QUALITY OF LIFE IN THE CONTEXT OF DEMENTIA CARE IN ASSISTED LIVING: THE LIVED EXPERIENCE

BackgroundAn integrated multidisciplinary approach to dementia is often recommended but has rarely been evaluated.AimsTo evaluate the clinical effects of an integrated multidisciplinary diagnostic facility for psychogeriatric patients.MethodPatients suspected of having complex psychogeriatric problems were randomly allocated to the intervention (n=137) or to treatment as usual (n=93). They were assessed at baseline, and at 6 months and 12 months follow-up by means of personal interviews with the patient's proxy. The primary outcome was health-related quality of life, assessed using the visual analogue scale (VAS) of the EuroQd measure, EQ-5D.ResultsHealth-related quality of life had improved at 6 months in the intervention group, whereas that of the control group had decreased. Furthermore, more patients in the intervention group experienced a clinically relevant improvement of 10 points or more on the VAS at both follow-up measurements.ConclusionsAn integrated multidisciplinary approach improves dementia care.

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The effects of dementia care mapping on nursing home residents’ quality of life and staff attitudes: design of the quasi-experimental study Leben-QD II

BMC Geriatrics ◽

10.1186/1471-2318-13-53 ◽

2013 ◽

Vol 13 (1) ◽

Cited By ~ 11

Author(s):

Margareta Halek ◽

Martin Nikolaus Dichter ◽

Tina Quasdorf ◽

Christine Riesner ◽

Sabine Bartholomeyczik

Keyword(s):

Quality Of Life ◽

Experimental Study ◽

Nursing Home ◽

Nursing Home Residents ◽

Dementia Care ◽

Staff Attitudes ◽

Quasi Experimental ◽

Care Mapping ◽

Dementia Care Mapping

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Qualitative research to explore the symptoms and impacts experienced by children with ulcerative colitis

Journal of Patient-Reported Outcomes ◽

10.1186/s41687-020-00238-1 ◽

2020 ◽

Vol 4 (1) ◽

Author(s):

Jason A. Randall ◽

Aiste Guobyte ◽

Laure Delbecque ◽

Louise Newton ◽

Tara Symonds ◽

...

Keyword(s):

Quality Of Life ◽

Ulcerative Colitis ◽

Lived Experience ◽

Thematic Analysis ◽

Gastrointestinal Disease ◽

The United States ◽

Self Report ◽

Related Quality ◽

High Level

Abstract Background Ulcerative Colitis (UC) is a chronic gastrointestinal disease that often presents during one’s most productive years and is characterized by colon inflammation. Key symptoms and impacts in adults are well-known, however, experiences among pediatric populations have not been well documented. The purpose of this study was to understand the health-related quality of life and symptomatic experience of children (2–11 years) living with UC. Methods Qualitative, semi-structured face-to-face interviews were conducted. Children aged 5–11 years were interviewed, as well as their parents/caregivers in matched dyads. Parents/caregivers of children aged2–4 years were interviewed within a parent/caregiver-only cohort. All participants were recruited from the United States. Interviews were coded using thematic analysis. Results Key symptoms and impacts reflecting the lived experience of UC were identified following thematic analysis, generating a conceptual model. A total of 32 participants (20 parents/caregivers and 12 children) were interviewed. Results identified a substantial burden of UC in children. All children and parents/caregivers reported that they/their child experienced stomach/abdominal pain. Other symptoms discussed by over 75% were blood in stool, diarrhea/loose stools, stool urgency, incomplete evacuation, stool frequency, and feeling gassy/passing gas. The most frequently discussed impacts by over 75% of participants were on emotional and practical aspects, seriously affecting quality of life. Conclusions Qualitative analysis of the interviews identified a substantial burden of UC on children, with a profound impact on their lives. The symptomatic experience is reflective of adults and adolescents. A high level of agreement between parents/caregivers and children was demonstrated regarding the perception of the presence or absence of symptoms. Children aged 8–11 years showed higher levels of agreement with parents/caregivers than did younger children, indicating appropriateness of self-report of symptom data in the 8–11 years age group.

