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Background: Getting a diagnosis of dementia does not equate to equitable access to care. People with dementia and unpaid carers face many barriers to care, which can vary within, and across, different countries and cultures. With little evidence across different countries, the aim of this scoping exercise was to identify the different and similar types of inequalities in dementia across Europe, and provide recommendations for addressing these. Methods: We conducted a brief online survey with INTERDEM and INTERDEM Academy members across Europe, and with members of Alzheimer Europe's European Working Group of People with Dementia and Carers in February and March 2023. Members were asked about whether inequalities in dementia care existed within their country; if yes, to highlight three key inequalities. Responses on barriers were coded into groups, and frequencies of inequalities were calculated. Highlighted inequalities were discussed and prioritised at face‐to‐face and virtual consensus meetings in England, Ireland, Italy, and Poland, involving people with dementia, unpaid carers, health and social care providers, and non‐profit organisations. Results: Forty‐nine academics, PhD students, people with dementia and unpaid carers from 10 countries (Belgium, Denmark, Germany, Greece, Ireland, Italy, Poland, Malta, Netherlands, UK) completed the survey. The most frequently identified inequalities focused on unawareness and lack of information, higher level system issues (i.e. lack of communication among care professionals), lack of service suitability, and stigma. Other barriers included workforce training and knowledge, financial costs, culture and language, lack of single‐point‐of‐contact person, age, and living location/postcode lottery. There was general consensus among people living dementia and care providers of unawareness as a key barrier in different European countries, with varied priorities in Ireland depending on geographical location. Conclusions: These findings provide a first insight on dementia inequalities across Europe, generate cross‐country learnings on how to address these inequalities in dementia, and can underpin further solution‐focused research that informs policy and key decision makers to implement changes. Key points: There are numerous similar barriers to accessing dementia care across different European countries.Some of the key challenges to equitable dementia care are lack of workforce knowledge, lack of information, stigma, financial barriers, and lack of communication among care professionals.Cultural challenges, postcode lottery, and service suitability were also raised as key barriers to dementia care. [ABSTRACT FROM AUTHOR]

Background: People with dementia are often marginalized and excluded from influence, also in relation to dementia research. There is, however, a growing requirement for inclusion through Patient and Public Involvement (PPI), but there is still limited knowledge on how researchers can fully benefit from the involvement of people with dementia in the development and testing of psychosocial interventions. This paper describes the results of a pan‐European consultation with people with dementia, synthesizing their views on outcomes of psychosocial interventions. Objective: To involve people with dementia in establishing what are meaningful outcomes when participating in psychosocial interventions. Setting and participants: Consultations took place at four divergent sites across Europe, involving twenty‐five people with dementia from nine European countries. Methods: The methods used for the consultation were developed through an iterative process involving people with dementia. Data from the consultation were analysed from a thematic analysis approach. Results: The results suggested that people with dementia wish to participate in interventions that enhance their well‐being, confidence, health, social participation and human rights. This highlights a need for improvements in psychosocial research to capture these outcomes. Discussion and conclusions: Involving people with dementia in discussions of psychosocial interventions has enhanced our understanding about meaningful outcome measures in research and methods of data collection. This study suggests that new outcome measures in psychosocial research are needed where concepts of positive psychology and social health can guide innovation and outcome measurement. [ABSTRACT FROM AUTHOR]

This paper reflects Alzheimer Europe's position on PPI (patient and public involvement) in the context of dementia research and highlights some of the challenges and potential risks and benefits associated with such meaningful involvement. The paper was drafted by Alzheimer Europe in collaboration with members of INTERDEM and the European Working Group of People with Dementia. It has been formally adopted by the Board of Alzheimer Europe and endorsed by the Board of INTERDEM and by the JPND working group ‘Dementia Outcome Measures - Charting New Territory’. Alzheimer Europe is keen to promote the involvement of people with dementia in research, not only as participants but also in the context of PPI, by generating ideas for research, advising researchers, being involved in consultations and being directly involved in research activities. This position paper is in keeping with this objective. Topics covered include, amongst others, planning involvement, establishing roles and responsibilities, training and support, managing information and input from PPI, recognising the contribution of people with dementia involved in research in this way, promoting and protecting the rights and well-being of people with dementia, training and support, and promoting an inclusive approach and the necessary infrastructure for PPI in dementia research. [ABSTRACT FROM AUTHOR]

Background: People with dementia can benefit from a palliative care approach. Recommendations, such as those of the EAPC have been proposed to strengthen the provision of palliative care for this group of patients. Yet, it remains challenging for professionals to identify when a person with dementia is in need of palliative care. The objective of this study therefore was to explore when professionals in long-term care settings consider a person with dementia in need of palliative care. Methods: Teams with in total 84 professionals working in 13 long-term care settings from 6 countries (France, Germany, Italy, Norway, Poland and the Netherlands) received a case-vignette concerning a person with dementia recently admitted to a nursing home. Teams were asked to discuss when they considered people with dementia eligible for palliative care. The constant comparative method was used to analyse their answers. Results: Three different time points in the disease trajectory when people with dementia were considered to be eligible for palliative care were extracted: (1) early in the disease trajectory; (2) when signs and symptoms of advanced dementia are present; and (3) from the time point that curative treatment of co-morbidities is futile. Yet, none of these time points was uniformly considered by the professional teams across Europe. In some cases, professionals working in the same nursing home didn't even reach consensus when considering persons with dementia eligible for palliative care. Conclusion: The results of the study identified that professionals across Europe have different opinions regarding the time point when to consider a person with dementia in need of palliative care. [ABSTRACT FROM AUTHOR]

