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Kritika Samsi, Vanessa Lawrence, Joanna Murray, Sube Banerjee PhD student, Mental Health & Ageing, Health Services & Population Research Department, Institute.

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Presentation on theme: "Kritika Samsi, Vanessa Lawrence, Joanna Murray, Sube Banerjee PhD student, Mental Health & Ageing, Health Services & Population Research Department, Institute."— Presentation transcript:

1 Kritika Samsi, Vanessa Lawrence, Joanna Murray, Sube Banerjee PhD student, Mental Health & Ageing, Health Services & Population Research Department, Institute of Psychiatry Funded by: Guys and St Thomas Charitable Foundation Why discrepant evaluations manifest in ratings of QoL in dementia

2 2 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

3 3 Study objectives To measure relationship between self-rated and carer- rated 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?

4 4 Research design Mixed method study was designed as part of a larger study of change in QoL in dementia Study 1Study 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 2Study 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

5 5 Participants Study 1: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: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

6 6 Results from Study 1 Statistically significant poor correlation between self-rated and carer-rated QoL on DEMQOL & DEMQOL Proxy and QOLAD & QOLAD Carer at both time points Measures correlated Correlation at BL Correlation at FU DEMQOL & DEMQOL Proxy 0.287 (sig. 0.01) 0.437 (sig. 0.07) QOLAD Patient & QOLAD Carer 0.346 (sig. 0.05) 0.504 (sig. 0.01)

7 7 Findings from Study 2 People with dementia and carers described QoL in different ways Carers reported on their relative or friends 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 shes 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 its mum but then it goes and she has just become less and less communicative. She was a lovely person, shes totally changed. People with dementia focused on the positives and what they could still do Ian (person with dementia): About me? Well, you know, Im at a certain age, and, 88 I think, so Im quite old and well, what can I say about that? Ive enjoyed my life, I enjoy my life still but of course, I am limited because of my age, therefore Im not so active and I cant do things as I used to do.

8 8 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

9 9 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 shes 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 hasnt been too much of a change if thats what you mean. Im still the same person, I still like doing what Ive always liked and so there hasnt been that much of a change.

10 10 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 hes 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 whats 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, youve 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.

11 11 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 Im 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.

12 12 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, doesnt do anything, nothing at all. He will come shopping with me and carry a few bits of shopping but thats about all. He just hasnt 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, Im lucky, thats what I say, lucky.

13 13 Attributions: Dementia Coping style: Practical proactive approach to caregiving Reference point: Then & Now Attributions: Old age Coping style: Psychological, focusing on positives Reference point: Social comparisons Carer reported patient QoL Patient reported QoL

14 14 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

15 15 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.

16 For more information: Kritika Samsi

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