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Objectives: Relationship quality (RQ) between a person with dementia and a family carer may influence their health and quality of life. However, evidence regarding its course and influencing factors is limited. We aimed to explore RQ trajectories in dementia, and identify predictors of change., Methods: We analysed longitudinal data from a cohort of 350 community-dwelling people with dementia and their informal carers, participating in the Actifcare study in eight European countries. The Positive Affect Index, rated separately by both people with dementia and their carers, assessed RQ. Other measures included the Neuropsychiatric Inventory Questionnaire (regarding persons with dementia), and the Relative Stress Scale, Sense of Coherence Scale and Lubben Social Network Scale (for carers). Trajectories and influencing factors were explored applying a latent growth model (LGM)., Results: RQ in the group of carers declined over 1 year, but RQ scores for the persons with dementia did not change. Higher stress in carers negatively influenced their baseline RQ ratings. Carer sense of coherence and being a spouse were associated with more positive baseline RQ carer assessments. Higher levels of neuropsychiatric symptoms were linked to decline in carers' RQ, whereas social support was associated with more positive RQ trajectories., Conclusion: This study provides a valuable insight into the course of RQ. LGM proved useful to explore the factors that influence RQ trajectories and variability within- and between-persons. Our findings emphasise the importance of carer-perceived social support and sense of coherence, and of reducing neuropsychiatric symptoms, in maintaining a good RQ.

Objectives: To examine prospectively the association between unmet needs for daytime activities and company and behavioural and psychological symptoms of dementia., Methods: We included 451 people with mild or moderate dementia, from eight European countries, who were assessed three times over 12 months. Unmet needs were measured with the Camberwell Assessment of Need for the Elderly. Three sub-syndromes of the Neuropsychiatric Inventory-Questionnaire were regressed, one-by-one, against unmet needs for daytime activities and company, adjusting for demographic and clinical-functional covariates., Results: Unmet needs for daytime activities were associated with more affective symptoms at baseline, six and twelve months, mean 0.74 ( p  < 0.001), 0.76 ( p  < 0.001) and 0.78 ( p  = 0.001) points higher score respectively, and with more psychotic symptoms at baseline (mean 0.39 points, p  = 0.007) and at six months follow-up (mean 0.31 points, p  = 0.006). Unmet needs for company were associated with more affective symptoms at baseline, six and twelve months, mean 0.44 ( p  = 0.033), 0.67 ( p  < 0.001) and 0.91 ( p  < 0.001) points higher score respectively, and with more psychotic symptoms at baseline (mean 0.40 points, p  = 0.005) and at six months (mean 0.35 points, p  = 0.002) follow-up., Conclusion: Interventions to reduce unmet needs for daytime activities and company could reduce affective and psychotic symptoms in people with dementia.

Objectives: Home-dwelling people with dementia and their informal carers experience barriers impeding access to community care services. This study is a part of the Actifcare project where eight countries participated. The aim was to achieve consensus on best practice recommendations for enhancing access to and use of formal community care services., Method: A Delphi consensus process was conducted. A total of 48 professional experts, 14 people with dementia and 20 informal carers rated the importance of 72 statements on a 7-point Likert scale. Consensus was based on the median and level of dispersion., Results: Sixty-two statements reached consensus, resulting in three categories of recommendations. An appointed contact person was central in Recommendations to enhance access . Coordination and flexibility in setting and type of services were among the Recommendations to enhance use . Training of health care personnel and person-centred care were central Recommendations that can facilitate access or use indirectly ., Conclusion: The Actifcare Best Practice Recommendations suggest practical measures that can be taken by decision makers to enhance access and use of community care services, and thereby enhance quality of care and quality of life for home dwelling people with dementia and their informal carers.

