Yes / 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. / European Union's Health Programme (2014–2020), grant number 707934. / European Union's Health Programme (2014-2020), grant number 707934. This work received funding under an operating grant from the European Union's Health Programme (2014-2020), grant number 707934.

Aim: The aim of this study was to develop and evaluate an evidence-based creative expression therapy for Chinese people with dementia in hospitals, LTC settings and household. Background: Creative expression (CE) has been shown to be effective for engagement of both people with dementia and carers to communicate in the USA. However, there are limited cross-cultural studies of psychological therapy of people with dementia in China. Method: The overall research strategy is a mixed method. To develop standard CE programme, action research was conducted by three sequential sessions in the geriatric wards, long term care institution and patients’ homes respectively. 7rounds of action research cycle including plan, action, observation, reflective discussion was complemented and 31 people with dementia received CE intervention and evaluating by means of observation, semi-structure interview. The following evaluation research is a controlled trial for people with dementia in LCT settings and hospitals. 91 cases of people with dementia were recruited and divided into two groups. While a series of social contact activities were conducted on the 48 cases control group, the revised CE intervention carried out on the 43 cases test group, both twice weekly for 6 weeks. The primary outcome was measured by MMSE、QOL-AD、CSDD and SFACS in week 0, week 7, week 10. Findings For the social communication and communication of basic needs in SFACS score, pleasure and general alertness mood by OERS, the test group presented significantly better effect than the control group (P < 0.05). Although both group had a decline effect on CSDD score, the test group were maintaining lower 1month after intervention (P < 0.05). Thus the revised CE programme may improve the communication ability and alleviate depression of people with dementia significantly .However, although the quality of life is less affected, it showed a rising tendency after CE programme. Conclusions: This study added trans-cultural evidence on dementia treatment and developed a standard and effective creative expression intervention on Chinese people affected by dementia.

This is a sociological ethnography of nine people with dementia living in a private nursing home in central Scotland. It seeks to find an alternative way to view people in this situation, in a field that has been dominated by the medical modeL. By placing the people before the disease of dementia, they can be studied within the same framework as any people. For this study this framework is everyday life sociology with a focus on symbolic interactionism, ethnomethodology and dramaturgy. Additionally, by gaining the subjective perspective, we can get close to understanding meaning for these people. The ethnographic methods I use consist of participant observation and interviews. For analysis I employ NUDIST to structure the data and the thesis. The settng, Lavender Wing of Deer View Grange Nursing Home, provides context for the study. This is a culture of surveillance and routines, which can be restrictive, infantilizing and disabling for residents. Despite this culture research findings are of socially active participants. By examining relationships through an interactional framework three thematic areas developed concerned with emotions, interactions and classification. These thematic spheres demonstrate the emotional self, the interactional self and the generalized self of research informants. The emotional is concerned with the most inner and intimate self, often engaging in backstage intimacies and in thought. Significant others share with the interactional self, in frontstage performances, which are more ritualistic. The generalized self interacts with the generalized other, most often consisting of everyone in Lavender Wing and is concerned with classification and boundarydefinition. Within these spheres the described relationships are fluid and change according to the situation, and how participating actors define it. To engage in intimacies, rituals and form, and to shift between them requires social competence and active participation. People in this study demonstrate these. Despite restrictions they offer resistance to the environment and to dementia. They often make profound and metaphorical statements, to which this ethnography gives voice. Keywords Everyday life; interaction; nursing home culture; people with dementia; resistance; self and others; social competence; surveillance.

