The population is rapidly ageing, and the number of people with dementia is increasing. The psychological and behavioural symptoms associated with dementia have a significant impact on the quality of life of both dementia patients and their caregivers. There are presently no medicines to cure dementia, thus it is becoming increasingly necessary to research strategies to support and improve the lives of those affected by dementia.
Psychological symptoms are expected to affect 90% of people with dementia, and they have been linked to poor outcomes, increased distress and hospitalization, as well as caregiver burden and lower general health. Caregivers play an important role in the daily care of people with dementia, sometimes without any prior training or awareness of dementia.
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People with dementia would struggle to go about their everyday lives without the assistance of caregivers; however, caregivers can also be a source of tension and pressure. It is thus becoming increasingly vital to investigate the relationship between caregivers and people with dementia, especially in the early stages when people are coming to grips with the diagnosis and renegotiating their relationships.
The expressed emotion (EE) construct (Vaughn & Leff, 1976) is one approach to investigating how caregiver characteristics influence dementia outcomes, EE includes numerous fundamental components of interpersonal connections, which are described here. The Camberwell Family Interview (CFI; Vaughn & Leff, 1976) is the gold standard for measuring EE constructs.
During the CFI, the respondent is asked to discuss the symptoms and behaviour of the person they care for, as well as their connection. Direct questions about the responder’s emotional reactions to the individual are not asked; instead, the emotional responses are assessed based on what the respondent says and how they say it.
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There is a substantial link between caregiver-high EE and poorer illness and treatment outcomes among people with a variety of mental and physical health disorders. The study enrolled 61 individuals with dementia and their caretakers, all over the age of 18. Participants were chosen from NHS memory services (N = 21), Age UK (N =7), and Join Dementia Research (N=33) Questionnaire measures were administered to adults with dementia at an initial interview (time one) and a 6-month follow-up interview (time two). Caregivers were questioned individually at home and requested to complete questionnaires (once and twice). All interviews were audio recorded. All participants provided their approval for their data to be used in the study.
This study examined the impact of caregiver education on sadness, anxiety, and quality of life in dementia patients diagnosed within the last two years. As predicted, caregiver-high EE was associated with worse outcomes in patients with dementia at follow-up, particularly in terms of despair and anxiety. The researchers predicted that patients with dementia who had high-EE caregivers would have higher depression and anxiety severity over time, between baseline and follow-up, than those who had low-EE caregivers.
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Dementia patients with high-EE caregivers showed comparable levels of depression and anxiety, whereas those with low-EE caregivers had lower levels. In line of the hypotheses, high levels of EOI were shown to be related to increased anxiety at follow-up compared to persons with dementia who had low-EE-EOI caregivers; but, contrary to expectations, caregiver EOI was not found to predict quality of life in people with dementia.
In support of the hypotheses, more critical comments were observed to be associated with higher levels of depression at follow-up compared to those with dementia who had low-EE criticizing caregivers. There were no significant cross-sectional relationships between caregiver EE and quality of life, anxiety, and/or depression in dementia patients, indicating that EE had a long-term effect.
The findings of this study support the notion that caregiver EE influences psychological effects for patients with dementia over time. Furthermore, the findings suggest that low EE may have a protective effect on well-being in people with dementia, resulting in a reduction in depression and anxiety symptoms over time, whereas those with high-EE caregivers retain baseline levels of despair and anxiety. People with dementia with low-EE caregivers are likely to be encouraged to be more autonomous and receive more warmth and pleasant words than those with high-EE caregivers, which may result in improvements in mood and reduced anxiety in people with dementia.
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