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System for Assistance on Bath of Bedridden Elderly People

Volume 3: Biomedical and Biotechnology Engineering ◽

10.1115/imece2014-38711 ◽

2014 ◽

Cited By ~ 2

Author(s):

Karolina Bezerra ◽

José Machado ◽

Vitor Carvalho ◽

Filomena Soares ◽

Bruno Silva ◽

...

Keyword(s):

Quality Of Life ◽

Elderly People ◽

Conceptual Design ◽

Assisted Living ◽

Ambient Assisted Living ◽

The Other ◽

Mechatronic System ◽

Rehabilitation Centers ◽

Aged Person

From Ambient Assisted Living (AAL) perspective it is important to have information regarding the type of care needed by bedridden elderly people (BEP) living in their homes, in order to support independence, autonomy and maximize their quality of life. Some basic tasks as eating, taking a bath and the hygiene cares may be difficult to execute, regarding that almost always the main caregiver is the other element of the couple (husband or wife). Following this trend, the development of mechatronic devices is of upmost importance in creating solutions to facilitate these tasks. This paper presents the conceptual design of a mechatronic system especially devoted to the assistance during the bath of BEP. Issues as reducing the number of caregivers to only one to assist the bath and reducing the system’s handling complexity (because most of the time it will be used by an aged person) are considered. Visits to rehabilitation centers and hospitals, and respective working meetings, are considered in the development of the proposed mechatronic system.

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Meaningful Engagement Among Assisted Living Residents With Dementia: Successful Approaches

Journal of Applied Gerontology ◽

10.1177/0733464821996866 ◽

2021 ◽

pp. 073346482199686

Author(s):

Candace L. Kemp ◽

Alexis A. Bender ◽

Joy Ciofi ◽

Jennifer Craft Morgan ◽

Elisabeth O. Burgess ◽

...

Keyword(s):

Quality Of Life ◽

Qualitative Study ◽

Assisted Living ◽

Care Partners ◽

Meaningful Engagement ◽

Care Practices ◽

The Moment ◽

Record Review

Meaningful engagement is an important dimension of quality of life and care for persons living with dementia, including the growing number who reside in assisted living communities. This report presents preliminary findings from an ongoing qualitative study aimed at identifying best care practices to create and maintain meaningful engagement among persons with dementia. Over a 1-year period, we conducted interviews, residents’ record review, and participant observations in four diverse care communities. Our analysis identified four approaches that successfully promote meaningful engagement: (a) knowing the person, (b) connecting with and meeting people where they are, (c) being in the moment, and (d) viewing all encounters as opportunity. Incorporation of these approaches in care routines and adoption by all care partners can promote meaningful engagement, including during crises such as COVID-19.

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Healing at the End of Life: The Voice of the Patient

International Journal of Whole Person Care ◽

10.26443/ijwpc.v1i1.53 ◽

2014 ◽

Vol 1 (1) ◽

Author(s):

Cory Ingram

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Lived Experience ◽

End Of Life ◽

Life Story ◽

Patient Centered ◽

Whole Person ◽

Centered Care ◽

The Impact

In palliative care we have the privilege to care for seriously ill people and their families. Some people value capturing their life story or illness journey on film. I have been fortunate to have been invited into the lives of many people close the end of life for a heartfelt conversation.On an interactive iPad incorporated in the poster, the recorded narrative of patients and one bereft spouse the poster audience will experience the lived experience of people close to the end of life as they reflect on their lives. The narratives will demonstrate how each lived with a new found improved quality of life in the face of increasing symptoms, declining functioning and the approaching end of life; otherwise known as healing. Topics of healing and quality of life, patient-centered care, dignity, human development, spirituality and love will be the focus of their stories. The stories lay bare the very practical, emotional, existential, and personal experience central to our provision of whole person care through palliative care. The poster audience will experience a renewed sense of the impact of a dedicated approach to whole person care as experienced through those on the receiving end.

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