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Dementia-friendly communities (DFCs) are a policy-endorsed approach to community engagement in England that promotes social inclusion to enable people affected by dementia to live well. Research suggests that physical activity is beneficial in encouraging social connection and improving health. A mixed method sequential study design in England involving a national survey (n = 31) and semistructured interviews (n = 65) in three DFCs was carried out. The aim was to understand how DFCs enable people affected by dementia to participate in physical activities. An evaluation framework for DFCs was used to organize and interpret the data, and analysis was informed by the inclusive (social) citizen lens. Findings showed that DFCs offered a range of adapted dementia-inclusive and dementia-specific activities; however, people were not routinely offered information at time of diagnosis. Local authorities (councils) were key to enable access to information and infrastructure change to support sustainable inclusion within their local community.

Aim: A growing evidence-base indicates that dementia occurrence can be changed. This has been linked to potentially modifiable risk factors. Risk reduction and primary prevention strategies are increasingly recognized as needing to include population-level policies to tackle the social and commercial determinants of health. How this knowledge can influence policymaking on dementia prevention is unknown. Understanding attitudes of policymakers is an important step in translating evidence into practice, helping to gauge system readiness for implementation, and potential barriers and enablers for influencing policy. The aim of this qualitative study is to explore the understanding of, and attitudes to, dementia risk reduction and population-level prevention strategies amongst English policymakers at national, regional, and local level., Methods: Semi-structured interviews were undertaken with a range of dementia and prevention policymakers, with purposive sampling of national and local policymakers, including politicians, government officials, health system leaders, academics, and dementia charity directors. Analysis of interview transcripts was undertaken by thematic analysis., Results: 14 policymakers were interviewed between November 2021 and February 2022. Three main themes were identified (1) Preventability of dementia, (2) Prevention approach, (3) Barriers and facilitators to improving the approach., Discussion: Policymakers generally held dementia to be partially preventable. Policymakers recognised that both individual- and population-level approaches to primary prevention of dementia are required - with some policymakers perceiving that population-level approaches are under-utilised. Key barriers to implementing more population-level approaches were identified as the complexity and co-ordination required to effectively tackle upstream determinants of health., (© 2023 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

Objectives: In the context of a growing number of dementia friendly communities (DFCs) globally, a need remains for robust evaluation, and for tools to capture relevant evidence. This paper reports the development of a suite of evaluation resources for DFCs through a national study in England., Methods: Fieldwork took place in six diverse case study sites across England. A mixed methods design was adopted that entailed documentary analysis, focus groups, interviews, observations, and a survey. Participants were people affected by dementia and practice-based stakeholders. A national stakeholder workshop was held to obtain input beyond the research sites. A workshop at the end of the study served to check the resonance of the findings and emerging outputs with stakeholders from the case study DFCs., Results: The study had three key outputs for the evaluation of DFCs: First, an evaluation framework that highlights thematic areas to be considered in evaluating DFCs. Second, a Theory of Change that presents inputs into a DFC and short, medium and longer term outcomes. Third, a matrix for assessing a DFC's degree of maturity, which enables a sense of the kinds of outcomes a DFC might realistically aspire to. These three outputs form a suite of interlinking and complementary evaluation resources for DFCs., Conclusions: The study has contributed evidence-based resources for monitoring and evaluation that complement existing frameworks. They can be applied to arrive at a detailed assessment of how well a DFC works for people affected by dementia, and at insights into the underlying factors that can guide future policy and practice.

Background: Dementia Friendly Communities (DFCs) offer an approach to community engagement to improve the lives of people living with dementia and their family supporters. The involvement of those living with dementia is key to creating successful DFCs. This paper examines how people affected by dementia were involved in developing and designing DFCs in England, and the impact of their involvement., Methods: This study used a mixed method case study design in six DFCs in England. Data collection involved documentary analysis, a survey, and interviews and focus groups with service providers and people living with dementia and their supporters., Findings: All six DFCs aspired to involve people living with dementia and their family supporters, but often relied on a small number of people living with dementia. The range of involvement activities in DFCs included Steering Group meetings, wider public consultations, and enabling feedback through data collection methods such as surveys and 'ad hoc' conversations. Organisations within the DFCs with experience of public consultation offered structured opportunities for involvement. There was no evidence of people living with dementia initiating or co-leading the organisation, its direction and/or the activities of the DFCs., Conclusion: The involvement of people living with dementia in DFCs went beyond rhetoric, with some evidence of context sensitive and meaningful participation. Approaches towards involvement should focus on involvement in strategic planning, and on harnessing expertise in delivering different involvement activities to optimise participation of a greater breadth of people living with dementia. Engagement with local organisations who work with, and for, people living with dementia, and dedicating the resources needed for involvement work, are crucial for creating DFCs. The success of DFCs are determined by how the needs of people living with dementia are identified, discussed and reviewed by those within the community who are most affected.

