‘Behaviour that challenges’ in dementia care: an update of psychological approaches for home and care home settings

Over and above the personal and financial costs associated with dementia, those for ‘behaviour that challenges’ (BtC) are significant (Lowry & Warner, 2009; Hermann et al., 2006). This briefing paper outlines the importance of having a psychological understanding of both the causes and appropriate interventions required for BtC. It highlights the role of clinical psychologists, ideally working within multi-disciplinary teams, in producing biopsychosocial formulations to meet the health and psychosocial needs of a person living with dementia (PwD). The paper also draws on relevant evidence including findings from a recently completed NIHR programme of work on the Management of Challenging Behaviour at home and in care homes (Moniz-Cook et al., 2017) to provide recommendations for action

Raising the standard of applied dementia care research : addressing the implementation error

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Through the eyes of others - The social experiences of people with dementia: A systematic literature review and synthesis

Psychosocial models suggest that the lived experience of dementia is affected by interpersonal factors such as the ways in which others view, talk about, and behave toward the person with dementia. This review aimed to illuminate how informal, everyday interpersonal relationships are experienced by people with dementia within their social contexts. A systematic review of qualitative literature published between 1989 and May 2016 was conducted, utilizing the electronic databases PsycINFO, MEDLINE, and CINAHL-Complete. This was followed by a critical interpretative synthesis to understand how people with dementia perceive the attitudes, views, and reactions of other people toward them, and the subjective impact that these have. Four major themes were derived from the findings of the 23 included studies: being treated as an “other” rather than “one of us”; being treated as “lesser” rather than a full, valued member of society; the impact of others’ responses; and strategies to manage the responses of others. Thus, people with dementia can feel outcast and relegated, or indeed feel included and valued by others. These experiences impact upon emotional and psychological well-being, and are actively interpreted and managed by people with dementia. Experiences such as loss and diminishing identity have previously been understood as a direct result of dementia, with little consideration of interpersonal influences. This review notes that people with dementia actively engage with others, whose responses can foster or undermine social well-being. This dynamic relational aspect may contribute to emerging understandings of social health in dementia

Living positively with dementia: a systematic review and synthesis of the qualitative literature

Objective: Little is known about how and to what extent people with dementia live positively with their condition. This study aimed to review and carry out a synthesis of qualitative studies where accounts of the subjective experiences of people with dementia contained evidence of positive states, experiences or attributes. Methods: A meta-synthesis was undertaken to generate an integrated and interpretive account of the ability of people with dementia to have positive experiences. A methodological quality assessment was undertaken to maximize the reliability and validity of this synthesis and to contextualize the findings with regard to methodological constraints and epistemological concepts. Findings: Twenty-seven papers were included. Three super-ordinate themes relating to positive experiences and attributes were identified, each with varying and complementing sub-themes. The first super-ordinate theme related to the experience of engaging with life in ageing rather than explicitly to living with dementia. The second theme related to engaging with dementia itself and comprised the strengths that people can utilize in facing and fighting the condition. The third theme captured how people with dementia might transcend the condition and seek ways to maintain identity and even achieve personal growth. Conclusions: This review provides a first step towards understanding what conceptual domains might be important in defining positive outcomes for people who live with dementia. Highlighting the potential for people to have positive experiences in spite of or even because of their dementia has important implications for de-stigmatizing dementia and will enhance person-centred approaches to care

Behavioural and psychological symptoms in dementia and the challenges for family carers: systematic review

Background: Tailored psychosocial interventions can help families to manage behavioural and psychological symptoms in dementia (BPSD), but carer responses to their relative's behaviours contribute to the success of support programmes. Aims: To understand why some family carers have difficulty in dealing with BPSD, in order to improve the quality of personalised care that is offered. Method: A systematic review and meta-ethnographic synthesis was conducted of high-quality quantitative and qualitative studies between 1980 and 2012. Results: We identified 25 high-quality studies and two main reasons for behaviours being reported as challenging by family carers: changes in communication and relationships, resulting in ‘feeling bereft’; and perceptions of transgressions against social norms associated with ‘misunderstandings about behaviour’ in the relative with dementia. The underlying belief that their relative had lost, or would inevitably lose, their identity to dementia was a fundamental reason why family carers experienced behaviour as challenging. Conclusions: Family carers' perceptions of BPSD as challenging are associated with a sense of a declining relationship, transgressions against social norms and underlying beliefs that people with dementia inevitably lose their ‘personhood’. Interventions for the management of challenging behaviour in family settings should acknowledge unmet psychological need in family carers

A systematic review of the relationship between behavioral and psychological symptoms (BPSD) and caregiver well-being

Background: Behavioural and psychological symptoms in dementia (BPSD) are important predictors of institutionalisation as well as caregiver burden and depression. Previous reviews have tended to group BPSD as one category with little focus on the role of the individual symptoms. This review investigates the role of the individual symptoms of BPSD in relation to the impact on different measures of family caregiver wellbeing. Methods: Systematic review and meta-analysis of articles published in English between 1980 and December 2015 reporting which BPSD affect caregiver wellbeing. Article quality was appraised using the Downs and Black Checklist (1998). Results: 40 medium and high quality quantitative articles met the inclusion criteria, 16 were suitable to be included in a meta-analysis of mean distress scores. Depressive behaviours were the most distressing for caregivers followed by agitation/aggression and apathy. Euphoria was the least distressing. Correlation coefficients between mean total behaviour scores and mean distress scores were pooled for 4 studies. Irritability, aberrant motor behaviour and delusions were the most strongly correlated to distress, disinhibition was the least correlated. Conclusion: The evidence is not conclusive as to whether some BPSD impact caregiver wellbeing more than others. Studies which validly examined BPSD individually were limited, and the included studies used numerous measures of BPSD and numerous measures of caregiver wellbeing. Future research may benefit from a consistent measure of BPSD, examining BPSD individually, and by examining the causal mechanisms by which BPSD impact wellbeing by including caregiver variables so that interventions can be designed to target BPSD more effectively

