Heather Wilkinson

Equipping staff to support people with an intellectual disability and dementia in care home settings

The knowledge, experiences and skills of direct care staff working in care home settings are essential in ensuring a good quality of life and care for a person with an intellectual disability (ID) who develops dementia. Drawing on the findings of a wider study, the issues of training, support and the wider needs of staff when trying to support a resident who develops dementia are explored, specifically as relating to the role played by staff and the need to determine their experiences and related training needs. Following an introduction to the policy and practice context for working with people with an ID and dementia, and a brief description of the research method, the authors discuss the attitudes and practices of staff; supportive changes at an organizational level; and the knowledge and training needs of staff and specific gaps in knowledge. The authors argue that, within the policy and practice context of aiming to support residents to ‘age in place’, support for staff is a crucial aspect of ensuring that such an approach is effective and provides a coordinated approach to planning, resourcing and support.

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.

Reframing risk management in dementia care through collaborative learning

Risk management is a complex aspect of practice which can lead to an emphasis on maintaining physical safety, which impacts on the well-being of people with dementia. Education for practitioners in risk management is particularly challenging because of its conceptual nature and diverse perceptions of risk between and within professional groups. The practice development research reported here formed one part of a multisite study and contributed to developing a risk assessment and management framework for use by practitioners in partnership with people with dementia and their families. Practice development research uses learning theories in the process of the research, and in so doing its intent is to not only create new knowledge but to view the research process as also a process of learning for those involved. Twenty practitioners from varying professions participated in five Collaborative Learning Groups, each of at least 2 hours duration, which were held over a 7-month period. Data analysis highlighted contradictions in the care system and in the professionals intention to practice in a person-centred way. These were expressed through the themes of: Seeking Certainty; Making Judgements; Team Working; Managing Complexity; Gathering and Using Information.

We're all thrown in the same boat ... : A qualitative analysis of peer support in dementia care

Peer support is well established in fields such as the disability movement and mental health and is increasingly recognised as one way of enabling support by and for people with a diagnosis of dementia and their immediate carers. It was central to the implementation of the National Dementia Strategy (NDS) for England, when 40 demonstration sites were established. This mixed-methods study included in-depth qualitative interviews with people living with dementia (n = 101) and staff/stakeholders (n = 82) at 8 of the 40 sites. Data analysis was a five-stage process: coding framework developed (using 25 transcripts); further development of the framework (using a further 70 transcripts); development of emerging themes; modelling of themes and verification of models based on the entire data set. Peer support had positive emotional and social impact that was rooted in identification with others, a commonality of experience and reciprocity of support. There was also a contrast between the quality of peer support and support from professionals. This emphasises the significance of lived experience and promoting a strength-based approach to interpersonal support that is enabling and challenges a deficit approach to understanding dementia.

Alcohol-related brain damage: Narrative storylines and risk constructions

To date, the voice and experience of people with alcohol-related brain damage has been silent in the literature. Using narrative research methodology and a focus on risk and quality of life, this paper outlines the analysis of interviews with six people with alcohol-related brain damage who were resident on a specialist care unit for the condition. Of the six participants, four were interviewed twice in line with the study protocol and separate interviews were conducted with a key worker on the unit, a social worker and a relative of one of the female participants. Analysis of the interviews revealed three dominant, narrative storylines: Five Minute Memory; Fractured Lives; and Believing in Recovery. Risk was constructed and experienced in a variety of ways under each of these narrative storylines, but each participant was particularly vulnerable to the assimilation of alcohol-related brain damage as a component and projection of self and identity. In addition, the process of ‘prompting’ emerged as a way that care staff constructed and discharged their rehabilitative function on the care unit and worked to minimise risk factors. A more co-ordinated, robust and transparent funding, policy, education and service structure for people with alcohol-related brain damage is called for.

People with a learning disability and dysphagia: a cinderella population?

Dysphagia has been linked to many medical conditions but most studies are performed on mainstream populations, i.e., not those with dementia or other conditions with intellectual disability (U.S.) or learning disability (UK). Why this is so is perhaps rooted in arcane attitudes about participation in research and informed consent of so-called vulnerable populations, in addition to the usual research challenges that beset us all. This lack of knowledge undermines service planning and health-care provision for a considerable group of people who make up an increasing part of our caseloads. The signs and symptoms of swallowing problems in this population include coughing on food or drink or saliva accumulation, drooling, choking, difficulty triggering a swallow, chest infections, weight loss, dehydration, malnutrition, aversion to food, behavior changes, difficulties chewing, rushing food or long mealtimes, and difficulty taking medication. The problem with the learning disability population is that often these signs are attributed to the learning disability, not to a fundamental problem with the biomechanics of swallowing, i.e., diagnostic overshadowing. Health risks for people with learning disabilities include chest infections, chronic lung disease, asphyxia, obstructive sleep apnea, and hypoxemia in oral feeding [1–3]. Severe, chronic chest problems or choking can result in death [4]. Respiratory infection is a very common cause of death for people with learning disabilities. One study cites respiratory infection as a cause of death for 52% of adults with a learning disability [5]. Clearly there is overlap with our traditional world of dysphagia. There are no reliable reports on the prevalence of dysphagia in children or adults with learning disabilities. There are estimates of the proportion of people with learning disabilities who have dysphagia within restricted populations. These estimates vary from 36% [6] based on speech-language pathology caseload reports to 73% of an in inpatient population over 10 years ago [1]. More recently in the UK the National Patient Safety Agency [7] has identified dysphagia as one of five key risk areas for people with learning disabilities. They also identified that illness and disease in people with learning disabilities can be misor undiagnosed. When considering dysphagia within this framework, it should be acknowledged that estimates of the prevalence of dysphagia do not adequately represent true prevalence figures. In people with cerebral palsy, dysphagia is reported to be widespread, particularly in those who have profound and multiple learning disabilities. Again, figures vary due to different methodologies and different populations, but it P. Leslie (&) Communication Science and Disorders, University of Pittsburgh, 4033 Forbes Tower, Pittsburgh, Pennslyvania 15260, USA e-mail: pleslie@pitt.edu

