Why discrepant evaluations
manifest in ratings of QoL in
dementia
Kritika Samsi, Vanessa Lawrence, Joanna Murray, Sube Banerjee
PhD student, Mental Health & Ageing,
Health Services & Population Research Department, Institute of Psychiatry
Funded by: Guy’s and St Thomas’ Charitable Foundation
Background
•Dementia affects approx 24.3 million people worldwide; 4.6 million new
cases every year
•Interest in quality of life led to development of quantitative outcome
measures
•Discrepant evaluations between self-rated and carer-rated QoL commonly
reported in studies of dementia
Reasons for this are speculated and implications investigated, mainly in
terms of which account is superior and, therefore, more ‘reliable’
•Independent qualitative studies highlight variety of ways people with
dementia and carers conceptualize QoL
•Little integration of methods/studies to obtain a clearer understanding of
discrepant evaluations in QoL and what it means
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Study objectives
•To measure relationship between self-rated and carerrated QoL in dementia
•To explore experience of QoL as perceived by people
with dementia and their carers?
•What influences the evaluations that people with
dementia and carers make?
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Research design
•Mixed method study was designed as part of a larger study of change in QoL in
dementia
•Study 1: assessment of self-rated and carer-rated QoL and other clinical variables
at 2 time points, 6 months apart
• Correlation studies to determine consistency between perspectives
•Study 2: qualitative study using Interpretative Phenomenological Analysis to gain
in-depth understanding of experience of QoL
• Interviews included experience of change, management of change
•Ultimately to investigate the relationship between these 2 studies and integrate
the findings from both studies to explicate the reasons for discrepant evaluations
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Participants
•Study 1:
@ BL people with dementia 121, carers 121
@ FU people with dementia 77, carers 75
No sig. differences between drop-outs and those retained
•Study 2:
•Homogenous purposive sample selected from Study 1 participants to
reflect “information rich” cases
•Participant characteristics
• 9 people with dementia: 4 women, 5 men
• 9 carers: 4 children, 5 spouses
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Results from Study 1
Measures
correlated
•Statistically significant poor
correlation between self-rated
and carer-rated QoL on
DEMQOL & DEMQOL Proxy and
QOLAD & QOLAD Carer at both
time points
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DEMQOL
DEMQOL
Proxy
Correlation at Correlation at
BL
FU
& 0.287 (sig.
0.01)
0.437 (sig.
0.07)
QOLAD
0.346 (sig.
Patient
& 0.05)
QOLAD Carer
0.504 (sig.
0.01)
Findings from Study 2
People with dementia and carers described QoL in different ways
•Carers reported on their relative or friend’s QoL in terms of their current health condition
Interviewer: To start with, can you tell me about your mother-in-law.
Edith (caring for her mother-in-law): What now? What she’s like now? Or what she was like?
Interviewer: As you wish.
Edith (caring for her mother-in-law): She is hard. She has lost her personality, but sometimes it
comes back you know, like you will have, sort of a whole sentence, and it’s mum but then it goes
and she has just become less and less communicative. She was a lovely person, she’s totally
changed.
•People with dementia focused on the positives and what they could still do
Ian (person with dementia): About me? Well, you know, I’m at a certain age, and, 88 I think, so
I’m quite old and well, what can I say about that? I’ve enjoyed my life, I enjoy my life still but of
course, I am limited because of my age, therefore I’m not so active and I can’t do things as I
used to do.
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Evaluation of changes
•Three factors were found to be responsible for these
discrepant evaluations:
• Attributions of change
• Management of change
• Points of reference used for making evaluations
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Attributions of change
Carers
• Focused on lost abilities as a result of dementia
Sarah (caring for her mother): I lay her clothes out in order, and even now she might not
put her petticoat on properly, its definitely that she’s not capable, she gets quite distressed
with herself if she gets it wrong, so I lay out in order and try and make things simple.
People with dementia
• Attribute changes to other conditions of “old age”, such as physical problems and
social situations
Estelle (person with dementia): Well I used to work and so that has all stopped. But
because of my health and my diabetes, there hasn’t been too much of a change if that’s
what you mean. I’m still the same person, I still like doing what I’ve always liked and so
there hasn’t been that much of a change.
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Management of change : Carer
•Carers managed changes by approaching caregiving in a practical proactive manner
•This was by:
• Seeking information
• Support from services
• Informal support
• Practical coping styles
Jonathan (caring for his father): I have the overall, I am more or less running everything in
the sense of making sure there is food here, making sure he’s got clean clothes on, making
sure he is OK for everything, I accompany him to all of his appointments, chiropody, GP,
ophthalmologist. I try and keep tabs on the (paid) carer, a (paid) carer comes in 3 times a
day, I keep tabs on, so she is aware of what’s going on of course, make her aware of
anything she needs to be aware of and try and keep the house in some sort of you know
order. With the carers, you’ve probably heard before the complaints about them, I have to
remind them sometimes about something. But generally they do the basic running of the
house, if a plumber needs to be called, I control all his finances.
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Management of change : Person with
dementia
•People with dementia managed changes by adapting psychologically to
the situation
•Their personal coping styles predominantly focused on having a positive
attitude to their situation
Marion (person with dementia): Well my memory is not like it was. But not
anything that upsets me, I remember when its mealtime. I think I’m pretty
luck to have got to this age with so little physical problems, you know. I
forget things, you know, bits of things, but I like to read.
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Points of reference for making evaluations
•Carers compared their relative or friend with dementia to what they used to be like in the
past
• Resulting in negative comparisons
Carol (caring for her husband): Its not bad but I mean in the old days he used to garden,
now he never gardens, doesn’t do anything, nothing at all. He will come shopping with me
and carry a few bits of shopping but that’s about all. He just hasn’t got the energy or the
inclination anymore.
•People with dementia, however, compared themselves to others in situations worse off
than theirs
• Resulting in positive comparisons
David (person with dementia): I would say it [quality of life] was good. I think when I see
how hard it is for some people, of course I think its good, its good, I’m lucky, that’s what I
say, lucky.
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Attributions: Dementia
Attributions: “Old age”
Coping style: Practical
proactive approach to
caregiving
Coping style:
Psychological,
focusing on positives
Reference point:
‘Then & Now’
Reference point:
Social comparisons
Carer reported
patient QoL
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Patient reported
QoL
Implications
•Methodological Implications
• Self-rated and carer-rated QoL often investigated for reliability of account
• Study 2 highlights the mechanisms by which evaluations are being made
and that people with dementia and carers may be using different attributions
of change
• Different techniques to manage change may also influence responses
• Both perspectives necessary in QoL assessments as they provide holistic
view on quality of life
•Service implications
• Services for carers will ultimately benefit person with dementia due to
carers’ practical approach to changing situation
• Psychosocial interventions for people with dementia can sustain good QoL
over time
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Acknowledgements
Thank you to all participants who generously shared their
views, specifically those who agreed to a third interview.
Thank you to Clare Flach, statistician (Institute of
Psychiatry) for statistical advice.
Thank you to Rosalind Willis for assistance with data
collection for Study 1.
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For more information:
Kritika Samsi
kritika.1.samsi@kcl.ac.uk