Cathy Bailey

Risky and resilient life with dementia: review of and reflections on the literature

In this article, we report on our interpretation of past and current literature on negotiating risk and resilience in the everyday lives of people living with dementia. We undertook the literature review on which this article is based as part of an ongoing qualitative study designed to explore issues of risk and resilience from the point of view of people living with dementia in urban and rural communities. We carried out a search of international, peer-reviewed publications in 2012 with an emphasis on UK policy and practice. We also accessed UK Government documents and reports for background detail. We found that there is a personal, collective, practice and policy-based will to secure robust and positive responses to risk and to work with individual and collective notions of resilience. However, there is a competing practice narrative of vulnerability and protection, and a concern with litigation that undermines positive responses to risk. There is some recognition that for community dementia services to be responsive and proactive to the needs and wishes of their users, risk and resilience need to be considered from within complex and diverse, local perspectives and lifelong knowledge. We would add to this by emphasising that an understanding of local context is also needed to fully appreciate complex and nuanced positioning of the person living with dementia. Resources may or may not be in place, but how and why they are used (or not used), and how the person with dementia may be influenced (or not) by others and by localised contexts, may have far-reaching implications for policy and practice.

Lessons learned in deploying independent living technologies to older adults' homes

Independent living technologies are fast gaining interest within both academia and industry, amid the realization that the world’s population is ageing. Technology can increase the quality of life of older people, allowing them to age-in-place and helping them to remain physically, cognitively and socially engaged with their environment. However, little research in this area is applied. The paper argues for the necessity of moving such technology out of the research laboratory and into the home, where its real impact on the lives of older adults can be assessed. Moreover, a series of recommendations are outlined, encompassing the life cycle of independent living technologies, from ethnographic assessment, through to design, deployment and evaluation. This work is based on lessons learned in deploying such technologies to older people in over 200 homes. This paper can act as a guide for other researchers interested in developing technologies with older people.

Older adults, falls and technologies for independent living: a life space approach

ABSTRACT This paper draws attention to the need for further understanding of the fine details of routine and taken-for-granted daily activities and mobility. It argues that such understanding is critical if technologies designed to mitigate the negative impacts of falls and fear-of-falling are to provide unobtrusive support for independent living. The reported research was part of a large, multidisciplinary, multi-site research programme into responses to population ageing in Ireland, Technologies for Independent Living (TRIL). A small, exploratory, qualitative life-space diary study was conducted. Working with eight community-dwelling older adults with different experiences of falls or of fear-of-falls, data were collected through weekly life-space diaries, daily-activity logs, two-dimensional house plans and a pedometer. For some participants, self-recording of their daily activities and movements revealed routine, potentially risky behaviour about which they had been unaware, which may have implications for falls-prevention advice. The findings are presented and discussed around four key themes: ‘being pragmatic’, ‘not just a faller’, ‘heightened awareness and blind spots’ and ‘working with technology’. The findings suggest a need to think creatively about how technological and other solutions best fit with peoples everyday challenges and needs and of critical importance, that their installation does not reduce an older adult to ‘just a faller’ or a person with a fear-of-falls.

Narrative citizenship, resilience and inclusion with dementia: On the inside or on the outside of physical and social places

There has been little research that addresses the importance of place in enabling resilience and citizenship – most to date focussing on these as a characteristic of the individual. This paper reports on findings from a qualitative study that aimed to explore the everyday experiences of living with dementia within rural and semi-urban communities. Data collection included a sequence of four research diaries and interviews with 13 families living at home with dementia and interviews with service providers and commissioners (a total of 57 diaries, 69 interviews with people living with dementia and 6 interviews with service providers and commissioners). Key themes identified included: Others Knowing and Responding; Socially Withdrawing and Feeling Excluded; Sustaining and Changing Activities; Belonging and Estrangement from Place; Engaging Services and Supports. The study found that familiarity with people and place can be supportive, and these factors support a narrative citizenship in which people can tell a story of inclusion and feeling on the inside. However, this familiarity with place may also create a social barrier and a sense of estrangement, or being on the outside. Narrative citizenship allows us to explore how people with dementia position themselves in relation to others and in so doing, negotiate their own and other’s understandings of dementia. It also allows for people to tell stories about themselves in relation to their sense of belonging in a social and physical place, which augment the personal and political approaches to citizenship and thus offers an approach that enhances individualised yet collective understandings of living with dementia.

The impact of ICT-based telecare technology on quality of life of people with dementia: Review of the literature

This paper presents the findings of a literature review that explored the impact of assistive technologies (AT) on quality of life (QOL) for people with dementia. Of the 799 identified papers only 18 studies met the eligibility criteria. The review concludes that few empirical studies involve people with dementia using AT. There is a clear indication that people with mild to moderate dementia are accepting of AT. Technologies that require minimal interaction from the service user and appliances specifically designed to address particular problems led to successful outcomes.

