Dementia Services Research Articles

Understanding the quality of life of family carers of people with dementia: Development of a new conceptual framework.

BackgroundDementia is a major global health and social care challenge, and family carers are a vital determinant of positive outcomes for people with dementia. This study's aim was to develop a conceptual framework for the Quality of Life (QOL) of family carers of people with dementia.MethodsWe studied family carers of people with dementia and staff working in dementia services iteratively using in‐depth individual qualitative interviews and focus groups discussions. Analysis used constant comparison techniques underpinned by a collaborative approach with a study‐specific advisory group of family carers.ResultsWe completed 41 individual interviews with 32 family carers and nine staff and two focus groups with six family carers and five staff. From the analysis, we identified 12 themes that influenced carer QOL. These were organised into three categories focussing on person with dementia, carer, and external environment.ConclusionsFor carers of people with dementia, the QOL construct was found to include condition‐specific domains which are not routinely considered in generic assessment of QOL. This has implications for researchers, policy makers, and service providers in addressing and measuring QOL in family carers of people with dementia.

Use of Clinical Video Telehealth as a Tool for Optimizing Medications for Rural Older Veterans with Dementia.

Community-Based Outpatient Clinics (CBOCs) allow delivery of primary care to rural veterans who are far from a main Veterans Affairs (VA) campus. However, CBOCs often do not have physicians with geriatric training. We used a clinical video telehealth (CVT) dementia service (Teledementia clinic) based in the Pittsburgh VA Healthcare System to optimize dementia patients’ medications and potentially inappropriate medications (PIMs). We analyzed 199 CVT patient encounters from 1 January 2016 to 31 December 2016 and compared different medication changes per encounter between the initial CVT consults and the follow-up visits for all medications and PIMs as listed in the 2015 Beers Criteria, to see if there was a decrease of each kind of change, which is being used as a surrogate for optimization. We found that initial CVT consults, compared to follow-up visits, had greater medications added (0.731 vs. 0.434, p = 0.0092), total overall medications changes (1.769 vs. 1.130, p = 0.0078), and the stopping of 2015 Beers Criteria PIMs (0.208 vs. 0.072, p = 0.0255) per encounter. The fewer PIMs discontinued and fewer medication additions in follow-ups implies that our patients’ medications tend to stay optimized between visits. The teledementia service represents a novel way to provide geriatric assistance to CBOC VA primary care physicians for rural veterans with dementia.

An Interactional Profile to Assist the Differential Diagnosis of Neurodegenerative and Functional Memory Disorders

Specialist services for dementia are seeing an increasing number of patients. We investigated whether interactional and linguistic features in the communication behavior of patients with memory problems could help distinguish between those with problems secondary to neurological disorders (ND) and those with functional memory disorder (FMD). In part 1 of this study, a diagnostic scoring aid (DSA) was developed encouraging linguists to provide quantitative ratings for 14 interactional features. An optimal cut-off differentiating ND and FMD was established by applying the DSA to 30 initial patient-doctor memory clinic encounters. In part 2, the DSA was tested prospectively in 10 additional cases analyzed independently by 2 conversation analysts blinded to medical information. In part 1, the median score of the DSA was +5 in ND and -5 in FMD (P<0.001). The optimal numeric DSA cut-off (+1) identified patients with ND with a sensitivity of 86.7% and a specificity of 100%. In part 2, DSA scores of rater 1 correctly predicted 10/10 and those of rater 2 predicted 9/10 diagnoses. This study indicates that interactional and linguistic features can help distinguish between patients developing dementia and those with FMD and could aid the stratification of patients with memory problems.

Estimating dementia cases in the immigrant population living in Italy.

