1. PO1.13 Adjustment and representations in dementia
Dr Catherine Quinna, Prof. Robin Morrisb, & Prof. Linda Clarea
aUniversity of Exeter bKing’s College London Institute of Psychiatry, Psychology and Neuroscience
PO1.13
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METHOD
Development of the RADIX
Questions were generated from analysis of interviews about IRs in 64 people living with dementia (see Clare et al., 2016).
We sought expert opinion from dementia researchers on the items and format of the RADIX.
The RADIX was reviewed by the IDEAL study advisory group (the ALWAYs group), which consists of people living with dementia and informal carers, and their feedback was incorporated.
The RADIX was piloted with five people living with dementia to check the understandability and acceptability of the questions.
The RADIX was included in the IDEAL study survey.
Questions
The RADIX commences with a series of questions to elicit whether the person considers s/he has any difficulties. If so, the participant is then asked a series of questions about these difficulties. Here we focus on the questions about the terms people living with dementia use to describe their condition and the beliefs they hold about the causes of the condition.
Analysis
Responses were subject to content analysis.
INTRODUCTION
People’s understanding of their illness can influence their response to the illness and their well-being. The Self-Regulation Model (SRM) proposes that in order to make sense of symptoms a person will develop individualised illness representations (IRs). These are formed of 5 components - label, cause, timeline, control and consequences – which interact to form a set of beliefs (Hagger & Orbell, 2003). The SRM is a useful model for examining a person’s beliefs about dementia. To date, however, only a few studies have explored IRs in people living with dementia (e.g. Clare et al., 2016) or carers of people with dementia (e.g. Quinn et al., 2017) and there is no standardized tool to measure IRs in people living with dementia. We developed the Representations and Adjustment to Dementia Index (RADIX), which explores how people living with dementia understand and adjust to having dementia. We are validating this measure and using it to examine the IRs held by people living with dementia in the IDEAL study. Here we focus on two questions from the RADIX.
AIM: To explore the perspectives of people living with dementia on the nature and causes of their symptoms
PARTICIPANTS
Participants were identified from Time 1 IDEAL cohort study (www. idealproject.org.uk; Clare et al., 2014). Inclusion criteria for IDEAL were a diagnosis of dementia and MMSE ≥ 15. Here we focus on the first 385 people living with dementia who were administered the RADIX.
Details of the people living with dementia N
Gender: Female (%)
165 (43.8%)
Age M (SD)
76.25 (8.16)
Education*: No qualification
104 (27 %)
GCSE/equivalent
62 (16.1%)
A level/equivalent
92 (23.9%)
College
49 (12.7%)
Other
76 (19.7%)
MMSE score M (SD)
23.03 (3.73)
Diagnosis: Alzheimer's disease
235 (61%)
Vascular dementia
38 (9.9%)
Mixed dementia
72 (18.7%)
Other dementia
40 (10.4%)
Note. MMSE= Mini-Mental State Examination,
* Missing data for 2 participants
What do you call this condition/these difficulties that you have?
Descriptive-term describing specific symptoms: The person uses a term which relates to the symptoms of dementia e.g. “memory problems”, “forgetfulness”, “short-term memory loss”, “memory difficulties”, “difficulty remembering things”.
Diagnostic term: The person uses a diagnostic term e.g. “Alzheimer’s” or “dementia”.
Don’t know: The person doesn’t have a term to describe the condition or simply doesn’t know.
Descriptive- term describing emotional response: The person uses more emotive or personalised terms e.g. “ nuisance”, “frustrating”, “going doolally”, “losing my mind”.
Ageing: The person refers to getting older e.g. “ senior moments”, “old age”, “just getting older”.
Descriptive- term describing general changes: The person refers to other changes they have noticed e.g. “fog”, “a slowing-up”.
No problem: These participants did not acknowledge any difficulties.
Unclassifiable: Responses not considered classifiable.
What do you think caused or causes your difficulties/condition?
Don’t know: The person does not know what the cause is e.g. “does anybody know?”, “'I haven't a clue”
Ageing: The person refers to the cause being ageing e.g. “ageing, time is cruel”, “gradual changes due to age”
Changes in the brain: The person refers to either biological or structural changes in the brain e.g. “shrinking of the brain”, “brain cells dying”, “something is deteriorating in my brain and it's progressive”
Lifestyle/life-events: The person refers to the cause being lifestyle, life-events, emotional problems e.g. “lifestyle - but I can't think of anything to avoid it. Maybe could of exercised mind more”, “when I lost my husband”
Hereditary: The person refers to the condition being hereditary e.g. “I think it is hereditary, because my grandmother had this and my mother also had this”
Illness/medical: The person refers to the cause being illness or injury e.g. “I was ill then lost my memory for new things”, “the fall I had two years ago”
Unclassifiable: Responses not considered unclassifiable
REFERENCES
Clare, L., Nelis, S. M., Quinn, C., Martyr, A., Henderson, C., Hindle, J. V., Victor, C. R. (2014). Improving the experience of dementia and enhancing active life--living well with dementia: study protocol for the IDEAL study. Health & Quality of Life Outcomes, 12, 164. doi: /s
Clare, L., Quinn, C., Jones, I. R., & Woods, R. T. (2016). I don’t think of it as an illness’: illness representations in mild to moderate dementia Journal of Alzheimer's Disease, 51(1), doi: /JAD
Hagger, M. S., & Orbell, S. (2003). A meta-analytic review of the common-sense model of illness representations. Psychology & Health, 18(2), doi: /
Quinn, C., Jones, I. R., & Clare, L. (2017). Illness representations in caregivers of people with dementia. Aging and Mental Health, 21(5), doi: /
DISCUSSION
People living with dementia tended to use more descriptive terms to describe their condition, rather than diagnostic terms. These findings imply that people living with dementia tend to focus more on the changes they are experiencing rather than a specific diagnosis.
Beliefs about the causes of their condition were variable, with the majority either not knowing the cause or attributing changes to ageing.
The findings have implications for the provision of support for people living with dementia. In particular, a person’s illness representation should be identified and taken into account in order to provide tailored information and advice.
Funding: The IDEAL study is funded by the Economic and Social Research Council (UK) and the National Institute for Health Research (UK) through grant ES/L001853/2