Group cognitive stimulation therapy (CST) has been shown to improve cognition and quality of life of people with dementia in multiple trials, but there has been scant research involving people with intellectual disability and dementia. This study aimed to assess the feasibility of conducting a randomised controlled trial of group CST for this population.

To assess the feasibility of participant recruitment and retention, the appropriateness of outcome measures, and the feasibility of group CST (adherence, fidelity, acceptability), as well as the feasibility of collecting data for an economic evaluation.

Participants were recruited from six National Health Service trusts in England and randomised to group CST plus treatment as usual (TAU) or TAU only. Cognition, quality of life, depression, and use of health and social care services were measured at baseline and at 8–9 weeks. Qualitative interviews with participants, carers and facilitators were used to explore facilitators of and barriers to delivery of CST. Trial registration number: ISRCTN88614460.

We obtained consent from 46 participants, and 34 (73.9%) were randomised: 18 to CST and 16 to TAU. All randomised participants completed follow-up. Completion rates of outcome measures (including health economic measures) were adequate; 75.7% of sessions were delivered, and 56% of participants attended ten or more. Fidelity of delivery was of moderate quality. CST was acceptable to all stakeholders; barriers included travel distance, carer availability and sessions needing further adaptations. The estimated cost per participant of delivering CST was £602.

There were multiple challenges including recruitment issues, a large dropout rate before randomisation and practical issues affecting attendance. These issues would need to be addressed before conducting a larger trial.

National guidance recommends that relatives of people with dementia receive support to develop coping strategies. STrAtegies for RelaTives (START) is an evidence-based manualised intervention for delivery on a one-to-one basis by trained graduate psychologists to family carers of people with dementia. However, implementation of START in standard National Health Service (NHS) provision has proved difficult. We describe collaboration between a Talking Therapies service and a Memory Service to co-facilitate and run START as a group. We consider implementation outcomes according to RE-AIM domains showing: the collaboration reached higher number of carers than other implementation initiatives (reach); there was significant reduction in caregiver anxiety and a trend towards significant reduction in depression (effectiveness); feedback from service users and clinicians on the service model has been positive (adoption); delivery has been supported by the written and audio materials (implementation); and the initiative has sustained over five years, despite the COVID-19 pandemic and staff turnover (maintenance). Finally, we discuss implications and potential future development.

1. (1) To develop knowledge about the content of the STrAtegies for RelaTives (START) coping intervention for family carers of people with dementia.

2. (2) To understand the similarities between low-intensity cognitive behavioural therapy for anxiety and depression, as provided by Psychological Wellbeing Practitioners (PWPs), and START psychoeducational content and skills exercises.

3. (3) To reflect on the rationale for group delivery of START.

4. (4) To consider the benefits of collaboration between Talking Therapies and Memory Services for implementing START.

Psychological therapies can be effective in reducing symptoms of depression and anxiety in people living with dementia (PLWD). However, factors associated with better therapy outcomes in PLWD are currently unknown.

To investigate whether dementia-specific and non-dementia-specific factors are associated with therapy outcomes in PLWD.

National linked healthcare records were used to identify 1522 PLWD who attended psychological therapy services across England. Associations between various factors and therapy outcomes were explored.

People with frontotemporal dementia were more likely to experience reliable deterioration in depression/anxiety symptoms compared with people with vascular dementia (odds ratio 2.98, 95% CI 1.08–8.22; P = 0.03) or Alzheimer's disease (odds ratio 2.95, 95% CI 1.15–7.55; P = 0.03). Greater depression severity (reliable recovery: odds ratio 0.95, 95% CI 0.92–0.98, P < 0.001; reliable deterioration: odds ratio 1.73, 95% CI 1.04–2.90, P = 0.04), lower work and social functioning (recovery: odds ratio 0.98, 95% CI 0.96–0.99, P = 0.002), psychotropic medication use (recovery: odds ratio 0.67, 95% CI 0.51–0.90, P = 0.01), being of working age (recovery: odds ratio 2.03, 95% CI 1.10–3.73, P = 0.02) and fewer therapy sessions (recovery: odds ratio 1.12, 95% CI 1.09–1.16, P < 0.001) were associated with worse therapy outcomes in PLWD.

Dementia type was generally not associated with outcomes, whereas clinical factors were consistent with those identified for the general population. Additional support and adaptations may be required to improve therapy outcomes in PLWD, particularly in those who are younger and have more severe depression.

INDUCT (Interdisciplinary Network for Dementia Using Current Technology), and DISTINCT (Dementia Inter-sectorial strategy for training and innovation network for current technology) are two Marie Sklodowska-Curie funded International Training Networks that aimed to develop a multi-disciplinary, inter-sectorial educational research framework for Europe to improve technology and care for people with dementia, and to provide the evidence to show how technology can improve the lives of people with dementia.

