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People living with dementia or mild cognitive impairment (MCI) experience stigmatisation and there are not many specific psychosocial interventions dedicated to help them coping with this issue, reducing its impact on their lives.
This study aimed to a) investigate the stigmatisation level among people with dementia and MCI in Poland, Italy and the United Kingdom and b) assess the role of the Meeting Centre Support Programme (MCSP) in decreasing stigmatisation.
We investigated outcomes for 114 people with dementia and MCI living in Italy, Poland and the UK who participated 6 months in MCSP or usual care (UC) using a pre/post-test control group study design. Level of stigmatisation was assessed with the Stigma Impact Scale: neurological impairment (SIS).
Stigmatisation level (SIS) among participants varied from 2 to 65 (median=33.5; Q1=27; Q3=41) with people from the UK experiencing a statistically significantly higher level of stigmatisation than people in Italy and Poland. In Italy, stigmatisation was lower (p=0.02) in the MCSP group following the intervention. In Poland, the social isolation level did not significantly change in MCSP, but increased (p=0.05) in UC. In the UK, the social rejection level raised (p=0.03) in MCSP. Overall, the combined data of the three countries did not show statistically significant differences in SIS between MCSP and UC.
Stigmatisation among people with dementia and MCI is complex and seems culturally dependent. There is a great opportunity in psychosocial interventions to reduce the burden of stigma among people with dementia which requires further investigation.
The Meeting Centre Support Programme (MCSP) is a community-based approach to support people living with dementia and their families. It was developed in the Netherlands and has been implemented in other European Countries (Italy, Poland and the UK) within the JPND-MEETINGDEM project.
To assess the relationship between background characteristics of people with dementia participating in MCSP, mood, quality of life (QoL) and experienced stigma, and to explore if and how the experienced stigma changed after 6 months of participation in MCSP.
A pretest (M1) post-test (M7) control group design with matched groups regarding severity of dementia was applied. In each country, a minimum of 25 participants using MCSP were compared with people with dementia receiving ‘usual care’. Data were collected with the Stigma Impact Scale, Cornell Scale for Depression in Dementia, Global Deterioration Scale and two QoL scales (QoL-AD & DQoL). Differences in background characteristics were taken into account in the analyses.
The preliminary analysis on 116 participants at baseline shows that the level of stigma was low to moderate. People felt more socially rejected in the UK than in Poland and Italy. The level of perceived stigmatization appeared negatively correlated with QoL areas and positively correlated with negative mood. Changes after 6 months will be presented.
It is expected that after 6 months people living with dementia participating in MCSP will experience less stigma, as in contrast with usual care MCSP promotes social integration of people with dementia and person-centered support.
Disclosure of interest
The authors have not supplied their declaration of competing interest.
Various art programs are available for people with dementia. These have been shown to contribute to the patient’s quality of life. But are all types of art suitable for this purpose and for the target group? This study investigated whether responsiveness during museum programs depends on the type of art work shown and/or characteristics of the person with dementia, such as severity of dementia or specific cognitive impairments.
A cross-sectional observational study was conducted in which the responsiveness of people with dementia to different types of art was investigated as part of a study into the implementation of the Unforgettable program, an interactive guided museum tour program in Dutch museums for people with dementia.
The appreciative and active responsiveness and interaction with others during the program appeared related to the severity of dementia, to specific cognitive impairments, and to type of artworks. People with more severe dementia responded less to art than people with mild dementia. Artworks with more natural elements revealed less interaction with others. Artifacts (i.e., objects not originally meant as artworks) evoked more reactions than artworks.
The study results are important to take into account when designing and offering art programs for people with dementia. Knowing which type of art works appeals most to (subgroups of) people with dementia will contribute to the optimization of art programs for this target group and to their active participation in such programs.
The aim was to develop an evidence-based model that focuses specifically on factors that enable the provision of personalized care to facilitate and promote the implementation of community-based personalized dementia care interventions. The model is based on our previous research and additional literature.
The theoretical model of adaptive implementation was used as a framework to structure our model. Facilitators and barriers considered relevant for personalized care were extracted from our studies and additional literature, and were synthesized into the new evidence-based implementation model and checklist for personalized dementia care in the community.
Extraction of data led to a composition of an evidence-based model for the implementation of personalized psychosocial care interventions that incorporates core components of personalized care. The model addresses several issues, e.g. how personalized care interventions should be offered and to whom; whether these are able to adapt to personal characteristics and needs of clients and informal caregivers; and whether both organizational management and staff that provide the intervention support personalized care and are able to focus on providing individualized care.
Our model provides a checklist for researchers, professional caregivers, and policy-makers who wish to develop, evaluate, or implement personalized care interventions.
In the European Rosetta project three separate, previously developed, ICT systems were improved and integrated to create one modular system that helps community-dwelling people with mild cognitive impairment and dementia in different stages of the disease. The system aims to support them in daily functioning, monitor (deviations from) patterns in daily behaviour and to automatically detect emergency situations. The study aimed to inventory the end users’ needs and wishes regarding the development and design of the new integrated Rosetta system, and to describe the to be developed Rosetta system.
Qualitative user-participatory design with in total 50 persons: 14 people with dementia, 13 informal carers, 6 professional carers, 9 dementia experts, 7 care partners within the project, and 1 volunteer. In the Netherlands user focus group sessions were performed and in Germany individual interviews. Dementia experts were consulted by means of a questionnaire, an expert meeting session, and interviews.
Persons with dementia and informal carers appreciated the following functionalities most: help in cases of emergencies, navigation support and the calendar function. Dementia experts rated various behaviours relevant to monitor in order to detect timely changes in functioning, e.g. eating, drinking, going to the toilet, taking medicine adequately, performance of activities and sleep patterns. No ethical issues regarding the use of sensors and cameras were mentioned.
The user participatory design resulted in valuable input from persons with dementia, informal carers and professional carers/dementia experts, based on which a first prototype Rosetta system was built.
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