Dementia-friendly communities (DFCs) are one way in which people living with dementia can be supported to be active, engaged and valued citizens. Quantitative evaluations of the experiences of those with dementia living within these communities are scarce. This article reports findings from a survey of people living with dementia on their experience of living in a DFC. Two-hundred and forty people living with dementia completed a cross-sectional survey in six DFCs across England. Around half of respondents reported they were aware they were living in a DFC. Being aware of living in a DFC was associated with taking part in leisure activities ( p = 0.042), community centre attendance ( p = 0.009), being involved in organised activities or groups ( p < 0.001), feeling understood ( p = 0.008), and feeling valued for their own contributions to the community ( p = 0.002). This study illustrates the contribution that surveys can make in facilitating the expression of views and experiences of people living with dementia. Awareness of living within a DFC is associated with greater involvement in, and belonging to, the wider community.

Objectives: To describe the characteristics of Dementia Friendly Communities (DFCs) across England in order to inform a national evaluation of their impact on the lives of those affected by dementia., Methods: DFCs in England were identified through online searches and Alzheimer's Society records. A subsample (n = 100) were purposively selected for in-depth study based on online searches and, where necessary, follow-up telephone calls. Data collection and analysis were guided by a pilot evaluation tool for DFCs that addressed how DFCs are organised and resourced and how their impact is assessed. The evidence was predominantly qualitative, in addition to some descriptive quantitative information., Results: Of 284 DFCs identified, 251 were defined by geographical location, while 33 were communities of interest. Among 100 sampled DFCs, 89 had been set up or started activities following policy endorsement of DFCs in 2012. In the resourcing of DFCs, statutory agencies and charities played an important role. Among DFC activities, awareness raising was cited most commonly. There was some evidence of involvement of people living with dementia in organisational and operational aspects of DFCs. Approaches to evaluation varied, with little evidence of findings having effected change., Conclusions: DFCs are characterised by variation in type, resourcing, and activities. England has policy endorsement and a recognition system for DFCs. These can be important catalysts for initiation and growth. A systematic approach to evaluation is lacking. This would enable DFCs to be consistent in how they demonstrate progress and how they enable people living with dementia to live well., (© 2019 The Authors. International Journal of Geriatric Psychiatry Published by John Wiley & Sons Ltd.)

Objectives: The dementia-friendly community (DFC) initiative was set up to enable people living with dementia to remain active, engaged, and valued members of society. Dementia prevalence varies nationally and is strongly associated with the age and sex distribution of the population and level of social deprivation. As part of a wider project to evaluate DFCs, we examined whether there is a relationship between provision of DFCs and epidemiological need., Methods: Dementia-friendly communities were identified through the formal recognition process of DFC status by the Alzheimer's Society and mapped against areas defined by English Clinical Commissioning Groups. We tested whether provision of a DFC was associated with: (1) dementia prevalence, (2) number of known cases, and (3) known plus estimated number of unknown cases., Results: Of the 209 English Clinical Commissioning Group areas, 115 had at least one DFC. The presence of a DFC was significantly associated with number of known dementia cases (mean difference = 577; 95% CI, 249 to 905; P = 0.001) and unknown dementia cases (mean difference = 881; 95% CI, 349 to 1413; P = 0.001) but not prevalence (mean difference = 0.03; 95% CI, -0.09 to 0.16; P = 0.61). This remains true when controlling for potential confounding variables., Conclusions: Our findings suggest that DFC provision is consistent with epidemiological-based need. Dementia-friendly communities are located in areas where they can have the greatest impact. A retrospective understanding of how DFCs have developed in England can inform how equivalent international initiatives might be designed and implemented., (© 2018 The Authors. International Journal of Geriatric Psychiatry Published by John Wiley & Sons Ltd.)

