Ethical Issues in Dementia Research.

Dementia is a global public health issue with an urgent need for developing newer and more effective treatment strategies. Research in the area of dementia, however, poses unique ethical and legal challenges. Epidemiological studies, studies on pharmacological and non-pharmacological interventions have to deal with obtaining consent from persons with cognitive impairments, those from diverse cultural groups and need to contend with privacy and confidentiality issues. The caregiver support intervention research has not yet translated into policy change and effective clinical care. Biomedical research that involves invasive procedures may not translate into short- or long-term therapeutic benefits but is necessary research. Palliative care research in dementia has to deal with ethical issues involving people at end-of-life research. Proposed research may not receive approval, citing necessary safeguards to the vulnerable older people against invasive studies even when it is least invasive. This article aims to review the ethical aspects for safeguarding vulnerable older people with dementia and the potential challenges in conducting dementia research from a researcher's perspective. Some of the safeguards for ethical research include determining capacity to consent, obtaining advanced directives in early stages and proxy consent from caregivers, obtaining informed consent in cognitively impaired individuals. Future research policies need to consider the logistics of involving older people in research, enhancing caregiver support, and encouraging supportive decision-making. It will also need to address developing capacity assessment tools while addressing advanced care planning that will ensure the well-being of subjects in research. BACKGROUND: Dementia has become a global public health issue, with hospitalization rates being 65% higher in seniors with dementia than others.1,2 The pressures on healthcare systems mean an urgent need to develop robust preventive and treatment strategies for dementia, which requires multidisciplinary research. However, the patient's stage of illness and ability to engage in discussions around the merits of participating in research and caregiver concerns is an important aspect of dementia research.Hence, dementia research poses unique ethical challenges compared to populations with other diseases, which has led to the evolution of an ethical framework for dementia research. This article aims to review and give a viewpoint on the ethical aspects for safeguarding vulnerable older people with dementia and the potential challenges in conducting dementia research from a researcher's perspective.

Views from an asylum: a retrospective case note analysis of a nineteenth century asylum.

PURPOSE: To investigate whether lifelong admission to psychiatric asylum care was usual practice before community psychiatric care was introduced. METHODS: Historical archives (1838-1938) for 50 patients at the Northampton General Lunatic Asylum in England were studied. Regression analyses were performed to investigate associations between predictor variables (age, gender, marital status, social class) and outcomes (diagnoses, length of stay and admission outcomes). RESULTS: 30 patients (70%) were discharged into the community. 15 (31%) patients were admitted longer than 1 year. Diagnosis of mania was significantly higher in patients who were married. Trend associations were observed for melancholia being diagnosed in higher social class patients and monomania being diagnosed in unmarried patients. No associations were found between predictor variables and length of stay or admission outcomes. CONCLUSIONS: These findings challenge the myth that asylum incarceration was a usual practice before the advent of community care. Most patients were discharged from psychiatric asylum hospital within a year of admission even before the advent of psychotropic medication.

Clinical profile of compulsive sexual behaviour and paraphilia in Parkinson's disease.

This case control study compares the clinical and demographic profile of Parkinson's disease (PD) participants with compulsive sexual behaviour (CSB) to those with other impulse control disorders (ICDs) and those with no behavioural disorder. We found a higher dopaminergic load (p < 0.05) and higher levels of anxiety (p < 0.01) in the CSB group compared to the PD control group. On the NEO-FFI, a measure of personality style, the CSB group was significantly 'more open to new experiences' (p < 0.05) and significantly 'less agreeable' (p < 0.01) compared with the other two groups. Results suggest that manifestation of specific types of ICDs may be associated with distinct risk profiles; this understanding may aid early identification and trigger intervention.

Cognitive impairment in Parkinson disease: impact on quality of life, disability, and caregiver burden.

AIM: To compare quality of life, level of disability, and caregiver burden in 3 groups of people with Parkinson disease (PD): those with mild cognitive impairment (PD-MCI), those with dementia (PDD), and those with no cognitive impairment (PD-NC). BACKGROUND: Although the cognitive profile of those with PD-MCI and PDD has been well described, little is known about the personal and clinical impact of cognitive impairment and its impact on caregivers. METHOD: Quality of life and disability were measured in 3 groups of participants with PD (PD-NC, n=54; PD-MCI, n=48; and PDD, n=25). The PD-MCI group was classified using Movement Disorder Society Task Force consensus criteria. Caregivers (n=102) in the 3 groups were assessed using the Zarit Burden Inventory. RESULTS: Both quality of life and caregiver burden were similar in the 2 groups without dementia but were significantly different in those with PDD. In contrast, global disability was progressively greater as cognition declined across the 3 PD groups: PD-NC

Neuropsychiatric symptoms in Parkinson's disease with mild cognitive impairment and dementia.

