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: The occurrence of behavioural changes and problems, and degree of paranoid thoughts, are significantly higher among people who have experienced extreme trauma such as during the Holocaust. People with dementia and traumatic past experiences may have flashbacks reminding them of these experiences, which is of relevance in caring situations. In nursing homes for people with dementia, nursing assistants are often the group of staff who provide help with personal needs. They have firsthand experience of care and managing the devastating outcomes of inadequate understanding of a person's past experiences.

Aim: The aim was to describe nursing assistants' experiences of caring for older people with dementia who have experienced Holocaust trauma.

Research design: A qualitative descriptive and inductive approach was used, including qualitative interviews and content analysis.

Participants and research context: Nine nursing assistants from a Jewish nursing home were interviewed.

Ethical considerations: The study was approved by the Regional Ethical Review Board, Stockholm.

Findings: The theme 'Adapting and following the survivors' expression of their situation' was built on two categories: Knowing the life story enables adjustments in the care and Need for flexibility in managing emotional expressions.

Discussion and conclusion: The world still witnesses genocidal violence and such traumatic experiences will therefore be reflected in different ways when caring for survivors with dementia in the future. Person-centred care and an awareness of the meaning of being a survivor of severe trauma make it possible to avoid negative triggers, and confirm emotions and comfort people during negative flashbacks in caring situations and environments. Nursing assistants' patience and empathy were supported by a wider understanding of the behaviour of people with dementia who have survived trauma.

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:: Persons with dementia may have severe physical and psychological symptoms at the end of life. A therapy dog used in their care can provide comfort and relieve their anxiety. The dog handler guides the dog during the interaction with the patient.

AIM:: To describe the impact of therapy dogs on people with dementia in the final stages of life from the perspective of the dog handler.

METHODS:: Interviews were conducted and analysed using qualitative content analysis.

FINDINGS:: The dog provides comfort and relief through its presence and by responding to the physical and emotional expressions of the dying person.

CONCLUSIONS:: Interactions with dogs were found to have a positive impact on persons with dementia and eased the symptoms associated with end of life according to the dog handlers.

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.

Purpose: Living with Alzheimer’s disease (AD) can involve a person being unable to recall and convey information in daily life. There are several ways to provide person-centred care to older people with AD, e.g. by empowering them in a situation. The use of animal-assisted therapy (AAT) with a therapy dog in the care of people with dementia is increasing, with the presence of a therapy dog being described as improving, among other things, the well-being and socialization of the person. The aim of this study was to illuminate meanings of care for people with AD in their encounters with a therapy dog.

Method: The study used video-recorded observations of the person with AD and the dog. Data were transcribed and analysed using a phenomenological hermeneutic method.

Results: The main theme was “Using one’s own resources and abilities as a human being”, which meant being the person one can be and distancing oneself from the symptoms of AD during the time with the dog.

Conclusions: The feelings evoked in the people with AD included empathy and altruism, which allowed for a sense of joy and tenderness, which may induce a sense of self-worth, of being needed, and of being meaningful.

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.

The number of persons with Alzheimer’s disease is increasing world-wide and the disease affects the persons, their families, the health care system and the economy within society worldwide. The symptoms and behaviours caused by Alzheimer’ disease may be difficult to manage for the person and their caregivers. Alternative methods are recommended before pharmacological treatment. The presence of a therapy dog has been described as beneficial, in for instance increasing well-being and alleviating symptoms and dementia behaviours. The overall aim of this thesis was to gain a deeper understanding of the influence of therapy dogs on persons with Alzheimer’s disease from the person’s and the dog handler’s perspectives. Further, adopting a longitudinal perspective, the study investigates the therapy dog’s influence on activity and sleep for persons with Alzheimer’s disease. Video observations of five persons with Alzheimer’s disease interacting with a therapy dog (I, II), as well as interviews with nine dog handlers (III) were gathered and transcribed. Data was analyzed using a phenomenological hermeneutical method (I, II, III). Registration of activity and sleep was conducted over a period of 16 weeks using an Actigraf that generated curves, and were then analysed using descriptive statistics (III). The time spent with the dog revealed memories and feelings resulting in existential thoughts of oneself and life, which then connected to the present situation (I). Distancing oneself from the symptoms of the disease when interacting with the dog showed a person functioning in the present with the dog, striving for the dog’s best and putting the dog before and above oneself (II). The therapy dog’s presence showed no pattern of effect on the patients’ daytime activity and sleep. The findings instead pointed to a great variety of possible different effects, bringing about increased activity at different time points, for example during night-time sleep (III), creating a respite from illness and contributing wordlessly to an existence but thoroughly directed by the dog handler, where the person was comfortable and took the initiative (IV). In conclusion, the therapy dog team’s presence with the person with Alzheimer’s disease induced meaning that allowed the person’s hidden qualities and abilities to develop and, when observed from a person-centred perspective, also brought out the individual in each person.