Is the Invisibility of Dementia a Super-Power or a Curse? A Reflection on the SUNshiners' Questionnaire into the Public Understanding of Dementia as an Invisible Disability: A User-Led Research Project.

The SUNshiners group includes people in the early stages of dementia with an interest in dementia activism and research. The group found that despite the growing awareness of invisible disabilities, there is very limited research into the pros and cons of the invisibility of dementia. Our paper explores the SUNshiners research which stemmed from varied individual experiences of disclosing diagnoses. The group designed and developed a short survey to explore what the public knew about dementia and what they thought about the invisibility of dementia. A mixture of open- and closed-ended questions were used to gain meaningful data. A total of 347 people completed the survey (315 online and 32 paper-based), which was then co-analysed. The findings suggest that the majority of the public felt that the invisibility of dementia was negative; that knowing someone had dementia when first meeting them would be beneficial; that people living with dementia should maintain the right to vote; and that people living with dementia do not automatically require a consistent, regular carer. Common themes from the open-ended answers included capacity, severity of dementia, and access to support. The findings support the disclosure of dementia diagnosis; however, more action is needed to tackle stigmatised views, particularly as the SUNshiners felt that people do not have enough dementia education to support a positive disclosure experience. They shared their experiences of the group and the project's benefits, but also the losses they have faced. Our paper aims to be as accessible as possible.

Measurement of quality of life in schizophrenia: a comparison of two scales.

BACKGROUND: People with schizophrenia have an impaired quality of life (QoL), and various QoL assessment scales are available. However it is not clear which scale should be used in different situations. We aimed to compare a patient-rated subjective QoL scale with an observer-rated QoL scale by measuring their degree of correlation and their respective associative profiles with outcome measures. METHOD: Patients of the UK Schizophrenia Care and Assessment Program completed a patient-rated QoL questionnaire (MANSA). Research staff completed the observer-rated QoL tool (QLS) as part of an assessment of symptomatology and functioning. RESULTS: The two QoL tools were moderately positively correlated (r = 0.39). Both scales were negatively correlated with positive and negative symptoms of schizophrenia and depressive symptoms, and positively correlated with functioning scores. However the two scales were influenced by different factors. The patient-rated QoL was more significantly influenced by depressive symptoms, and the observer-rated QoL was more heavily influenced by negative symptoms. CONCLUSIONS: Patient-rated and observer-rated QoL are moderately related, with a number of joint determinants, but the former is sensitive to depressive influences, whilst the latter is sensitive to the negative symptomatology of schizophrenia.

Psychiatric diagnoses and behaviour problems from childhood to early adolescence in young people with severe intellectual disabilities.

BACKGROUND: While general population studies indicate an increase in the rate of psychiatric disorder in adolescence, little is known about the course of mental health and behaviour problems between childhood and adolescence in young people with severe intellectual disabilities. METHOD: From a sample of 111 children with severe intellectual disability who had been identified from the registers of six special schools at 4-11 years of age, 82 were traced and reassessed 5 years later at the age of 11-17 years. Behaviour problems were assessed by means of parental interviews conducted in the family home and parent and teacher questionnaires. Parental reports of psychiatric diagnoses were checked against health records. RESULTS: With most behaviour problems, including aggression, destructive behaviour and self-injury, there was little difference in rates between the two assessment occasions. However, in spite of this overall pattern of stability, the rates of some behaviour problems, including overactivity, showed significant reductions between childhood and early adolescence. Persistence rates for most behaviour problems appeared comparable to those reported for similar behaviours in general population studies of children. There was no significant difference in the proportion of cases with psychiatric diagnoses between the two assessment occasions, although brief psychotic episodes emerged in three cases in adolescence. CONCLUSIONS: The findings suggest that the prevalence of mental health and behavioural problems in young people with severe learning disabilities remains relatively stable between childhood and adolescence, although some specific behaviour problems diminish. However, a small minority of children may develop severe psychiatric disorders in adolescence.