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

Improving health-promoting self-care in family carers of people with dementia: a review of interventions

Background: Providing care for a family member with dementia can leave little time for carers to look after their own health needs, which makes them more susceptible to mental and physical health problems. This scoping review aimed to explore potential health benefits of interventions aimed at improving health-promoting self-care in family carers of people with dementia.Methods: A scoping review was carried out using Arksey and O’Malley’s methodological framework. EMBASE, MEDLINE, PsycINFO, Google Scholar databases. Original and peer-reviewed research published in English up to April 2017 were included. Publications were selected by two reviewers independently. Eight experts from several countries provided extra relevant information, which was triangulated with the review results. A narrative approach was used to describe and discuss the review findings.Results: Seven interventions were identified. These were highly heterogeneous in content, method of delivery and outcome measures. None was specifically focused on improving and evaluating health-promoting self-care, instead they often focused on health promotion and healthy lifestyle (e.g. physical activity). Some of the multi-component interventions included ‘self-care’ as a domain, but as none used a specific measure of health-promoting self-care, so we are unable to affirm that the improvements found in the interventions were due to an improvement in this area. Interventions helped reduce carer depression and burden and increased quality of life, positive affect and physical activity. The expert panel recommended to consider carers’ preparedness and capacity to adhere to self-care practices, as well as carers’ age and culture. Future interventions should be context specific, flexible and person-centered.Conclusions: Psychosocial interventions may improve health-promoting self-care behavior, but more research is needed to establish efficacy. Interventions should be flexible, use a person-centered approach, be implemented with fidelity and use the right dosage

Improving the quality of life of care home residents with dementia: cost-effectiveness of an optimized intervention for residents with clinically significant agitation in dementia

Introduction: To examine whether an optimized intervention is a more cost-effective option than treatment as usual (TAU) for improving agitation and quality of life in nursing home residents with clinically significant agitation and dementia. Methods: A cost-effectiveness analysis within a cluster-randomized factorial study in 69 care homes with 549 residents was conducted. Each cluster was randomized to receive either the Well-being and Health for people with Dementia (WHELD) intervention or TAU for nine months. Health and social care costs, agitation, and quality of life outcomes were evaluated. Results: Improvements in agitation and quality of life were evident in residents allocated to the WHELD intervention group. The additional cost of the WHELD intervention was offset by the higher health and social care costs incurred by TAU group residents (mean difference, £2103; 95% confidence interval, −13 to 4219). Discussion: The WHELD intervention has clinical and economic benefits when used in residents with clinically significant agitation

Factor and reliability analysis of a brief scale to measure motivation to change lifestyle for dementia risk reduction in the UK: the MOCHAD-10.

Background: Modifying lifestyle risk factors for dementia is a public health priority. Motivation for change is integral to the modification of health-related risk behaviours. This study investigates the psychometric properties of the previously validated tool entitled ‘Motivation to Change Lifestyle and Health Behaviours for Dementia Risk Reduction Scale’ (MCLHB-DRR) for use in the UK. Methods: A sample of 3,948 individuals aged 50 and over completed the 27-item MCLHB-DRR online. The psychometric properties of the scale were explored via Exploratory Principal Axis Factoring (PAF) with Oblimin rotation. Confirmatory Factor Analysis (CFA) was used to confirm the factor structure using chi-square (χ2), the goodness-of-fit index (GFI), the comparative fit index (CFI), the root mean square error of approximation (RMSEA) and Root Mean Square Residual (RMR) as fit indices to evaluate the model fit. Internal consistency (Cronbach α) was measured for the final scale version. Results: Exploratory Factor Analysis (EFA) resulted in a parsimonious 10-item, two-factor structure (5 items each, factor loadings > 0.3) that explained 52.83% of total variance. Based on the Pattern Matrix, Factor 1 was labelled “Positive Cues to Action” and Factor 2 was labelled “Negative Cues to Action”. After addressing some errors in covariances, CFA showed a good fit where all fit indices were larger than 0.90 (GFI = 0.968, CFI = 0.938) and smaller than 0.08 (RMSEA = 0.072, RMR = 0.041). The standardized coefficients of Factor 1 and Factor 2 ranged from 0.30 to 0.73 and were all statistically significant (p < 0.001). The final scale showed moderate to high reliability scores (Factor 1 α = 0.809; Factor 2 α = 0.701; Overall α = 0.785). Conclusions: The new MOCHAD-10 (Motivation to Change Behaviour for Dementia Risk Reduction Scale) is a short, reliable and robust two-factor, 10-item clinical tool for use in preventative health care and research to evaluate motivation to change lifestyle for dementia risk reduction.Alzheimer’s Research UK (Midland) - Nottingham University

Apathy and its response to antipsychotic review and non-pharmacological interventions in people with dementia living in nursing homes : WHELD, A factorial cluster randomised controlled trial