Neuropsychiatric symptoms commonly complicate Parkinson's disease (PD), however the presence of such symptoms in mild cognitive impairment (PD-MCI) specifically has not yet been well described. The objective of this study was to examine and compare the prevalence and profile of neuropsychiatric symptoms in patients with PD-MCI (n = 48) to those with PD and no cognitive impairment (PD-NC, n = 54) and to those with dementia in PD (PDD, n = 25). PD-MCI and PDD were defined using specific consensus criteria, and neuropsychiatric symptoms were assessed with the 12-item Neuropsychiatric Inventory (NPI). Self-rated apathy, depression, and anxiety rating scales were also administered. Over 79% of all participants reported at least one neuropsychiatric symptom in the past month. The proportion in each group who had total NPI scores of ≥4 ("clinically significant") was as follows: PD-NC, 64.8%; PD-MCI, 62%; PDD 76%. Apathy was reported in almost 50% of those with PD-MCI and PDD, and it was an important neuropsychiatric symptom differentiating PD-MCI from PD-NC. Psychosis (hallucinations and delusions) increased from 12.9% in PD-NC group; 16.7% in PD-MCI group; and 48% in PDD group. Identifying neuropsychiatric symptoms in PD-MCI may have implications for ascertaining conversion to dementia in PD.

Carer burden in apathy and impulse control disorders in Parkinson's disease.

BACKGROUND: The neuropsychiatric complications of Parkinson's disease (PD), which include behaviour disturbances such as apathy and the impulse control disorders (ICDs), may have a significant effect on patients with PD and their carers. The contribution of these behaviour disorders to carer burden is less understood. Therefore, the aim of this study was to explore the relationship that apathy and ICDs have with carer burden. METHODS: Non-demented (n = 71) PD-carer dyads (spouse or adult child) participated in the study. The PD participants were divided into three behavioural groups: ICD (n = 21), apathy (n = 22) and controls (n = 28). The three groups were compared for level of burden in their carers by using the Zarit Burden Interview. The PD participants were rated for levels of apathy, impulsivity and motor and psychiatric symptoms. Using a multivariate analysis, we sought the PD-related predictors of carer burden. RESULTS: Significantly, greater burden was seen in carers of PD participants with ICDs (p = 0.002) or apathy (p = 0.004), compared with carers of PD participants without such behavioural disturbances. Linear regression models revealed that attentional ability accounted for burden in carers of the group with apathy, whereas dopaminergic load and depression accounted for burden in carers of the group with impulsivity. CONCLUSION: PD-related behaviour disturbances, such as apathy and ICDs, as well as psychiatric complications, have significant negative implications for burden of care.

Apathy and impulse control disorders in Parkinson's disease: a direct comparison.

BACKGROUND: Apathy and impulse control disorders (ICDs) in Parkinson's disease (PD) are clinically important complications and may exist on a common behavioral spectrum of disorders of reward and motivation. OBJECTIVE: To directly compare PD participants with apathy those with ICDs on range of demographic, neurologic and psychiatric measures. METHODS: Ninety-nine non-demented PD participants (ICD, n = 35; apathy, n = 26; and controls, n = 38) were assessed in the study. Univariate statistics were used to compare the behavioral groups. A linear regression model was created with either apathy or impulsivity as the dependent variable. RESULTS: The two behavioral groups differed significantly from the PD control group on similar factors but in opposite directions. The apathy group was older at the time of both assessment and disease onset, had higher levels of depression and lower dopamine agonist use, compared to the other two groups. The ICD group was younger than the apathy group at disease onset and had higher levels of anxiety, a higher overall dopamine load and greater motor disease complexity. Overlap in behavioral pathology across the two groups was also noted. CONCLUSION: Apathy and ICDs may be on a common behavioral spectrum in PD. Both are associated with significant psychiatric morbidity supporting shared underlying pathology.