In INDUCT (2016-2020) 15 Early Stage Researchers worked on projects in the areas of Technology to support everyday life; technology to promote meaningful activities; and healthcare technology. In DISTINCT (2019-2023) 15 Early Stage Researchers worked on technology to promote Social health in three domains: fulfilling ones potential and obligations in society, managing one’s own life, and participation in social and other meaningful activities.

Both networks adopted three transversal objectives: 1) To determine practical, cognitive and social factors needed to make technology more useable for people with dementia; 2) To evaluate the effectiveness of specific contemporary technology; 3) To trace facilitators and barriers for implementation of technology in dementia care.

The main recommendations resulting from all research projects are integrated in a web-based digital Best Practice Guidance on Human Interaction with Technology in Dementia which was recently updated (Dec 2022 and June 2023) and will be presented at the congress. The recommendations are meant for different target groups, i.e. people in different stages of dementia, their (in)formal carers, policy makers, designers and researchers, who can easily find the recommendations relevant to them in the Best Practice Guidance by means of a digital selection tool.

The INDUCT/DISTINCT Best Practice Guidance informs on how to improve the development, usage, impact and implementation of technology for people with dementia in various technology areas. This Best Practice Guidance is the result of intensive collaborative partnership of INDUCT and DISTINCT with academic and non-academic partners as well as the involvement of representatives of the different target groups throughout the projects.

1. (1) To be aware that any differences in working with older people are not due to age per se, but factors such as cohort differences and multi-morbidity.

2. (2) To reflect on case examples of CBT with older people.

3. (3) To learn strategies for developing collaborative relationships across an intergenerational divide.

Models of caregiving seldom include the role of stigma when understanding the experiences of carers of people living with dementia.

To investigate the validity of the Family Stigma Instrument (FAMSI), and use it to explore the extent to which experiences of stigma are endorsed in family carers of people living with dementia.

The FAMSI was tested with 70 carers of people living with dementia. They also completed a measure of self-esteem.

The FAMSI demonstrated some good preliminary psychometric properties. Carers endorsed stigma by association more so than affiliate stigma constructs, suggesting that carers were aware that others viewed or treated them in a stigmatising fashion but did not endorse internalised consequences of this as much (e.g. behavioural or affective affiliate stigma).

The FAMSI offers new avenues for understanding the contribution of stigma to caregiver burden in dementia. It also captures the positive aspects of caregiving, which may mitigate internalised stigma in family carers, and has good potential for evaluating stigma-neutralising interventions in dementia care.

Post-diagnostic psychosocial interventions could play an important role in supporting people with mild dementia remain independent. The Promoting Independence in Dementia (PRIDE) intervention was developed to address this.

The mixed methods non-randomized, pre-post feasibility study occurred across England. Facilitators were recruited from the voluntary sector and memory services. Participants and their supporters took part in the three-session intervention. Outcome measures were collected at baseline and follow-up. To evaluate acceptability, focus groups and interviews were conducted with a subsample of participants and facilitators.

Contextual challenges to delivery including national research governance changes, affected recruitment of study sites. Thirty-four dyads consented, with 14 facilitators providing the intervention. Dyads took part in at least two sessions (79%), and 73% in all three. Outcome measures were completed by 79% without difficulty, with minimal missing data. No significant changes were found on pre and post assessments. Post hoc analysis found moderate effect size improvements for self-management (SMAS instrument) in people with dementia (d = 0.41) and quality of life (EQ5D measure) in carers (d = 0.40). Qualitative data indicated that dyads found PRIDE acceptable, as did intervention facilitators.

The three-session intervention was well accepted by participant-dyads and intervention facilitators. A randomized controlled trial of PRIDE would need to carefully consider recruitment potential across geographically varied settings and site stratification according to knowledge of contextual factors, such as the diversity of post-diagnostic services across the country. Letting sites themselves be responsible for identifying suitable intervention facilitators was successful. The self-report measures showed potential to be included in the main trial.

There is emerging evidence that cognitive behavioral therapy (CBT) can be effective for treating anxiety and depression in people living with dementia (PLWD). Discriminating between thoughts and feelings is a critical element of CBT and also of relevance to emotional understanding more generally. The aim of the present study was the structured adaptation and preliminary validation of an existing measure of thought–feeling discrimination for use in PLWD.

The Behavior Thought Feeling Questionnaire (BTFQ) was adapted via expert and service-user consultation for use in PLWD. One hundred two PLWD and 77 people aged over 65 years who did not have measurable cognitive impairments completed the adapted measure along with two measures of emotional recognition and reasoning. The factor structure of this measure was examined and the measure reduced.

Factor analysis suggested a two-factor solution with thought and feeling items loading on separate factors. The behavior items were not included in scoring due to high cross-loading and ceiling effects, leaving a 14-item measure with two subscales. Thus, an adapted measure was created (named the BTFQ-D), which showed moderate convergent validity in the PLWD but not the older adult sample. Both thought and feeling subscales showed good internal consistency.

