Jan De Lepeleire

Living to the Bitter End? A Personalist Approach to Euthanasia in Persons with Severe Dementia

The number of people suffering from dementia will rise considerably in the years to come. This will have important implications for society. People suffering from dementia have to rely on relatives and professional caregivers when their disorder progresses. Some people want to determine for themselves their moment of death, if they should become demented. They think that the decline in personality caused by severe dementia is shocking and unacceptable. In this context, some people consider euthanasia as a way to avoid total deterioration. In this article, we discuss some practical and ethical dilemmas regarding euthanasia in persons with severe dementia based on an advance euthanasia directive. We are using a personalist approach in dealing with these ethical dilemmas.

The relation between care giving and the mental health of caregivers of demented relatives: A cross-sectional study

Background: Increasing numbers of family caregivers are confronted with caring for a demented, community-dwelling relative. Living with, caring for, and supervising a demented older relative places a heavy burden on the involved family members. In particular, primary caregivers report increased strain, feelings of depression, and decreased general wellbeing as a direct consequence of care giving. Since the most common cause of failure of a home-care situation appears to be caregiver burnout, detecting critical, negative changes in the wellbeing of the caregiver is important. Methods: In a nationwide, cross-sectional study by the Belgium Social Security Board, a population of demented older patients and their care-giving relatives was investigated. The care situation and characteristics of demented, older patients and their caregivers were inventoried, and their effects on the wellbeing of caregivers were evaluated. Results: Approximately 30% (n = 28) of caregivers of demented, older relatives were depressed. Depression occurred independently of objective care characteristics and the mental and physical state of the demented patient. Rather, it was related to coping mechanisms and to the perceived burden reported by the caregiver. Conclusion: Offering support and counsel to caregivers is an important issue in efficiently maintaining home-care situations.

Can pharmacological treatment of behavioural disturbances in elderly patients with dementia lower the burden of their family caregiver

Family caregivers of a community-dwelling demented relative experience significant burden in their caregiving role. In particular, behavioural disturbances are expected to be responsible for high caregiver distress and burden. Above, in approximately 80% of the cases, institutionalization of the demented patients with dementia occurs as a result of a burdened caregiver. Because of the impressive disruptive character of behavioural disturbances, most caregivers appeal for pharmacological intervention at a given moment, expecting instant suppression of the aberrant behaviour. Beside the antipsychotic drugs, the cholinesterase inhibitors are commonly used in the treatment of agitation, aggression, delusions, etc. Although in meta-analyses on the efficacy of both categories of drugs, only little evidence of their efficacy has been found and an important placebo effect has been reported that >90% of the demented elderly was treated at least once. The aim of this study was to investigate if pharmacological treatment of behavioural disturbances of the demented can lower the burden and the time spent in the family caregiver irrespective of their effect on the demented himself. A systematic literature search was performed by means of Medline, Embase, Cochrane DSR, Dare, CCTR and ACP Journal Club. Based on this review, pharmacological treatment of demented elderly seems to lower caregiver burden (mean difference 0.27) and the time caregivers spent (mean difference 41.65 minutes). Considering that family caregivers confronted with the troublesome behaviour of their demented relative will apply for pharmacological intervention, future research should particularly focus on the outcome measures of the caregivers well-being.