Organisational Space for Partnership and Sustainability:: Lessons from the Implementation of the National Dementia Strategy for England.

National policy initiatives are faced with challenges in their partnership development and sustainability. The National Dementia Strategy for England recommended Dementia Adviser (DA) and Peer Support Network (PSN) services and 40 demonstration sites were established. In this paper, we report on the national evaluation of these demonstration sites, with specific reference to aspects of organisational development. The research used a mixed-methods design with three main strands: (i) activity and outcome monitoring; (ii) organisational surveys and collaborative discussion; (iii) in-depth case studies in eight of the 40 sites. This paper focuses primarily on three rounds of organisational surveys distributed to all 40 demonstration sites over a period of 21 months and interviews in the case studies. Data identify the significance of infrastructure within immediate services as well as the position of services within the external infrastructure of the wider health and social care landscape. Partnership - both internally and externally - was key to establishing and sustaining services that flourished. When working well, DAs and PSNs acted as a link between services and people with dementia at the same time as filling gaps in existing support, providing information, advice and interpersonal support that was tailored to individual needs and circumstances. In conclusion, to achieve the full potential and sustainability of services requires them to be in an organisational space that allows them to work in partnership and collaboration with other services, and that values their distinct knowledge of their communities.

Editorial: Dementia - where crosscutting issues and technologies can become universals - sharing ideas from the intellectual disability field

Dementia is affecting the world’s population at an increasing rate, mostly due to the progressive aging of the population in the developed world. With increasing frequency, this phenomenon is being mirrored among aging people with intellectual disabilities (ID) due to their increased life expectancy and survivorship into progressively older age. This series of articles touches on the increased interest in the field of ID into pathological aging and in particular conditions associated with cognitive decline or impairment. The heightened interest in prevention and intervention research among people with ID who are affected by dementia offers us a reflective view into potential strategies for care for the population at large affected by dementia. The potential for crosscutting lessons learned is enormous. Jokinen’s review opens this special issue and suggests that the preponderance of studies in this topical area increasingly focus on diagnosis, assessment and pharmacological treatments of dementia. As she has noted, although increasingly more studies are appearing on pharmacological interventions, the published research on non-drug practice strategies to guide the provision of care to individuals with ID living with dementia is still sparse. She proposes that there needs to be a heightened commitment to research of effective dementia care strategies for persons with intellectual disability so that the lessons learned can be translated into strategies for dementia care in the general population. Hatzidimitriadou and Milne provide us with a comprehensive discourse on service provision and care practice implications with special reference to family carers for this population. In a realistic appraisal, they note that support services in the UK are characterized by piecemeal, incoherent de men tia

Daring to tell: the importance of telling others about a diagnosis of dementia

ABSTRACT Learning to live with a diagnosis of dementia is a complex process. Being able to talk about the diagnosis to others represents a major challenge for some people with dementia. This study explores the experiences of people with dementia, and members of their families, around the task of informing others during the six months immediately following their diagnosis of dementia. Five people with dementia living in the community, and their immediate family members, were recruited into an ethnographic study. Data were collected through recorded interviews and participant observation, and were analysed through a grounded theory method within a continuing iterative process. Findings suggest that participants recognised the need to tell others about their diagnosis but these conversations were difficult to initiate and manage, and hindered the processing of emotions. Findings are discussed in relation to implications for practice.

Embedding compassionate care in local NHS practice: Developing a conceptual model through realistic evaluation

The aim of this study was to critically analyse the impact of the ‘Leadership in Compassionate Care Programme’ and offer a conceptual model of factors that can embed compassionate care in contemporary health care environments. This three-year initiative (2008–2011) was designed to embed compassionate care in both practice and pre-registration education. Using a realistic evaluation approach this longitudinal qualitative study involved data collection in eight participating wards. The ‘level of adoption’ of the Programme varied across the wards, which pointed to key context and mechanisms that were influential in embedding compassionate care. Contextual factors that promoted adoption of the Programme were stability, support and leadership. The most important mechanisms were appreciative inquiry coupled with skilled facilitation. Powerful practice development techniques focused on articulating and demonstrating values; giving patients, relatives and staff a voice to express their experiences and emotions; and instituting effective feedback mechanisms. In the high adopting wards the main outcomes included personalisation of patient care, an increased sense of involvement for relatives and ‘caring conversations’ becoming an accepted part of working practice. Embedding and sustaining compassionate care demands strategic vision and investment in a local infrastructure that supports relationship-centred care, practice development and effective leadership at all levels.