The phenomenon of dementia among immigrants and ethnic minorities represents an emerging challenge for Western countries. The aim of the present study was to estimate the number of dementia cases among immigrant subjects residing in Italy and in each Italian region to provide pivotal information on the magnitude of such public health issue. The number of immigrant individuals, aged 65years or older, living in Italy and in the 20 Italian regions was derived by the 2017 data of the National Institute for Statistics. The dementia prevalence rates were taken from the European data provided by the Neurologic Diseases in the Elderly Research Group. The estimated dementia cases were calculated by multiplying the number of immigrants with the age- and sex-specific prevalence rates. Overall, 186,373 older immigrant subjects lived in Italy in January 2017. Nearly 7700 dementia cases were estimated in this population (5022 among women, 2725 among men). When considering each specific Italian region, the number of estimated cases ranged from 19 (Basilicata) to 1500 (Lombardia) with a marked inter-regional variability. Our findings indicate that the occurrence of dementia among immigrants and ethnic minorities constitutes a novel but already relevant issue for our healthcare systems. A non-negligible number of immigrant individuals is probably already seeking or might seek help for cognitive disturbances, thus potentially referring to general practitioners and/or to the Italian dementia services. The forecasted increasing magnitude of this phenomenon reinforces the need for tailored and locally oriented initiatives and policies.

A Study on the Integrated Case Management Delivery System for Implementing the National Responsibility System for Dementia - A Case of OECD Countries -

본 연구는 치매 국가책임제 시행에 따른 치매관리 서비스의 통합적 제공을 위한 통합사례관리 전달 체계 구축을 목적으로 한다. 보건복지부는 2017년 9월 ‘치매 국가책임제’를 천명하고 치매 극복을 위한 국가치매연구개발위원회를 발족하였으며, 1995년 세계보건기구(WHO)와 국제알츠하이머병 협회(ADI)는 매년 9월 21일을 세계 알츠하이머의 날로 제정하였고, WHO는 2017년 5월 치매의 심각 성에 대응하기 위한 전 세계 행동계획을 채택하였다. 우리나라의 치매 서비스는 2014년부터 치매환 자에 대한 장기요양보험서비스를 확대하고 있으며, OECD 선진국가의 치매정책 사례에서는 치매의 진단, 치료, 케어서비스 제공을 위하여 지역을 중심으로 하는 주거 기반의 통합적 케어 시스템이 전제되어야 한다. 따라서 본 연구에서는 치매 국가책임제에서 노인장기요양제도 및 노인돌봄서비스가 지역 중심의 통합서비스로 수행될 수 있는 모델을 개발하기 위한 통합사례관리 전달체계 구축 방안을 제시하였다.The purpose of this study is to build up the integrated dementia management system in accordance with the implementation of the national responsibility system for dementia in Korea. In September 2017, the Ministry of Health and Welfare in Korea declared the ‘national responsibility system for dementia’ and organized the national dementia R&D committee in order to get over dementia. In 1995, WHO and the Alzheimer s Disease International(ADI) institutionalized September 21st as the World’s Alzheimer’s Day, and WHO adopted the worldwide action plan to cope with the seriousness of dementia in May 2017. Regarding dementia services in Korea, long-term care service has been extended since 2014. Following the dementia policy in advanced countries, the region-oriented and dwelling-based integrated care system should be developed to provide desirable dementia services. Therefore, this study suggests ways to build up the integrated case management delivery system which can be used asa model for integrating long-term senior care system and senior care services into a region-oriented service within the national responsibility system for dementia in Korea.

Does the community-based combined Meeting Center Support Programme (MCSP) make the pathway to day-care activities easier for people living with dementia? A comparison before and after implementation of MCSP in three European countries.

An exploratory, descriptive, qualitative, cross-country design was applied to investigate the pathways to day care in several regions in four European countries (Italy, Poland, United Kingdom, and the Netherlands). Before implementation of MCSP, of the four countries the United Kingdom had the most structured pathway to post-diagnostic support for people with dementia. MCSP introduction had a positive impact on the pathways to day-care activities in all countries. MCSP filled an important gap in post-diagnostic care, increasing the accessibility to support for both people with dementia and carers. Key elements such as program of activities, target group, and collaboration between healthcare and social services were recognized as success factors. This study shows that MCSP fills (part of) the gap between diagnosis and residential care and can therefore be seen as a pillar of post-diagnostic care and support. Further dissemination of Meeting Centers in Europe may have a multiple impact on the structure of dementia services in European countries and the pathways to day care for people with dementia and their carer(s).

