To Örebro University

Objective: Studies on the quality of home care services (HCS) offered to persons with dementia (PwDs) reveal the prevalence of unmet needs and dissatisfaction related to encounters and a lack of relationships with staff. The objective of this study was to enhance knowledge of the perceptions of PwDs regarding their treatment with dignity and respect in HCS over time.

Design: A mixed longitudinal cohort study was designed to study trends in the period between 2016 and 2018 and compare the results between PwDs (cases) and persons without dementia (controls) living at home with HCS.

Setting and Participants: Persons aged 65 years and older with HCS in Sweden.

Methods: Data from an existing yearly HCS survey by the Swedish National Board of Health and Welfare (NBHW) was used. The focus was on questions concerning dignity and respect. NBHW data sets on diagnoses, medications, HCS hours, and demographic information were also used. We applied GEE logistic and cumulative logit regression models to estimate effects and trends of interest after controlling for the effects of age, gender, self-rated health, and number of HCS hours.

Results: Over the study period, 271,915 (PwDs¼8.1%) respondents completed the survey. The results showed that PwDs were significantly less likely (3%-10% lower odds and cumulative odds) than controls to indicate that they were satisfied in response to questions related to dignity and respect. Both groups experienced a decrease in satisfaction from 2016 to 2018. Females, individuals with poor self-rated health, and individuals granted more HCS hours were found to be more dissatisfied.

Conclusions and Implications: The HCS organization needs to shift from a task-oriented system to a person-centered approach, where dignity and respect are of the utmost importance. The HCS organizations need to be developed to focus on competence in person-centered care, and leadership to support staff.

Background: Information and communication technology (ICT) increases participation in life activities, and young adults are frequent users. Young adults with intellectual disability (ID) do not use ICT as much as their peers, and little is known about how ICT is used by young adults with ID. This study describes the use of ICT from the perspective of young adults with mild to moderate ID in a municipal social care context.

Method: Semi-structured interviews were used to collect information from 11 young adults with mild-to-moderate ID living in residential care and analysed using a content analysis.

Results:ICT was used for family relationships, daily support, interactions based on interests and amusement, and as support for offline activities. Family members were important providers of support for ICT use.

Conclusion: Young adults with mild-to-moderate ID use ICT in their daily life. The social care context needs to be further investigated due to its influence on the young adults' access to ICT and need of support.

Purpose: To describe the perspectives of caregivers in terms of using singing and music in their everyday work, and of their effect on care and interaction with the person with dementia.

Methods: A qualitative design was used, consisting of group discussions with professional caregivers from three nursing homes in a medium-sized city in a rural area of Sweden.

Results: The results demonstrate that caregiver singing and music can be powerful and useful in the care of and in communication with persons with dementia. Music, for example, can be used to facilitate socialization as it opens up for discussion, while caregiver singing was preferable when it came to the facilitation of care situations and interaction.

Conclusions: Singing and music can be powerful and useful tools in the care of and in communication with persons with dementia. Regardless of whether singing or music is used, the most important factor is that a person-centred approach is adopted so as to make the music a facilitative tool. Caregiver singing and music are ways to connect with the person with dementia and an understanding of their use can contribute to dementia research. This in turn can increase awareness of the possible ways to strengthen the partnership between caregivers and persons with dementia.

Background: Living with dementia involves both illness and health, and self-care and care from others. As most persons with dementia live in their own homes, dementia affects not only the person with the disease, but also family, commonly the partner. Research shows that spousal carers feel as though they are losing their partners since they can no longer share thoughts, feelings and experiences as a couple.

Aim: The aim of the study was to describe the sense of togetherness of the spouses when one spouse has dementia.

Method: The sample consists of 18 recorded conversations between 15 persons with dementia and their spouses. The filmed conversations were transcribed verbatim and then analysed using qualitative content analysis.

Findings: One overarching theme arose: Dementia preserved and challenged the value of ?us.? It can be challenging for a couple in which one partner has dementia to preserve a sense of togetherness and to have the relationship they wish for.

Conclusion: Based on our results, we suggest that practitioners should help couples to strengthen their bond as a couple so as to maintain a sense of well-being. Future studies should examine couplehood under differing conditions, such as long- versus short-term relationships. Prior relationship quality may also be a factor that influences the sense of couplehood following a serious health challenge, such as dementia.

Implication for practice: When spouses were able to live together, their relationship was enriched at many levels. Their love for each other strengthened them as a unit ? as an ?us? ? where togetherness seemed to be strong. Future studies need to examine whether the sense of couplehood varies depending on the length of the relationship (i.e., a relationship of many years or a relatively new relationship).

Background: Information and communication technology (ICT) has increased in importance and facilitates participation in several life areas throughout society. However, young adults with mild to moderate intellectual disability make less use ICT than the general population. Disability services staff play a central role in supporting and enabling service users in daily life, and their perceptions of ICT are important to their role in service provision.

Aim: To describe staff perceptions of the role of ICT and how it affects daily life in young adults with mild to moderate intellectual disability living in residential homes.

Method: Focus group interviews and individual interviews were conducted with staff working in residential homes in which young adults with mild to moderate intellectual disability live. All materials were transcribed verbatim and analysed using latent content analysis.

Findings: Staff perceived ICT and, more specifically, the Internet as being supportive of both daily life and social relationships of these young adults, but they also viewed ICT as posing social risks. Perceptions of and support for ICT were related to staff perceptions about what is appropriate and manageable in relation to an individual resident’s functioning level. Staff members also considered the views of parents about appropriate content when providing support.

