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

Abstract

BackgroundTailored 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.AimsTo understand why some family carers have difficulty in dealing with BPSD, in order to improve the quality of personalised care that is offered.MethodA systematic review and meta-ethnographic synthesis was conducted of high-quality quantitative and qualitative studies between 1980 and 2012.ResultsWe 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.ConclusionsFamily 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.

Challenge Demcare: management of challenging behaviour in dementia at home and in care homes – development, evaluation and implementation of an online individualised intervention for care homes; and a cohort study of specialist community mental health care for families

“…Reasons for CB were associated with changes in communication and misunderstandings about the meaning of the relative's behavior, which was seen by some carers as 'antisocial'. 86 Our conceptual overview and review findings together provide a theoretical and empirically informed grounding for a functional analysis-based framework for choosing interventions for the management of CB. Thus, we conceived case-specific functional analysis-based interventions for CB to include the health and psychological needs of the person with dementia at a given time, as well as attention to the physical and social environment and the caregiving context.…”

“…85 A second systematic review, conducted as part of the present programme, used a meta-ethnographic synthesis to understand why the impact of BPSD in family settings varied from carer to carer. 86 This noted that some reasons for variation in family responses to BPSD were their sense of a 'declining relationship'; or misunderstandings about their relative's behaviour, which were perceived as transgressions against social norms, or underlying beliefs that dementia would inevitably undermine the humanity of their relative.…”

“…Three groups of 'actions' or interventions were designed and tested in the clinical situation, including those to address unmet somatic and psychological need 97,100 in the person with dementia, as well as the caregiving environment, in which consideration of the particular needs of the staff group or family carer were considered. 86,101 These we refer to as functional analysis-based interventions for the management of CB in dementia. These groups were (1) 'actions to support health needs', for example signposting for help by the GP, to alleviate pain or discomfort due to constipation, or review of medications, such as antipsychotics or sedatives that may have been overlooked; 100 (2) 'actions to meet the psychological need of the person, such as how to support the person who may be surrounded by a sense of 'disorder', perhaps trying to escape from this, or feeling 'trapped' or 'set aside'; 102 and (3) 'actions to support the caregiving context, environment or system', 101 such as accessing support for care home staff or psychological therapy for the family carer.…”

“…These groups were (1) 'actions to support health needs', for example signposting for help by the GP, to alleviate pain or discomfort due to constipation, or review of medications, such as antipsychotics or sedatives that may have been overlooked; 100 (2) 'actions to meet the psychological need of the person, such as how to support the person who may be surrounded by a sense of 'disorder', perhaps trying to escape from this, or feeling 'trapped' or 'set aside'; 102 and (3) 'actions to support the caregiving context, environment or system', 101 such as accessing support for care home staff or psychological therapy for the family carer. Thus, in addition to the commonly advocated biopsychosocial approach for the management of CB in dementia care, 103 our system included interventions to address contextual needs such as those of people providing care, which can be associated with CB, 49,86 and are often overlooked (see Chapter 1).…”

Progress in BPSD research: analyzing individual BPSD might hold the key to better support caregivers

“…They often have a significant impact on caregiver well-being and vice versa -caregivers response to BPSD can impact on the well-being of the care recipient with dementia (Feast et al, 2016A). The relationship between caregiver and care-recipient factors when it comes to BPSD is complex and more detailed research is needed to be able to progress to more effective interventions and support.…”