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Autonomy

Effects of supporting patients with dementia: A study with dyads

Purpose: This study aimed to examine the factors associated with the development of higher burden in informal caregivers of patients with dementia, using dyadic data.; Design and Methods: Seventy-two dyads of patients with dementia and their informal caregivers were assessed, the former in terms of behavioral-psychological symptoms and autonomy, the latter in terms of burden and individual needs.; Findings: Caregivers at risk for developing higher burden are those who are female, whose care recipient present psychiatric symptoms and lower a

Mon, 02/10/2020 - 15:34

Methods for involving people living with dementia and their informal carers as co-developers of technological solutions

This paper reports on the research methods used in five different projects aimed at supporting people living with dementia in their everyday lives and activities of daily living. In all five projects, people living with dementia and their informal carers were involved. Applied methods ranged from passive involvement in the form of observations to very active involvement consisting of consultation rounds and think-aloud sessions.

Thu, 10/10/2019 - 11:58

Reciprocity, Autonomy, and Vulnerability in Men's Experiences of Informal Cancer Care

Men are increasingly participating, and acknowledging their roles, as informal . Yet, there has been comparatively little exploration of their experiences therein, especially within the context of cancer care. Here, drawing on semi-structured qualitative interviews with 16 Australian male carers for a relative with cancer, and using constructivist grounded theory, we explore their experiences of informal caring.

Tue, 09/10/2019 - 15:50

Community Treatment Orders and Supported Decision-Making

This paper presents findings from an interdisciplinary project undertaken in Victoria, Australia, investigating the barriers and facilitators to supported decision-making (SDM) for people living with diagnoses including schizophrenia, psychosis, bipolar disorder, and severe depression; family members supporting them; and mental health practitioners, including psychiatrists. We considered how SDM can be used to align Australian laws and practice with international human rights obligations.

Mon, 09/09/2019 - 11:16

The imperative of caring for the dependent elderly person

This text presents an overview of aging in Brazil and information that highlights the need to create instruments to deal with the exponential increase of the elderly population, particularly those who lose their physical, cognitive, mental/emotional, and social autonomy. Examples of public policies created by European countries, notably Spain, show how they act to protect the most vulnerable individuals and provide support to their families, especially to the informal caregivers.

Wed, 06/26/2019 - 12:05

Beyond care burden: associations between positive psychological appraisals and well-being among informal caregivers in Europe

Purpose: The burden of caring for a family member or friend can have a negative impact on caregiver health and well-being, yet caring can also have positive consequences. Understanding the factors that may enhance caregiver well-being is merited.; Methods: We used data gathered from the European Quality of Life Survey (EQLS).

Tue, 06/25/2019 - 12:28

Attitudes Toward Family Involvement in Cancer Treatment Decision Making: The Perspectives of Patients, Family Caregivers, and Their Oncologists

Background To investigate how cancer patients, family caregiver, and their treating oncologist view the risks and benefits of family involvement in cancer treatment decision making (TDM) or the degree to which these perceptions may differ. Patients and Methods A nationwide, multicenter survey was conducted with 134 oncologists and 725 of their patients and accompanying caregivers. Participant answered to modified Control Preferences Scale and investigator-developed questionnaire regarding family involvement in cancer TDM.

Thu, 03/28/2019 - 14:51

Decision-making on behalf of people living with dementia: how do surrogate decision-makers decide?

Background For people living with dementia, the capacity to make important decisions about themselves diminishes as their condition advances. As a result, important decisions (affecting lifestyle, medical treatment and end of life) become the responsibility of someone else, as the surrogate decision-maker. This study investigated how surrogate decision-makers make important decisions on behalf of a person living with dementia.

Mon, 03/25/2019 - 12:28

Advance Directives as Support of Autonomy for Persons with Dementia? A Pilot Study among Persons with Dementia and Their Informal Caregivers

Background: Advance directives could be an important instrument to support a person's will once he/she is not able to consent anymore - if composed competently. A survey was conducted to identify the level of knowledge concerning possibilities and limits of advance directives.; Methods: The study was conducted as part of the Bavarian Dementia Survey (BayDem). Data were collected from January 2014 to December 2015 by structured face-to-face interviews.

Tue, 01/22/2019 - 13:36

'Deferred or chickened out?' Decision making among male carers of people with dementia

In this paper, we present new insight into the ways in which carers of people with dementia make decisions in the context of seemingly declining autonomy and freedom associated with the condition. Our focus is on the ways in which carers reflect on decisions made in different temporal contexts (day-to-day, medium- and long term). Drawing on data and analysis from in-depth interviews with male informal carers of women with mild to moderate dementia living in the northwest of England, we outline how the decision-making process is dependent on the temporality of the decisions.

Thu, 07/20/2017 - 15:22

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