Involvement of people with dementia in raising awareness and changing attitudes in a dementia friendly community pilot project.

Low levels of public understanding can contribute to the fear, stigma and social exclusion associated with living with dementia. Dementia friendly communities aim to address this by empowering people with dementia and increasing their social inclusion. As a part of a Community Based Participatory Action Research (CBPAR) process, a multicomponent dementia friendly community intervention supported: research; the establishment of a Dementia Advisory Group and Alliance; an awareness campaign and education in community organisations. Educational events were co-designed and co-facilitated by people with dementia and their care partners. To assess project reach and changes in attitudes of community members, two cross sectional surveys were conducted with adults (aged over 18 years) using validated scales. Independent samples t-tests compared responses to the surveys prior to the commencement of the project (2014) and two years later (2016). In 2016, respondents showed increased agreement with the statements: ‘People with dementia participate in a wide variety of activities and interests,’ and, ‘It is easy to find out about dementia friendly services or organisations in Kiama’. Respondents who attended an educational event reported less negative views about how they themselves would feel if they were diagnosed with dementia compared with respondents who did not attend an event. CBPAR appears useful to support the involvement of people with dementia and the engagement of the community to improve awareness of dementia services. The direct involvement of people living with dementia as spokespeople and educators was an effective way to improve positive attitudes and reduce the negative stereotypes associated with living with dementia. Further research is needed to compare different approaches to the creation of dementia friendly communities in different locations, and to establish the extent to which local interventions are useful to complement efforts to raise awareness of dementia at a national level.

Health professionals’ perceptions of developing dementia services in primary care settings in China: a qualitative study

ABSTRACTObjectives: Primary care plays a crucial role in the timely diagnosis and proper management of dementia. Evidence from low and middle income countries is much needed to inform service development in primary care and to address the dementia burden in these countries. The aim of this study was to explore community health professionals’ perceptions of dementia service development using China as a case.Method: An interpretive study design was utilized and focus groups were used for data collection guided by a semi-structured interview guide. Each focus group lasted between 90–120 min. Thematic analysis was applied for data analysis.Results: Twenty-one community health professionals participated in this study and three major themes were identified. These themes are: incorporating dementia components in the government-subsidized primary care services; an under-prepared workforce to meet the demand for dementia care; and an enabling environment to sustain dementia care.Conclusion: Government policies, regulations, standards and guidelines need to be established for dementia service development in primary care to improve the home care for people with dementia and to create a dementia-friendly society. Regular education and training activities for health professionals are a way to build dementia care service capacity in primary care.

Developing a culture of involvement in dementia services: The story of a long-term collaboration (between a person with a dementia diagnosis and a clinical psychologist)

Developing a culture of involvement in dementia services: The story of a long-term collaboration (between a person with a dementia diagnosis and a clinical psychologist)

Caregiving, intellectual disability, and dementia: Report of the Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities

IntroductionA specially commissioned working group produced a report on caregiving, intellectual and developmental disabilities (IDDs), and dementia for the National Institutes of Health–located National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers. MethodsExperts in caregiving, dementia, and IDDs examined the current state of research, policy, and practice related to caregiving and supports; identified the similarities and dissimilarities between IDD-related care and services and the general population affected by dementia; and considered how these findings might contribute to the conversation on developing a dementia care research and services development agenda. ResultsFive major areas related to programs and caregiving were assessed: (1) challenges of dementia; (2) family caregiving interventions; (3) supportive care settings; (4) effects of diversity; and (5) bridging service networks of aging and disability. DiscussionRecommendations included increasing supports for caregivers of adults with IDDs and dementia; increasing research on community living settings and including caregivers of persons with IDDs in dementia research; acknowledging cultural values and practice diversity in caregiving; increasing screening for dementia and raising awareness; and leveraging integration of aging and disability networks.

