ASSESSMENT OF QUALITY OF LIFE IN DEMENTIA:
problems, methods and results
Michel Ylieff
Qualidem Research Group
University of Liege (ULg)
Katholieke Universiteit Leuven (KULeuven)
www.qualidem.be
QoL DEFINITION
• Quality of Life (QoL) in a popular concept.
• Its definition raises numerous questions and its measure comes
up against many methodological problems;
• In a first time, social indicators: education, health, time use,
social interaction, living conditions… ;
• In a second time, subjective indicators: life satisfaction, wellbeing, happiness,;
• At the moment, no agreement about objective and subjective
criteria
QoL DEFINITION
• WHOQoL Group 1993
“ individuals’ perception of their position in life in the
context of the culture and value systems in which they live
and in relation to their goals, expectations, standards and
concerns. It is a broad ranging concept affected in a
complex way by the person’ physical health, psychological
state, level of independence, social relationships, personal
beliefs and their relationship to salient features of their
environment.”
• much different tools for measuring Qol : generic or specific
• focus on QoL related health
QoL DEFINITION
• Several important matters must will be solved:
- Can one measure QoL with only one instrument or with several
instruments ?
- Which must be the respective weight of the objective and subjective
indicators in the measure?
- Which must be the frequency of the assessments ?
• as the beauty is in the eyes of that which looks at, QoL is
assessed better by the person who lives it
QoL in people with Alzheimer disease and related disorders
• studies since 15 years
• at first, assessment of the effects of different treatments
(pharmacological, psychosocial), contributions made by social
and health services and residential management
• numerous specific tools based on Lawton model (1983,1994):
SUBJECTIVE DIMENSION
- Perceived QoL
- Psychological well-being
OBJECTIVE DIMENSION
- Behavioural competence
- Objective environment
QoL in people with Alzheimer disease or related disorders
• two methodologies : self-assessment and proxy-assessment
• self-assessment: influence of cognitive deficits, denial,
anosognosia, behavioural disorders; it is possible in early and
mild stages of disease but beyond ??
• proxy-assessment : many bias related with the evaluator (family
caregiver or formal caregiver)
Overview on scientific results
• 3 main questions :
- Which is the level of QoL of people with Alzheimer disease and
related disorders ?
- Which is the specific influence of disease on QoL ?
- Which is the influence of other factors on QoL ?
• some data resulting from recent researches
Overview on scientific results
• Alzheimer’s Disease Related Quality of Life-ADRQL (Rabins et al., 1999)
Specific proxy-assessment tool
Proxy : family caregiver or formal caregiver
Measures: 47 items - 5 dimensions:
-
A= social interactions (12 items)
B= awareness of self (8 items)
C= feelings and mood (5 items)
D= enjoyment of activities (15 items)
E= response to surroundings (7 items)
 1 score by dimension ( /100) + 1 global score ( /100)
Overview on scientific results
• Qol level in 4 international studies : ADRQL scores
Scores ADRQL Global
Lyket sos et al. (2003) (n=47)
T homas et al. (2006) (n=100)
Missot t en et al. (ét ude présent e) (n=361)
Gonzales-Salvador et al. (2000) (n=120)
100
95
90
85
80
75
70
65
60
55
50
45
40
35
30
25
20
15
10
5
0
A
B
C
Di me nsi ons ADRQ L
D
E
Overview on scientific results
• pronounced reduction in global ADRQL score but not catastrophic;
• variable reduction in the score of the 5 dimensions with the same
switchback profile in the 4 studies
• QoL is better in social interactions , feelings and mood and response to
surroundigs
Overview on scientific results
• Qualidem study : global ADRQL score and cognitive decline, relationship
with the place of residence (at home, n= 159; institutions, n = 296)
QOL dementia group living at home
ADRQL Global Score
QOL dementia group living in an institution
77,4 (12,9)
80
75
71,6 (13,8)
70
65
73,5 (13,8)
66 (17,4)
60 (16,1)
63 (17,5)
60
55
70,8 (18,2)
55,5 (15,4)
56,9 (17,8)
59,2 (17,2)
50
0-3
4-8
9-13
14-18
MMSE Categorization
19-23
Overview on scientific results
•
No direct relationship between cognitive decline and QOL
•
QOL would not appear as better at home with regard to the
institutional context.
•
This report brings about some questioning in regards to:
– the influence of sociodemographic and clinical variables,
– the influence of the evaluators .
Overview on scientific results
• for better measuring the effects of various medical and psychosocial
care;
• importance of a detailed diagnosis and of the treatment of psychological
and behavioural disturbances;
• contribution to the ethical debates: meaning to life, end-of-life, finality
of the care .
• But “what to do ?” is also a paramount question !
Conclusions
• Tardieu, A. (1848). Manuel de pathologie et de clinique médicales. Paris:
Germer Baillière.