Depression is common in people with dementia, and negatively affects quality of life.

This paper aims to evaluate the cost-effectiveness of an intervention for depression in mild and moderate dementia caused by Alzheimer's disease over 12 months (PATHFINDER trial), from both the health and social care and societal perspectives.

A total of 336 participants were randomised to receive the adapted PATH intervention in addition to treatment as usual (TAU) (n = 168) or TAU alone (n = 168). Health and social care resource use were collected with the Client Service Receipt Inventory and health-related quality-of-life data with the EQ-5D-5L instrument at baseline and 3-, 6- and 12-month follow-up points. Principal analysis comprised quality-adjusted life-years (QALYs) calculated from the participant responses to the EQ-5D-5L instrument.

The mean cost of the adapted PATH intervention was estimated at £1141 per PATHFINDER participant. From a health and social care perspective, the mean difference in costs between the adapted PATH and control arm at 12 months was −£74 (95% CI −£1942 to £1793), and from the societal perspective was −£671 (95% CI −£9144 to £7801). The mean difference in QALYs was 0.027 (95% CI −0.004 to 0.059). At £20 000 per QALY gained threshold, there were 74 and 68% probabilities of adapted PATH being cost-effective from the health and social care and societal perspective, respectively.

The addition of the adapted PATH intervention to TAU for people with dementia and depression generated cost savings alongside a higher quality of life compared with TAU alone; however, the improvements in costs and QALYs were not statistically significant.

The recognition of dementia as a multifactorial disorder encourages the exploration of new pathways to understand its origins. Social health might play a role in cognitive decline and dementia, but conceptual clarity is lacking and this hinders investigation of associations and mechanisms. Social health might provide a new perspective on social connectedness. The objective is to develop a conceptual framework for social health to advance conceptual clarity in future studies and to identify potentially modifiable risk and protective factors in the “Social Health And Reserve in the Dementia patient journey (SHARED)” project.

The methods include the process of building the conceptual framework. We used the following steps: underpinning for concept advancement, concept advancement by the development of a conceptual model, and exploration of its potential feasibility.

Underpinning of the concept drew from a synthesis of theoretical, conceptual and epidemiological work, and resulted in the definition of social health as well-being that relies on capacities both of the individual and the social environment. In the conceptual framework the abstract definition has been elaborated into more precisely defined domains at both the individual and the social environmental levels. This allowed to identify domain related social health characteristics or markers in epidemiological data bases and to investigate associations between these markers and cognitive decline and dementia. The associated social health markers represent potentially modifiable risk and protective factors. Examples are “social engagement” in the participation domain at the individual level, and “frequency of contact” in the structure domain, “exchange of support” in the function domain and “loneliness” in the appraisal domain at the environmental level. The conceptual framework facilitated identification of domain related markers in the SHARED project, thus showing its potential feasibility.

The conceptual framework provides guidance for future research and facilitates identification of potentially modifiable risk and protective factors. These may shape new avenues for preventive interventions. We highlight the paradigm of social health in dementia as a priority for dementia research.

Besides aspects of physical and mental health and quality of life aspects the concept of social health is getting increasing attention in dementia research. Current research has led to a new umbrella concept of social health and first studies show relationships between social health markers and cognitive decline and dementia. But so far, no general overview exists how to measure social health in empirical studies.

The objective of this study therefore is to provide a systematic overview of instruments measuring aspects of social health and proposing a classification based on the new umbrella concept of social health.

Following the PRISMA 2020 guidelines a systematic review was conducted. The online search covered the databases PubMed/MEDLINE, PsychINFO, CINAHL within a publication period from 1st January 2000 till 15th October 2020 for English publications. To classify instruments a new multidimensional framework of social health was used.

A total of 150 studies with 68 single instruments were included into the study. A broad range of study types was covered (i.e., feasibility studies, cross-national panel studies) from all over the world, with the majority of studies being conducted in the USA. Most of the described instruments consist of self-report measures, but also proxy and hybrid tools were found. The length of the instruments in terms of the number of single items ranged from 3-126 items, with a median length of 13 items. On the individual level of social health with the three domains capacities, autonomy and social participation we classified 42 instruments and on the social environment level with the three domains structure, functions and appraisal we classified 53 instruments. A large part of the identified instruments only addresses single aspects of social health and does not address the multidimensionality of the concept.

A structured overview of measures related to the conceptual framework of social health can help develop appropriate interventions for people with dementia and improve the conditions for living well with dementia. Furthermore, the creation of new standardized and terminologically consistent measures of social health is one of the tasks for future research in the field of social health.

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.

After reading this article people will:

1. (1) Be provided with more specific guidance regarding the management of challenging behaviour (CB) in dementia; such guidance was not provided by the update of the NICE guidelines for dementia (2018).

