A scoping review of psychosocial interventions to enhance the relationship of couples living with dementia.

When dealing with the challenges of dementia, spousal relationships have a central role to play in outcomes such as quality of care and emotional wellbeing. Dementia places strain on these relationships and so it is important to develop interventions to support them. This review maps out what interventions have been employed in this context. Searches of PsycInfo, PsycArticles, CINAHL, Embase, MEDLINE, and Web of Science were conducted to find studies describing interventions that aimed to improve some aspect of the relationship. Thirty-four studies were identified. A wide range and diversity of interventions were described, including life review, psychotherapy and ones focused on communication or creative activity. Reported benefits included meaningful interaction, emotional connection, reduced conflict and negativity, an increase in mutual support, and greater equality in the relationship. However, these can only be considered as potential rather than proven benefits because of the lack of methodological rigour of most of the studies. Future research on this topic would benefit from a closer links with research on the impact that dementia can have on spousal relationships, and from the use of stronger methodology.

A Systematic Review of the Effectiveness of Educational Interventions in Promoting Person-Centred Care in Dementia Services.

OBJECTIVES: To review evidence about the effectiveness of educational programmes in promoting the delivery of person-centered care by staff in dementia services. METHODS: Several databases were searched, and the methodological quality of identified studies systematically evaluated. A summary mean effect size was calculated for several types of outcome (direct knowledge, applied knowledge, attitudes, self-reported and observed working practices). RESULTS: Eighteen studies were identified. Results were mixed, with findings of no change, significant improvement, and (in attitude) significant deterioration. Effect size was modest for direct knowledge (standardized mean difference = 0.6), but small or negligible for applied knowledge (0.29) and self-reported (0.06) and observed (0.25) working practices. There was a negative effect for attitudes (-0.17). CONCLUSIONS: The quality of evidence was poor. Apart from attitudes, the effect sizes are likely to be overestimates. There was little evidence that education programmes can reliably produce substantial improvements in working practices. CLINICAL IMPLICATIONS: Education alone is unlikely to be sufficient for establishing high standards of person-centered care in services. It needs to be supplemented by steps to ensure that staff develop skills in delivering such care in practice, and by organizational support to ensure staff have sufficient motivation, cues and opportunities for implementation.

Are spousal partner perceptions of continuity and discontinuity within the relationship linked to the symptoms of acquired brain injury?

PURPOSE: Some partners experience their relationship with a person with brain injury as the continuation of a loving pre-injury relationship (continuity), but others feel that the pre-injury relationship has been lost and replaced with something very different (discontinuity). This study provided a quantitative test of claims arising from qualitative research that certain symptoms of the injury might contribute to the experience of discontinuity - specifically, lack of emotional warmth, reduced social interaction and aggression. METHODS: Fifty-three partners providing care to someone with brain injury completed questionnaires assessing continuity/discontinuity and a range of symptoms (emotional warmth, conversational ability, aggression, depression, somatic complaints, cognition, communication, aggression, and physical disability). RESULTS: Discontinuity was significantly correlated with all symptom variables except physical disability but, in a multiple regression, only the measures of emotional warmth, conversation, aggression, and depression made a significant unique contribution. CONCLUSIONS: Discontinuity has been linked with relationship dissatisfaction and dysfunction, greater burden and distress, and a less person-centred approach to the provision of care. Identifying which symptoms contribute to discontinuity may enable partners to be more effectively supported in terms of how they make sense of and react to those symptoms, so that a greater sense of continuity may be retained.Implications for rehabilitationIn a marriage/partnership after brain injury, some people struggle to maintain the loving relationship they shared with the person with the brain injury before the injury. This has an impact on the psychological wellbeing of the couple and on the quality of care provided.Certain symptoms of the brain injury may make it more difficult to maintain the loving pre-injury relationship.These include aggression, depression, a lack of emotional warmth within the relationship, and more general difficulties in making conversation.Caregivers dealing with these symptoms may need extra support in making sense of, and coming to terms with, these changes.

Are spousal carers' perceptions of continuity and discontinuity within the relationship influenced by the symptoms of dementia?