The BTFQ-D showed preliminary validity as a measure of thought–feeling discrimination in PLWD. It may have utility in measuring readiness for CBT as part of clinical assessment. Further validation is required.

Sense of competence defines a caregiver’s feeling of being capable to manage the caregiving task and is an important clinical concept in the caregiving literature. The aim of this review was to identify the factors, both positive and negative, associated with a caregiver’s perception of their sense of competence.

A systematic review of the literature was conducted, retrieving both quantitative and qualitative papers from databases PsycINFO, CINAHL, EMBASE, and Medline. A quality assessment was conducted using the STROBE and CASP checklists, and the quality rating informed the inclusion of papers ensuring the evidence was robust. Narrative synthesis was employed to synthesize the findings and to generate an updated conceptual model of sense of competence.

Seventeen papers were included in the review, all of which were moderate to high quality. These included 13 quantitative, three mixed-methods and one qualitative study. Factors associated with sense of competence included: behavioral and psychological symptoms of dementia (BPSD), caregiver depression, gratitude, and the ability to find meaning in caregiving.

The results of this review demonstrate that both positive and negative aspects of caring are associated with caregiver sense of competence. Positive and negative aspects of caregiving act in tandem to influence caregiver perception of their competence. The proposed model of sense of competence aims to guide future research and clinical interventions aimed at improving this domain but requires further testing, as due to the observational nature of the include papers, the direction of causality could not be inferred.

Behavioral and psychological symptoms in dementia (BPSD) are important predictors of institutionalization 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 well-being.

Systematic review and meta-analysis of papers published in English between 1980 and December 2015 reporting which BPSD affect caregiver well-being. Paper quality was appraised using the Downs and Black Checklist (1998).

Forty medium and high quality quantitative papers met the inclusion criteria, 16 were suitable to be included in a meta-analysis of mean distress scores. Depressive behaviors were the most distressing for caregivers followed by agitation/aggression and apathy. Euphoria was the least distressing. Correlation coefficients between mean total behavior scores and mean distress scores were pooled for four studies. Irritability, aberrant motor behavior and delusions were the most strongly correlated to distress, disinhibition was the least correlated.

The evidence is not conclusive as to whether some BPSD impact caregiver well-being 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 well-being. Future research may benefit from a consistent measure of BPSD, examining BPSD individually, and by examining the causal mechanisms by which BPSD impact well-being by including caregiver variables so that interventions can be designed to target BPSD more effectively.

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.

To understand why some family carers have difficulty in dealing with BPSD, in order to improve the quality of personalised care that is offered.

A systematic review and meta-ethnographic synthesis was conducted of high-quality quantitative and qualitative studies between 1980 and 2012.

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.

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.

Anxiety is common and problematic in dementia, yet there is a lack of effective treatments.

To develop a cognitive–behavioural therapy (CBT) manual for anxiety in dementia and determine its feasibility through a randomised controlled trial.

A ten-session CBT manual was developed. Participants with dementia and anxiety (and their carers) were randomly allocated to CBT plus treatment as usual (TAU) (n = 25) or TAU (n = 25). Outcome and cost measures were administered at baseline, 15 weeks and 6 months.

At 15 weeks, there was an adjusted difference in anxiety (using the Rating Anxiety in Dementia scale) of (–3.10, 95% CI −6.55 to 0.34) for CBT compared with TAU, which just fell short of statistical significance. There were significant improvements in depression at 15 weeks after adjustment (–5.37, 95% CI −9.50 to −1.25). Improvements remained significant at 6 months. CBT was cost neutral.

CBT was feasible (in terms of recruitment, acceptability and attrition) and effective. A fully powered RCT is now required.

Caregiver efficacy for managing the behavioral and psychological symptoms of dementia (BPSD) is an important determinant of family caregiver stress and burden. This study aims to develop a measure of caregiver efficacy for responding to BPSD and to evaluate its psychometric properties.

The Caregiver Efficacy Scale adds an item for caregiver confidence in managing BPSD to each domain of the Neuropsychiatric Inventory (NPI). The validity, internal consistency, and factor structure of the scale were evaluated in 245 family caregivers.

The results provide adequate support for the validity and reliability of the Caregiver Efficacy Scale. The internal consistency was found to be adequate (Cronbach's α = 0.79) and the scale demonstrated good concurrent, construct, and criterion validity. As expected, performance on the Caregiver Efficacy Scale was associated with all dimensions of the NPI, including BPSD frequency (r = 0.869, p < 0.01) and severity (r = 0.883, p < 0.01), and negative outcomes, including negative affect (r = 0.411, p < 0.01), depression (r = 0.362, p < 0.01), anxiety (r = 0.376, p < 0.01), and distress (r = 0.865, p < 0.01).

The Caregiver Efficacy Scale might have clinical implications in facilitating the development of improved caregiver interventions for dealing with BPSD, allowing interventions to be tailored according to individual caregiver needs, and also in evaluating the effectiveness of interventions aimed at improving caregiver self-efficacy for managing BPSD.