Objectives: Resilience-building interventions have not yet targeted older adults, despite the importance of well-being for maintaining independence and health. The 'My Generation' programme aims to build resilience through greater access to social networks, well-being activities, and psycho-educational support; this paper examines service evaluation data from its pilot implementation to identify factors leading to positive outcomes., Method: The 'My Generation' programme comprises eight weekly 2-hour group sessions; each session includes both psychoeducation and a well-being activity. Participants were invited to complete questionnaires at the start and end of the course, and 12 weeks later. These included measures of well-being, loneliness, social connections and self-efficacy., Results: Baseline assessments were completed by 239 older people (average age 71, range 50-97), attending 38 courses in four centres. Most were female (80%), 40% were widowed, 25% divorced/separated and 64% lived alone. Demographics did not differ between those completing post-intervention assessments ( N  = 137) and those who did not. Compared with normative data, participants had significantly lower well-being and greater feelings of loneliness than age-peers. Significant improvements in well-being, self-efficacy, social connections and one measure of loneliness were evident at post-intervention and follow-up assessments. Improvement in well-being at post-intervention was greater in those who were divorced/separated and who were not carers, and at follow-up in females and those living alone., Conclusion: The 'My Generation' package appeared effective in improving well-being, self-efficacy, social connections and aspects of loneliness in at-risk older people. More research is needed to identify the intervention's key components and possible between-centre differences in outcomes.

Objective: To provide a new perspective on integrated biomedical and psychosocial dementia research., Background: Dementia is being recognized as a multifactorial syndrome, but there is little interaction between biomedical and psychosocial approaches. A way to improve scientific knowledge is to seek better understanding of the mechanisms underlying the interaction between biomedical and psychosocial paradigms. One rationale for integrating biomedical and psychosocial research is the discordance between neuropathology and cognitive functioning. The concept of social health might bridge the two paradigms. It relates to how social resources influence the dynamic balance between capacities and limitations., Hypotheses: Social health can act as the driver for accessing cognitive reserve, in people with dementia through active facilitation and utilization of social and environmental resources. Thereby we link lifestyle social and opportunities to the brain reserve hypothesis., Manifesto: We provide a Manifesto on how to significantly move forward the dementia research agenda.

Objectives: It is essential to develop interventions that meet individual needs for coping and self-management of people with dementia. This study explored the feasibility and applicability of an intervention merging methods of cognitive rehabilitation and self-management groups for people with early stage dementia. The potential of this intervention to promote adoption of assistive technology was also explored. Method: People with early stage Alzheimer's disease (N = 19) participated in the programme comprising both individual and group sessions. Caregivers were involved in the individual session and a separate group meeting. The intervention both addressed individual goals and more general self-management approaches. In addition, both participants and caregivers were introduced to the ReACT app, a holistic solution tailormade to meet self-management needs of people with early stage dementia. Results: There was significant improvement in the participants' attainment of individual goals and satisfaction with goal attainment from pre- to post-intervention. Participants and caregivers generally reported a positive attitude towards the intervention, attendance rate was high, and all participants completed the intervention. Qualitative results also indicated that the intervention promoted awareness, acceptance and coping among participants. The specific benefits of using the ReACT app for self-management were also emphasised. Forty-two percent of the participants adopted the app and continued using it after completing the intervention. Conclusion: Results from this pilot study indicated that the intervention is both feasible and applicable and can be an effective method to promote coping and adoption of assistive technology among people with early stage dementia.

