| 1. |
- Berglund, Mia, 1964-, et al.
(författare)
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Keys to person-centred care to persons living with dementia : Experiences from an educational program in Sweden
- 2019
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Ingår i: Dementia. - : Sage Publications. - 1471-3012 .- 1741-2684. ; 18:7-8, s. 2695-2709
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Tidskriftsartikel (refereegranskat)abstract
- Growing old entails an increased risk of disabilities and illnesses such as dementia. The orientation in Sweden on national level is that individuals remain in their own homes if desired and receive person-centred home care. The aim of this study was to describe the experience of an educational program and its influence on daily provision of care to persons with dementia. A lifeworld approach was used. Data were collected through group interviews with care providers in the context of home. The findings are presented in five themes: Increased knowledge about dementia and treatment, Relationship-building in order to provide good care, Open and flexible approach conveys calm, Continuity and flexibility are cornerstones in the care and Perceived improvements. This person-centred educational intervention resulted in a care that was based on each individual’s personality, preferences and priorities in life. Education given with continuity over time is key to improving provision of care to person with dementia.
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| 2. |
- Bielsten, Therese, et al.
(författare)
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A review of couple-centred interventions in dementia : Exploring the what and why - Part A.
- 2017
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Ingår i: Dementia. - : SAGE Publications. - 1471-3012 .- 1741-2684. ; 18:7-8, s. 2436-2449
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Forskningsöversikt (refereegranskat)abstract
- Introduction: Symptoms of dementia bring about challenges to couples' relationships. Relationship-focused support has been highlighted to be of significant importance for sustained relationship quality and to reduce the negative impact of dementia on the dyadic relationship. This review aimed to explore the 'what' and 'why' of interventions aimed at couples where one partner has a diagnosis of dementia and in which the couple jointly participate. Method: Searches were performed in Academic Search Premier, CINAHL, PsycINFO, PubMed, Scopus and Web of Science from January 2000 to August 2017. Results: Six studies were included. Objectives for the person with dementia was related to cognitive function and for the care partner the objectives were related to well-being. The majority of the outcomes were mirrored by the objectives and focused on cognitive function for people with dementia and depression and relationship quality for care partners. Our findings indicate that people with dementia should be included in the assessment of the relationship in order to gain an overall picture of relationship dynamics and to increase tailored support in couple-centred interventions. Conclusions: The findings of this review indicate that joint interventions for people with dementia and care partners are lacking a genuine dyadic approach where both partners' views of their relationship are valued. In order to identify targets for support and to use the appropriate outcome measures, the quality of the relationship should be recognised and taken into account. Moreover, there is a lack of a salutogenic approach in couple-centred interventions in which couples' strengths and resources can be identified and supported.
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| 3. |
- Bielsten, Therese, et al.
(författare)
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An extended review of couple-centred interventions in dementia: Exploring the what and why - Part B
- 2019
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Ingår i: Dementia. - : SAGE PUBLICATIONS LTD. - 1471-3012 .- 1741-2684. ; 18:7-8, s. 2450-2473
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Forskningsöversikt (refereegranskat)abstract
- This scoping review is an extended version of a narrative review of couple-centred interventions in dementia shared in part A and the previous publication in this edition. The rationale for expanding study A emerged through the fact that most dyadic interventions have samples consisting of a majority of couples. The exclusion of interventions with samples of mixed relationships in part A therefore contributed to a narrow picture of joint dyadic interventions for couples in which one partner has a dementia. The aim of this second review is to explore the what (types of interventions) and the why (objectives and outcome measures) of dyadic interventions in which sample consists of a majority of couples/spouses and in which people with dementia and caregivers jointly participate. Method A five-step framework for scoping reviews guided the procedure. Searches were performed in Academic Search Premier, CINAHL, PsycINFO, PubMed, Scopus, and Web of Science. Results Twenty-one studies with various types of psychosocial interventions were included. The main outcome measure for people with dementia was related to cognitive function, respectively caregiver burden and depression for caregivers. Conclusions The findings of this extended review of joint dyadic interventions in dementia are in line with the findings of part A regarding the negative approach of outcomes, lack of a genuine dyadic approach, lack of tailored support, neglect of interpersonal issues and the overlook of the views of people with dementia. This review also recognises that measures of caregiver burden, as well as relationship quality should be considered in samples of mixed relationships due to the different significance of burden and relationship quality for a spouse as opposed to an adult child or friend.
