Background: Prevalence studies of faecal incontinence in the general population are rare and the impact of faecal incontinence on quality of life has not been previously addressed. Aims: To establish the prevalence of faecal incontinence in adults in terms of frequency of leakage, degree of soiling, and level of impact on quality of life. Methods: In a cross sectional postal survey, 15 904 adults aged 40 years or more (excluding residents of nursing and residential homes) were selected randomly by household from the Leicestershire Health Authority patient register. Participants were asked to complete a confidential health questionnaire. Major faecal incontinence was defined as soiling of underwear or worse with a frequency of several times a month or more. Respondents were also asked if bowel symptoms had an impact on their quality of life. Results: From a total sample of 10 116 respondents, 1.4% reported major faecal incontinence and 0.7% major faecal incontinence with bowel symptoms that had an impact on quality of life. Major faecal incontinence was significantly associated with a lot of impact on quality of life (odds ratio 12.4, 95% confidence interval 7.5–20.6). Incontinence was more prevalent and more severe in older people but there was no significant difference between men and women. Conclusions: This study has confirmed that faecal incontinence is a fairly common symptom, particularly in older people. Faecal incontinence in men has received little attention in the past and the results from this study indicate that it is as much of a problem in men as it is in women while the level of unmet need in this group is high. Estimates of need for health care for this symptom should be multidimensional and assess both the severity of symptoms and the impact it has on quality of life.
17 February 2015 in ACM Transactions on Computer-Human Interaction
Ageing has become a significant area of interest in Human-Computer Interaction (HCI) in recent years. In this article we provide a critical analysis of 30 years of ageing research published across the ACM Special Interest Group on Computer-Human Interaction (SIGCHI) community. Discourse analysis of the content of 644 archival papers highlights how ageing is typically framed as a “problem” that can be managed by technology. We highlight how ageing is typically defined through an emphasis on the economic and societal impact of health and care needs of older people, concerns around socialisation as people age, and declines in abilities and associated reductions in performance when using technology. We draw from research within the fields of social and critical gerontology to highlight how these discourses in SIGCHI literature represent common stereotypes around old age that have also prevailed in the wider literature in gerontology. We conclude by proposing strategies for future research at the intersection of ageing and HCI.
Background: People with dementia and their families need support in different forms, but currently services are often fragmented with variable quality of care. Case management offers a way of co-ordinating services along the care pathway and therefore could provide individualised support; however, evidence of the effectiveness of case management for dementia is inconclusive.Objective: To adapt the intervention used in a promising case management project in the USA and test its feasibility and acceptability in English general practice.Design: In work package 1, a design group of varied professionals, with a carer and staff from the voluntary sector, met six times over a year to identify the skills and personal characteristics required for case management; protocols from the US study were adapted for use in the UK. The feasibility of recruiting general practices and patient–carer dyads and of delivering case management were tested in a pilot study (work package 2). An embedded qualitative study explored stakeholder views on study procedures and case management.Setting: Four general practices, two in the north-east of England (Newcastle) one in London and one in Norfolk, took part in a feasibility pilot study of case management.Participants: Community-dwelling people with dementia and their carers who were not already being case managed by other services.Intervention: A social worker shared by the two practices in the north-east and practice nurses in the other two practices were trained to deliver case management. We aimed to recruit 11 people with dementia from each practice who were not already being case managed.Main outcome measures: Numbers of people with dementia and their carers recruited, numbers and content of contacts, needs identified and perceptions of case management among stakeholders.Results: Recruitment of practices and patients was slow and none of the practices achieved its recruitment target. It took more than 6 months to recruit a total of 28 people with dementia. Practice Quality and Outcome Framework registers for dementia contained only 60% of the expected number of people, most living in care homes. All stakeholders were positive about the potential of case management; however, only one of the four practices achieved a level of case management activity that might have influenced patient and carer outcomes. Case managers’ activity levels were not related solely to time available for case management. Delivery of case management was hindered by limited clarity about the role, poor integration with existing services and a lack of embeddedness within primary care. There were discrepancies between case manager and researcher judgements about need, and evidence of a high threshold for acting on unmet need. The practice nurses experienced difficulties in ring-fencing case management time.Conclusions: The model of case management developed and evaluated in this feasibility study is unlikely to be sustainable in general practice under current conditions and in our view it would not be appropriate to attempt a definitive trial of this model. This study could inform the development of a case management role with a greater likelihood of impact. Different approaches to recruiting and training case managers, and identifying people with dementia who might benefit from case management, are needed, as is exploration of the scale of need for this type of working.Trial registration: Current Controlled Trials ISRCTN74015152.Funding: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full inHealth Technology Assessment; Vol. 18, No. 52. See the NIHR Journals Library website for further project information.
We describe the development, application and evaluation of a design method tailored for working with people with mild to moderate dementia. Our experiences with the approach highlighted areas where designers and participants held radically different views. The tenet of our approach was that to overcome these differences we needed to create an empathic relationship between participants and designers. To achieve this we modified participatory design techniques to foster respectful engagement with participants in the development of a digital aid to facilitate "safe walking". The process begins with broad qualitative scoping and design work then moves to developing personally tailored, individual designs to further exploration of the experiential elements of the domain while reducing the need for the participants to engage in abstract thought. Reflection highlights a number of important areas that demand consideration when undertaking research in this area and, more generally, when performing design work with people with dementia.
Background: The role of technology to facilitate independent living for people with dementia is not fully realized, with initial attempts (e.g. tracking devices) being considered unacceptable from a practical and ethical perspective. The aim of this study is to create acceptable and effective prototype technologies to facilitate independence for people with dementia through a user-centered design process involving them and their carers.Method: The study comprised a three-stage participatory design process: scoping stage (five focus groups, 10 people with dementia and 11 carers); participatory design stage (five workshops, 22 participants) and prototype development stage (four meetings with two people with dementia and one carer). Focus groups and workshops were digitally recorded, fully transcribed and subjected to constant comparative analysis.Results: People with mild to moderate dementia enjoy a variety of activities both on their own and with their families; however, concerns included getting lost, a loss of confidence with curtailment of usual activities, and carer anxiety. Existing technologies (mobile phones) were used intermittently. Participants felt strongly that future devices should be disguised and be integrated easily into their daily routines. Suggested areas for functional improvement included two-way communications, flexibility of function as the illness progresses, and something to “guide” them home when out walking or driving. Attention should also be focused on minimizing the size, weight and visibility of devices to reduce stigmatization.Conclusion: Prototypes for two devices (armband and electronic notepad) were developed. The study showed that involving people with dementia in the process of participatory design is feasible and could lead to devices which are more acceptable and relevant to their needs.
Current Government recommendations in England suggest a national approach to risk management but, in an increasingly litigious society, how do professional carers balance risk management with the promotion of a person-centred approach in dementia care? Wandering behaviour can be both beneficial and harmful to a person with dementia and generate considerable emotional distress in their carers. This study combined a systematic review and qualitative research methods to explore the perspectives of different stakeholders in the management of wandering in dementia. A major theme for carers was the conflict between the prevention of harm and the facilitation of a person's right to autonomy. Such tensions also impacted on carers' abilities to provide person-centred care. This dilemma was highlighted through the use of assistive technologies such as electronic tracking devices. Interestingly, people with dementia felt that the use of such technology placed them at greater risk, i.e. as a target to theft, than the process of wandering itself. They spoke of their need for independence and their concern over carer surveillance and the identity of ‘big brother.’ There is a need to develop practical tools for managing risk within dementia care which allow all perspectives to be captured and risk management to be negotiated.