Background: Literature agrees that post-diagnostic services for people living with young onset dementia (YOD) need to be age-appropriate, but there is insufficient evidence of 'what works' to inform service design and delivery., Objective: To provide an evidence base of age-appropriate services and to review the perceived effectiveness of current interventions., Methods: We undertook a systematic review including all types of research relating to interventions for YOD. We searched PubMed, CINHAL Plus, SCOPUS, EBSCO Host EJS, Social Care Online and Google Scholar, hand-searched journals and carried out lateral searches (July-October 2016). Included papers were synthesised qualitatively. Primary studies were critically appraised., Results: Twenty articles (peer-reviewed [n = 10], descriptive accounts [n = 10]) discussing 195 participants (persons diagnosed with YOD [n = 94], caregivers [n = 91] and other [n = 10]) were identified for inclusion. Services enabled people with YOD to remain living at home for longer. However, service continuity was compromised by short-term project-based commissioning and ad-hoc service delivery., Conclusion: The evidence on the experience of living with YOD is not matched by research and the innovation needed to mitigate the impact of YOD. The inclusion of people with YOD and their caregivers in service design is critical when planning support in order to delay institutional care.

Background: There has been an increase in research on improving end of life (EoL) care for older people with dementia in care homes. Findings consistently demonstrate improvements in practitioner confidence and knowledge, but comparisons are either with usual care or not made. This paper draws on findings from three studies to develop a framework for understanding the essential dimensions of end of life care delivery in long-term care settings for people with dementia., Methods: The data from three studies on EoL care in care homes: (i) EVIDEM EoL, (ii) EPOCH, and (iii) TTT EoL were used to inform the development of the framework. All used mixed method designs and two had an intervention designed to improve how care home staff provided end of life care. The EVIDEM EoL and EPOCH studies tracked the care of older people in care homes over a period of 12 months. The TTT study collected resource use data of care home residents for three months, and surveyed decedents' notes for ten months,, Results: Across the three studies, 29 care homes, 528 residents, 205 care home staff, and 44 visiting health care professionals participated. Analysis of showed that end of life interventions for people with dementia were characterised by uncertainty in three key areas; what treatment is the 'right' treatment, who should do what and when, and in which setting EoL care should be delivered and by whom? These uncertainties are conceptualised as Treatment uncertainty, Relational uncertainty and Service uncertainty. This paper proposes an emergent framework to inform the development and evaluation of EoL care interventions in care homes., Conclusion: For people with dementia living and dying in care homes, EoL interventions need to provide strategies that can accommodate or "hold" the inevitable and often unresolvable uncertainties of providing and receiving care in these settings.

Background: Older people resident in care homes have a limited life expectancy and approximately two-thirds have limited mental capacity. Despite initiatives to reduce unplanned hospital admissions for this population, little is known about the involvement of emergency services in supporting residents in these settings., Methods: This paper reports on a longitudinal study that tracked the involvement of emergency ambulance personnel in the support of older people with dementia, resident in care homes with no on-site nursing providing personal care only. 133 residents with dementia across 6 care homes in the East of England were tracked for a year. The paper examines the frequency and reasons for emergency ambulance call-outs, outcomes and factors associated with emergency ambulance service use., Results: 56% of residents used ambulance services. Less than half (43%) of all call-outs resulted in an unscheduled admission to hospital. In addition to trauma following a following a fall in the home, results suggest that at least a reasonable proportion of ambulance contacts are for ambulatory care sensitive conditions. An emergency ambulance is not likely to be called for older rather than younger residents or for women more than men. Length of residence does not influence use of emergency ambulance services among older people with dementia. Contact with primary care services and admission route into the care home were both significantly associated with emergency ambulance service use. The odds of using emergency ambulance services for residents admitted from a relative's home were 90% lower than the odds of using emergency ambulance services for residents admitted from their own home., Conclusions: Emergency service involvement with this vulnerable population merits further examination. Future research on emergency ambulance service use by older people with dementia in care homes, should account for important contextual factors, namely, presence or absence of on-site nursing, GP involvement, and access to residents' family, alongside resident health characteristics.

