Elsevier

Geriatric Nursing

Volume 33, Issue 3, May–June 2012, Pages 204-216
Geriatric Nursing

Feature Article
Dementia-Specific Quality of Life Instruments and Their Appropriateness in Shared-Housing Arrangements—A Literature Study

https://doi.org/10.1016/j.gerinurse.2012.01.001Get rights and content

Shared-housing arrangements (SHA) in Germany are a specific type of housing arrangement that belongs to the global concept of small-scale living arrangements. This caring approach comprises characteristics of both home and institutional care for persons with dementia. To evaluate the impact of SHA on the quality of life (QoL) of residents, an appropriate setting- and dementia-specific QoL instrument is needed. This article aims to identify QoL instruments that relate to the core domains of SHA. After a comprehensive literature review, existing dementia-specific QoL instruments were evaluated to determine whether any have been specifically designed for or applied in SHA. Additionally, each domain of the instruments was matched with the core domains of SHA. None of the existing instruments was identified as having been developed for SHA. Matching of the instrument domains with the SHA core domains leads to the conclusion that Quality of Life-Alzheimer’s Disease, Dementia Quality of Life, Alzheimer Disease-Related Quality of Life, and QUALIDEM are adequate instruments for measuring the dementia-specific QoL of persons living in SHA. For the first time, a basis has been created for valid QoL evaluations of residents with dementia living in SHA. The 4 identified instruments are considered applicable in SHA. Conducting a performance test and evaluating further attributes according to the Scientific Advisory Committee of the Medical Outcomes Trust (e.g., reliability and validity) will further elucidation of the appropriateness of the instruments for SHA.

Section snippets

Alternative Care Arrangements

Small-scale, homelike care arrangements have been developed worldwide as an alternative to nursing homes. This approach began in Sweden with group living in 1985.4 Today, the concept is established in care arrangements such as group homes in Japan,5 assisted living facilities (ALF)6 or green houses7 in the United States, small-scale living arrangements8, 9 in the Netherlands, or the German shared-housing arrangements (SHA).10 All of these approaches have in common that they depart from

Methods

A comprehensive literature review was conducted to identify all instruments that are used to assess the QoL of dementia patients. The following search terms were applied: “dementia” or “demenz” or “Alzheimer” and “quality of life” or “Lebensqualität” in “all fields” (see Figure 1). The literature review included the following databases: CINAHL, Embase, Gerolit, PsycInfo, and PubMed. The search strategy is presented in Figure 1.

To be included in this review, articles had to be published in

Results

Accessed from the databases were 8,357 manuscripts, including 7,122 duplications (see Figure 1). The most common reason for excluding publications was that the search terms were mentioned in the article, but no QoL evaluation was conducted. Altogether, 184 papers (published between 1996 and 2010) were included in the study and are the basis for the findings presented in this publication, and 19 dementia-specific QoL instruments were identified. Because the Byrne-MacLean Quality of Life Index54

Discussion

QoL is commonly considered a primary outcome parameter in dementia care, even though the methodological discourse on QoL measurement is far from being completed.56 Predominantly standardized questionnaires are being used, even though qualitative approaches are in use as well.57 Both approaches are generally accepted in research and practice and are applied, for example, by health care providers to evaluate the services they provide or in research projects. However, without instruments adapted

Acknowledgments

This publication is a part of a doctoral thesis,62 which is embedded in the WGQual project. This project is supported by a grant from the German Federal Ministry of Education and Research. The Ethics Committee of the German Society of Nursing Sciences has approved the study. The first author is a doctoral candidate in the PhD program “Multimorbidity in Old Age” at the Charité-Universitätsmedizin Berlin, which is funded by the Robert Bosch Foundation.

JOHANNES GRÄSKE, RN, Dipl., Pflegewirt (FH), Charité-Universitätsmedizin Berlin, Institute of Medical Sociology, and Alice Salomon University of Applied Sciences Berlin, Germany.

References (62)

  • T. Fischer et al.

