Illness representations in caregivers of people with dementia

Abstract

Objectives: Illness representations shape responses to illness experienced by the self or by others. The illness representations held by family members of those with long-term conditions such as dementia influence their understanding of what is happening to the person and how they respond and provide support. The aim of this study is to explore components of illness representations (label, cause, control and timeline) in caregivers of people with dementia. Method: This was an exploratory study; the data reported came from the Memory Impairment and Dementia Awareness Study (MIDAS). Data from semi-structured interviews with 50 caregivers of people with dementia were analysed using content analysis. Results: The majority of caregivers gave accounts that appeared to endorse a medical/diagnostic label, although many used different terms interchangeably. Caregivers differentiated between direct causes and contributory factors, but the predominant explanation was that dementia had a biological cause. Other perceived causes were hereditary factors, ageing, lifestyle, life events and environmental factors. A limited number of caregivers were able to identify things that people with dementia could do to help manage the condition, while others thought nothing could be done. There were varying views about the efficacy of medication. In terms of timeline, there was considerable uncertainty about how dementia would progress over time. Conclusion: The extent of uncertainty about the cause, timeline and controllability of dementia indicated that caregivers need information on these areas. Tailored information and support taking account of caregivers' existing representations may be most beneficial.

Why do staff and family think differently about quality of life in dementia? A qualitative study exploring perspectives in care homes

“…There is an added complexity from an individual's interpretation of events. Illness representations influence a person's understanding of what is happening . Relatives are less likely than staff to be trained and understand dementia, so evaluation may be mainly about the person in the past and what has been lost.…”

“…Illness representations influence a person's understanding of what is happening. 47 Relatives are less likely than staff to be trained and understand dementia, so evaluation may be mainly about the person in the past and what has been lost. Staff may also lack understanding of a person's experience but may conceptualize quality of life as quality of care, which could lead to more positive evaluations.…”

Caregivers’ beliefs about dementia: findings from the IDEAL study

“…However, these studies did not use the CSM as a conceptual framework and only a few studies have done so. Both Glidewell, Johnston, and Thomas (2012) and Quinn, Jones, and Clare (2017) have qualitatively explored elements of IRs in caregivers of people with dementia. Glidewell (2012) reported a single case study with the person with dementia, the caregiver and the general practitioner, reporting differences in beliefs.…”

“…Glidewell (2012) reported a single case study with the person with dementia, the caregiver and the general practitioner, reporting differences in beliefs. The caregivers in Quinn et al (2017) attributed the observed changes primarily to changes in the brain. Some felt there were things that people with dementia could do to help manage the condition and others thought nothing could be done.…”

Characteristics and Correlates of Caregivers’ Perceptions of Their Family Members’ Memory Loss

“…Focusing specifically on the CSM illness perception dimension of causality, patients with mild cognitive impairment and their caregivers most frequently attributed cognitive symptoms to uncontrollable factors like normal aging (Rodakowski, Schulz, Gentry, Garand, & Lingler, 2014). Caregivers of persons with dementia participating in the Memory Impairment and Dementia Awareness Study (MIDAS) responded to semistructured interviews to describe illness representations; caregivers described uncertainty about the cause, timeline, and controllability of patients’ dementia (Quinn, Jones, & Clare, 2016). However, to our knowledge, no studies have comprehensively explored caregivers’ perceptions of their family members’ memory loss.…”