A mixed methods exploration into the management of behavioural and psychological symptoms of dementia in care homes: care approaches, strategies and psychotropic medications

The management of behavioural and psychological symptoms of dementia (BPSD) has gained media and policy attention recently. Antipsychotic medications have been used for these behaviours. Due to the potential risks associated with these medications the Department of Health in England has called for a reduction in their use for people with dementia. Non-pharmacological interventions have been recommended as safer alternatives. The aim of this study was to explore the strategies used in care homes to manage behavioural and psychological symptoms of dementia. The study used a mixed methods, sequential, two phase design. A postal survey of 747 care homes was conducted. The response rate for the survey was 40% (n=299). This directed purposive sampling for four in-depth case studies in care homes, which included: interviews with 40 care home staff, 384 hours of participant observations, and the mapping of 22 residents’ psychotropic medication administration records. Multiple implicit and explicit care strategies, non-pharmacological interventions, and psychotropic medications were used concurrently in care homes. Twelve percent of care home residents were reported to be prescribed at least one antipsychotic medication. Formal non-pharmacological interventions were predominantly used, and viewed, by staff as activities for all residents and not targeted at the management of behaviours. The risks and impacts of behaviours posed challenges for care staff. Person-centred care was difficult to provide consistently. This thesis provides an important examination of the strategies that care workers have adopted, developed and implemented to manage behavioural and psychological symptoms of dementia in care homes. The findings portray a gap between rhetoric and practice, with implicit care strategies (some questionable) and perceived usual care approaches employed more than formal non-pharmacological interventions. A theoretical contribution is made by problematising the delivery of person-centred care in communal settings where care workers must constantly negotiate competing demands, risks and organisational constraints

Understanding and reducing refusals of personal care in dementia

Background: Refusals of assistance with personal care in dementia can be a major source of distress for people living with dementia and their caregivers. Aims: This article examines refusals of care and considers ways of minimising them. Methods: Summary of factors related to refusals of care. Findings: Refusals of care in dementia are common, can occur for many reasons, and can contribute to poor hygiene and caregiver burden. Safeguarding legislation is in place to help guide practitioners and person-centred care can be one way to help reduce and manage refusals. Charities and other organisations suggest multiple ideas to manage refusals. Research evidence for formal interventions is limited, with most evidence for music interventions, bathing modifications and communication techniques. Conclusions: A holistic approach tailored to each person could prevent, reduce or manage refusals of care. Using non-pharmacological interventions and person-centred care, modifying the caregiver approach, adapting to the person’s preferences, minimising the care task, eliminating underlying issues and altering the environment may reduce the likelihood of refusals

Caring for people with dementia in their own homes: homecare workers’ experiences of tolerating and mitigating risk

Little is known about risk management in homecare for people with dementia. We aimed to gain an understanding of the ways in which homecare workers assess and manage risk whilst caring for people with dementia in their own homes. We conducted a qualitative interview study with 17 homecare workers assisting people with dementia with their personal care. Interviews were face-to-face, semi-structured, recorded and transcribed verbatim. Analysis was inductive and thematic. A key theme of risk was identified, with three main sources: the client as a source of risk to the homecare worker, the clients’ home and behaviours as a risk to the client, and the wider health and social care system as a risk to both clients and homecare workers. Three interrelated aspects of risk were found to influence homecare workers’ decision-making and actions: homecare workers perception of the level of risk, their perceived ability to control the risk, and their tolerability of risk. The higher the perceived risk, the stronger the action taken by the worker or agency to mitigate it and the greater the impact on the client. To support effective development of this workforce there is a need to devise training that incorporates the use of tacit knowledge and experiential learning. Risk management policies for homecare should acknowledge and utilise the expertise, experiences and values of homecare workers

Older care-home residents as collaborators or advisors in research: a systematic review

Background: patient and public involvement (PPI) in research can enhance its relevance. Older care-home residents are often not involved in research processes even when studies are care-home focused. Objective: to conduct a systematic review to find out to what extent and how older care-home residents have been involved in research as collaborators or advisors. Methods: a systematic literature search of 12 databases, covering the period from 1990-September 2014 was conducted. A lateral search was also carried out. Standardised inclusion criteria were used and checked independently by two researchers. Results: 19 reports and papers were identified relating to 11 different studies. Care-home residents had been involved in the research process in multiple ways. Two key themes were identified: (i) the differences in residents’ involvement in small-scale and large-scale studies, (ii) the barriers to and facilitators of involvement. Conclusions: small-scale studies involved residents as collaborators in participatory action research, whereas larger studies involved residents as consultants in advisory roles. There are multiple facilitators of and barriers to involving residents as PPI members. The reporting of PPI varies. While it is difficult to evaluate the impact of involving care-home residents on the research outcomes, impact has been demonstrated from more inclusive research processes with care-home residents. The review shows that older care-home residents can be successfully involved in the research process

