shrinking world’ effect and created tension in how people with dementia perceive the outside world. Participants felt safe and secure in lockdown but also missed the social interaction, cognitive stimulation and meaningful activities that took place outdoors. As time in lockdown continued, these individuals experienced a loss of confidence and were anxious about their ability to re-engage in the everyday practises that allow them to participate in society. We recommend ways in which the government, communities and organisations might counteract some of the harms posed by this shrinking world.

scholarly journals Non-Pharmacologic Interventions for Caregivers of People With Dementia in Latin America: A Review

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 275-276
Author(s):  
Jose Aravena ◽  
Jean Gajardo ◽  
Laura Gitlin
Keyword(s):  
Quality Of Life ◽  
Latin America ◽  
Depressive Symptoms ◽  
Latin American ◽  
Randomized Clinical Trials ◽  
Social Inequalities ◽  
Neuropsychiatric Symptoms ◽  
People With Dementia ◽  
Person With Dementia

Abstract In a scenario of increasing longevity and social inequalities, Latin-America is an important contributor to the worldwide dementia burden. Caregivers’ health is fundamental to maintain the person with dementia quality of life. However, caregiving is a culturally sensible role that requires tailored solutions. The aim is to synthesize the evidence about non-pharmacologic interventions targeted to caregivers of people with dementia in Latin-American contexts. A comprehensive review of interventions in caregivers and persons with dementia in Latin-American countries was conducted using MEDLINE, Embase, PsycINFO, and Scopus with studies published until January 27th, 2020. Randomized clinical trials of non-pharmacologic interventions targeted to caregivers of people with dementia or dyads where included. Qualitative synthesis of the evidence was presented and analyzed. Overall, 9 pilot RCT were included for the final analysis (6 Brazil, 1 Colombia, 1 Mexico, 1 Perú). The biggest study recruited 69 caregivers and the smallest 13 dyads, with follow-up range of 3-6 months. 5 control groups received at least some other non-standard care type of intervention. 8 were targeted exclusively to caregivers (4 group intervention, 3 individual, and 1 combined) and 1 multicomponent intervention. Most frequent measured outcomes were caregiver’s burden, anxiety, depressive symptoms, and quality of life, and person with dementia neuropsychiatric symptoms. Individual interventions report better results in caregiver parameters such as burden and depressive symptoms and person with dementia neuropsychiatric symptoms. Group interventions presented mixed results. Nevertheless, the quality of evidence was low. There is a critical need to study interventions for caregivers in Latin-American contexts.

scholarly journals Wayfinding in People with Alzheimer’s Disease: Perspective Taking and Architectural Cognition—A Vision Paper on Future Dementia Care Research Opportunities

2021 ◽  
Vol 13 (3) ◽  
pp. 1084
Author(s):  
Saskia Kuliga ◽  
Martin Berwig ◽  
Martina Roes
Keyword(s):  
Perspective Taking ◽  
Spatial Orientation ◽  
Environmental Design ◽  
Spatial Disorientation ◽  
Planning And Design ◽  
People With Dementia ◽  
Starting Point ◽  
Planning Processes ◽  
Person With Dementia ◽  
Underlying Processes

Based on a targeted literature review, this vision paper emphasizes the importance of dementia-sensitive built space. The article specifically focuses on supporting spatial orientation and wayfinding for people living with dementia. First, we discuss types of wayfinding challenges, underlying processes, and consequences of spatial disorientation in the context of dementia of the Alzheimer’s type. Second, we focus on current efforts aimed at planning and evaluating dementia-sensitive built space, i.e., environmental design principles, interventions, evaluation tools, strategies, and planning processes. Third, we use our findings as a starting point for developing an interdisciplinary research vision aimed at encouraging further debates and research about: (1) the perspective of a person with dementia, specifically in the context of wayfinding and spatial orientation, and (2) how this perspective supplements planning and design processes of dementia-sensitive built space. We conclude that more closely considering the perspective of people with dementia supports the development of demographically sustainable future cities and care institutions.

scholarly journals What Are the Benefits of Pet Ownership and Care Among People With Mild-to-Moderate Dementia? Findings From the IDEAL programme

2020 ◽  
pp. 073346482096261
Author(s):  
Carol Opdebeeck ◽  
Michael A. Katsaris ◽  
Anthony Martyr ◽  
Ruth A. Lamont ◽  
James A. Pickett ◽  
...  
Keyword(s):  
Positive Outcomes ◽  
Pet Ownership ◽  
Active Life ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Self Reports ◽  
Key Factor ◽  
Person With Dementia ◽  
The Ideal

Pet ownership has been associated with positive outcomes in many populations, yet the associations with physical and psychological wellbeing in people with dementia remain unclear. The current study used baseline data from 1,542 people living at home with mild-to-moderate dementia from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme. Regression analyses investigated associations of pet ownership and pet care with self-reports of walking, loneliness, depression, and quality of life (QoL). After adjusting for covariates, having any pet was associated with higher likelihood of walking over 3 hr in the last week. Those with a dog and who were involved in its care were less likely to be lonely than those with no dog. Having any pet but no involvement in its care was associated with increased depression and decreased QoL compared with those without a pet. The key factor in the associations was involvement in the care of the pet by the person with dementia.

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