Discussion: Staff in residential homes for young adults with mild to moderate intellectual disability use their implicit moral judgement about the use of ICT by residents. Their enablement of and support for ICT are not primarily based on the service user’s wishes or interests. This finding implies a risk that the organization of a conflict-free service provision is a higher priority than service users’ participation in social life.

Background: A major concern in dementia care is communication problems, and thus problems in interaction with caregivers. A result of that might be that the person with dementia (PWD) express resistance of aggressiveness. Different kind of music activities, especially the method Caregivers Singing (CS) - when caregivers sing for or together with persons with dementia during caring, has shown to reduce these expressions and increase communication and cooperation.

Methods and aim: 30 professional caregivers at three nursing homes for persons with dementia participated in an education program with music and CS as a tool to person centered care. They participated in group discussions about their experiences of using CS as a method in their work. The discussions were recorded and analyzed with quali-tative content analysis aiming to explore their experiences and prefer-ences, as well as when it was preferable to use music and CS in their work with PWDs, and also what the outcomes were.

Results: The analysis resulted in two themes; “To facilitate care-giving situations” which included CS at the most, and the caregivers described singing songs favorable for the PWD to calm upset PWDs down and increase cooperation. The other theme; “To increase togeth-erness”, included mostly background music that were preferred by the PWD. This opened up for memories, and social activities such as dancing.

Conclusions: To educate caregivers in a structured way on how to use music and CS in their everyday work can be a way to reach person centered care for PWDs, and to facilitate problematic care situ-ations, as well as increase socialization and communication between PWDs and their caregivers.

Aim: To examine the interplay of social support, pain intensity and ethnicity as moderators and covariates of relationship on depressive symptomatology.

Methods: Racially and ethnically diverse elders responded to measures of depressive symptomatology and social support.

Results: Hispanics reported significantly higher prevalence of moderate pain intensity and depressive symptomology, and lower prevalence of high social support compared with other ethnic groups. Although social support showed reduced depressive symptomatology among those with high pain intensity, it did not play a significant role in decreasing depressive symptomatology among those with low/moderate pain intensity.

Conclusion: Social support in decreasing depressive symptomatology is more effective in older adults with high pain intensity than those with moderate or low levels of pain intensity.

BACKGROUND: Persons with dementia are at risk of malnutrition and thus in need of assistance during mealtimes. Research suggest interventions for caregivers to learn how to facilitate mealtimes and eating, while other suggest a working environment enabling the encounter needed to provide high-quality care. However, the phenomenon of caring for this unique population needs to be elucidated from several perspectives before suggesting suitable implications that ensure their optimal health.

OBJECTIVES: To illustrate the meanings within caregivers' experiences of caring for persons with dementia during mealtime situations. We also measured weight and food intake among individuals with dementia to explain better the phenomenon of caring for them during mealtimes.

METHODS: Mixed method including focus group interviews with seven caregivers analyzed using phenomenological hermeneutics. In addition, for nine persons with dementia, weight and food intake were collected and descriptive statistics were calculated.

ETHICAL CONSIDERATIONS: Ethical review was obtained from an ethics committee, and all caregivers signed a consent form after being informed on the issue of research ethics. Relatives for persons with dementia were informed and signed the consent. In addition, throughout the study, the persons' expressions were observed aiming to respect their vulnerability, integrity, and dignity.

FINDINGS: One theme emerged from interviews (struggling between having the knowledge and not the opportunity), which was built upon three subthemes (being engaged and trying; feeling abandoned and insufficient; being concerned and feeling guilty). Seven of nine persons with dementia lost a minimum of 1.3 kg of weight and ate a maximum of 49.7% of the food served.

CONCLUSION: Caregivers struggle because they have knowledge about how to provide high-quality care but are unable to provide this care due to organizational structures. The weight loss and insufficient eating among the persons with dementia may support this conclusion. Sufficient time for adequate care should be provided.

Objective: ‘Music Therapeutic Caregiving’, when caregivers sing for or together with persons with dementia during morning care situations, has been shown to increase verbal and nonverbal communication between persons with dementia and their caregivers, as well as enhance positive and decrease negative emotions in persons with dementia. No studies about singing during mealtimes have been conducted, and this pilot project was designed to elucidate this. However, since previous studies have shown that there is a risk that persons with dementia will start to sing along with the caregiver, the caregiver in this study hummed such that the person with dementia did not sing instead of eat. The aim of this pilot project was threefold: to describe expressed emotions in a woman with severe dementia, and describe communication between her and her caregivers without and with the caregiver humming. The aim was also to measure food and liquid intake without and with humming.

Method: The study was constructed as a Single Case ABA design in which the ordinary mealtime constituted a baseline which comprised a woman with severe dementia being fed by her caregivers in the usual way. The intervention included the same woman being fed by the same caregiver who hummed while feeding her. Data comprised video observations that were collected once per week over 5 consecutive weeks. The Verbal and Nonverbal Interaction Scale and Observed Emotion Rating Scale were used to analyze the recorded interactions.

Results: A slightly positive influence of communication was shown for the woman with dementia, as well as for the caregiver. Further, the women with dementia showed a slight increase in expressions of positive emotions, and she ate more during the intervention.

Conclusion: Based on this pilot study no general conclusions can be drawn. It can be concluded, however, that humming while feeding persons with dementia might slightly enhance communication, and positive expressed emotions in persons with dementia. To confirm this, more studies on group levels are needed. Because previous studies have found that caregiver singing during caring situations influences persons with dementia positively it might be desirable to test the same during mealtime.