Jan R. Oyebode

Burnout among care staff for older adults with dementia The role of reciprocity, self-efficacy and organizational factors

People working in the helping professions have been found to be vulnerable to the development of burnout and research has suggested a relationship between dementia care and burnout. Literature suggests that the development of burnout may be linked to a number of factors, including lack of reciprocity, low self-efficacy and organizational factors. The study explored burnout in staff for older people with dementia and examined the roles of reciprocity, self-efficacy and organizational factors and aimed to identify which of these variables was the greatest predictor of burnout. Sixty—one members of staff in continuing care homes for people with dementia completed self-report questionnaires. Self-efficacy was found to be the greatest predictor of burnout. Findings from the study also emphasized the connections of reciprocity, occupational commitment, demographic factors and self-efficacy with burnout. The clinical implications of the study, methodological considerations and recommendations for future research are discussed.

Having a father with young onset dementia The impact on well-being of young people

In the UK, it is estimated that there are over 16,000 people under 65 years with dementia. These people often have children still living at home and previous research indicates that 75% of parents report that their children have suffered psychological or emotional problems as a consequence of a parent having dementia. This study interviewed 12 participants aged 13 to 23 years, whose father had younger onset dementia. Grounded theory methodology identified five major themes: damage of dementia, reconfiguration of relationships, caring, strain and coping. An overarching theme of one day at a time, reflecting a response to the perception of severe threats in the future, appeared to run throughout the young people’s experiences. It is suggested that the emergent grounded theory has some similarity to stress-process models of caregiving with distinctive features arising from the interaction of young onset dementia and the developmental stage of the young people.

Goal-oriented cognitive rehabilitation in early-stage dementia: Study protocol for a multi-centre single-blind randomised controlled trial (GREAT)

BackgroundPreliminary evidence suggests that goal-oriented cognitive rehabilitation (CR) may be a clinically effective intervention for people with early-stage Alzheimer’s disease, vascular or mixed dementia and their carers. This study aims to establish whether CR is a clinically effective and cost-effective intervention for people with early-stage dementia and their carers.Methods/designIn this multi-centre, single-blind randomised controlled trial, 480 people with early-stage dementia, each with a carer, will be randomised to receive either treatment as usual or cognitive rehabilitation (10 therapy sessions over 3 months, followed by 4 maintenance sessions over 6 months). We will compare the effectiveness of cognitive rehabilitation with that of treatment as usual with regard to improving self-reported and carer-rated goal performance in areas identified as causing concern by people with early-stage dementia; improving quality of life, self-efficacy, mood and cognition of people with early-stage dementia; and reducing stress levels and ameliorating quality of life for carers of participants with early-stage dementia. The incremental cost-effectiveness of goal-oriented cognitive rehabilitation compared to treatment as usual will also be examined.DiscussionIf the study confirms the benefits and cost-effectiveness of cognitive rehabilitation, it will be important to examine how the goal-oriented cognitive rehabilitation approach can most effectively be integrated into routine health-care provision. Our aim is to provide training and develop materials to support the implementation of this approach following trial completion.Trial registrationCurrent Controlled Trials ISRCTN21027481

A single case experimental design comparing two memory notebook formats for a man with memory problems caused by traumatic brain injury

There is extensive literature demonstrating that restoration of memory is not a realistic goal for rehabilitation and that efforts are more effective if focused on developing compensatory strategies. This paper compares two formats of memory notebook using an ABAB single-case experimental design with a 46-year-old man with a history of head injury. Results revealed significantly better performance on a series of prospective memory tasks for the “modified” notebook. The study highlights the importance of tailoring the diary to the patients needs and giving careful consideration to the way in which the diary is introduced.

The dynamics of continuity and discontinuity for women caring for a spouse with dementia

This qualitative study explores spouse caregivers’ understanding of and responses to partners with dementia. Six wives who had been providing care to their husbands in the community for at least two years were interviewed. Transcripts were analysed using Interpretative Phenomenological Analysis (IPA) and four interconnected themes were proposed: same person or different; relational change; emotional responses to behaviours; and impact on day-to-day life. Participants’ sense of continuity with the past was suggested to influence each theme. The construct of continuity was proposed to be elastic, with both intra-psychic and inter-psychic factors impacting upon its elasticity. Broadly, a sense of continuity seemed to be associated with better adjustment to caregiving.

An exploration of the experience of gaining awareness of deficit in people who have suffered a traumatic brain injury

Gaining awareness of deficits was explored in 10 people with moderate to severe traumatic brain injury (TBI) using a semi-structured interview and interpretative phenomenological analysis. Eight master themes emerged from the transcripts. Knowledge of deficits was acquired through personal discovery and the reactions of others, often outside the rehabilitation environment. Rehabilitation provided explanations and a normalising and supportive environment that facilitated people in acknowledging their deficits. Most participants spontaneously referred to denial and saw this as an active cognitive and behavioural process that both helped and hindered recovery. The emotional reaction to learning about deficits was described largely in terms of fear and loss and resonates with psychological models of grief.