Objective: The goals of this study are to describe end-of-life care costs of older people with dementia (OPWD) residents in care homes (CHs) with no on-site nursing and evaluate the economic case for an intervention designed to improve end-of-life care for OPWD in CHs., Methods: Phase 1 tracked for a year, from March 2009, health services received by 133 OPWD in six residential CHs in the East of England. CH and resident characteristics were obtained through standardised assessment tools, interviews with CH managers and publicly available information from the independent regulator of social care services in England. Phase 2 used a modified Appreciative Inquiry intervention that ran for 6 months from January 2011, in three of the six CHs. Wilcoxon matched-pairs sign-rank tests were conducted to compare total cost and cost components during Phases 1 and 2 for those residents who had participated in both., Results: Costs for each resident in Phase 1 were about £2800 per month, including service, accommodation and medication. Resource use was associated with resident characteristics. The intervention was perceived as having a positive impact on working relationships between CHs and visiting health care practitioners. Following the intervention total service costs fell by 43%. Hospital care costs fell by 88%., Conclusions: Results presented here represent early work in an under-researched area of care. Appreciative Inquiry appears to improve and change working relationships with promising outcomes, but more research is needed to test these findings further with larger samples and more robust controls., (Copyright © 2013 John Wiley & Sons, Ltd.)

Background: The older person with dementia has a limited life expectancy and the dying trajectory can be protracted and unpredictable. For good end-of-life care, early communication, exploration of residents' wishes, and identification of someone who can represent them, are important. In care homes the timing of these discussions, and who is involved is variable. Person-centred approaches to dementia care assume that people with dementia can actively participate in decisions about their lives. Less well understood is how this can inform end-of-life care decision making and complement information provided in advance care plans completed prior to, or at the point of admission to a care home., Objectives: To explore how older people with dementia discuss their priorities and preferences for end-of-life care., Methods: An exploratory, qualitative study that used guided conversations with 18 people with dementia, living in six care homes. Participants were asked about their life in the care home, their health, thoughts for the future, and wishes surrounding end of life. Data were analysed thematically., Results: People with dementia's accounts of life in the care home, what they valued, and the impact of having dementia on how they participated in decision making, provided key insights into care preferences. Three linked themes that had relevance for thinking and talking about end of life were identified: "dementia and decision making", "everyday relationships" and "place and purpose". Older people with dementia's accounts of everyday experiences of care, key relationships with family and care home staff members and whether they accepted the care home as their home demonstrated what was important for them now and for the future., Conclusion: For older people living with a diagnosis of dementia, the experience of living and dying in a care home is inextricably linked. End-of-life care planning and decision making by health care professionals, care home staff and family could be enriched by exploring and documenting the preoccupations, key relationships and wishes about everyday care of people with dementia., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

Background: Older people in general and care home residents in particular are at high risk of suboptimal or inappropriate prescribing. To date, research into potentially inappropriate prescribing (PIP) has not focused on care home residents and/or has not utilized the recently developed and validated Screening Tool of Older Persons' potentially inappropriate Prescriptions (STOPP) criteria., Objective: The aim of this study was to estimate the prevalence of PIP in older people with dementia living in six residential care homes in England, using the STOPP criteria., Methods: A retrospective analysis was conducted using medication data collected for older people with dementia in six residential care homes in England who participated in the prospective, longitudinal EVIDEM - End of Life (EoL) study. Of the 133 residents recruited to the study, medication administration records were available for and reviewed at two timepoints (approximately 16 weeks apart) for 119 residents and 110 residents, respectively. The prevalence of PIP at these timepoints was determined using 31 of the 65 STOPP criteria applicable when there is no access to residents' medical records., Results: At the first timepoint, 68 potentially inappropriate medications (PIMs) were identified. Fifty-five residents (46.2%) were prescribed one or more PIM(s), eleven (9.2%) were prescribed two or more PIMs and two (1.7%) were prescribed three PIMs. Thirteen of the 31 STOPP criteria utilized in this study (41.9%) were used to identify PIP. Long-term (i.e. >1 month) neuroleptics (antipsychotics) were the most frequently prescribed PIMs (n = 25; 21.0%), followed by non-steroidal anti-inflammatory drugs (NSAIDs) for >3 months, proton pump inhibitors (PPIs) at maximum therapeutic dosage for >8 weeks, tricyclic antidepressants (TCAs) in patients with dementia and long-term (i.e. >1 month), long-acting benzodiazepines. At the second timepoint, 57 PIMs were identified; 45 residents (40.9%) were prescribed one or more PIM(s) and 10 (9.1%) were prescribed two or more PIMs, but only one resident (0.9%) was prescribed three PIMs. Of the 31 STOPP criteria utilized in this study, ten (32.3%) were used to identify PIP. Long-term (i.e. >1 month) antipsychotics were again the most frequently prescribed PIMs (n = 21; 19.1%), followed by PPIs at maximum therapeutic dosage for >8 weeks, NSAIDS for >3 months and TCAs in patients with dementia. A significant correlation was found at both timepoints between the number of medicines prescribed and occurrence of PIP., Conclusions: This study found that over two-fifths of older people with dementia residing in six residential care homes in England were prescribed at least one PIM at each timepoint. Long-term (i.e. >1 month) antipsychotics, NSAID use for >3 months and PPI use at maximum therapeutic dosage for >8 weeks were the most prevalent PIMs. Regular medication review that targets, but is not limited to, these medications is required to reduce PIP in the residential care home setting. The STOPP criteria represent a useful tool to facilitate such review in this patient population.