Bakgrund: Demenssjukdom är en global sjukdom som ökar i antal insjuknade för varje år. Fysiska och kognitiva förmågor försämras ständigt under sjukdomsförloppet. Det är vanligt att person och/eller personer med demenssjukdom (PMD) drabbas av malnutrition eftersom de glömmer av att äta och hur de ska äta. Vårdpersonalen behöver därför kunskap om hur måltidssituationer för PMD kan anpassas efter de behov som finns och hur matintaget kan ökas. Syfte: Att belysa aspekter av vårdpersonals kunskap kring måltidssituationer för personer med demenssjukdom på särskilt boende. Metod: En litteraturöversikt baserat på 15 vetenskapliga artiklar. Elva artiklar var av kvalitativdesign och fyra artiklar var av mixad design. Databaserna som användes vid artikelsökning var CINAHL och PubMed. Resultat: Ett huvudresultat visade att vårdpersonalen behövde mer kunskap vid måltidssituationer för att bidra med ökat matintag hos PMD. Genom att vårdpersonalen anpassade måltidssituationer i enlighet med PMD förmågor kunde behoven lättare tillfredsställas. Vårdpersonalen tog hänsyn till bland annat möblering, ljud, ljus och servering för att minska oönskade stimuli vid måltidssituationer för PMD. Slutsats: Vårdpersonalen hade kunskap men inte tillräcklig för att kunna utföra en optimal omvårdnad till PMD. Behoven bland PMD är många och kunskapsbrist hos vårdpersonalen råder. Kunskapsbristen hos vårdpersonalen om måltidssituationer blir tydliga då PMD inte har tillräckligt matintag för att upprätthålla en god nutritionsstatus. / Background: Dementia is a global disease that increases for every year. Physical and psychological abilities reduce continuously during the disease course. It is usual that people with dementia is affected by malnutrition since they forget how and when to eat. Healthcare professionals’ need more knowledge about mealtime situations for people with dementia and how to customize their needs about increasing food intake. Aim: To illustrate aspect of healthcare professional’s knowledge about mealtime situations for people with dementia in nursing homes. Method: A literature review based on 15 research articles. Eleven articles were qualitative design and four were mixed design. Used databases were CINAHL and PubMed. Results: A main result showed that healthcare professionals needed more knowledge about mealtime situations and how to provide increased food intake. Healthcare professionals adjust mealtime situations according to the abilities that people with dementia had. Healthcare professionals did consideration about different kind of arrangement to reduce stimuli in mealtime situations for people living with dementia. Conclusion: Healthcare professionals had knowledge about nursing for people with dementia but not enough. The needs among people living with dementia are many and the lack of knowledge in healthcare professionals' work is not approval. In mealtime situations the lack of knowledge about optimal nutrition status among people with dementia and surrounded by healthcare professionals' is not clearly to sustain.

Background: Previous research shows that people with dementia seem to experience outdoor environments as positive for their mental wellbeing. There are instances where the availability of such environments is limited, due to the perception that it is unsafe. Aim: The aim was to describe the experiences of the outdoor environment in people with dementia. Method: A systematic literature review containing a descriptive synthesis by Evans was used to analyze and compile the data of 11 articles. Findings: The results of the descriptive synthesis formed two themes and two subthemes, the first was reawakening of latent abilities along with the subthemes reminiscing and affected autonomy. The second was support of human interactions along with the subtheme's social communion and experience of meaningful participation. The result shows a relationship between reminiscing, well-being and self-image while residing outdoors, and how the experience of the outdoor environments changes the self-image for people with dementia. Conclusions: Despite findings that suggest positive benefits in relation to visiting the outdoor environment, the lack of research makes the findings inconclusive. Therefore, more research is needed to confirm the positive influence the outdoor environment has on people with dementia.

Informal caregivers (CGs) of people with dementia (PwD) in Ontario may provide upwards of 90 hours or more of caregiving (CG) or assistance to a loved one, per week. CGs of PwD often face increased social isolation, disrupted routines, and experience adverse health effects as this work is incredibly difficult and overwhelming, requiring knowledge, education, resources, and support. eHealth interventions can help to respond to the dynamic and changing needs of these CGs. To respond to these needs, Dr. Richard Sztramko conceptualized iGeriCare, an educational multimedia tool. 10 iGeriCare lessons were created and developed by Dr. Sztramko and Dr. Anthony J. Levinson and his team at the Division of e-Learning and Innovation. The objective of this thesis is to review psychoeducational interventions aimed at CGs of patients with dementia and to evaluate the usability of iGeriCare learning modules. This thesis is comprised of two phases, a systematic literature review and an evaluation of the iGeriCare lessons. A systematic search was performed on MEDLINE, PubMed, CINAHL, and EMBASE. 31 articles and 23 prospective interventions were included in the final analysis. These interventions were generally perceived positively by CGs. Despite CG-perceived value, there is not enough evidence in the literature to clearly state whether online interventions improve CG stress, self-efficacy, or burden. The Quality in Use Integrated Measurement Framework (QUIM) informs usability. Two experienced CGs agreed to participate. After they viewed the iGeriCare lessons on the eLearning management system (through the web-based system 360 Articulate), they were interviewed via telephone to gather their opinions of the usability of the iGeriCare modules. Qualitative interview data were analyzed, resulting in the following themes: relevance of content and information, slide design, ease of navigation, forward learning, educational tools, and accessibility. They perceived iGeriCare as an effective tool with online convenience and relished the thought of an online community whereby CGs can interact in a spirit of comradery and togetherness. / Thesis / Master of Science (MSc) / Informal caregivers (CGs) of people with dementia (PwD) in Ontario may provide upwards of 90 hours or more of caregiving (CG) or assistance to a loved one, per week. CG is incredibly difficult and overwhelming, requiring knowledge, education, resources, and support. Online learning tools can help to respond to the unique needs of CGs. To respond to these needs, Dr. Richard Sztramko conceptualized iGeriCare, an educational multimedia tool. 10 iGeriCare lessons were created and developed by Dr. Sztramko and Dr. Anthony J. Levinson and his team at the Division of e-Learning and Innovation. Two experienced CGs evaluated the usability of the lessons. After they viewed each iGeriCare lesson online, they were interviewed to gather their opinions of the lesson. The feedback was analyzed, resulting in the following themes: relevance of content and information, slide design, ease of navigation, forward learning, educational tools, and accessibility. The CGs perceived iGeriCare as an effective tool with online convenience and relished the thought of an online community whereby CGs can interact in a spirit of comradery and togetherness.