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| 4. |
- Brorsson, Anna, et al.
(författare)
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Being a pedestrian with dementia : A qualitative study using photo documentation and focus group interviews
- 2016
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Ingår i: Dementia. - : Sage Publications. - 1471-3012 .- 1741-2684. ; 15:5, s. 1124-1140
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Tidskriftsartikel (refereegranskat)abstract
- The aim of the study was to identify problematic situations in using zebra crossings. They were identified from photo documentations comprising film sequences and the perspectives of people with dementia. The aim was also to identify how they would understand, interpret and act in these problematic situations based on their previous experiences and linked to the film sequences. A qualitative grounded theory approach was used. Film sequences from five zebra crossings were analysed. The same film sequences were used as triggers in two focus group interviews with persons with dementia. Individual interviews with three informants were also performed. The core category, the hazard of meeting unfolding problematic traffic situations when only one layer at a time can be kept in focus, showed how a problematic situation as a whole consisted of different layers of problematic situations. The first category, adding layers of problematic traffic situations to each other, was characterized by the informants' creation of a problematic situation as a whole. The different layers were described in the subcategories of layout of streets and zebra crossings, weather conditions, vehicles and crowding of pedestrians. The second category, actions used to meet different layers of problematic traffic situations, was characterized by avoiding problematic situations, using traffic lights as reminders and security precautions, following the flow at the zebra crossing and being cautious pedestrians. In conclusion, as community-dwelling people with dementia commonly are pedestrians, it is important that health care professionals and caregivers take their experiences and management of problematic traffic situations into account when providing support.
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| 5. |
- Ekström, Anna, et al.
(författare)
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Digital communication support and Alzheimer’s disease
- 2017
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Ingår i: Dementia. - : Sage Publications. - 1471-3012 .- 1741-2684. ; 16:6, s. 711-731
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Tidskriftsartikel (refereegranskat)abstract
- Communication is one of the areas where people with dementia and their caregivers experience most challenges. The purpose of this study is to contribute to the understanding of possibilities and pitfalls of using personalized communication applications installed on tablet computers to support communication for people with dementia and their conversational partners. The study is based on video recordings of a woman, 52 years old, with Alzheimer’s disease interacting with her husband in their home. The couple was recorded interacting with and without a tablet computer including a personalized communication application. The results from the present study reveal both significant possibilities and potential difficulties in introducing a digital communication device to people with dementia and their conversational partners. For the woman in the present study, the amount of interactive actions and the number of communicative actions seem to increase with the use of the communication application. The results also indicate that problems associated with dementia are foregrounded in interaction where the tablet computer is used.
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| 6. |
- Hanson, Elizabeth, et al.
(författare)
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The extended palliative phase of dementia : an integrative literature review
- 2019
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Ingår i: Dementia. - : Sage Publications. - 1471-3012 .- 1741-2684. ; 18:1, s. 108-134
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Forskningsöversikt (refereegranskat)abstract
- This article presents an integrative literature review of the experience of dementia care associated with the extended palliative phase of dementia. The aim was to highlight how dementia is defined in the literature and describe what is known about the symptomatology and management of advanced dementia regarding the needs and preferences of the person with dementia and their family carer/s. There was no consistent definition of advanced dementia. The extended palliative phase was generally synonymous with end-of-life care. Advanced care planning is purported to enable professionals to work together with people with dementia and their families. A lack of understanding of palliative care among frontline practitioners was related to a dearth of educational opportunities in advanced dementia care. There are few robust concepts and theories that embrace living the best life possible during the later stages of dementia. These findings informed our subsequent work around the concept, ‘Dementia Palliare’.
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| 7. |
- Hedman, Ragnhild, et al.
