1. ASSESSMENT OF QUALITY OF LIFE IN DEMENTIA: problems, methods and results Michel Ylieff Michel Ylieff Qualidem Research Group University of Liege (ULg) Katholieke Universiteit Leuven (KULeuven) www.qualidem.be

2. 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, well- being, happiness,; At the moment, no agreement about objective and subjective criteria

3. 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

4. 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

5. 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

6. 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)

7. 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

8. 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)

9. Overview on scientific results Qol level in 4 international studies : ADRQL scores

10. 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

11. 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)

12. 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.

13. 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 !

14. Conclusions Tardieu, A. (1848). Manuel de pathologie et de clinique médicales. Paris: Germer Baillière.