Objectives: Little is understood about the optimal way to implement digital life story work (LSW). The aim of this research was to explore the preferences of people with dementia and caregivers in relation to digital LSW in an effort to improve future engagement. Methods: 67 caregivers responded to an online discrete choice experiment (DCE) survey containing 16 pairwise choices. The DCE was analysed using a random effects logit model. Willingness to pay and odds ratios were also calculated. 17 participants with dementia completed an online survey in which they made choices about different aspects of digital LSW services. Results: Caregivers valued four out of five attributes [setting ( p  = 0.000), price ( p  = 0.000), elementary usability and accessibility ( p  = 0.001), and follow-up assistance ( p  = 0.034)]. In data from participants with dementia, the most preferred setting was individual one-to-one (70.6%), and the most preferred use of digital life storybooks was to share memories with others (64.7%). Marginally more participants with dementia said they would pay for the service (53%) rather than only use it free of charge (47%). Those with advanced ICT skills preferred to learn how to use the digital life storybook (64.7%), while those with elementary/intermediate skills, preferred to have it created for them (35.3%). Conclusions: This exploratory study provides an insight into preferences of people with dementia and caregivers, of how digital LSW is implemented. Results can contribute to future planning and tailoring of these services.

Objectives: Home dwelling people with dementia and their informal carers often do not receive the formal care services they need. This study examined and mapped the research regarding interventions to improve access and use of formal community care services. Method: This is a scoping review with searches in PubMed, CINAHL, PsychINFO, Medline, Cochrane Database of Systematic Reviews, Social Science Citation index and searches of grey literature in international and national databases. Studies were categorized according to the measure used to enhance access or use. Results: From international databases, 2833 studies were retrieved, 11 were included. Five studies were included from other sources. In total, 16 studies published between 1989 and 2018 were examined; seven randomized controlled trials, six pretest-posttest studies and three non-randomized controlled studies. Sample sizes varied from 29 to 2682 participants, follow-up from four weeks to four years. Five types of interventions were identified: Case management, monetary support, referral enhancing, awareness & information focused and inpatient focused. Only two studies had access or use of community services as the primary outcome. Fourteen studies, representing all five types of interventions, had positive effects on one or more relevant outcomes. Two interventions had no effect on relevant outcomes. Conclusion: The included studies varied widely regarding design, type of intervention and outcomes. Based on this, the evidence base for interventions to enhance access to and use of formal community services is judged to be limited. The most studied type of intervention was case management. More research is recommended in this field.

Objectives: Previously developed dementia caregiver profiles defined by caregiver age and burden, have been associated with caregiver quality of life, depression and perseverance time. The current aim was to investigate whether these caregiver profiles could predict subsequent service use. In addition, non-personal (e.g. meals on wheels) and supportive services (e.g. Alzheimer café) in early dementia were investigated as predictors. Methods: A total of 451 dyads of people with dementia and their informal caregivers from eight European countries were followed for one year. People were included if they did not use formal (personal) care but were expected to do so within 1 year. Logistic regression analyses were used with four clusters of service use as dependent variables (home social care, home personal care, day care and admission). The independent variables were caregiver profiles, and non-personal and supportive services at baseline. Results: Caregiver profiles were significant predictors of service use; those experiencing high strain were more likely to use formal care. The use of low-intensity, less intrusive services at baseline significantly predicted the use of home personal care and admission at follow-up. The use of day care at follow-up was predicted by the baseline use of supportive services. Conclusion: Caregiver profiles are valuable predictors for service use: this knowledge can aid professionals in ensuring optimal access to services, which is important for maintaining independence at home. In addition, the use of supportive and less intrusive, non-personal services in the early stages of dementia is to be advised.

Objectives: To identify correlates of self-rated and proxy-rated quality of life (QoL) in people with dementia on (i) a dementia-specific and (ii) a capability-wellbeing QoL measure at baseline and 12-month follow-up, and to consider such factors in the context of QoL intervention development. Method: Prospective clinical and demographic data were collected from 451 community-dwelling dyads (mild-moderate dementia) across eight European countries. QoL was measured using the QOL-AD and the ICECAP-O. Multivariate modelling identified correlates of self- and proxy-rated QoL at baseline and at 12-month follow-up. Results: Carer's proxy-ratings of QoL were significantly lower than self-ratings at all time-points for both measures. Proxy-ratings declined over time, but self-ratings remained stable. Baseline predictors of greater self-rated QoL were education, and greater functional ability and relationship quality. Greater proxy-rated QoL was associated with education and greater functional ability, relationship quality, carer social support and carer QoL, lower carer anxiety/depression and less severe neuropsychiatric symptoms in people with dementia. At follow-up, greater self-rated QoL was predicted by greater functional ability, relationship quality, carer social support and having a spousal carer. Greater proxy-rated QoL at follow-up was associated with the same factors as at baseline; however, the dyad living together was an additional predictive factor. Conclusion: Both proxy-ratings and self-ratings of QoL should be interpreted with caution and in the context of each individual caregiving relationship. Different functional, psychosocial, relational and contextual factors influence self- and proxy-ratings, and both sets of factors should be considered in the context of QoL intervention development for the dyad.