Yes / The aim of this study was to investigate the associations between quality of life and both perceived and objective availability of local green and blue spaces in people with dementia, including potential variation across rural/urban settings and those with/without opportunities to go outdoors. This study was based on 1540 community-dwelling people with dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme. Quality of life was measured by the Quality of Life in Alzheimer’s Disease (QoL-AD) scale. A list of 12 types of green and blue spaces was used to measure perceived availability while objective availability was estimated using geographic information system data. Regression modelling was employed to investigate the associations of quality of life with perceived and objective availability of green and blue spaces, adjusting for individual factors and deprivation level. Interaction terms with rural/urban areas or opportunities to go outdoors were fitted to test whether the associations differed across these subgroups. Higher QoL-AD scores were associated with higher perceived availability of local green and blue spaces (0.82; 95%CI: 0.06, 1.58) but not objective availability. The positive association between perceived availability and quality of life was stronger for urban (1.50; 95%CI: 0.52, 2.48) than rural residents but did not differ between participants with and without opportunities to go outdoors Only perceived availability was related to quality of life in people with dementia. Future research may investigate how people with dementia utilise green and blue spaces and improve dementia-friendliness of these spaces.

Background: The family-centred cultural construct of filial responsibility forms the core foundation of the traditional mosaic of a typical intergenerational Singapore-Chinese family. Due to modernization, several generations co-habiting within the same household or living in separate households have shrunk to smaller-sized immediate and extended families residing in mostly high-rise apartments. This change has impacted on the social norm of traditional intergenerational Singapore-Chinese caregiving. Currently, there are gaps in understanding the intergenerational Singapore-Chinese families and caregiving in dementia. Only a few studies to date have discussed the intersection on intergenerational family care, but an in-depth exploration of intergenerational Singapore-Chinese families' cultural beliefs and values is an important consideration when attempting to understand the family and determine their support and maintenance of relational bonds. Aims: The aim of this longitudinal, case study research using a participatory approach was to better understand the everyday caregiving experience of intergenerational Singapore-Chinese families within the context of each family unit living together in Singapore 'under one roof'. Family biographies were co-constructed with five intergenerational families living 'under one roof' during repeated and scheduled visits with each participating family over a period of between six to 15 months. The interviews included the completion of a 23-item structured questionnaire, co-construction of a genogram and ecomap with each family, drawings, audio recordings and digital photographs of the home environment, items and activities. Results: Narrative analysis of the five intergenerational cases resulted in the emergence of three themes that explained and explored the various dynamics in the data, namely: i) Family values, and its supporting sub-themes of culture; religion; and filial piety; ii) Family support, and its supporting sub-themes of timeliness; internal support network; and external support network; and iii) Family bonds, and its supporting sub-themes of relational; closeness and conflict; and challenges. Data analysis also generated a meta-theme 'Intergenerational Family Connections' which was supported by three properties: i) Strongly held beliefs and practices; ii) Shared space; and iii) Supporting family togetherness. Conclusion: This study has led to an in-depth understanding of the everyday experience of the intergenerational Singapore-Chinese families of a person with dementia, within the shared context of their family construction. This study makes an original and significant contribution to knowledge through the development of a new theoretical model on intergenerational family connections in dementia care. The findings will better inform formal and informal service providers and policy makers on how best to support and maintain the relational dynamics of intergenerational Singapore-Chinese families who provide care for the person with dementia at home.

