Original Study
Quality of Life and Quality of Care for People With Dementia Receiving Long Term Institutional Care or Professional Home Care: The European RightTimePlaceCare Study

https://doi.org/10.1016/j.jamda.2013.09.010Get rights and content

Abstract

Objectives

To explore how quality of life (QoL) and quality of care (QoC) for people with dementia (PwD) vary across 8 European countries; to explore how QoL and QoC for PwD vary across living arrangements; and to assess the association between QoL and QoC.

Design

Cross-sectional survey.

Setting

Institutional long term care and home care in 8 European countries (England, Estonia, Finland, France, Germany, the Netherlands, Spain, and Sweden).

Participants

PwD receiving formal home care but at risk for admission to an institutional setting, and PwD who were recently admitted.

Measurements

QoL was assessed by the PwD and by their best informed proxies using the Quality of Life-Alzheimer's Disease scale (QoL-AD) (range 13–52). QoC was measured using quality of care indicators (eg, the presence of depressive symptoms, the presence of pressure ulcers).

Results

A total of 1123 PwD living at home (mean age 82.2, 63%women) and 791 PwD living in institutional care (mean age 84.1, 74% women) participated. QoL of PwD was most often rated highest in Sweden and England and lowest in Estonia and Spain. No differences in QoL were detected among the settings. For the QoC indicators, no consistent patterns were visible in such a way that certain countries or settings scored “higher” or “lower.” The presence of depressive symptoms was most consistently associated with lower QoL (P ≤ .001).

Conclusion

There is great variation in QoL and QoC scores among European countries and settings. To gain insight into the underlying causes of these differences, more knowledge is needed about the effect of different national health care systems and dementia strategies on QoL and QoC indicators. Depressive symptoms were associated with QoL, and executing longitudinal studies investigating which factors are associated with change in QoL is highly recommended.

Section snippets

Aim

The current study aims to explore QoL and QoC indicators of PwD who are between the margins of care in 8 European countries (ie, those people who are at a “breaking-point” when home care may become insufficient and/or inadequate and admission to institutional nursing care might be necessary). The following research questions were postulated:

  • 1)

    How do QoL and QoC vary for PwD across 8 European countries?

  • 2)

    How do QoL and QoC vary for PwD between home care and ILTC?

  • 3)

    Which indicators of QoC are

Design

This prospective survey is part of a larger study named RightTimePlaceCare (RTPC) that overall aims to improve health and social care services for European citizens with dementia.18 The survey was undertaken in 8 European countries (England, Estonia, Finland, France, Germany, the Netherlands, Spain, and Sweden). Data were collected on QoC and QoL of PwD receiving long term care. Detailed information about the design of the survey is published elsewhere.19

Participants

Two groups were included:

  • (1)

    PwD (and their

Sample Characteristics

A total number of 1223 PwD and their caregivers were included in the home care sample and 791 PwD and their caregivers were included in the ILTC sample. The PwD in the samples were on average 84.1 (ILTC) and 82.2 (home care) years old and both samples contained predominantly women (ILTC: 63.4%, home care setting: 74.0%). Compared with PwD living in ILTC, PwD living at home were more often married (P < .001), had a higher cognitive status (P < .001), were more independent in their ADLs (P <

Discussion

Our results show 4 key findings: First, QoL of PwD was most often rated highest in Sweden and England and lowest in Estonia and Spain. Second, QoL ratings of neither PwD living at home nor those living in institutional care approached the minimum or the maximum score of the QoL-AD, and the ratings were comparable with other studies that include PwD living at home or in ILTC.41, 42, 43, 44 Therefore, QoL of the study sample could be considered “moderate.” Third, for the QoC indicators, no clear,

Conclusion and Recommendations

Our study showed clear country differences in QoL ratings and variation between the countries regarding QoC indicators. Some countries scored high on some indicators but low on others. Dementia care is very complex and simplification by, for example, comparing indicators in an explorative way does not result in conclusive statements about the whole QoC. To gain insight into the underlying causes of these country differences, more knowledge is needed about the effect of the different national

References (54)

  • A. Wimo et al.

    World Alzheimer Report 2010

    (2010)
  • E. Moniz-Cook et al.

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

    Aging Ment Health

    (2008)
  • P.V. Rabins et al.

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

    Int Psychogeriatr

    (2007)
  • A. Sixsmith et al.

    Quality of life and dementia

  • G. Onder et al.

    Assessment of nursing home residents in Europe: the Services and Health for Elderly in Long TERm care (SHELTER) study

    BMC Health Serv Res

    (2012)
  • M. Knapp et al.

    Dementia: International Comparisons. Summary Report for the National Audit Office

    (2007)
  • OECD

    The OECD Health Project. Long-term Care for Older People

    (2005)
  • J. Hoe et al.

    Quality of life in dementia: Care recipient and caregiver perceptions of quality of life in dementia: the LASER-AD study

    Int J Geriatr Psych

    (2007)
  • P. Missotten et al.

    Impact of Place of residence on relationship between quality of life and cognitive decline in dementia

    Alz Dis Assoc Dis

    (2009)
  • T. Fahey et al.

    Quality of care for elderly residents in nursing homes and elderly people living at home: Controlled observational study

    BMJ

    (2003)
  • A. Selwood et al.

    Quality of life in dementia—a 1-year follow-up study

    Int J Geriatr Psych

    (2005)
  • J.E. Gaugler et al.

    Predictors of nursing home admission for persons with dementia

    Med Care

    (2009)
  • R.G. Logsdon et al.

    Assessing quality of life in older adults with cognitive impairment

    Psychosom Med

    (2002)
  • Eur-Lex. Access to European Law. Decision No 1786/2002/EC of the European Parliament and of the Council of 23 September...
  • EU-Projekt: RIGHTTIMEPLACECARE. Available at: http://righttimeplacecare.eu/. Accessed March...
  • H. Verbeek et al.

    A European study investigating patterns of transition from home care towards institutional dementia care: The protocol of a RightTimePlaceCare study

    BMC Public Health

    (2012)
  • D.W. Molloy et al.

    Reliability of a Standardized Mini-Mental State Examination compared with the traditional Mini-Mental State Examination

    Am J Psychiatry

    (1991)

    • Cited by (124)

    • A national survey on health-related quality of life for people with dementia in residential long-term care institutions

      2023, Journal of the Formosan Medical Association

    • The effects of a Namaste care program on quality of life: A pilot study in Iranian women with late-stage Alzheimer's disease

      2021, Geriatric Nursing

    • Prevention and reduction of involuntary treatment at home: A feasibility study of the PRITAH intervention

      2020, Geriatric Nursing

    • Health-Related Quality of Life among Older Adults with Dementia Living in Vietnamese Nursing Homes

      2024, International Journal of Environmental Research and Public Health

    • Physical restraints in nursing homes: A qualitative study with multiple stakeholders

      2024, Nursing Open

    • Physical restraints applied to people diagnosed with dementia in home care from the perceptions of family caregivers: A qualitative study in China

      2023, Journal of Psychiatric and Mental Health Nursing
    View all citing articles on Scopus

    This study was funded by the European Commission within the Seventh Framework Program (project 242153).

    The authors declare no conflict of interest.

    Ethical approval was obtained from country-specific legal authorities for research on human beings.

    1

    The RightTimePlaceCare Consortium partners and their affiliations are listed in Appendix 1.

    View full text
    Copyright © 2014 American Medical Directors Association, Inc. Published by Elsevier Inc. All rights reserved.