Catherine Quinn

The impact of the quality of relationship on the experiences and wellbeing of caregivers of people with dementia: A systematic review

Background: Relatively little attention has been given to the effects of caregiving context on the experience of family members providing care for a person with dementia. This review aims to examine the impact of caregiving on the quality of the relationship between caregiver and care-recipient and the impact of the quality of the relationship between the caregiver and care-recipient on the caregivers and care-recipients wellbeing. Methods: This was a systematic review. Fifteen quantitative studies were identified that examined the quality of the relationship between caregivers and care-recipients who had dementia, meeting the criterion of using a measure of relationship quality beyond a single item. Results: The findings show that caregiving can have an impact on the quality of the relationship between caregiver and care-recipient. In addition, pre-caregiving and current relationship quality appear to have an impact on caregivers wellbeing. The care-recipients needs for help with activities of daily living and level of behavioural problems were found to influence the caregivers perceptions of relationship quality. Conclusions: Future research should examine both current and pre-caregiving relationship quality. A better understanding of the role of relationship quality in determining the outcomes of caregiving will aid the development of more effective interventions for caregivers.

The experience of providing care in the early stages of dementia: An interpretative phenomenological analysis

Objectives: Despite a wealth of research on factors affecting the well-being of caregivers for people with dementia, relatively little attention has been given to the issues facing caregivers in the early stages of dementia, and few attempts have been made to explore the subjective experience of caregivers using qualitative methods. This study explores the subjective, psychological experience of spouses or partners of people with early-stage dementia. Method: We conducted semi-structured interviews with 34 spouses or partners of people with a diagnosis of early-stage dementia, recruited through Memory Clinics, in order to elicit the participants’ understanding of, and perspective on, their situation and experience. Transcripts of the interviews were subjected to interpretative phenomenological analysis. Results: Four main themes were identified, relating to difficulties in understanding the nature and meaning of the diagnosis and condition, changes in the relationship, problems and challenges, and ways of coping. Limited understanding of dementia appeared to add considerably to the difficulties faced by caregivers at a time when they were having to respond to major changes in their relationship and interactions, make significant adjustments in their lives and consider the future. Conclusion: This study underlines the importance of helping family members to develop a working understanding of the condition in the early stages.

Using realist review to inform intervention development: methodological illustration and conceptual platform for collaborative care in offender mental health

BackgroundThis paper reports how we used a realist review, as part of a wider project to improve collaborative mental health care for prisoners with common mental health problems, to develop a conceptual platform. The importance of offenders gaining support for their mental health, and the need for practitioners across the health service, the criminal justice system, and the third sector to work together to achieve this is recognised internationally. However, the literature does not provide coherent analyses of how these ambitions can be achieved. This paper demonstrates how a realist review can be applied to inform complex intervention development that spans different locations, organisations, professions, and care sectors.MethodsWe applied and developed a realist review for the purposes of intervention development, using a three-stage process. (1) An iterative database search strategy (extending beyond criminal justice and offender health) and groups of academics, practitioners, and people with lived experience were used to identify explanatory accounts (n = 347). (2) From these accounts, we developed consolidated explanatory accounts (n = 75). (3) The identified interactions between practitioners and offenders (within their organisational, social, and cultural contexts) were specified in a conceptual platform. We also specify, step by step, how these explanatory accounts were documented, consolidated, and built into a conceptual platform. This addresses an important methodological gap for social scientists and intervention developers about how to develop and articulate programme and implementation theory underpinning complex interventions.ResultsAn integrated person-centred system is proposed to improve collaborative mental health care for offenders with common mental health problems (near to and after release) by achieving consistency between the goals of different sectors and practitioners, enabling practitioners to apply scientific and experiential knowledge in working judiciously and reflectively, and building systems and aligning resources that are centred on offenders’ health and social care needs.ConclusionsAs part of a broader programme of work, a realist review can make an important contribution to the specification of theoretically informed interventions that have the potential to improve health outcomes. Our conceptual platform has potential application in related systems of health and social care where integrated, and person-centred care is a goal.

Help Yourself Perspectives on Self-Management From People With Dementia and Their Caregivers

Self-management interventions are increasingly offered to people with chronic health conditions. However, there has been limited exploration of how applicable such an approach is in early stage dementia. In this study we explored the views of people with dementia and family caregivers on the use of self-management in dementia. We conducted semistructured interviews with 13 people with early stage dementia and 11 caregivers. We analyzed transcripts using thematic analysis. We found eight themes in the analysis, and they indicated that self-management occurs in the context of peoples’ family and social relationships as well as relationships with professional services. Six of the themes involved barriers to and facilitators of self-management. It is evident from these findings that people with dementia and caregivers use self-management techniques. Their use of such techniques could be enhanced by the development of interventions designed to help people with dementia to develop their self-management skills.

