People with dementia and their relatives: personal experiences of Alzheimer's and of the provision of care

Aggarwal, Neeru; Vass, Antony A.; Minardi, Henry; Ward, Richard; Garfield, Cydonie; Cybyk, B

doi:10.1046/j.1365-2850.2003.00550.x

Cited by 84 publications

(110 citation statements)

References 15 publications

(19 reference statements)

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“…Only in the study of Carroll et al (2005) was a satisfaction survey used and Whitlach et al (2005) applied an interview with structured response options. Aggarwal et al (2003), in addition to semi-structured interviews, also conducted document analyses, observation and filming to elicit views and feelings and argued that the use of these different methods was effective depending on individual preferences and on severity of dementia. On the basis of these nine articles some quality indicators and specific aspects important in relation to quality of care can be specified:…”

Section: Xmentioning

confidence: 99%

How to evaluate quality of care from the perspective of people with dementia: An overview of the literature

et al. 2010

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This article reviews the literature on the inclusion of the perspective of people with dementia when evaluating quality of care. The few identified relevant studies suggest that there is consensus that people with mild to moderate dementia are able to talk about their experiences with care with clarity and insight. A minimum level of orientation to place, attention and language skills in the person with dementia are important for a successful subjective evaluation. On the basis of the relevant literature, we additionally formulated practical guidelines useful when one aims to collect information with interviewing, self-administered questionnaires, or focus groups from people with dementia to assess quality of care. In people with mild to moderate dementia, assessment of quality of care can best be done by individual interviewing and focus groups. Further research is needed to ascertain what people with dementia find important in relation to quality of care.

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Section: Xmentioning

confidence: 99%

How to evaluate quality of care from the perspective of people with dementia: An overview of the literature

et al. 2010

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“…This is so even though dementia of the Alzheimer's type is the most prevalent dementia among people over the age of 65. A wealth of information about the biomedical aspects of the disease stands in counterpoint to the lack of systematic inquiry around the lived experiences of people with AD (Aggarwal et al, 2003;Stocker, 2002). This research contributes to knowledge about AD by focussing on the experiences of people who have recently been clinically diagnosed with possible or probable AD.…”

Section: Introductionmentioning

confidence: 99%

Experiences in early stage Alzheimer's disease: Understanding the paradox of acceptance and denial

MacQuarrie¹

2005

Aging & Mental Health

106

127

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A wealth of information about the biomedical aspects of Alzheimer's disease (AD), the most prevalent dementia among people over age 65, stands in counterpoint to the lack of systematic inquiry around the lived experiences of people with AD. Thirteen (four women, nine men) people, recently diagnosed with early stage AD, participated in this 6-month longitudinal study. This paper reports on AD participant's interviews which focussed on their experiences of AD symptoms, relationships with family and friends, and thoughts about the future. The transcribed interviews, analysed using methodological hermeneutics, revealed a constitutive theme of agency versus objectification and explained the paradox of why people with AD use both acceptance and denial when speaking about their experiences. Participants simultaneously acknowledged and resisted aspects of their disease in order to maintain agency in the face of cognitive losses. Acknowledgement was expressed through the themes involving acceptance of the disease and its symptoms, expression of feelings about the disease, and strategies to cope with the symptoms. Resistance was expressed in themes involving denial, minimization, normalization, and reminiscence about achievements and experiences of competence. Longitudinal analyses of the narratives indicated themes held across time. This research contributes to understanding how people live with early stage AD. Living with AD should not be described as either denial or acceptance, but rather as a paradox of understanding that includes both acknowledgement and resistance.

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“…Qualitative studies on caring generally, and caring for a loved one with Alzheimer's disease in particular, range from issues as general as 'presencing' and supporting (Chinn, 1991;Beck, 2001), comforting (Morse, 2000) and hope-giving (Farran, Herth & Popovitch, 1995), to issues specific to caring for people with Alzheimer's disease, such as carers' changed understandings over time (Phinney, 2002), their concerns to advocate for the ''personhood'' and dignity of the loved one (Ashworth & Ashworth, 2003) and their perceptions of the quality and nature of external care provision (Aggarwal, Vass, Minardi, Ward, Garfield & Cybyk, 2003).…”

Section: Introductionmentioning

confidence: 99%

Caring for a partner with Alzheimer's disease: Intimacy, loss and the life that is possible

Todres

Galvin

2006

International Journal of Qualitative Studies on Health and Well

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In this article, a phenomenological study, we aim to contribute to a deeper understanding of caring for a partner with advancing memory loss. Our particular concern is to communicate the findings in evocative and empathic ways. Such an approach is based on a wish to complement the phenomenological rigor of Giorgi's ''scientific concern'' with a ''communicative concern.'' We draw attention to the aesthetic dimensions of phenomenological description to achieve both ''structure'' and ''texture'' in the way findings are communicated. The methodology is thus complemented by a further interpretive phase after presentation of each of six general structures, and characterized as 'embodied interpretation'. This discipline is based on Gendlin's experiential phenomenology and the practice of ''focusing.'' We suggest that by engaging with the kind of descriptions and interpretations offered, fellow carers, professionals, family and support groups could be better equipped to understand the issues discussed.

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People with dementia and their relatives: personal experiences of Alzheimer's and of the provision of care

Cited by 84 publications

References 15 publications

How to evaluate quality of care from the perspective of people with dementia: An overview of the literature

How to evaluate quality of care from the perspective of people with dementia: An overview of the literature

Experiences in early stage Alzheimer's disease: Understanding the paradox of acceptance and denial

Caring for a partner with Alzheimer's disease: Intimacy, loss and the life that is possible

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