The use of non-pharmacological interventions for dementia behaviours in care homes: findings from four in-depth, ethnographic case studies

Background: antipsychotic medications have been used to manage behavioural and psychological symptoms of dementia (BPSD). Due to the potential risks associated with these medications for people with dementia, non-pharmacological interventions (NPIs) have been recommended as safer alternatives. However, it is unknown if, or how, these interventions are used in care homes to help people experiencing BPSD. Aim: to explore the use of NPIs in care homes to manage BPSD. Methods: In-depth, ethnographic case studies were conducted in four care homes; in total, they included interviews with 40 care-home staff and 384 hours of participant observations. Findings: NPIs, some of which are the focus of efficacy research, were used in care homes but predominantly as activities to improve the quality of life of all residents and not identified by staff as meeting individual needs in order to prevent or manage specific behaviours. Socially relevant activities such as offering a cup of tea were used to address behaviours in the moment. Residents with high levels of need experienced barriers to inclusion in the activities. Conclusions: there is a gap between rhetoric and practice with most NPIs in care homes used as social activities rather than as targeted interventions. If NPIs are to become viable alternatives to antipsychotic medications in care homes, further work is needed to embed them into usual care practices and routines. Training for care-home staff could also enable residents with high needs to gain better access to suitable activities

Strategies and interventions to reduce or manage refusals in personal care in dementia: a systematic review

Background: Refusals of care in dementia are common and can create difficult situations for caregivers. Little is known about the best way to manage them. Aim: To identify possible strategies and interventions to reduce or cope with refusals of care in dementia, and determine the evidence for these.  Methods: We searched MEDLINE, CINAHL, PsycINFO, EMBASE, AMED and Cochrane Central Register of Controlled Trials databases August 2018, with an updated search August 2019. An additional lateral search was conducted. Two researchers screened all records for potential eligibility and quality. Narrative synthesis was used to combine the findings.  Results: Out of the 5953 records identified, 36 articles, relating to 30 studies, met the eligibility criteria. Twenty-eight of the studies (93%) were set in long-term care facilities, one in a psychogeriatric unit and one with community dwelling people. Fourteen out of the 30 studies focussed on general or mixed care activities, 8 bathing, 4 mealtimes, 2 medication administration, and 2 mouth care. Strategies or interventions identified as potential ways to reduce refusals included: music interventions, interaction and communication style, caregiver approach, bathing techniques, abilities focussed approaches, distraction approaches, and video-simulated presence of a loved one. There was most evidence for music interventions and different bathing techniques, and interaction and communication styles were associated with reduced refusals. There was no evidence that slow-stroke massage (mixed care activities) or aromatherapy (mixed care activities and medication administration) reduced refusals of care.  Conclusions: Some non-pharmacological interventions can reduce, but not eliminate, refusals of care, such as playing music during care or communicating positively without using elderspeak. More research evidence is needed to underpin strategies identified as encouraging such as Namaste Care or distraction techniques. Future research should address gaps identified such as, the absence of research examining non-pharmacological interventions for refusals of care in hospital settings and in community settings with home-care workers, and the limited research involving family carers. Tweetable abstract: Playing music during care and offering different bathing options can reduce refusal behaviours in dementia, whereas elderspeak and negative communication are associated with refusals

Most common refusals of personal care in advanced dementia: psychometric properties of the RoCIS

Background and Objectives: Refusals of care in dementia can be a source of distress for people with dementia and their caregivers. Informant-based measures to examine refusals of care are limited and often measure other behaviours such as agitation. We aimed to assess the validity and reliability of the newly developed, 14-item, Refusals of Care Informant Scale (RoCIS) and then use the scale to verify the most common refusal behaviours. Research Design and Methods: Data from 129 dyads were analysed. Dyad was defined as a person with advanced dementia either living in a care home or supported in their own home and their caregiver. Data about the person with dementia were gathered using informant-based questionnaires. The psychometric properties of the RoCIS were investigated using Rasch analysis to determine validity and reliability. Results: Following Rasch analysis, the item ‘upset’ was removed from the RoCIS. The reduced 13-item RoCIS is unidimensional and achieved a reliability index of 0.85 (Cronbach’s alpha 0.88). 68% of people with dementia had refused care in the last month, with ‘verbally refused’ the most common type of refusal behaviour. People in the ‘very severe/profound’ stage of dementia showed more refusal behaviours than those in the ‘severe’ stage. Discussion and Implications: Results provide initial evidence that the RoCIS is a valid and reliable informant-based scale measuring refusals of care in advanced dementia. Results indicate a need to develop new approaches and techniques to make assistance with personal care more acceptable to people with dementia

How do family carers and care-home staff manage refusals when assisting a person with advanced dementia with their personal care?