Experience of a Special Rating Dementia Service for Family Caregivers of Elderly People with Dementia

Purpose: This study tries to explore experiences with a special rating dementia service among family caregivers of elderly people with dementia. Methods: The participants were 11 family caregivers of elderly people with dementia and had used a day-care service from the special rating dementia service for more than 3 months. Data were collected through individual in-depth interviews and analyzed using content analysis. Results: Three categories emerged: “reminiscence of an entangled life”, “feeling relieved from a stifled life”, and “hope for a better life through help and support” with 8 sub-categories and 23 codes. By using the special rating dementia service, the participants experienced relief from the burden of caring for their elderly family member with dementia and restored their social relations or family relationships. They experienced a positive transition in which their caring for elderly family members with dementia was integrated into their daily lives, and they expressed their desires for better policies. Conclusion: These findings imply the importance and necessity of the special rating dementia service. Practical and systematic family support programs are necessary and proactive publicity activities by the government and public agencies are suggested to ensure that family caregivers can easily use the special rating dementia system.

Dementia: beyond multi-morbidity

Purpose The purpose of this paper is to consider the potential of public health perspectives to “come to the aid” of dementia research and practice. Design/methodology/approach This paper draws on research and policy papers. Findings This paper outlines some potential preventive interventions, focussing particularly on life-course phenomena like child poverty, diet and pollution, on the biological mechanisms that enable psychosocial interventions, and on the status of dementia as a syndemic disorder. Research limitations/implications This paper presents the opinions of the authors alone. It is based on recent research evidence and the authors’ experiences of dementia research, education and services. The implications for social scientists and for dementia research funders are contained in discussion of the need for research on prevention and social support for people with dementia and their families. While the evidence to guide primary prevention using psychosocial methods is less secure, the paper outlines a large secondary prevention research agenda in dementia. Practical implications Methodological approaches that facilitate harmonisation, pooling and comparison of data, are needed. In practical terms the paper argues that there is a need to know if and how psychosocial interventions work, and improve quality of life or even influence harder outcomes. Originality/value Few papers have considered the implications of a public health approach to dementia other than taking an epidemiological approach and focusing on the problems of dementia and rising numbers. This paper argues that a wider view of public health may be of particular relevance to dementia syndrome.

Communicating risk in dementia care: Survey of health and social care professionals.

Supporting people to live at home in line with community care policies requires increasing attention to assessing, communicating and managing risks. There is a challenge in supporting client choices that include risk-taking while demonstrating professional accountability. Risk communication becomes increasingly important with the need to engage clients and families in meaningful shared decision-making. This presents particular challenges in dementia services. This survey of risk communication in dementia care was administered to all health and social care professionals in community dementia services in Northern Ireland: June-September 2016. Of 270 professionals, 70 questionnaires were fully completed, with 55 partial completions. Scores on the Berlin Numeracy Test plus Schwartz items was low-moderate (mean 2.79 out of 7). This study did not find a significant association between numeracy and accurate perceptions of risk likelihoods in practice-based scenarios. Although 86% reported using numeric information in practice (mostly from assessment tools), respondents rarely communicated themselves using numbers. As in other domains, participants' responses were widely variable on numeric estimates of verbal terms for likelihood. In relation to medication side effects, few participants provided responses that were concordant with those in the guidance of the European Union. The risks most commonly encountered in practice were (in rank order): falls, depression, poor personal hygiene, medicines mismanagement, leaving home unsupervised, financial mismanagement, malnutrition, swallowing difficulties, abuse from others, risks to others, home appliance accidents and refusing equipment. Respondents generally overestimated the likelihood of serious harmful events by approximately 10-fold (having a missing person's report filed with the police; having a fall resulting in hospitalisation) and by approximately double (being involved in a car accident; causing a home fire), and with wide variation between respondents. There is potential in icon arrays for communicating risks. Risk literacy among dementia care practitioners needs to be developed.

