New networked technologies and carers of people with dementia: an interview study

Dementia is one of the greatest contemporary health and social care challenges, and novel approaches to the care of its sufferers are needed. New information and communication technologies (ICT) have the potential to assist those caring for people with dementia, through access to networked information and support, tracking and surveillance. This article reports the views about such new technologies of 34 carers of people with dementia. We also held a group discussion with nine carers for respondent validation. The carers' actual use of new ICT was limited, although they thought a gradual increase in the use of networked technology in dementia care was inevitable but would bypass some carers who saw themselves as too old. Carers expressed a general enthusiasm for the benefits of ICT, but usually not for themselves, and they identified several key challenges including: establishing an appropriate balance between, on the one hand, privacy and autonomy and, on the other: maximising safety; establishing responsibility for and ownership of the equipment and who bears the costs; the possibility that technological help would mean a loss of valued personal contact; and the possibility that technology would substitute for existing services rather than be complementary. For carers and dementia sufferers to be supported, the expanding use of these technologies should be accompanied by intensive debate of the associated issues.

'Listen to my madness':understanding the experiences of people with serious mental illness

This article explores the salience of disability theory for understanding the experiences of people with serious mental illness. Drawing on data from a focus group study, we suggest that users experience both impairment (as embodied irrationality) which can, in itself, be oppressive, and also have to manage their lives within a largely disabling society. We outline some of the strategies adopted by users to manage their situation and ensure they access and receive health services, and illustrate how these are a result of the complex relationship between disability and impairment. We suggest that using a framework of the social model of disability provides a useful way of understanding and making sense of the experience of users with serious mental illness. © Blackwell Publishing Ltd/Foundation for the Sociology of Health & Illness 2005.

Systematic review investigating the reporting of comorbidities and medication in randomized controlled trials of people with dementia

Objectives: dementia is a debilitating condition characterised by global loss of cognitive and intellectual functioning, which reduces social and occupational performance. This population frequently presents with medical co-morbidities such as hypertension, cardiovascular disease and diabetes. The CONSORT statement outlines recommended guidance on reporting of participant characteristics in clinical trials. It is, however, unclear how much these are adhered to in trials assessing people with dementia. This paper assesses the reporting of medical co-morbidities and prescribed medications for people with dementia within randomised controlled trial (RCT) reports. Design: a systematic review of the published literature from the databases AMED, CINAHL, MEDLINE, EMBASE and the Cochrane Clinical Trial Registry from 1 January 1997 to 9 January 2014 was undertaken in order to identify RCTs detailing baseline medical co-morbidities and prescribed medications . Eligible studies were appraised using the Critical Appraisal Skills Programme (CASP) RCT appraisal tool, and descriptive statistical analyses were calculated to determine point prevalence. Results: nine trials, including 1474 people with dementia, were identified presenting medical co-morbidity data. These indicated neurological disorders ( prevalence 91%), vascular disorders (prevalence 91%), cardiac disorders ( prevalence 74%) and ischaemic cerebrovascular disease ( prevalence 53%) were most frequently seen. Conclusions: published RCTs poorly report medical co-morbidities and medications for people with dementia. Future trials should include the report of these items to allow interpretation of whether the results are generalisable to frailer older populations.

Satisfaction with primary care:the perspectives of people with schizophrenia

Background. Schizophrenia affects up to 1% of the population in the UK. People with schizophrenia use the National Health Service frequently and over a long period of time. However, their views on satisfaction with primary care are rarely sought. Objectives. This study aimed to explore the elements of satisfaction with primary care for people with schizophrenia. Method. A primary care-based study was carried out using semi-structured interviews with 45 patients with schizophrenia receiving shared care with the Northern Birmingham Mental Health Trust between 1999 and 2000. Results. Five major themes that affect satisfaction emerged from the data: the exceptional potential of the consultation itself; the importance of aspects of the organization of primary care; the construction of the user in the doctor-patient relationship; the influence of stereotypes on GP behaviour; and the importance of hope for recovery. Conclusion. Satisfaction with primary care is multiply mediated. It is also rarely expected or achieved by this group of patients. There is a significant gap between the rhetoric and the reality of user involvement in primary care consultations. Acknowledging the tensions between societal and GP views of schizophrenia as an incurable life sentence and the importance to patients of hope for recovery is likely to lead to greater satisfaction with primary health care for people with schizophrenia.

The importance of detecting and managing comorbidities in people with dementia?