What predicts whether caregivers of people with dementia find meaning in their role

Informal dementia caregiving has traditionally been perceived as an extremely stressful process; however, more recent research has started to focus on the positive aspects of providing care. Studies indicate that caregivers who derive something positive out of caregiving have better well‐being. However, there has been little exploration of the factors linked to caregivers identifying positive aspects of providing care. The aim of the current study was to explore the predictors of finding meaning in caregiving.

The work and social adjustment scale: Reliability, sensitivity and value

Abstract Objective. To investigate the psychometric properties of the Work and Social Adjustment Scale (WSAS) as an outcome measure for the Improving Access to Psychological Therapy programme, assessing its value as an addition to the Patient Health (PHQ-9) and Generalised Anxiety Disorder questionnaires (GAD-7). Little research has investigated these properties to date. Methods. Reliability and responsiveness to change were assessed using data from 4,835 patients. Principal components analysis was used to determine whether the WSAS measures a factor distinct from the PHQ-9 and GAD-7. Results. The WSAS measures a distinct social functioning factor, has high internal reliability, and is sensitive to treatment effects. Conclusions. The WSAS, PHQ-9 and GAD-7 perform comparably on measures of reliability and sensitivity. The WSAS also measures a distinct social functioning component suggesting it has potential as an additional outcome measure.

Negotiating the balance: The triadic relationship between spousal caregivers, people with dementia and Admiral Nurses

Informal caregiving for a person with dementia often takes place within a health care triad, whose members include the caregiver, the care-recipient and the health care-professional. The aim of the current study was to explore how the members work together with this triadic context. Six spousal caregiving dyads and the three Admiral Nurses who worked with the couples were interviewed. Transcripts of these interviews were analysed to form six case studies, each containing the perspectives of the three members of the triad. The processes emerging in these case studies were encompassed under an overarching dynamic process of ‘negotiating the balance’. This describes the ongoing struggle of the members to balance the views of the other members against their own needs. Coalitions could occur as members worked together to tackle problems. The findings of this study highlight the importance of exploring the perspectives of all members of the triad. This should help health care professionals to improve the quality of the support they provide to caregivers and care-recipients.

A Review of Self-Management Interventions for People With Dementia and Mild Cognitive Impairment

Self-management offers a way of helping people with dementia or mild cognitive impairment (MCI) to play an active role in managing their condition. Barlow, Wright, Sheasby, Turner, and Hainsworth have defined self-management as the “individual’s ability to manage the symptoms, treatment, physical and psychosocial consequences and life style changes inherent in living with a chronic condition.” Although commonly used in other chronic health conditions, there has been relatively little exploration of the role of self-management in dementia or MCI. This review aimed to identify group-based psychosocial interventions for people with dementia or MCI that incorporate significant elements of self-management. Fifteen interventions were included in the review: 12 for people with dementia and 3 for participants with MCI. In both the dementia and MCI interventions, the most commonly included self-management components were information, communication, and social support, and skills training. The review findings indicate that components of self-management have been incorporated into group-based interventions for people with dementia and MCI. Further studies are needed to address the methodological limitations of the included studies and to determine the effectiveness of self-management interventions with these populations.

Balancing needs: the role of motivations, meanings and relationship dynamics in the experience of informal caregivers of people with dementia.

This paper investigates how meaning, motivation and relationship dynamics influence the caregivers’ subjective experience of caregiving. We interviewed 12 family caregivers of relatives with dementia. We analysed transcripts of these interviews using interpretative phenomenological analysis. Six key themes emerged from the analysis, which were encompassed under an overarching theme of ‘balancing needs’. This describes the caregivers’ constant struggle to balance their own needs against those of their relative, which created a series of dilemmas. These dilemmas emerged from the desire to try to preserve the caregivers’ relationship with their relative, while recognising that this relationship was changing. The caregivers’ relationship with their relative influenced the caregivers’ motivations to provide care and gave caregiving meaning. Although caregivers were motivated to provide care the battle to balance needs meant that the caregivers recognised there might come a time when they may need to cease caregiving.

AwareCare: Development and validation of an observational measure of awareness in people with severe dementia

Signs of sensory and perceptual awareness can be observed in people with very severe dementia, and may be influenced by the extent to which the environment offers appropriate stimulation. We developed an observational tool, AwareCare, which care staff can use to identify signs of awareness in residents with very severe dementia, based on the concept of the Wessex Head Injury Matrix (WHIM). Using WHIM items as a guide, and following focus groups with care staff and family members, an expert panel identified 28 environmental stimuli and 35 response categories for the initial version of AwareCare. After baseline assessments of cognition, well-being and quality of life were taken, 40 residents were observed individually for 30 minutes on 5 occasions. Based on the observational data, 10 stimulus categories and 14 response categories were identified for further analysis and formed the final version of AwareCare. All participants showed awareness to varying degrees. Social stimuli elicited the most responses. Greater awareness was associated with better cognitive function, self-care, mobility, and responsiveness, but not with proxy-rated quality of life. Understanding the nature of awareness in this group is an important element in ensuring appropriate levels of interaction and stimulation, and hence enhancing quality of care.