Background and objectives: Caregivers may encounter, or inadvertently cause, refusals of care by a care recipient. Managing refusals of care can be challenging and have potential negative consequences. We aimed to examine caregivers’ (care-home staff and family carers) experiences of managing refusals of personal care in advanced dementia. Research design and methods: One-to-one semi-structured interviews with twelve care assistants from six care homes and 20 family carers who were physically assisting a person with advanced dementia with their personal care in the UK. Interviews were audio recorded and transcribed verbatim, with data analysed using qualitative content analysis. Findings: Core to the caregiver experience of refusals of care was knowing the person. This underpinned five key themes identified as caregivers’ strategies used in preventing or managing refusals of care: 1) finding the right moment to care; 2) using specific communication strategies; 3) being tactful: simplifying, leaving, or adapting care; 4) having confidence in care; and 5) seeking support from others when safety is at risk. Discussion and implications: Different caregiver relationships with the person with dementia influenced how they managed refusals of care. Refusals of care can place caregivers in tough situations with tensions between providing care when it is seemingly not wanted and leaving care incomplete. Both caregiver groups require support such as coaching, mentoring and/or advice from other health and social care practitioners to manage difficult personal care interactions before crisis points occur

Is carer management style associated with longitudinal functional decline in dementia?

Background: Various intrinsic (related to dementia) and extrinsic (not related to dementia) factors have been suggested to contribute separately to disability in people living with dementia (PLwD). Objective: To investigate if the combination of specific intrinsic and extrinsic factors at baseline is associated with longitudinal declines in activities of daily living (ADL) performance of PLwD at 12-month follow-up. Methods: 141 community-dwelling PLwD-carer dyads were assessed on their global cognition (ACE-III), apathy (CBI-R), carer management styles (DMSS), medical comorbidities (CCI), and ADL performance (DAD) at baseline, and for a subset of participants (n = 53), at 12-month follow-up. Multiple linear regression models were run to assess: 1) the relationships between PLwD’s DAD scores and the remaining variables at baseline and 2) whether these variables’ scores at baseline were associated with longitudinal change in the PLwD’s DAD scores. Results: At baseline, having lower ACE-III (β = 0.354, p < 0.001), higher CBI-R (β = –0.284, p < 0.001), higher DMSS criticism (β = –0.367, p = 0.013), lower DMSS encouragement (β = 0.370, p = 0.014), and higher CCI scores (β = –2.475, p = 0.023) were significantly associated with having lower DAD scores. The PLwD’s DAD scores significantly declined from baseline to follow-up (p < 0.001, d = 1.15), however this decline was not associated with the baseline scores of any of the independent variables. Instead, it was associated with declines in the PLwD’s ACE-III scores from baseline to follow-up (β = 1.021, p = 0.001). Conclusions: In our limited sample, cognitive changes seem to be the main factor underlying longitudinal decline in ADL performance for PLwD. Carer management styles appear associated with current ADL performance but not with longitudinal ADL decline

Navigating an emotional journey: A qualitative study of the emotional experiences of family carers currently supporting people living with motor neurone disease

Background: Family carers of people living with motor neurone disease (MND) face continuous changes and losses during the progression of the disease, impacting on their emotional wellbeing. Carers’ emotions might affect their engagement in everyday activities and their caring role. However, how carers manage their emotions and which strategies they identify as useful to cope with them while caring is under researched. Objective: To identify the emotional experiences and coping strategies of MND family carers while caring the person living with MND. Methods: We conducted 14 semi-structured interviews with family carers currently supporting people living with MND living in the UK. Interviews were audio/video recorded and professionally transcribed verbatim. We analyzed data inductively within an interpretive descriptive approach, using reflexive thematic analysis. Results: Three key themes were generated from the analysis. Destabilization of diagnosis reflected the devastating impact the diagnosis had on carers, characterized by initial overwhelming emotions. Adapting to new circumstances and identifying coping strategies captured how carers experienced everyday changes and losses and how they gradually adjusted to the situation by identifying coping strategies to be able to manage arising emotions. Maintaining emotional coping encompassed how carers used individual strategies they had tried before and had worked for them to cope emotionally with the continuous changes and losses while preserving their emotional wellbeing. Significance of results: Our findings suggest that carers of people living with MND embark on an emotional journey from the diagnosis of the disease. As the disease progresses, carers adopt coping strategies that best work for them to manage their emotions (e.g., living day by day and seeking support). Understanding the key strategies used to support emotional coping during the caring journey and how carers re-construct their emotional life around MND could help inform future practice and research to better support carers of this population