    Ambulant betreute Wohngemeinschaften für alte, pflegebedürftige Menschen—Merkmale, Entwicklungen und Einflussfaktoren. [Shared-housing arrangements for care-dependent older persons—characteristics, development and drivers]

    Pflege

    (2011)
  • H. Verbeek et al.

    Small, homelike care environments for older people with dementia: a literature review

    Int Psychogeriatr

    (2009)
  • Wolf-Ostermann K, Worch A, Fischer T, et al. Health outcomes and quality of life of residents of shared-housing...
  • E. Reitinger et al.

    Leben und Sterben in Wohngemeinschaften für Menschen mit Demenz. Eine explorative qualitative Studie. [Living and dying in community based housing for people with dementia. An exploratory quality study]

    Z Gerontol Geriatr

    (2010)
  • E. Sikorska-Simmons

    Development of an instrument to measure resident satisfaction with assisted living

    J Applied Gerontol

    (2001)
  • M.P. Calkins

    Creating successful dementia care settings

    (2001)
  • K. Day et al.

    The therapeutic design of environments for people with dementia

    Gerontologist

    (2000)
  • A. Qaseem et al.

    Current pharmacologic treatment of dementia: a clinical practice guideline from the American College of Physicians and the American Academy of Family Physicians

    Ann Int Med

    (2008)
  • E. Moniz-Cook et al.

    A European consensus on outcome measures for psychosocial intervention research in dementia care

    Aging Ment Health

    (2008)
  • L. Volicer

    Goals of care in advanced dementia: quality of life, dignity and comfort

    J Nutr Health Aging

    (2007)
  • P.V. Rabins et al.

    Measuring quality of life in dementia: purposes, goals, challenges and progress

    Int Psychogeriatr

    (2007)
  • T.P. Ettema et al.

    A review of quality of life instruments used in dementia

    Qual Life Res

    (2005)
  • E. Adler et al.

    Reliability and validity of the dementia quality of life measure in nursing home residents

    West J Nurs Res

    (2010)
  • D. Algase et al.

    Need-driven dementia-compromised behavior: an alternative view of disruptive behavior

    Am J Alzheimer Dis

    (1996)
  • G. Naglie

    Quality of life in dementia

    Can J Neurol Sci

    (2007)
  • C. Selai

    Assessing quality of life in dementia

    Med Care

    (2001)
  • R. Trigg et al.

    How can we best assess the quality of life of people with dementia? The Bath Assessment of Subjective Quality of Life in Dementia (BASQID)

    Gerontologist

    (2007)
  • M. Brod et al.

    Conceptualization and measurement of quality of life in dementia: the Dementia Quality of Life Instrument (DQoL)

    Gerontologist

    (1999)
  • D.L. Streiner et al.

    Health Measurements Scales—a practical guide to their development and use

    (2003)
  • C.J.M. Schölzel-Dorenbos et al.

    Evaluating the outcome of interventions on quality of life in dementia: selection of the appropriate scale

    Int J Geriatr Psychiatry

    (2007)
  • Q.M. Samus et al.

    Correlates of caregiver-rated quality of life in assisted living: The Maryland Assisted Living Study

    J Gerontol Ser B Psychol Sci Soc Sci

    (2006)

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    JOHANNES GRÄSKE, RN, Dipl., Pflegewirt (FH), Charité-Universitätsmedizin Berlin, Institute of Medical Sociology, and Alice Salomon University of Applied Sciences Berlin, Germany.

    THOMAS FISCHER, RN, PhD, MPH, Evangelische Hochschule Dresden, University of Applied Sciences, Dresden, Germany.

    ADELHEID KUHLMEY, PhD, Medizinische Soziologin, Charité-Universitätsmedizin Berlin, Institute of Medical Sociology, Berlin, Germany.

    KARIN WOLF-OSTERMANN, PhD, Dipl., Statistikerin, Alice Salomon University of Applied Sciences Berlin, Germany.

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