(författare)
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Agency and communion in people with Alzheimer’s disease, as described by themselves and their spousal carers
- 2019
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Ingår i: Dementia. - : Sage Publications. - 1471-3012 .- 1741-2684. ; 8:4
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Tidskriftsartikel (refereegranskat)abstract
- Agency (individuality) and communion (togetherness) are vital to a positive sense of self. People with Alzheimer’s disease are at risk of experiencing diminished agency and decreased communion. Their family members’, especially their partner’s, view on their agency and communion is also likely to influence their sense of agency, communion, and self. In the present study, individual interviews with 10 people with Alzheimer’s disease and their spousal carers were qualitatively analysed to describe how in each couple the two spouses viewed the agency and communion of the person with Alzheimer’s disease from an individual perspective. The findings show that the carers generally described the agency of the person with Alzheimer’s disease as slightly weaker compared with the persons with Alzheimer’s disease themselves. The carers also appeared to have poor knowledge of what supported and threatened the sense of communion of the person with Alzheimer’s disease.
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| 8. |
- Hellström, Ingrid, et al.
(författare)
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The “not yet” horizon : Understandings of the future amongst couples living with dementia.
- 2016
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Ingår i: Dementia. - : SAGE Publications. - 1471-3012 .- 1741-2684. ; 15:6, s. 1562-1585
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Tidskriftsartikel (refereegranskat)abstract
- The way in which persons with dementia and their spouses regard the future could influence how they experience the disease itself. This study aims to explore how the future is understood by couples living with dementia. The analysis reveals different ways in which couples understand the future. The findings show that persons with dementia describe the here and now in ways that take the gloomy future they dread as a point of reference, and as a result of this, they operate in what we term the not yet horizon. But while they take for granted that there is a horizon that they have not yet reached, their spouses always seem to focus on the horizons that they have already crossed. The article discusses the findings in relation to ideas such as critical periods, existential coordinates and possible selves, and problematizes the implicit assumptions about the future that dementia researchers tend to operate from.
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| 9. |
- Hydén, Lars-Christer, 1954-, et al.
(författare)
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Couples with dementia : Positioning the ‘we’
- 2015
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Ingår i: Dementia. - : Sage Publications. - 1471-3012 .- 1741-2684. ; 14:6, s. 716-733
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this article is to investigate how spouses in couples with dementia position themselves in relation to each other by analysing their use of pronouns, especially the we. The study uses joint interviews with 11 couples. Based on a quantitative analysis of pronoun use, it is argued that the pronoun we is used by all the spouses; however, it is used less frequently by the spouses with dementia in comparison with healthy spouses. A qualitative analysis of the use of the pronoun we shows that the spouses position, experience and consider themselves as a couple and that they position and experience themselves as individuals in relation to the couple. One of the challenges for couples with dementia is to be able to retain a we in face of the progression of the dementia disease. By positioning themselves in various ways, the spouses establish and negotiate quite a complex and emotionally charged web of relationships.
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| 10. |
- Hydén, Lars-Christer, et al.
(författare)
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So they are not alive?
- 2019
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Ingår i: Dementia. - : SAGE PUBLICATIONS LTD. - 1471-3012 .- 1741-2684. ; 18:7-8, s. 2662-2678
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Tidskriftsartikel (refereegranskat)abstract
- In some conversations involving persons with Alzheimers disease, the participants may have to deal with the difficulty that they do not share a common ground in terms of not only who is alive or dead, but even more, who could possibly be alive. It is as if the participants face a reality disjunction. There are very few empirical studies of this difficulty in conversations involving persons with Alzheimers disease or other kinds of dementia diagnoses. Often studies of confabulation have a focus on the behavior and experience of the healthy participants, but rarely on the interaction and the collaborative contributions made by the person with dementia. In the present article, we discuss various strategies used by all participants in an everyday conversation. The material consists of an hour long everyday conversation between a woman with Alzheimers disease and two healthy participants (relatives). This conversation is analyzed by looking at the organization of the interaction with an emphasis on how the participants deal with instances of reality disjunctions. The result from the analysis demonstrates that both the healthy participants as well as the person with dementia together skillfully avoid the face threats posed by reality disjunctive contributions by not pursuing argumentative lines that in the end might jeopardize both the collaborative and the personal relations.
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