Culturally Competent Commissioning; Meeting the Needs of Canada’s Diverse Communities: The Road Map to a Culturally Competent Mental Health System for All

Cultural competence has proven to be a very efficient tool in reducing healthcare disparities and improving healthcare experiences, compliance with therapy, and reducing incidents of misdiagnosis. This effect is because professionals are recognizing the value and significance of including the person in need of services in their assessment and decision making. While this rationale has also long been considered part of good practice among healthcare professionals (providers) within the mental health arena and nursing care and the success of its use has been reported widely in the provider and insurance arena, the notion seems to have escaped the commissioning arena. Commissioners are responsible for specifying, procuring, and monitoring services and are missing out on the value of completing culturally competent needs assessments for their localities. Synonymous with cultural competence is “person-centred care.” In recent times, cultural competence has contributed much to the commissioning of dementia services in a bid to improve and promote person-centred care. It could be argued that there is no person-centred care without cultural competence, which, in simplistic terms, can be defined as care that is undertaken in partnership with the recipient and is of value and significance to the recipient. Culturally competent commissioning and provision of care is therefore to be recommended as capable of addressing quality issues and the problematic variation in services available.

The implementation of personalised supports for people with dementia through multi-stakeholder, integrated care networks

Introduction: It is estimated that 55,000 people have dementia in Ireland. This is projected to increase significantly in Ireland and globally. People with dementia (PWD) have a wide range of health, social, psychological, emotional and other needs which change over time, therefore many health and social care professionals from different settings can be involved in their care. Many PWD wish to remain living at home for as long as possible and maintaining personhood and social connection is key to the person living well with dementia. Resource constraints, gaps in community-based services and a fragmented health and social care system presents a significant challenge to meet the variety of needs of people with dementia in a personalised, responsive way. Policy context and objective of initiative: Ireland’s National Dementia Strategy recognises these challenges and proposes an integrated partnership approach to the development and delivery of services for PWD including all stakeholders in providing a range of person-centred, flexible and responsive services. The HSE & Genio Dementia Programme is a collaborative initiative whose objective is to develop innovative, integrated and personalised services and supports for PWD in their local community so that they can remain living well at home. The target population was PWD, including early onset dementia, family carers as well as the wider health and social care ecosystem. Highlights: The mechanism used to address the integration of services was a Dementia Consortium. This is a locally based, multi-stakeholder group of organisations and individuals who brought together varied expertise and resources to develop innovative and personalised supports to enable PWD to live well at home. Consortia included people with dementia, family carers, health and social care professionals, other statutory organisations, voluntary and community groups, hospitals, nursing homes and others. Nine Dementia Consortia, with 160 members developed a range of personalised supports for PWD and carers to maintain ability and connection, including respite supports and assistive technology (AT). To date, over 74,000 hours of personalised supports have been provided to 1,474 PWD plus carers. Learning points to the need for supports to be responsive and flexible; the importance of timely engagement with the person and carer and the usefulness of tailoring supports to the person and their interests. Evaluation findings indicate a greater degree of integrated working and that personalised supports enable PWD to remain living at home for longer, resulting in significant cost avoidance. Transferability: A Dementia Consortium builds on what is locally available and is an easily localised and transferable model. The learning from this programme is now supporting a further four sites to develop integrated working, with a focus on implementing Intensive Home Care Packages for PWD. Conclusions: This programme has demonstrated that multi-stakeholder consortia are a useful mechanism for supporting a profound change in the development and delivery of dementia services, enabling the central involvement of people with dementia and family carers, a focus on personhood through personalised supports and meaningful integration across a wide range of stakeholders.