Psychosocial aspects of coeliac disease: A cross-sectional survey of a UK population

OBJECTIVES Coeliac disease (CD) is an autoimmune condition managed by a lifelong therapeutic gluten-free diet. Previous research suggests that the chronicity of CD, the limitations imposed by the gluten-free diet, and the risk of other associated diseases can have a negative impact on health-related quality of life (HRQoL) and psychological well-being. The aim of this study was to explore the illness perceptions and self-efficacy beliefs of adults with CD in the United Kingdom and to report their subjective levels of HRQoL and psychological well-being. DESIGN The study employed a cross-sectional postal questionnaire design. METHOD Participants (n= 288) were adults with CD recruited via Coeliac UK. Measures of well-being, HRQoL, self-efficacy, illness perceptions, and dietary self-management were analysed. Preliminary descriptive and univariate procedures were employed before bivariate tests of association or difference were carried out. Backward stepwise multiple regression analysis was used to investigate the predictive strength of variables on well-being, quality of life, and self-efficacy. Logistic regression was used to look at the influence of variables on adherence. RESULTS. Results indicate that HRQoL and psychological well-being were comparable to those found in previous related studies. Participants with weak beliefs in the serious consequences of CD and poorer emotional reactions to the condition had a greater likelihood of having enhanced HRQoL, improved psychological well-being, and higher self-efficacy. Strong beliefs in personal control and a greater perceived understanding of CD were associated with greater self-efficacy. CONCLUSIONS Perceived self-efficacy and illness perceptions could play a role in informing psychological interventions for individuals with CD.

Family relationships and dementia: A synthesis of qualitative research including the person with dementia

ABSTRACT Family relationships are important for wellbeing across the lifecourse and are known to be important for people living with dementia, bringing benefits to self-esteem and identity, as well as providing support for people living at home. Recent research has explored the impact of dementia upon relationships. Much of this research is qualitative in nature and rarely included in systematic reviews, however, it has the potential to provide significant contributions to understanding the interplay between family relationships and dementia and to inform interventions. A systematic synthesis of qualitative research concerning the impact of dementia upon family relationships was undertaken, using thematic synthesis. Eleven articles were reviewed, which address the perspectives of people living with dementia and their spouse and/or adult children. The aims of this review are to illuminate what is currently known about the reciprocal influences between family relationships and dementia from the perspectives of the family (including the person with dementia); and to consider the implications of these findings for research and practice. Four super-ordinate themes were identified: ‘a shared history’, ‘negotiating the impact of dementia upon the relationship’, ‘openness and awareness’ and ‘shifting sands’. This synthesis contributes to an emerging field but also highlights gaps in current understanding of the impact of dementia upon relationships and in providing appropriate interventions. Implications for research and practice are considered.

Influences of Religion and Culture on Continuing Bonds in a Sample of British Muslims of Pakistani Origin.

This study considered the nature of continuing bonds with deceased relatives in a sample of Pakistani Muslims living in the United Kingdom. Ten participants 1 were interviewed following a cultural psychology approach and transcripts were analyzed using grounded theory methodology. Dreaming, talking with others about the deceased, following the deceaseds example, keeping memories and mementos, and doing actions thought to help the deceased were forms of continued relationship found. These were intertwined with the process of grieving and were influenced by the family, culture, and religion. Religion was a strong influence on the prominence given by participants to finishing well and on the notion of doing actions thought to help the deceased. Cultural mores, such as the community, and collectivist ethos and the expectation that emotion would be expressed around the time of death, were found to be supportive for some but sources of tension for other participants. Expressing a continuing bond through following the deceaseds example so as to make them proud or happy seemed to be reinforced by cultural roots in respect for elders. Participants gave instances of tensions in areas such as expression of emotion and communality versus individualism that arose as a result of their position between two cultural frameworks, some illustrating how assimilation into the host culture set up conflict with the expected norms of their family/ancestral culture. The study highlights how understanding different cultural and religious influences may enrich the concept of continuing bonds. 1Participant 4 wished for his father, Raja Abdul Rehman Khan, to be named in this research in order for his memory to live on.

How older women who live alone with dementia make sense of their experiences: An interpretative phenomenological analysis

This paper investigates the subjective experiences of older women living alone with Alzheimer’s disease, vascular or mixed dementia. Eight women were interviewed to explore how they managed their identities and coped with day-to-day living, in the absence of a significant co-resident other who might reflect them back to themselves. Through interpretative phenomenological analysis themes emerged about loss, embodiment, adapting, awareness, safety, relationships, exclusion and loneliness. Memory loss had the most significant impact through loss of independence. However, the women were actively engaged in re-constructing their sense of self, using a variety of coping strategies. Relationships with friends, neighbours and attendance at memory clubs were important. A search for meaningful relationships was apparent, conflicting with feeling vulnerable and a consequent desire for self protection.