Objectives: Apathy is common, impactful, and difficult to manage in people with dementia. We evaluated the efficacy of non-pharmacological interventions, exercise and social interaction, in combination with antipsychotic review, to reduce apathy in people with dementia living in nursing homes in a cluster randomised controlled trial (RCT). Methods: Well-being and health for people with dementia (WHELD) programme included a 2X2X2 factorial cluster RCT involving people with dementia living in 16 nursing homes in UK. All homes received training in person-centred care, and were randomised to receive antipsychotic review, social interaction, and exercise, either alone or in combinations. Apathy was one of the secondary outcomes of the WHELD trial, and it was measured by the Neuropsychiatric Inventory-nursing home version at baseline and nine months (N=273). We employed multilevel mixed effects linear regression models to assess the impact of the interventions on apathy. Results: Prevalence of apathy was 44.0% (n=120; 95% CI 38.1-49.9%) at baseline. Severity of apathy had significant positive correlations with dementia severity, neuropsychiatric symptoms, depressive symptoms, agitation, and the needs of the people with dementia (p&lt;0.001). Antipsychotic review reduced antipsychotic use, but it significantly increased apathy (β=5.37; SE=0.91; p&lt;0.001). However, antipsychotic review in combination with either social interaction (β=-5.84; SE=1.15; p&lt;0.001) or exercise (β=-7.54; SE=0.93; p&lt;0.001) significantly reduced apathy. Conclusions: Antipsychotic review can play a significant role in improving apathy in people with dementia living in nursing homes, when combined with psychosocial interventions such as social interaction and exercise. Guidance must be adapted to reflect this subtlety in care

Loneliness, social integration, and incident dementia over 6 years: prospective findings from the English longitudinal study of ageing

Objectives: Social relationships are important for the maintenance of cognitive function at older ages, with both objective features of social networks and perceived social connections (loneliness) being relevant. There is limited evidence about how different aspects of social experience predict diagnosed dementia. Methods: The sample comprised 6,677 dementia-free individuals at baseline (2004) from the English Longitudinal Study of Ageing. Baseline information on loneliness, number of close relationships, marital status, and social isolation (contact with family and friends and participation in organizations) was analyzed in relation to incident dementia over an average 6.25 years using Cox regression, controlling for potential confounding factors. Results: Two hundred twenty participants developed dementia during follow-up. In multivariable analyses, dementia risk was positively related to greater loneliness (hazard ratio 1.40, 95% confidence interval 1.09-1.80, p = .008), and inversely associated with number of close relationships (p < .001) and being married (p = .018). Sensitivity analyses testing for reverse causality and different criteria for diagnosing dementia confirmed the robustness of these findings. There was no association with social isolation. Discussion: Dementia risk is associated with loneliness and having fewer close relationships in later life. The underlying mechanisms remain to be elucidated, but efforts to enhance older peoples' relationship quality may be relevant to dementia risk

Dyadic construction of dementia: meta-ethnography and behaviour-process synthesis

Objectives: Positive identity in people with dementia is maintained when there is good interaction with family caregivers. However, research on the experiences of dyadic interaction in dementia care is still limited. For this reason, we aimed to systematically review the dyadic experience of dementia caring. Method: Studies were identified through searching five databases: MedLine, EMBASE, PsycInfo, ASSIA, and CINAHL. Eligible studies employed qualitative or mixed method design, reported the experience of dyads of dementia with no comorbid organic or psychiatric disorders. No restrictions were made on language or year of publication, nor on sex or age of participants. The quality appraisal of studies was conducted by two researchers independently. We used meta-ethnography to synthesise data and developed a behavioural model to explain dyadic interaction. Results: A total of 17 studies were included in the review. The meta-ethnography generated two third-order constructs: Personal orientation and noises. When both people with dementia and their carers opt for dyadic oriented goals, their behavioural responses are likely to promote positive interaction. When only one partner opts for dyadic goals, the stress posed by the context may affect the interaction because of no perceived shared understanding of the situation. Conclusion: Our findings suggest that unequal power distribution within dementia dyads, can cause significant stress especially when coping strategies are impaired. Implications are found for family carers, people with dementia, and health professionals as the model we derived enhances the understanding of dyadic dynamics to care

Improving the care of people with dementia in general hospitals: evaluation of a whole-system train the trainer model

Background: There are concerns about the quality of care that people with dementia receive in the general hospital. Staff report a lack of confidence and inadequate training in dementia care. Methods: A train-the-trainer model was implemented across eight acute hospital trusts in London via a large academic health and science network. Impact was evaluated using mixed methods. Data was collected at (a) Individual level: ‘Sense of Competence in Dementia Care’ (SCID) (b) Ward level: Person Interaction and Environment (PIE) observations (c) Organisation level: use of specific tools i.e. “This Is Me”, (d) Systems level: numbers and types of staff trained per trust. Results were analysed with descriptive statistics and paired t-test with thematic framework analysis for PIE observations. Results: Number of staff trained per trust ranged from 67 to 650 (total 2,020). 1,688 (85%) baseline questionnaires and 456 (27%) 3 month follow-up questionnaires were completed. Mean SCID score was 43.2 at baseline and 50.7 at follow-up (paired t-test, p<0.001). All sub-scales showed a small increase in competence, the largest being for ‘building relationships’. Organisational level data suggested increased use of carer’s passport, “This Is Me” documentation, dementia information leaflets, delirium screening scales and pathways. PIE observations demonstrated improved staff-patient interactions but little change in hospital environments. Conclusions: There was a significant improvement in staffs’ sense of competence in dementia care and the quality of interactions with patients. More hospitals adopted person centred tools and pathways. Work is required to investigate if these changes improve hospital outcomes for people with dementia