A novel integrated care pathway for people with dementia presenting to acute hospitals

Introduction: Almost 30% of older people admitted to acute hospitals in Ireland have dementia, but only 1/3 of these have a known diagnosis in the community. Thus hospital staff are often treating patients with dementia without knowing it. Acute hospitalisation is a pivotal time for a person with dementia, associated with longer length of stay, poor assessment by hospital staff of the dementia, and often discharge to long-term care post hospitalisation. No hospital in Ireland had a functioning dementia care pathway in 2014. Practice change implemented: Introduction of a novel dementia pathway in an acute hospital as follows: all older people (≥70 years) screened for cognitive vulnerability (delirium, dementia, or delirium on dementia) on admission to hospital; patients with known dementia following a novel dementia pathway throughout their hospital stay, including daily delirium screening and a dementia care bundle, and an in-reach community dementia service to allow seamless post-discharge support; enhanced communication with community at time of discharge; patients with suspected dementia following a novel diagnostic pathway with streamlined access to diagnostic clinics and post-diagnostic support in the community. Aim and theory of change: A dementia pathway would improve the detection of cognitive vulnerability and the prevention/detection of delirium and would also standardise and improve integrated care. Targeted population: People with dementia or possible dementia presenting to an acute hospital; stakeholders: hospital staff (especially nurses), patients, carers, hospital management; community based healthcare workers and managers Timeline: Preparation (literature review, process mapping of patient journey through hospital and into community; staff and stakeholder engagement; development of pathway with wide consultation and input): 1 year; piloting and modification of pathway on a single ward: 6 months; roll-out to other wards: 6 months. Highlights: (innovation, Impact and outcomes) The pathway development process was robust and was a partnership with multiple hospital stakeholders, including patients and carers, and the community with a consrtium of 45 people across the hospital and community working together. The pathway incorporated national delirium screening algorithms and for the Emergency Department, a combined dementia/delirium care bundle was developed to meet their need for a simple, easy-to-administer bundle that could be used even when the diagnosis of dementia and/or delirium was not yet clear. Existing community based services were used, but enhanced communication and a novel in-reach community dementia service led to integrated discharge planning and post discharge support. The impact and outcomes are being evaluated by an external agency currently. Comments on sustainability: This pathway functions ideally with a dementia nurse specialist at its core, but can be used without this post in place. It bundles together core nursing activities, with some small areas of new practice (daily delirium screening, enhanced information gathering via a patient “passport”) which have been sustained in the participating wards thus far. Comments on transferability: This pathway was designed to be transferrable to other acute hospitals and community areas in Ireland with minor adaptations only.

Joining up dementia: not as easy as it sounds

PurposeThe purpose of this paper is to discuss the different meanings of integration as expressed in dementia care practice and service organisation in England. Dementia is frequently complicated by concurrent illnesses or long-term conditions at the end of life.Design/methodology/approachThis is a policy discussion.FindingsThe paper describes three forms of integration: linkage, co-ordination of care, and full integration. Each form or level is related to dementia as a progressive neurological disorder with multiple symptoms, which also overlaps with other long-term conditions, making each individual’s dementia unique. Linkage means being able to identify appropriate resources to meet the needs of the individual and their family. Co-ordination usually means multi-disciplinary working at least with general practice and often wider practitioner input. Full integration is best expressed by the work of care homes, which co-ordinate care and often draws on diverse funding streams.Practical implicationsGreater specificity of the meaning of integration may be helpful to policy makers and practitioners. The care and treatment of people with dementia may be optimised if practitioners think about work styles and engagement with other sectors, agencies and professionals rather than pursuing all-encompassing organisational integration. Care homes may have much to teach other practice settings about full integration.Originality/valueIntegration is often seen uncritically as the solution to all problems; this paper explores the varieties of integration and explores their implications for practitioners and policy makers supporting people with dementia and their carers.

Assessing depression in Greek dementia patients: Which scale to use?