Fear of Falling and Older Adult Peer Production of Audio-Visual Discussion Material

A growing body of work suggests that negative stereotypes of, and associations between, falling, fear of falling, and ageing, may mean that older adults reject falls information and advice. Against a widely accepted backdrop of demographic ageing in Europe and that alleviating the impacts of falls and fear of falling are pressing health care matters, this is a critical issue. This paper describes a recent peer learning and sharing strategy that set out to iteratively produce a series of short audio visual discussion programs on falling and fear of falling. Key outcomes included older adults appreciating peer group sharing as an acceptable way of opening up the silence surrounding falls incidences, enjoying participating in a problem solving strategy, and emphasizing that falls prevention is not just their responsibility. Outcomes suggest that peer learning and sharing are valuable falls and fear of falling support strategies.

On the Defence: UK cultural narratives of mistrust between energy users and providers

In general, households rely on energy providers to supply essential energy services such as gas and electricity. It seems reasonable to assume that it is mutually beneficial to have a customer and supplier relationship invested in trust. Key findings from the qualitative evaluation findings of a UK Comic Relief-funded energy services and managing money better programme, suggest that the programmes effectiveness was strongly affected by negative narratives about energy suppliers. Such narratives, rooted in feelings of being labelled a ‘cheat’ or incapable of sorting their own affairs on one side and views of energy providers being exploitative and profit-hungry on the other, engendered a common, oppositional ‘united against them’ culture, built on reciprocal mistrust and disrespect. This analysis is not unique to our research, as nationally, at least and within the last decade, there has been a decline in public trust of energy providers, with a suggestion that profit has come before people. The 3-year evaluation carried out by Northumbria University, UK with the research led by a North East England registered credit union and social landlord, assessed the quality of life impacts of a face-to-face energy advice service. Expert Energy Advisors offered free home visits and gave people aged 50 and over the tools to reduce and manage energy usage, question energy companies about tariff terms and conditions and ensure maximum take up of benefit entitlements. Whilst findings point to positive health and social benefits, including reducing high anxiety about unmanageable bills, being able to question and challenge energy providers ‘high’ bills and tariffs and passing on such skills to others, there remained a ‘taken-for-granted’ mistrust of energy providers. We argue that for public good to come from public health research, we need to understand and appropriately address the roots of such cultural narratives.

Older South Asian women sharing their perceptions of health and social care services and support: a participatory inquiry

The needs of older people in Black Minority and Ethnic (BAME) communities require culturally appropriate services provision, but little is known about how BAME older people support themselves and others, what they perceive to be their “needs”, and, critically, the extent to which they feel such needs are being appropriately met.

Adaptation to Loss of Visual Function: Implications for Rehabilitation on Subtle Nuances of Communication

ABSTRACT Lack of access to visual cues can cause challenges and sometimes make social interaction difficult for many visually impaired persons in face-to-face situations. The loss of vision, therefore, demands adjustments––not only for the individual’s adaptation with sight loss for independent living but also for communication. While recognizing that older adults with vision impairment face challenges when communicating with others due to inability to perceive visual cues, this study examines the challenges and opportunities presented to them when using a computer to communicate with others. The study employed a case study approach, conducting semi-structured interviews with 20 visually impaired older adults aged 60–87 years. Findings suggest that the lack of visual cues in text-based computer-mediated communications (CMCs) supported their daily social communication. The paper discussed how, within online communication, people with vision impairment compensate for sight loss through CMC. Implications of findings for broader issues that may steer the use of Information communication technologies among visually impaired older people are discussed. This paper adds novel understanding to the field of CMC, in highlighting the need for more attentive rehabilitation than the need for circumventing face-to-face interaction.

Visually Impaired OLder people's Exercise programme for falls prevenTion (VIOLET): a feasibility study protocol

Introduction In the UK, 1 in 5 people aged 75 and over live with sight loss. Visually impaired older people (VIOP) have an above average incidence of falls and 1.3–1.9 times more likely to experience hip fractures, than the general population. Older people with eye diseases are ∼3 times more likely than those with good vision, to limit activities due to fear of falling. This feasibility study aims to adapt the group-based Falls Management Exercise (FaME) programme to the needs of VIOP and carry out an external pilot trial to inform the design of a future definitive randomised controlled trial. Methods and design A UK based 2-centre mixed methods, randomised, feasibility study will be conducted over 28 months. Stakeholder panels, including VIOP, will make recommendations for adaptations to an existing exercise programme (FaME), to meet the needs of VIOP, promoting uptake and adherence, while retaining required effective components of the exercise programme. 80 VIOP aged 60 and over, living at home, ambulant with or without a walking aid, will be recruited in Newcastle (n=40) and Glasgow (n=40) through National Health Service (NHS) Trusts and third sector partners. Participants randomised into the intervention arm will receive the adapted FaME programme. Participants randomised into the control arm will continue with usual activity. Outcomes are, recruitment rate, adherence and validated measures including fear of falling and quality of life. Postintervention in-depth qualitative interviews will be conducted with a purposive sample of VIOP (N=10). Postural stability instructors will be interviewed, before trial-specific training and following the intervention. Ethics and dissemination Ethics approval was secured through the National Research Ethics Service (NRES) Committee North East, Newcastle and North Tyneside 2. Glasgow Caledonian University was approved as a non-NHS site with local ethics approval. Findings will be disseminated through peer-reviewed journals, national and international conferences. Trial registration number ISRCTN16949845.