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Quality of Life in Dementia Patients and Their Proxies: A Narrative Review of the Concept and Measurement Scales

  • C. J. M. Schölzel-Dorenbos
  • P. F. M. Krabbe
  • M. G. M. Olde Rikkert

Abstract:

Dementia profoundly affects quality of life of patients as well as family and caregivers. Quality of life (QOL) refers to people’s emotional, social and physical wellbeing, and their ability to function in daily life. QOL measures attempt to evaluate directly the impact of dementia or interventions on people’s ability to function in life. Besides this global conceptualization of QOL there is a growing field of research on QOL measures focused on the measurement of health related quality of life (HRQL), i.e., a person’s satisfaction or happiness with domains of life insofar as they affect or are affected by the dementia. HRQL can be distinguished from QOL in that it concerns itself primarily with those factors that fall under the purview of health care providers and health care systems ( QOL/HRQL). QOL measurement provides a subjective evaluation that captures benefits and harms of interventions not detected by standard clinical outcomes. Three methods of QOL assessment are available: self-report, proxy-report and  proxy rating by direct observation of behavior assumed to be related to QOL. Acknowledging the problem of potential bias of proxy-reports, self-report methods are preferable if possible. If not, observational methods by an uninvolved professional are an acceptable alternative.

By content, QOL measurement scales also can be categorized into three groups: generic, domain-specific or disease-specific. Generic scales can be divided in health profiles and utility measurements. Health profiles classify subjects with respect to a broad spectrum of QOL domains, thus producing a descriptive profile from several health domains. Generic utility measures enable cost-utility analysis. Cost is measured in monetary units. Benefit is usually expressed in quality-adjusted life years (QALYs) or disability-adjusted life years (DALYs). Domain-specific questionnaires rate QOL on circumscript areas, such as mobility, physical restrictions, autonomy or mastery. Dementia-specific measures probably have a higher grade of  responsiveness, i.e., a higher ability to identify changes that relate to the natural course of dementia or treatment interventions.

QOL measurement methods in dementia are still facing important challenges. Measurement properties encompass reliability, validity and responsiveness. Responsiveness, the ability to detect relevant change over time in health status, is an essential property of outcome measures for intervention studies and still largely unclear in dementia research. Another important item is response shift, referring to the psychological adaptation of perception of QOL following a change in health status (e.g., progress of the dementia), which should also be addressed adequately. Next to the differential effects of dementia on the patients themselves, caring for people with dementia is often associated with increase in distress and decrease in mental health and wellbeing, thus affecting QOL of proxies as well. Therefore, despite the remaining scientific challenges in the field, it is highly recommendable to include QOL assessment of patients and proxies as endpoints in all dementia and MCI intervention trials.

Keywords

Response Shift Minimal Important Difference Dementia Patient Utility Measure Proxy Rating 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

List of Abbreviations:

AAI

Activity and Affect Indicators of quality of life

AD

Alzheimer’s disease

ADR-QL

Alzheimer’s Disease health-Related Quality of Life scale

BASQID

Bath Assessment of Subjective Quality of Life in Dementia

CBS

Cornell-Brown Scale for quality of life in dementia

CEA

cost-effectiveness analysis

CUA

cost-utility analysis

DALY

disability-adjusted life years

DCM

Dementia Care Mapping

DHP

Duke Health Profile

DQOL

Dementia Quality of Life scale

DSDAT

Discomfort Scale-Dementia of Alzheimer Type

EQ-5D

European Quality of life - 5 Dimensions

EQ-6D

European Quality of life - 6 Dimensions

HRQL

health related quality of life

HSQ

Health Status Questionnaire

HUI

Health Utilities Index

MCI

Mild Cognitive Impairment

MID

minimal important difference

NHP

Nottingham Health Profile

PDS

Progressive Deterioration Scale

PRO

patient reported outcome

PTO

person trade-off

PWB-CIP

Psychological Well-Being in Cognitively Impaired Persons

QALY

quality-adjusted life year

QOL

quality of life

QOL-AD

Quality of Life-Alzheimer’s Disease scale

QOL AS

Quality of Life Assessment Schedule

QOL-D

Quality of Life for Dementia

QUALID

Quality of Life in Late-Stage Dementia scale

QWB

Quality of Well-Being scale

RI

responsiveness index

SEM

structural equation modeling

SEIQOL

Schedule for the Evaluation of Individual Quality of Life

SF-6D

SF-36 revised into a six-dimensional health state classification: SF-36, Medical Outcomes Study 36-item Short Form Health Survey

SF-12

Medical Outcomes Study 12-Item Short Form Health Survey

SG

standard gamble

SIP

Sickness Impact Profile

TTO

time trade-off

VAS

visual analogue scale

WHOQOL 100

World Health Organization Quality of Life 100

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Copyright information

© Springer Science+Business Media LLC 2010

Authors and Affiliations

  • C. J. M. Schölzel-Dorenbos
    • 1
  • P. F. M. Krabbe
    • 1
  • M. G. M. Olde Rikkert
    • 1
  1. 1.Multidisciplinary Memory Clinic Slingeland Hospital/Alzheimer Centre NijmegenUniversity Medical Centre NijmegenNashvilleThe Netherlands

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