Depression in dementia is known to deteriorate patients' cognitive function and Quality of Life and to increase the burden of care. Although detecting depression in dementia is crucial, there is no gold standard for its screening and diagnosis. We examined the psychometric properties of 3 different scales in detecting depression in dementia. Results will be useful as community services for dementia in the country are developing and the need for reliable detection of depression in dementia patients is urgent. Our sample consisted of 136 Greek dementia patients who consulted a memory clinic. For the diagnosis of depression, DSM-IV criteria for major depression and 3 different depression measures were used: a self-assessment scale (Geriatric Depression Scale; GDS), a caregiver assessment scale (Neuropsychiatric Inventory-Depression; NPI-D) and a clinician rated scale (Cornell Scale for Depression in Dementia; CSDD). For the evaluation of the screening performance of the three depression scales receiver operating characteristic curve (ROC) analysis was applied. The DSMIV criteria served as the gold standard method for the diagnosis of major depression. CSDD showed the best psychometric properties for the diagnosis of depression in dementia. The ROC curve analysis revealed that among the three measures, the CSDD had the wider AUC (0.919), second in the width of the AUC was the GDS (0.871), and last was the NPI-D (0.812). The prevalence of depression ranged from 18.4% according to DSM-IV criteria to 42.6% using the NPI-D. Using the GDS (cut off point: 7/8) and the CSDD (cut off point: 6/7), depression was present in 26.9% and 33.1% of the patients, respectively. Correlations between scales used were significant (r from 0.432 to 0.660; p<0.001). Caregivers tend to report more depressive symptoms in dementia compared to patients' and clinicians' ratings. CSDD should be used in specialized centers, but GDS may be an alternative in patients able to complete the assessment. The need to establish valid criteria for the diagnosis of depression in dementia is urgent.

Consensus statement of the international summit on intellectual disability and Dementia related to post-diagnostic support

ABSTRACTObjectives: Post diagnostic support (PDS) has varied definitions within mainstream dementia services and different health and social care organizations, encompassing a range of supports that are offered to adults once diagnosed with dementia until death.Method: An international summit on intellectual disability and dementia held in Glasgow, Scotland in 2016 identified how PDS applies to adults with an intellectual disability and dementia. The Summit proposed a model that encompassed seven focal areas: post-diagnostic counseling; psychological and medical surveillance; periodic reviews and adjustments to the dementia care plan; early identification of behaviour and psychological symptoms; reviews of care practices and supports for advanced dementia and end of life; supports to carers/ support staff; and evaluation of quality of life. It also explored current practices in providing PDS in intellectual disability services.Results: The Summit concluded that although there is limited research evidence for pharmacological or non-pharmacological interventions for people with intellectual disability and dementia, viable resources and guidelines describe practical approaches drawn from clinical practice. Post diagnostic support is essential, and the model components in place for the general population, and proposed here for use within the intellectual disability field, need to be individualized and adapted to the person's needs as dementia progresses.Conclusions: Recommendations for future research include examining the prevalence and nature of behavioral and psychological symptoms (BPSD) in adults with an intellectual disability who develop dementia, the effectiveness of different non-pharmacological interventions, the interaction between pharmacological and non-pharmacological interventions, and the utility of different models of support.

Barriers and facilitators in accessing dementia care by ethnic minority groups: a meta-synthesis of qualitative studies

BackgroundIt is estimated that there are about 25,000 people from UK ethnic minority groups with dementia. It is clear that there is an increasing need to improve access to dementia services for all ethnic groups to ensure that everyone has access to the same potential health benefits. The aim was to systematically review qualitative studies and to perform a meta-synthesis around barriers and facilitators to accessing care for dementia in ethnic minorities.MethodsDatabases were searched to capture studies on barriers and facilitators to accessing care for dementia in ethnic minorities. Analysis followed the guidelines for meta-ethnography. All interpretations of data as presented by the authors of the included papers were extracted and grouped into new themes.ResultsSix hundred and eighty four papers were identified and screened. Twenty eight studies were included in the meta-synthesis. The analysis developed a number of themes and these were incorporated into two overarching themes: ‘inadequacies’ and ‘cultural habitus’.ConclusionsThe two overarching themes lend themselves to interventions at a service level and a community level which need to happen in synergy.Trial registrationThe review was registered with PROSPERO: CRD42016049326.