2. (2) Appreciate that the unmet needs perspective helps us both to understand why CB occur and to select appropriate management strategies.

3. (3) Have an increased awareness and knowledge of new models from outside of the field of dementia. For example, through the use of the ‘arousal cycle’ people can recognise that a CB should more realistically be seen as having different phases (beginning, middle, end) rather than being perceived as a single action.

4. (4) Be introduced to the traffic light conceptualisation which provides a useful way for guiding management strategies.

5. (5) Be aware of when best to use resource-intensive formulations.

6. (6) Recognise that in addition to conceptualising the person in relation to the CB, it is helpful to conceptualise the structural elements of the behaviour too.

7. (7) Appreciate the need to help caregivers to recognise their existing skills, and to give carers the means to be able to articulate these abilities. Many care home staff currently work intuitively in the way they deliver care; as such we think they require practical frameworks and protocols to help them better elucidate what they do.

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.

Family caregivers of people living with dementia can have both positive and negative experiences of caregiving. Despite this, existing outcome measures predominately focus on negative aspects of caregiving such as burden and depression. This review aimed to evaluate the development and psychometric properties of existing positive psychology measures for family caregivers of people living with dementia to determine their potential utility in research and practice.

A systematic review of positive psychology outcome measures for family caregivers of people with dementia was conducted. The databases searched were as follows: PsychINFO, CINAHL, MEDLINE, EMBASE, and PubMed. Scale development papers were subject to a quality assessment to appraise psychometric properties.

Twelve positive outcome measures and six validation papers of these scales were identified. The emerging constructs of self-efficacy, spirituality, resilience, rewards, gain, and meaning are in line with positive psychology theory.

There are some robust positive measures in existence for family caregivers of people living with dementia. However, lack of reporting of the psychometric properties hindered the quality assessment of some outcome measures identified in this review. Future research should aim to include positive outcome measures in interventional research to facilitate a greater understanding of the positive aspects of caregiving and how these contribute to well-being.

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.

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.

Depression is a common and costly comorbidity in dementia. There are very few data on the cost-effectiveness of antidepressants for depression in dementia and their effects on carer outcomes.

To evaluate the cost-effectiveness of sertraline and mirtazapine compared with placebo for depression in dementia.

A pragmatic, multicentre, randomised placebo-controlled trial with a parallel cost-effectiveness analysis (trial registration: ISRCTN88882979 and EudraCT 2006-000105-38). The primary cost-effectiveness analysis compared differences in treatment costs for patients receiving sertraline, mirtazapine or placebo with differences in effectiveness measured by the primary outcome, total Cornell Scale for Depression in Dementia (CSDD) score, over two time periods: 0–13 weeks and 0–39 weeks. The secondary evaluation was a cost-utility analysis using quality-adjusted life years (QALYs) computed from the Euro-Qual (EQ-5D) and societal weights over those same periods.

There were 339 participants randomised and 326 with costs data (111 placebo, 107 sertraline, 108 mirtazapine). For the primary outcome, decrease in depression, mirtazapine and sertraline were not cost-effective compared with placebo. However, examining secondary outcomes, the time spent by unpaid carers caring for participants in the mirtazapine group was almost half that for patients receiving placebo (6.74 v. 12.27 hours per week) or sertraline (6.74 v. 12.32 hours per week). Informal care costs over 39 weeks were £1510 and £1522 less for the mirtazapine group compared with placebo and sertraline respectively.

In terms of reducing depression, mirtazapine and sertraline were not cost-effective for treating depression in dementia. However, mirtazapine does appear likely to have been cost-effective if costing includes the impact on unpaid carers and with quality of life included in the outcome. Unpaid (family) carer costs were lower with mirtazapine than sertraline or placebo. This may have been mediated via the putative ability of mirtazapine to ameliorate sleep disturbances and anxiety. Given the priority and the potential value of supporting family carers of people with dementia, further research is warranted to investigate the potential of mirtazapine to help with behavioural and psychological symptoms in dementia and in supporting carers.

Psychosocial interventions can improve behaviour and mood in people with dementia, but it is unclear how to maximise their effectiveness or acceptability in residential settings.

To understand what underlies the successful implementation of psychosocial interventions in care homes.

Systematic review and meta-synthesis of qualitative research.

The synthesis of 39 qualitative papers revealed that beneficial psychosocial interventions met the needs of people with dementia to connect with others, make a meaningful contribution and reminisce. Successful implementation rested on the active engagement of staff and family and the continuing provision of tailored interventions and support. This necessitated staff time, and raised issues around priorities and risk, but ultimately helped redefine staff attitudes towards residents and the caregiving role.

The findings from the meta-synthesis can help to inform the development and evaluation of psychosocial interventions in care homes and support their widespread implementation in clinical settings.