There is evidence supporting the use of psychosocial interventions in dementia care. Due to the role of policy in clinical practice, the present study investigates whether and how the issue of psychosocial care and interventions has been addressed in the national dementia plans and strategies across Europe. A total of 26 national documents were found. They were analyzed by content analysis to identify the main pillars associated with the topic of psychosocial care and interventions. Specifically, three categories emerged: (1) Treatment, (2) Education, and (3) Research. The first one was further divided into three subcategories: (1) Person-centred conceptual framework, (2) Psychosocial interventions, and (3) Health and social services networks. Overall, the topic of psychosocial care and interventions has been addressed in all the country policies. However, the amount of information provided differs across the documents, with only the category of 'Treatment' covering all of them. Furthermore, on the basis of the existing policies, how the provision of psychosocial care and interventions would be enabled, and how it would be assessed are not fully apparent yet. Findings highlight the importance of policies based on a comprehensive and well-integrated system of care, where the issue of psychosocial care and interventions is fully embedded.

Objectives: This is the first study to focus on the role and impact of a psychosocial intervention, the Meeting Centre Support Programme (MCSP), for people living with dementia and mild cognitive impairment (MCI) on the experience of stigmatisation across three different European countries., Method: A pre/post-test control group study design compared outcomes for 114 people with dementia ( n =74) and MCI ( n =40) in Italy, Poland and the UK who received either the MCSP or usual care (UC). The 'Stigma Impact Scale, neurological disease' (SIS) was administered at two points in time, 6 months apart. The Global Deterioration Scale (GDS) was used to assess the level of cognitive impairment., Results: Although statistical analysis did not show any significant differences between MCSP and UC at pre/post-test for the 3 countries combined, there were significant results for individual countries. In Italy, the level of SIS was significantly lower ( p =0.02) in the MCSP group following the intervention. The level of Social Isolation increased significantly ( p =0.05) in the UC group at follow-up in Poland. The level of Social Rejection was significantly higher ( p =0.03) over time for UK participants receiving MCSP compared to UC., Conclusion: The experience of stigma by people living with dementia and MCI is complex and there may be different country specific contexts and mechanisms. The results do not enable us to confirm or disconfirm the impact of a social support programme, such as MCSP, on this experience. Difficulties in directly measuring the level of stigma in this group also requires further research.

Background: The Meeting Centres Support Programme (MCSP) offers a combined approach to providing practical, emotional and social support to people living with mild to moderately severe dementia and their family carers in the community., Methods: A mixed methods explanatory design was used. The evaluation took place within the framework of the international Joint Programme - Neurodegenerative Disease Research (JPND) - MEETINGDEM study in nine Meeting Centres in Italy, Poland and the United Kingdom. Eighty-seven people with dementia and 81 family carers completed a user evaluation survey after three months and 83 people with dementia and 84 carers after 6 months of participation in MCSP. Thirty-two people with dementia and 30 carers took part in focus groups after nine months., Results: The percentage of people with dementia who were very satisfied with the programme increased significantly over time ( p  = 0.05). The majority of carers reported that they felt less burdened after three months of participation in MCSP (48.1% much less; 35.4% a little less). After six months, this percentage increased significantly to 91% ( p  = 0.04, 57.7% much less; 33.3% little less). Focus group analysis showed that people with dementia and carers in all countries/centres improved their ability to maintain emotional balance., Conclusions: The MCSP is highly appreciated by people with dementia and carers in all countries and it confirms the results of previous research into MCSP in the Netherlands. Our findings indicate that MCSP is a model that can help its users to increase their capacity to deal with the challenges caused by dementia and can promote emotional balance.

Background: People with dementia can benefit from a palliative care approach. Recommendations, such as those of the EAPC have been proposed to strengthen the provision of palliative care for this group of patients. Yet, it remains challenging for professionals to identify when a person with dementia is in need of palliative care. The objective of this study therefore was to explore when professionals in long-term care settings consider a person with dementia in need of palliative care., Methods: Teams with in total 84 professionals working in 13 long-term care settings from 6 countries (France, Germany, Italy, Norway, Poland and the Netherlands) received a case-vignette concerning a person with dementia recently admitted to a nursing home. Teams were asked to discuss when they considered people with dementia eligible for palliative care. The constant comparative method was used to analyse their answers., Results: Three different time points in the disease trajectory when people with dementia were considered to be eligible for palliative care were extracted: (1) early in the disease trajectory; (2) when signs and symptoms of advanced dementia are present; and (3) from the time point that curative treatment of co-morbidities is futile. Yet, none of these time points was uniformly considered by the professional teams across Europe. In some cases, professionals working in the same nursing home didn't even reach consensus when considering persons with dementia eligible for palliative care., Conclusion: The results of the study identified that professionals across Europe have different opinions regarding the time point when to consider a person with dementia in need of palliative care.