Some spousal carers experience their current relationship with the person with dementia as a continuation of the loving relationship they shared prior to the onset of dementia. For others, the experience is one of discontinuity; the prior relationship is lost and replaced with a different kind of relationship. The aim of this study was to investigate whether these differences are associated with particular symptoms of dementia. Thirty-five spousal carers completed the Birmingham Relationship Continuity Measure, the Revised Memory and Behavior Checklist (providing scores relating to cognitive decline, depression and challenging interpersonal behaviour), the Communicative Effectiveness Index and the Bristol Activities of Daily Living Scale. Experiencing discontinuity in the relationship was significantly correlated with communication difficulties, challenging interpersonal behaviour and the need for assistance in activities of daily living, but not with cognitive decline or depression. In a multiple regression, only the measures of challenging interpersonal behaviour and activities of daily living made significant unique contributions to the variance in continuity/discontinuity scores. Discontinuity is associated with reduced psychological well-being for the spousal carer and the provision of less person-centred care. Understanding which symptoms are more likely to lead to discontinuity allows the identification of those at risk of these experiences. Those at risk may require support to enable them to make sense of, and adjust to, certain symptoms of dementia in a way that has a less negative impact on their relationship.

Wakeful rest during storage and consolidation enhances priming effects for those with acquired memory impairment.

A period of rest after learning results in better explicit memory for the material than a period of unrelated mental activity. This study investigated whether the same applies to priming. Thirty-four people with memory impairments due to acquired brain injury took part. In a repeated measures design, participants studied word lists; then either engaged in a relaxation technique (wakeful rest condition) or completed visuo-spatial tasks (control condition); and finally completed two priming tasks. Priming effects were significantly larger in the wakeful rest condition. This result is difficult to explain in terms of some of the explanations used to account for the benefits of wakeful rest on explicit memory, and alternative explanations are considered. One possibility is that the attentional demands of the control task resulted in inhibition of activity in neocortical areas associated with perception that contributed to the priming effect. The findings have implications for memory rehabilitation. Acquired memory impairments typically impact on explicit memory, and implicit memory is often relatively intact. It is important to find ways of enabling those with more severe explicit impairments to make best use of their implicit memory as a way of compensating for the deficits in their explicit memory.

Experiences that challenge self-identity following traumatic brain injury: a meta-synthesis of qualitative research.

PURPOSE: To systematically review and synthesise the qualitative literature on experiences that challenge self-identity following traumatic brain injury (TBI). METHOD: Four electronic databases were searched systematically for qualitative research published between 1965 and August 2017, investigating subjective experiences of identity change following TBI. Papers which met the inclusion criteria were evaluated using the Critical Skills Appraisal Programme (CASP) tool and synthesised using guidelines by Thomas and Harden (2008). RESULTS: Of the 1965 papers retrieved, 36 met inclusion and quality criteria. Synthesis resulted in six themes: (1) awareness of change in physical, cognitive, emotional and social functioning; (2) autobiographical memory loss; (3) responses of other people that highlight change; (4) loss of autonomy; (5) comparing old me and new me-loss of valued roles and activities; (6) social rejection and stigma. CONCLUSIONS: An in-depth understanding of the experiences that challenge self-identity after TBI can inform rehabilitation to support individuals to negotiate these processes with less distress and more successfully.IMPLICATIONS FOR REHABILITATIONAfter a traumatic brain injury some people perceive catastrophic changes in their self-identity, and this can have a substantial negative impact on their psychological well-being.Circumstances and events that can trigger such appraisals include developing awareness of loss of ability and function; gaps in autobiographical memory; when others highlight loss and change; the loss of valued roles and activities; and social stigma and rejection.Clinicians should be aware of these triggers and their potential impact so that they can support people to negotiate them more effectively, with less damage to self-identity and psychological well-being.

Development and psychometric evaluation of the Birmingham Relationship Continuity Measure for acquired brain injury.

Objective Relationship continuity/discontinuity refers to whether a spouse/partner experiences their current relationship with someone with an acquired brain injury (ABI) as a continuation of their loving pre-injury relationship or as radically changed. The aim of this study was to adapt a questionnaire measure of continuity/discontinuity from dementia research for use in an ABI context and to evaluate the psychometric properties of this adaptation. Method The questionnaire was adapted in response to feedback from a focus group of ABI caregivers. Its psychometric properties were then evaluated in two studies involving partners of people with ABI. Results The measure showed high internal consistency (alpha = .956 in Study 1 and .963 in Study 2), test-retest reliability (intra-class correlation = .960 in Study 1) and discriminative power (Ferguson's delta = .975 in Study 1 and .963 in Study 2). Evidence of construct validity was provided by a predicted pattern of correlations with other relationship questionnaires. Exploratory factor analysis suggested that the questionnaire is unidimensional. Discussion A valid and reliable quantitative measure of relationship continuity/discontinuity will enable more robust evaluation of suggestions about this construct that have been made in qualitative studies (e.g. that discontinuity is associated with a greater sense of caregiver burden).