Background: The objective of this study was to determine the sedative load and use of sedative and psychotropic medications among older people with dementia living in (residential) care homes., Methods: Medication data were collected at baseline and at two further time-points for eligible residents of six care homes participating in the EVIDEM-End Of Life (EOL) study for whom medication administration records were available. Regular medications were classified using the Anatomical Therapeutic Chemical classification system and individual sedative loads were calculated using a previously published model., Results: At baseline, medication administration records were reviewed for 115 residents; medication records were reviewed for 112 and 105 residents at time-points 2 and 3 respectively. Approximately one-third of residents were not taking any medications with sedative properties at each time-point, while a significant proportion of residents had a low sedative load score of 1 or 2 (54.8%, 59.0% and 57.1% at baseline and time-points 2 and 3 respectively). More than 10% of residents had a high sedative load score (≥ 3) at baseline (12.2%), and this increased to 14.3% at time-points 2 and 3. Approximately two-thirds of residents (66.9%) regularly used one or more psychotropic medication(s). Antidepressants, predominantly selective serotonin re-uptake inhibitors (SSRIs), were most frequently used, while antipsychotics, hypnotics and anxiolytics were less routinely administered. The prevalence of antipsychotic use among residents was 19.0%, lower than has been previously reported for nursing home residents. Throughout the duration of the study, administration of medications recognised as having prominent sedative adverse effects and/or containing sedative components outweighed the regular use of primary sedatives., Conclusions: Sedative load scores were similar throughout the study period for residents with dementia in each of the care homes. Scores were lower than previously reported in studies conducted in long-term care wards which have on-site clinical support. Nevertheless, strategies to optimise drug therapy for care home residents with dementia which rely on clinicians external to the care home for support and medication review are required.

Objective: The goals of this study are to describe end-of-life care costs of older people with dementia (OPWD) residents in care homes (CHs) with no on-site nursing and evaluate the economic case for an intervention designed to improve end-of-life care for OPWD in CHs. Methods: Phase 1 tracked for a year, from March 2009, health services received by 133 OPWD in six residential CHs in the East of England. CH and resident characteristics were obtained through standardised assessment tools, interviews with CH managers and publicly available information from the independent regulator of social care services in England. Phase 2 used a modified Appreciative Inquiry intervention that ran for 6 months from January 2011, in three of the six CHs. Wilcoxon matched-pairs sign-rank tests were conducted to compare total cost and cost components during Phases 1 and 2 for those residents who had participated in both. Results: Costs for each resident in Phase 1 were about £2800 per month, including service, accommodation and medication. Resource use was associated with resident characteristics. The intervention was perceived as having a positive impact on working relationships between CHs and visiting health care practitioners. Following the intervention total service costs fell by 43%. Hospital care costs fell by 88%. Conclusions: Results presented here represent early work in an under-researched area of care. Appreciative Inquiry appears to improve and change working relationships with promising outcomes, but more research is needed to test these findings further with larger samples and more robust controls. [ABSTRACT FROM AUTHOR]

The cover image is based on the Research Article The place for dementia‐friendly communities in England and its relationship with epidemiological need, by Michael Woodward et al., https://doi.org/10.1002/gps.4987. [ABSTRACT FROM AUTHOR]