Cognitive testing alone is insufficient to assess the presence of capacity. Researchers and clinicians need to be aware of the challenging processes regarding capacity assessment. We outline a procedure which we believe meets the ethical and legal requirements.
Background/aim: People with early cognitive impairment (ECI), comprising mild cognitive impairment and early dementia face the risk of diminished mental capacity with progressive disease. Advance care planning (ACP) is advocated as a means to uphold the autonomy of individuals and enable them to express their wishes for the future while they still possess mental capacity. This study aims to explore the perspectives of patients with ECI regarding ACP, and in particular, understand their reasons for resistance. Method: Consecutive patients undergoing a counselling service for persons with ECI who fulfilled inclusion criteria (Mini Mental State Examination score ≥18, Global Clinical Dementia Rating (GCDR)=0.5 or 1 were recruited. Demographic and clinical data was collected and the detailed documentation in the case records of the counselling sessions was subjected to a thematic analysis. Differences between patients who were willing to engage in ACP and those who declined were also analysed. Results: 93 patients (mean age 76, 60.2% female) were recruited of which 38.7% chose to engage further in ACP discussions. GCDR was the only factor that emerged significant on bivariate analysis for willingness to engage in ACP (t (79) =2.191, p<0.05, two-tailed) whereby milder CI was associated with a greater likelihood of ACP engagement. Among those who declined ACP, three main themes emerged from the thematic analysis. The majority deferred decision-making to their families. Some perceived ACP as irrelevant or unnecessary, and displayed avoidance and denial during ACP discussions. Conclusions: A large proportion of patients with ECI decline ACP discussions and the reasons are influenced by personal values, coping behaviours and sociocultural norms. These findings have important implications for practice
Studies highlight that shame can be problematic for people with early-stage dementia. However, no published research has specifically explored experiences of shame in dementia from the perspective of the individual. This study uses Interpretative Phenomenological Analysis to gain an understanding of how shame is experienced and made sense of by six people with early-stage dementia. Individual, semi-structured interviews took place in participants' homes. An in-depth analysis of the data revealed four superordinate themes implicated in shame experiences: Avoidance explains the participants' efforts to distance themselves from shaming experiences; participants reported Negative self-perceptions including a weakening self, loss of value, and meaninglessness; Relationship matters involved issues around trust, burden, and past relationships; and Uncertainty and loss of control highlights participants' anxiety about losing clarity and control. Ideas are contributed for promoting non-shaming experiences for people with dementia, particularly through communication during assessment and diagnosis, and psychological therapies.
The prevalence of dementia is increasing, especially in Asia. Caregivers of people with dementia are at greater risk of psychological morbidity; however, most studies on caregiving have been conducted in Western populations. As a caregiver's experience can be influenced by cultural factors, this needs exploring further. This study explored the lived experience of caregivers of dementia patients in Singapore and the impact of caring on their sense of self. Six Chinese female spousal caregivers were interviewed and their experiences were analyzed using interpretative phenomenological analysis (IPA). Four super-ordinate themes were identified: impact of caregiving, acceptance of destiny, taking control, and view of self. The findings reflected the influence of Confucian values. Clinical implications are discussed, including more culturally sensitive services.
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