Dementia is a debilitating condition characterised by global loss of cognitive and intellectual functioning, which gradually interferes with social and occupational performance. It is a common worldwide condition with a significant impact on society. There are currently 36 million people worldwide with Alzheimer's disease (AD) and other dementias [1]. This is expected to more than double by 2030 (65 million) and reach ∼115 million in 2050, unless a major breakthrough is made. The worldwide societal costs were estimated at USD 604 billion in 2010 and rising [2]. To date research on the specific physical healthcare needs of people with dementia has been neglected. Yet, physical comorbidities are reported as common in people with dementia [3] and have been shown to lead to increased disability and reduced quality of life for the affected person and their carer [4]. Dementia is most frequently associated with older people who often present with other medical conditions, known as co-morbidities. Such co-morbidities include diabetes, chronic obstructive pulmonary disorder, musculoskeletal disorders and chronic cardiac failure and are common, 61% of people with …

Patients' and health professionals' views on primary care for people with serious mental illness:focus group study

Objective: To explore the experience of providing and receiving primary care from the perspectives of primary care health professionals and patients with serious mental illness respectively. Design: Qualitative study consisting of six patient groups, six health professional groups, and six combined focus groups. Setting: Six primary care trusts in the West Midlands. Participants: Forty five patients with serious mental illness, 39 general practitioners (GPs), and eight practice nurses. Results: Most health professionals felt that the care of people with serious mental illness was too specialised for primary care. However, most patients viewed primary care as the cornerstone of their health care and preferred to consult their own GP, who listened and was willing to learn, rather than be referred to a different GP with specific mental health knowledge. Swift access was important to patients, with barriers created by the effects of the illness and the noisy or crowded waiting area. Some patients described how they exaggerated symptoms ("acted up") to negotiate an urgent appointment, a strategy that was also employed by some GPs to facilitate admission to secondary care. Most participants felt that structured reviews of care had value. However, whereas health professionals perceived serious mental illness as a lifelong condition, patients emphasised the importance of optimism in treatment and hope for recovery. Conclusions: Primary care is of central importance to people with serious mental illness. The challenge for health professionals and patients is to create a system in which patients can see a health professional when they want to without needing to exaggerate their symptoms. The importance that patients attach to optimism in treatment, continuity of care, and listening skills compared with specific mental health knowledge should encourage health professionals in primary care to play a greater role in the care of patients with serious mental illness.

Education and self-management for people newly diagnosed with type 2 diabetes: a qualitative study of patients' views.

OObjectives: We explored the perceptions, views and experiences of diabetes education in people with type 2 diabetes who were participating in a UK randomized controlled trial of methods of education. The intervention arm of the trial was based on DESMOND, a structured programme of group education sessions aimed at enabling self-management of diabetes, while the standard arm was usual care from general practices. Methods: Individual semi-structured interviews were conducted with 36 adult patients, of whom 19 had attended DESMOND education sessions and 17 had been randomized to receive usual care. Data analysis was based on the constant comparative method. Results: Four principal orientations towards diabetes and its management were identified: `resisters', `identity resisters, consequence accepters', `identity accepters, consequence resisters' and `accepters'. Participants offered varying accounts of the degree of personal responsibility that needed to be assumed in response to the diagnosis. Preferences for different styles of education were also expressed, with many reporting that they enjoyed and benefited from group education, although some reported ambivalence or disappointment with their experiences of education. It was difficult to identify striking thematic differences between accounts of people on different arms of the trial, although there was some very tentative evidence that those who attended DESMOND were more accepting of a changed identity and its implications for their management of diabetes. Discussion: No one single approach to education is likely to suit all people newly diagnosed with diabetes, although structured group education may suit many. This paper identifies varying orientations and preferences of people with diabetes towards forms of both education and self-management, which should be taken into account when planning approaches to education.

Association of anticholinergic burden with adverse effects in older people with intellectual disabilities:an observational cross-sectional study

BACKGROUND: No studies to date have investigated cumulative anticholinergic exposure and its effects in adults with intellectual disabilities. AIMS: To determine the cumulative exposure to anticholinergics and the factors associated with high exposure. METHOD: A modified Anticholinergic Cognitive Burden (ACB) scale score was calculated for a representative cohort of 736 people over 40 years old with intellectual disabilities, and associations with demographic and clinical factors assessed. RESULTS: Age over 65 years was associated with higher exposure (ACB 1-4 odds ratio (OR) = 3.28, 95% CI 1.49-7.28, ACB 5+ OR = 3.08, 95% CI 1.20-7.63), as was a mental health condition (ACB 1-4 OR = 9.79, 95% CI 5.63-17.02, ACB 5+ OR = 23.74, 95% CI 12.29-45.83). Daytime drowsiness was associated with higher ACB (P<0.001) and chronic constipation reported more frequently (26.6% ACB 5+ v. 7.5% ACB 0, P<0.001). CONCLUSIONS: Older people with intellectual disabilities and with mental health conditions were exposed to high anticholinergic burden. This was associated with daytime dozing and constipation.