Objective: The Actifcare (Access to timely formal care) study investigated needs of people with dementia and their families during the phase in which formal care is being considered, and examined whether higher need levels are related to lower quality of life (QOL)., Method: From eight European countries 451 people with dementia and their carers participated. Needs were measured with the Camberwell Assessment of Need for the Elderly. QOL was measured with the QOL-AD, and carer quality of life was measured with the CarerQol. The relationship between needs and QOL was analysed with multiple regression analyses., Results: Needs were expressed in the domains of psychological distress, daytime activities, company and information. People with dementia rated their unmet needs significantly lower than their carers: the mean number of self-rated unmet needs was 0.95, whereas the mean proxy ratings were 1.66. For met needs, the self-rated mean was 5.5 and was 8 when proxy-rated. The level of needs reported was negatively associated with QOL for both., Conclusion: The study results show that informal carers reported almost twice as many needs as people with dementia. The domains in which needs are expressed should be the primary focus for interventions to support   QOL. The perspectives of people with dementia are informative when identifying needs.

Objectives: To identify caregiver profiles of persons with mild to moderate dementia and to investigate differences between identified caregiver profiles, using baseline data of the international prospective cohort study Actifcare., Methods: A latent class analysis was used to discover different caregiver profiles based on disease related characteristics of 453 persons with dementia and their 453 informal caregivers. These profiles were compared with regard to quality of life (CarerQoL score), depressive symptoms (HADS-D score) and perseverance time., Results: A 5-class model was identified, with the best Bayesian Information Criterion value, significant likelihood ratio test (p < 0.001), high entropy score (0.88) and substantive interpretability. The classes could be differentiated on two axes: (i) caregivers' age, relationship with persons with dementia, severity of dementia, and (ii) tendency towards stress and difficulty adapting to stress. Classes showed significant differences with all dependent variables, and were labelled 'older low strain', 'older intermediate strain', 'older high strain', 'younger low strain' and 'younger high strain'., Conclusion: Differences exist between types of caregivers that explain variability in quality of life, depressive symptoms and perseverance time. Our findings may give direction for tailored interventions for caregivers of persons with dementia, which may improve social health and reduce health care costs.

Objectives: In this study, we explored how family members and care staff understand awareness in people with severe dementia and what this awareness means to them., Method: We conducted four focus groups between 2007 and 2009 in the UK with 11 family members and 12 care staff. Transcripts of the focus groups were analysed using thematic analysis., Results: A model of awareness emerged in which the perceived level of awareness in the person with dementia was influenced by an interaction between attributes of the person with dementia and the environment, with expressions of awareness being hindered by environmental factors and facilitated through appropriate stimulation. Awareness did fluctuate, and differences in interpretations of awareness were linked to the meaning assigned to particular kinds of responses. For family members, awareness was intrinsically linked to their emotional connection with the person with dementia. For care staff, identifying signs of awareness helped them to do their job and enabled them to feel that they had connected with the person with dementia., Conclusion: The findings of this study suggest that care staff would benefit from training both on identifying awareness and on providing suitable activities for people with severe dementia. Care staff and family members would also benefit from greater sharing of information about the person with dementia. This could help to enhance quality of life for person with dementia and improve quality of care.