Relationship continuity and person-centred care: An exploratory mixed-methods investigation of spousal partners' responses to the challenging care needs of those with acquired brain injury.

Some partners of people with an acquired brain injury experience the person with the injury and their relationship as continuous with the pre-injury person and relationship, but others experience the person and relationship as very different to what went before. Previous qualitative research has suggested that the experience of continuity may promote a more person-centred approach to how partners respond to challenging care needs. Given the value of triangulating evidence, this exploratory study used a mixed-methods design to investigate this suggestion. Twenty-six partners of people with an acquired brain injury completed the Birmingham Relationship Continuity Measure and a semi-structured interview about their response to challenging care needs. Interviews were coded and scored to provide a measure of the extent to which the participants' understanding, management and emotional responses showed a person-centred approach. The findings supported the hypothesis. Greater continuity was significantly correlated with a more person-centred approach. Associating relationship continuity and person-centred care is a novel approach to the issue of how family relationships may impact on care quality. Person-centred care can have important benefits for both the giver and receiver of care. Whether it can be promoted through fostering a sense of continuity in the relationship merits further investigation.

Relationship continuity and person-centred care in how spouses make sense of challenging care needs.

Objectives: Some spouses providing care for a partner with dementia experience continuity in the relationship: Despite the changes that have occurred, the person with dementia and the relationship are felt to be essentially the same as they were before the dementia. Others experience discontinuity: The person and the relationship feel very different. Previous qualitative research has suggested that continuity may be linked with the delivery of more person-centred care. Using a mixed-methods approach, the present study aimed to provide a more robust test of this claim.Method: Twenty-six spousal carers completed the Birmingham Relationship Continuity Measure and the Caregiver Hassles Scale, and took part in an interview about their response to challenging care needs. Attributions about the causes of those needs were extracted from the interviews and coded. Codes referred either to dementia as a cause, or to a range of other causes that reflected a more person-centred focus. A measure of person-centred care was obtained by calculating the percentage of the total number of attributions that fell into these more person-centred categories.Results: Consistent with the hypothesis that continuity and person-centred care are linked, those who reported greater continuity reported a significantly higher percentage of person-centred attributions.Conclusions: Person-centred care is important for the well-being of those giving and those receiving the care. Little is currently known about how to support families to be more person-centred. The possibility of supporting person-centred care through enhancing the experience of continuity merits investigation.

The social consequences of stigma-related self-concealment after acquired brain injury.

Social relationships often decline after brain injury. Although much of this is due to psychosocial impairments caused by the injury, the reactions to the injury of others in the person's wider social network, along with the response of the person with the injury to those reactions, also need to be considered. Anxiety about stigmatising reactions from others may lead some to conceal information about their brain injury. This study investigated some of the social consequences of such concealment. Sixty-five participants with acquired brain injury completed the Anticipated Stigma and Concealment Questionnaire, the Social Avoidance and Distress Scale, the UCLA Loneliness Scale, the Rosenberg Self-Esteem Scale, the Social Integration subscale of the Community Integration Questionnaire, and the Enacted Social Support Questionnaire. As hypothesised, concealment was associated with social anxiety, social avoidance, loneliness and lower self-esteem; and anxiety mediated the impact that concealment had on avoidance, loneliness and reduced community activity. However, contrary to expectation, concealment was not associated with reduced use of social support. Concealment may have negative consequences, but inappropriate disclosure can also be harmful. Services should support individuals to make optimal decisions about disclosing information about the brain injury and also help them address psychological barriers to disclosure.

Relationship Continuity/Discontinuity-A Framework for Investigating the Role of Relationships in the Experience of Living With Dementia.

A recent paper (Riley, Evans and Oyebode, 2018) reported that a sense of discontinuity in carers' experience of their spousal relationship with a person with dementia is associated with a greater sense of burden and fewer rewards from the caregiving role. This commentary sets the paper in context by providing a brief overview of research relating to relationship continuity/discontinuity. Factors that may explain why some carers experience continuity but others discontinuity are reviewed. So, too, is the potential impact of continuity/discontinuity on how the carer copes with the challenges of dementia. Possible future research is discussed.

Relationship continuity and emotional well-being in spouses of people with dementia.