Bakgrund: Antalet personer med demenssjukdom ökar i Sverige och i övriga världen. Sjukdomen har stor påverkan på den drabbade personens liv, livskvalitet och autonomi. Det finns ännu ingen behandling som botar sjukdomen, men det finns mycket att göra för att öka livskvaliteten och stödja personer med demenssjukdom. Generellt sett har utevistelse visat sig ha stor betydelse för personers välmående. Men beroende på den ofta begränsade utemiljöns tillgänglighet och tidsbrist hos omvårdnadspersonalen så kommer många personer med demenssjukdom mer sällan ut än de som självständigt kan sörja för sin utevistelse. Därför är det av vikt att beskriva kunskap om utevistelse för personer med demenssjukdom boende på vårdhem. Syfte: Syfte är att sammanställa kunskap om utevistelsens betydelse för personer med demenssjukdom boende på vårdhem. Metod: En litteraturöversikt grundad på 13 vårdvetenskapliga artiklar, av kvantitativ och kvalitativ ansats. Resultat: Utevistelse i olika typer av trädgårdar, aktiviteter utomhus och att vistas ute i dagsljus har positiva effekter på personer med demenssjukdom, som ökat välbefinnande, minskat behov av läkemedel, ökad funktionell och kognitiv förmåga. Omvårdnadspersonal och anhöriga har kunskap i att utevistelse kan påverka personer med demenssjukdom positivt, och det är viktigt att möjliggöra utevistelse och erbjuda aktiviteter utomhus som är individuellt anpassade efter behov och förmåga. Slutsats: För personer med demenssjukdom ansågs utevistelsen som positivt, samt en bidragande faktor till att personer med demenssjukdom kände ökad livskvalitet. Aktiviteterna bör vara individanpassade för störst effekt på deras välbefinnande. / Background : The number of people with dementia is increasing in Sweden and the rest of the world. The disease has major impact on life itself, quality of life and autonomy for the affected person. There is still no treatment that cures the disease, but much can be done to increase the quality of life and support for people with dementia. In general, outdoor stay has proven to be of great importance to well-being. However, due to the often restricted outdoor environment's availability and lack of time from the healthcare professionals, many people with dementia rarely outweigh those who can independently provide for their own ability for outdoor stay. Therefore, it is important to describe the knowledge of outdoor stay for people with dementia living at nursing homes. Aim: The purpose is to put together knowledge about the meaning of outdoor stay for people with dementia living at nursing homes. Method: A literature review based on 13 scientific articles, quantitative and qualitative. Result: Outdoor stay in the form of different types of gardens, outdoor activities and exposure of daylight have positive effects on persons with dementia disease, as increased well-being and physical and cognitive function, and need of medication. Health care professionals and family members have knowledge about positive effects of outdoor stay for people with dementia disease, and it is important to make outdoor stay possible and offer activities outdoors that are individually adapted by need and ability. Conclusions: For people with dementia outdoor stay had positive results and as a contributing factor to people with dementia disease feeling increased quality of life. The outdoor activities should be individually adapted to the greatest effect on their well-being.

The study aims to describe and analyse how case managers reflect and act in the regards to self-determination when caring for residents with dementia diagnosis. Our main questions dealt with how the case managers handle the right to self-determination in relation to the residents’ relatives’ opinions when a person has dementia. To find answers to our questions, we interviewed seven care takers within elderly care in four different municipalitys in the Southern Sweden. We used qualitative interviews based on a semi-structured interview guide and two vignettes. The vignettes were based on two fictive narratives which both included persons with dementia but with different relatives and opinions. The purpose of the vignettes were to investigate whether there was different perceptions among the case managers in terms of consideration the residents’ self-determination in relation to their relatives. The results of the study were analyzed using Hasenfeld’s theory on Human service organizations, Lipsky’s street-level bureaucracy and Strauss’ negotiation-perspective. We displayed similarities to previous research showing that the case managers work with the residents’ best interest in mind even though relatives can be very obstinate. Our main conclusions are that the interpretation of self-determination is fluidity according to the case managers is fluidity and the case managers at some occasions try to persuade the person with dementia to apply for care and welfare. Furthermore can the relatives of the person with dementia be both beneficial and disadvantageous depending of the relation between them.