Objectives: To evaluate the effect of different pathways for developing a life story book (LSB) for people with dementia., Method: Preliminary randomised control trial; 23 people with dementia in care homes (mean age 86) randomly assigned to receive either 12 individual life review sessions and co-creating a LSB or a personal LSB created by their relatives as a 'gift', Results: No difference in quality of life (quality of life-Alzheimer's disease (QOL-AD)) was observed between the two groups, six weeks after having received the LSB (F(1,20) = 0.08, p = 0.77). At this point, QOL-AD had improved for both groups, but there was a significant between-group difference at an intermediate assessment immediately after the life review sessions had been completed, before the LSBs were received (F(1, 20) = 5.11, p = 0.035), in favour of life review. A similar pattern was observed on autobiographical memory (extended autobiographical memory interview), with the life review group improving significantly more than the gift group during the life review sessions, but no difference was observed once all participants had had their LSB for six weeks. After the LSBs were produced - by either pathway - quality of relationship as rated by relatives improved significantly (F(2, 39) = 19.37, p < 0.001) and staff knowledge regarding the resident and attitudes to dementia improved., Conclusion: The creation of LSBs - either through a life review process or by relatives without involving the person with dementia - has benefits for people with dementia, relatives and staff in care homes. However, undertaking a life review requires training and supervision.

Background: Promoting the mental well-being of older people has been neglected., Aim: To examine the clinical and cost-effectiveness of exercise and physical activity interventions on mental well-being in people aged 65+., Design: Systematic review, meta-analysis, economic model., Methods: Reports published in English, identified by searching 25 databases, 11 websites and references lists of systematic reviews. Eligible studies were those with a comparison or control group or offering qualitative evidence; exercise and physical activity interventions for people aged 65 and above living at home, in the community, in supported housing or in residential care homes; including outcome measures of mental well-being, not simply measures of depression or anxiety. Low-quality studies were excluded from the data synthesis., Results: An overall effect of exercise on mental well-being was found (standardised effect size = 0.27; CI = 0.14-0.40). The included interventions were designed for older people, targeted those who are sedentary and delivered in a community setting, primarily through a group-based approach led by trained leaders. As a minimum, the evidence would suggest two exercise sessions per week, each of 45 min duration. There is some indication that exercise can also improve the mental well-being of frail elders. Economic evidence indicated incremental cost-effectiveness ratios (compared with minimal intervention) of pound 7300 and pound 12,100 per quality adjusted life year gained for community-based walking and exercise programmes, respectively., Conclusions: Mental well-being in later life is modifiable through exercise and physical activity. To generalise the findings, there is a need for more evidence of effectiveness from older people in the UK.

Background: Relatively little attention has been given to the effects of caregiving context on the experience of family members providing care for a person with dementia. This review aims to examine the impact of caregiving on the quality of the relationship between caregiver and care-recipient and the impact of the quality of the relationship between the caregiver and care-recipient on the caregiver's and care-recipient's wellbeing., Methods: This was a systematic review. Fifteen quantitative studies were identified that examined the quality of the relationship between caregivers and care-recipients who had dementia, meeting the criterion of using a measure of relationship quality beyond a single item., Results: The findings show that caregiving can have an impact on the quality of the relationship between caregiver and care-recipient. In addition, pre-caregiving and current relationship quality appear to have an impact on caregiver's wellbeing. The care-recipient's needs for help with activities of daily living and level of behavioural problems were found to influence the caregiver's perceptions of relationship quality., Conclusions: Future research should examine both current and pre-caregiving relationship quality. A better understanding of the role of relationship quality in determining the outcomes of caregiving will aid the development of more effective interventions for caregivers.