OBJECTIVES: Qualitative research has suggested that spousal experiences of discontinuity in their relationship with a person who has dementia (i.e. the relationship is experienced as radically changed) may contribute to heightened feelings of burden, entrapment, isolation, guilt and intolerance of behaviours that challenge. By contrast, continuity in the relationship may contribute to a greater sense of achievement and gratification from providing care. The present study served as a quantitative test of these suggestions. METHOD: A convenience sample of 71 spouses of people with dementia completed three questionnaires - the Zarit Burden Interview (ZBI), the Positive Aspects of Caregiving measure (PAC) and the Birmingham Relationship Continuity Measure (BRCM). RESULTS: In accordance with the hypotheses, the experience of greater relationship continuity (higher BRCM scores) was correlated with fewer negative emotional reactions to caregiving (lower ZBI scores; rho = -.795) and more positive emotional reactions (higher PAC scores; rho = .764). CONCLUSIONS: The study provided some quantitative support for suggestions arising from qualitative research about how perceptions of continuity/discontinuity in the relationship may impact on the caregiving spouse's emotional well-being. Helping couples to maintain a sense of continuity and couplehood may assist their emotional adjustment to dementia.

Disclosure of a stigmatized identity: A qualitative study of the reasons why people choose to tell or not tell others about their traumatic brain injury.

OBJECTIVE: To investigate what goals influence the decisions of people with a traumatic brain injury to disclose (or not to disclose) information about their brain injury. METHOD: Ten people with a traumatic brain injury were interviewed about disclosing information about their injury to others. Thematic analysis was used to analyse the data. RESULTS: The report focuses on disclosure to people other than immediate family and close friends. Reasons for not disclosing included concern about negative reactions from others, feelings of shame about the injury, wanting to avoid getting distressed, wanting to fit in, lack of interest from others and the perception that the stress associated with the act of disclosing outweighed the benefits. Reasons for disclosing included obtaining emotional and practical support from others, the emotional release obtained from disclosure, the need to explain their behaviour to others and giving others the benefit of their experience. Experience of negative and stigmatizing reactions from others was common. Participants varied in their willingness to disclose. CONCLUSION: Disclosure can have important advantages and disadvantages. Some people with a TBI may need support in making optimal decisions about disclosure.

The course and impact of family optimism in the post-acute period after acquired brain injury.

OBJECTIVE: To investigate the course and impact of family optimism in the post-acute stage of acquired brain injury. METHODS: At Time 1, 30 family relatives of in-patients in rehabilitation units and 30 relatives of patients recently discharged from such units completed questionnaires relating to their emotional health, engagement in the rehabilitation process and expectations about the future consequences and controllability of the injury. At Time 2 (12-18 months later), 23 of the original sample completed questionnaires about their emotional health and actual consequences and controllability of the injury. RESULTS: At Time 1, optimism about future consequences and controllability was associated with greater engagement in the rehabilitation process and better emotional health. The two groups did not differ on any of the measures, which did not support the expectation that the patient's discharge home would trigger a loss of optimism and emotional upset for the family. At Time 2, the actual consequences were worse than had been expected at Time 1 and greater disappointment was associated with a greater decline in emotional wellbeing. CONCLUSION: Family expectations about recovery are linked with important variables such as emotional wellbeing and engagement in the rehabilitation process and need careful management by clinicians.

A comparison of automatic and intentional instructions when using the method of vanishing cues in acquired brain injury.

Thirty-four participants with acquired brain injury learned word lists under two forms of vanishing cues - one in which the learning trial instructions encouraged intentional retrieval (i.e., explicit memory) and one in which they encouraged automatic retrieval (which encompasses implicit memory). The automatic instructions represented a novel approach in which the cooperation of participants was actively sought to avoid intentional retrieval. Intentional instructions resulted in fewer errors during the learning trials and better performance on immediate and delayed retrieval tests. The advantage of intentional over automatic instructions was generally less for those who had more severe memory and/or executive impairments. Most participants performed better under intentional instructions on both the immediate and the delayed tests. Although those who were more severely impaired in both memory and executive function also did better with intentional instructions on the immediate retrieval test, they were significantly more likely to show an advantage for automatic instructions on the delayed test. It is suggested that this pattern of results may reflect impairments in the consolidation of intentional memories in this group. When using vanishing cues, automatic instructions may be better for those with severe consolidation impairments, but otherwise intentional instructions may be better.

Development and psychometric evaluation of an observational coding system measuring person-centered care in spouses of people with dementia.