Nature of behaviours that challenge in residents living in aged care homes: implications for psychosocial interventions and service development

Background/Aims: Competing theories exist regarding the causes and nature of behaviours that challenge (BC). The present study attempted to provide better insight into these behaviours and determine whether there were any underlying relationships for people living in care homes with and without dementia. Methods: Cross sectional data for 2185 residents living in 63 UK care homes using the Challenging Behaviour Scale were collected. The incidence (i.e. presence/absence) of 25 commonly reported behaviours that challenge staff were determined using dichotomous scoring. Cluster analysis and Mokken scaling were used to examine underlying relationships. Mokken is a method of analysing data to determine whether there is a ‘latent’ structure within a data set. Results: The prevalence of reported BC was 87.5%. Cluster analysis revealed three main clusters: apathy, agitation with internal focus, agitation with active external focus. For seven of the 25 items a hierarchical model emerged, where behaviours at the bottom of the hierarchy tended to occur in the presence of those higher up. Behaviours at the bottom of the hierarchy (dangerous behaviour) were less frequently observed than the items at the top (lack of self-care, verbal aggression). Conclusion: Some common BC may occur in groups and themed clusters. This study has shown that a hierarchical structure of BC in residents may be present. The findings testify to the complexity in the aetiology and treatment of BC and hence the need for focussed high intensity bio-psychosocial interventions to be targeted towards those with high levels of ‘unmet need’. Implications for future research and practice are discussed

REMCARE : pragmatic multi-centre randomised trial of reminiscence groups for people with dementia and their family carers : effectiveness and economic analysis

Background Joint reminiscence groups, involving people with dementia and family carers together, are popular, but the evidence-base is limited. This study aimed to assess the effectiveness and cost-effectiveness of joint reminiscence groups as compared to usual care. Methods This multi-centre, pragmatic randomised controlled trial had two parallel arms: intervention group and usual-care control group. A restricted dynamic method of randomisation was used, with an overall allocation ratio of 1:1, restricted to ensure viable sized intervention groups. Assessments, blind to treatment allocation, were carried out at baseline, three months and ten months (primary end-point), usually in the person's home. Participants were recruited in eight centres, mainly through NHS Memory Clinics and NHS community mental health teams. Included participants were community resident people with mild to moderate dementia (DSM-IV), who had a relative or other care-giver in regular contact, to act as informant and willing and able to participate in intervention. 71% carers were spouses. 488 people with dementia (mean age 77.5) were randomised: 268 intervention, 220 control; 350 dyads completed the study (206 intervention, 144 control). The intervention evaluated was joint reminiscence groups (with up to 12 dyads) weekly for twelve weeks; monthly maintenance sessions for further seven months. Sessions followed a published treatment manual and were held in a variety of community settings. Two trained facilitators in each centre were supported by volunteers. Primary outcome measures were self-reported quality of life for the person with dementia (QoL-AD), psychological distress for the carer (General Health Questionnaire, GHQ-28). Secondary outcome measures included: autobiographical memory and activities of daily living for the person with dementia; carer stress for the carer; mood, relationship quality and service use and costs for both. Results The intention to treat analysis (ANCOVA) identified no differences in outcome between the intervention and control conditions on primary or secondary outcomes (self-reported QoL-AD mean difference 0.07 (-1.21 to 1.35), F = 0.48, p = 0.53). Carers of people with dementia allocated to the reminiscence intervention reported a significant increase in anxiety on a General Health Questionnaire-28 sub-scale at the ten month end-point (mean difference 1.25 (0.25 to 2.26), F = 8.28, p = 0.04). Compliance analyses suggested improved autobiographical memory, quality of life and relationship quality for people with dementia attending more reminiscence sessions, however carers attending more groups showed increased care-giving stress. Economic analyses from a public sector perspective indicated that joint reminiscence groups are unlikely to be cost-effective. There were no significant adverse effects attributed to the intervention. Potential limitations of the study include less than optimal attendance at the group sessions—only 57% of participants attended at least half of the intervention sessions over the 10 month period, and a higher rate of study withdrawal in the control group. Conclusions This trial does not support the clinical effectiveness or cost-effectiveness of joint reminiscence groups. Possible beneficial effects for people with dementia who attend sessions as planned are offset by raised anxiety and stress in their carers. The reasons for these discrepant outcomes need to be explored further, and may necessitate reappraisal of the movement towards joint interventions

Factors of resilience in informal caregivers of people with dementia from integrative international data analysis

Background/Aims: Although caring for a person with dementia can be stressful, some caregivers appear to experience few negative consequences to their well-being. This study aimed to examine what proportion of caregivers demonstrates resilience under different challenging circumstances and to identify factors related to their resilience. Methods: Baseline data from 4 studies from the Netherlands and UK among informal caregivers of people with dementia were harmonized and integrated. Caregiver resilience was defined as high levels of psychological well-being despite different types of high caregiving demands. Multivariate regression analyses identified factors significantly related to caregiver resilience. Results: The integrated data set included 15 harmonized variables with data from 1,048 caregivers facing a high care demand. The prevalence of resilience varied between 35 and 43%, depending on the demand for high care. Being a male caregiver, caring for a female, living apart from your relative, and low caregiver burden were positively related to caregiver resilience. Conclusion: Caregivers have the capacity to demonstrate resilience despite significant challenges. This study demonstrates how harmonization of data from multiple existing studies can be used to increase power and explore the consistency of findings. This contributes to a better understanding of which factors are likely to facilitate caregiver resilience and offers insights for developing services