Background: Rural and urban differences in the effects of care-giving are not well documented. This paper reports data on 122 carers for people with stroke or dementia living in rural and urban settings in Wales., Method: Carers completed a postal questionnaire, including the SF-12v2 Health Survey. Definitions of rural and urban were based on the Urban/Rural Indicator from the Office of National Statistics (ONS) All Fields Postcode Directory 2004., Results: Carers' mean Mental Component Summary (MCS) score (adjusted for age and sex) was one standard deviation below the population mean (-12.03). Male carers living in urban areas reported better mental health than male carers in rural areas (p<0.05) and female carers in both settings (p<0.05). A full model and a parsimonious model were developed, using MCS scores as outcome variables. In the full model sitting service provision in rural and urban locations was linked to better carer mental health, while support from friends and family was linked to better mental health for urban carers only., Conclusion: Our findings indicate the existence of both gender and location differences in carer experiences.

Quality of life (QoL) is now seen as a key outcome in many aspects of dementia care. In a recent randomized controlled trial of Cognitive Stimulation Therapy (CST) groups, significant improvements in self-reported QoL were identified as well as changes in cognitive function. This further analysis of results from the trial examines whether the changes in these two domains occurred independently, perhaps for different reasons, or whether the effect of treatment on QoL was mediated by the changes in cognition. In all, 201 people with dementia living in residential homes or attending day centres were assessed using the Quality of Life-Alzheimer's Disease (QOL-AD) scale and a range of measures of cognition, dementia level, mood, dependency and communication. Participants were randomized to receive an intervention programme of CST or to receive treatment as usual. The QoL-AD and other measures were repeated eight weeks later. At baseline, higher QoL in dementia was significantly correlated with lower levels of dependency and depression, but not with cognitive function or dementia severity. Improvement in quality of life was associated with being female, low quality of life at baseline, reduced depression and increased cognitive function. Changes in cognitive function mediated the effects of treatment in improving QoL. These results suggest that whilst QoL in dementia appears to be independent of level of cognitive function, interventions aimed at improving cognitive function can, nonetheless, have a direct effect on QoL.

Our improved understanding of the experience of people with dementia provides a new impetus to address legal and ethical issues. This paper explores emerging issues in relation to awareness in dementia and its impact on legal and ethical matters. The different approaches and principles demonstrated in relation to ethical issues are discussed, with an exploration of the concepts of beneficence, non-maleficence, autonomy, and paternalism. Application of these concepts is discussed in relation to advance directives, capacity, and decision making, participation in research and treatment, including informed consent, and truth telling. The tensions that exist between the imperatives of doing no harm and of maintaining autonomy in addressing legal and ethical issues are highlighted, and attention drawn to the manner in which the attribution of unawareness is used to justify withholding autonomy. The review emphasizes the importance of considering competency and awareness as being multi-faceted, to be understood in the context of social interaction.

The aim of this study was to explore beliefs and attitudes about continuing or stopping benzodiazepine hypnotics amongst older patients using such medicines, and amongst their general practitioners. One hundred and ninety two patients aged 65 and over who were long-term users of benzodiazepine hypnotics were recruited from 25 general practices in inner city and suburban London, as were 83 practice staff. The practices had been recruited into a randomised controlled trial of benzodiazepine withdrawal in long-term users. Semi-structured interviews were conducted with patients recruited to the trial, and non-standardized (conversational) interviews with practice staff. Sixty percent of long-term benzodiazepine users had taken their hypnotic for more than 10 years, and one-third for more than 20 years. Beliefs in the efficacy of hypnotics, and self-report of insomnia despite their use, varied according to the willingness to attempt withdrawal. The majority of patients reported no warnings from professionals about adverse effects of using benzodiazepine hypnotics. Half had tried to stop at some time but most attempts had been short-lived. Patients and doctors had distinctly different views of the advantages, disadvantages and risks of stopping benzodiazepine hypnotic use. Both increased patient awareness of the problems of long-term benzodiazepine use and an evidence-based approach to withdrawal efforts in primary care are necessary to reduce the consumption of medication that has little real benefit.