BACKGROUND: The notion of person-centered care has been important in investigating relationships between people with dementia and paid carers, and measures are available to assess this. It has been suggested that person-centered care may be a useful construct to apply to understand family-care relationships. However, no measures of person-centered care in this context exist. The study aimed to develop an observational measure of person-centered care for this purpose. METHOD: First, a coding system incorporating a range of behaviors that could be considered person-centered or non-person-centered was constructed. Examples included a code relating to whether the person with dementia was involved in planning a task, and a code relating to how the spouse responded to confusion/distress. Second, 11 couples, where one partner had a dementia, were recruited and videotaped cooperating on an everyday task. The system was applied to the care-giving spouse's behaviors, labeling examples of behavior as person-centered or non-person-centered. The final step involved assessing the inter-rater reliability of the system. RESULTS: The system captured nine categories of behavior, which were each divided into person-centered and non-person-centered types. The system had good reliability (Cohen's κ coefficients were: 0.65 for category and whether behaviors needed to be placed in a category; 0.81 for category excluding the decision about whether behaviors needed to be placed in a category; and 0.79 in relation to whether behaviors were person-centered or non-person-centered.). CONCLUSIONS: Although the small sample size limits the implications of the results, the system is a promising quantitative measure of spousal person-centered care.

The Birmingham Relationship Continuity Measure: the development and evaluation of a measure of the perceived continuity of spousal relationships in dementia.

BACKGROUND: Qualitative research has suggested that spousal carers of someone with dementia differ in terms of whether they perceive their relationship with that person as continuous with the premorbid relationship or as radically different, and that a perception of continuity may be associated with more person-centered care and the experience of fewer of the negative emotions associated with caring. The aim of the study was to develop and evaluate a quantitative measure of the extent to which spousal carers perceive the relationship to be continuous. METHODS: An initial pool of 42 questionnaire items was generated on the basis of the qualitative research about relationship continuity. These were completed by 51 spousal carers and item analysis was used to reduce the pool to 23 items. The retained items, comprising five subscales, were then administered to a second sample of 84 spousal carers, and the questionnaire's reliability, discriminative power, and validity were evaluated. RESULTS: The questionnaire showed good reliability: Cronbach's α for the full scale was 0.947, and test-retest reliability was 0.932. Ferguson's δ was 0.987, indicating good discriminative power. Evidence of construct validity was provided by predicted patterns of subscale correlations with the Closeness and Conflict Scale and the Marwit-Meuser Caregiver Grief Inventory. CONCLUSION: Initial psychometric evaluation of the measure was encouraging. The measure provides a quantitative means of investigating ideas from qualitative research about the role of relationship continuity in influencing how spousal carers provide care and how they react emotionally to their caring role.

Belief in a just world, generalised self-efficacy and stigma may contribute to unsafe sexual intentions via a reduced perception of vulnerability to HIV/AIDS amongst young people in Ghana.

Complacency about one's HIV risk status may reduce the intention to practise safe sex. It was hypothesised that belief in a just world and stigmatising attitudes may contribute to complacency and thereby have a negative impact on safe sex intention. A sample of 238 young people in Ghana, ranging in age from 14 to 22, completed the Generalised Self-Efficacy Scale and the Belief in a Just World Scales for Self and Other, together with self-report measures of stigmatising attitudes, perceived vulnerability to HIV/AIDS and intentions to practise safe sex. Mediation analysis supported the hypothesis that stigma and just world beliefs may have a negative impact on safe sex intention that is mediated by a reduced perception of vulnerability. It was also found that generalised self-efficacy beliefs had a similar mediated impact. Each of the three factors had a mediated impact that was relatively independent of the other two factors. In addition, stigma had a negative direct (unmediated) effect on safe sex intention (i.e., more stigma was associated with reduced safe sex intention); but generalised self-efficacy beliefs had a positive direct effect (i.e., greater belief was associated with increased safe sex intention). The study replicates some previous research about stigma, and provides new evidence about the role of just world and generalised self-efficacy beliefs. Implications for public health programmes are discussed.

Evaluation of coping resources and self-esteem as moderators of the relationship between threat appraisals and avoidance of activities after traumatic brain injury.

It is not uncommon for people after a traumatic brain injury (TBI) to develop anxieties about possible negative outcomes (i.e., threat appraisals) in relation to participating in valued activities. Some respond to this anxiety by avoiding the activities, but others maintain their participation. The present study investigated two factors that may help explain this variation across individuals in their response to threat appraisals - self-esteem and the evaluation of coping resources. Forty-one individuals with a TBI completed the Avoidance and Threat Appraisals Questionnaire, the Rosenberg Self-Esteem Scale and the Coping Resources Questionnaire. The study's hypotheses were supported: Those low in self-esteem, and those with a negative evaluation of their ability to cope with the TBI, were significantly more likely to respond to threat appraisals with avoidance. Those whose injury was more recent and those whose injury was the result of an assault were also more likely to respond with avoidance. The theoretical and therapeutic implications of these results are discussed.