| 1. |
- Andrén, Signe, et al.
(author)
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Former Family Carers’ Subjective Experiences of Burden
- 2002
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In: Dementia. - : SAGE Publications. - 1741-2684 .- 1471-3012. ; 1:2, s. 241-254
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Journal article (peer-reviewed)abstract
- The general knowledge of family caregivers’ experience of burden during the continuing care of a close relative with dementia is incomplete. Several types of care settings are available today, and, for carers, modalities of burden probably differ between these settings. The aim of this study was to explore whether burden differed significantly between former family caregivers (FFCs) to people with dementia who were in group living care (GLC), a small home-like unit for six to eight people, compared with people with dementia in nursing homes (NH). Twenty-six FFCs to people with dementia living in GLC and 17 FFCs to people with dementia living in NHs participated in the study. Validated scales were used to assess symptoms of dementia and provide a picture of caregiver burden, including factors such as strain, emotional involvement and environmental burden. We found that FFCs to people with dementia in NH care had a significantly higher degree of total burden, strain and environmental burden compared with FFCs to people with dementia in GLC. A significant percentage of FFCs also reported receiving insufficient information about dementia and support services. It is suggested that by adjusting physical and psychosocial settings to the cognitive state of the resident, as was done in the GLC approach, may explain the feelings of reduced burden experienced in these group of FFCs.
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| 2. |
- Aspö, Malin, et al.
(author)
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Transitions : Experiences of younger persons recently diagnosed with Alzheimer-type dementia
- 2023
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In: Dementia. - : Sage Publications. - 1471-3012 .- 1741-2684. ; 22:3, s. 610-627
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Journal article (peer-reviewed)abstract
- Receiving a diagnosis of dementia before the age of 65 has a huge impact on everyday life. Previously, the disease trajectory has mainly been described from the perspective of older persons. However, young persons with dementia are confronted with specific challenges, influencing the type of life-changing events, or 'critical points' that they may experience. The aim of this study was therefore to describe experiences of persons recently being diagnosed with young-onset dementia. In total, 14 participants with dementia due to Alzheimer's disease (10 woman/4 men) with an average age of 59 were included in the study. Interviews were conducted within 2 months after receiving the diagnosis and analyzed using qualitative content analysis with an inductive approach, resulting in three categories: (1) A life changing moment, (2) An ongoing process, and (3) Remaining in control. The findings show that receiving such a diagnosis was experienced by participants as a life changing moment, followed by them seeking to come to terms with the diagnosis and reflecting on its meaning, in which various strategies were adopted to remain in control. The current study highlights three critical points considering the diagnosis of young-onset dementia that warrant special attention and provides insight into factors related to delay in healthy transitioning after receiving the diagnosis, as well as factors that may facilitate successful transitions.
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| 3. |
- Berglund, Mia, 1964-, et al.
(author)
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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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In: Dementia. - : Sage Publications. - 1471-3012 .- 1741-2684. ; 18:7-8, s. 2695-2709
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Journal article (peer-reviewed)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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| 4. |
- Bielsten, Therese, et al.
(author)
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A review of couple-centred interventions in dementia : Exploring the what and why - Part A.
- 2017
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In: Dementia. - : SAGE Publications. - 1471-3012 .- 1741-2684. ; 18:7-8, s. 2436-2449
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Research review (peer-reviewed)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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| 5. |
- Bielsten, Therese, et al.
(author)
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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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In: Dementia. - : SAGE PUBLICATIONS LTD. - 1471-3012 .- 1741-2684. ; 18:7-8, s. 2450-2473
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Research review (peer-reviewed)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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| 6. |
- Brorsson, Anna, et al.
(author)
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Accessibility in public space as perceived by people with Alzheimer´s disease
- 2011
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In: Dementia. - : SAGE Publications. - 1471-3012 .- 1741-2684. ; :aug 11
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Journal article (peer-reviewed)abstract
- Most people with dementia remain living at home as long as possible after being diagnosed, and hence their lives also include activities in the public space. The aim of this study was to illuminate experiences of accessibility in public space in people with Alzheimer’s disease. A qualitative grounded theory approach with repeated in-depth interviews was used. The core category, accessibility as a constantly changing experience, was characterized by changes in the relationship between informants and public space. Changes in the relationship took place in activities and use of place and related to familiarity and comfort, individual motives and interests, and planning and protecting. Other changes occurred in places and problematic situations related to everyday technologies, crowded places with high tempo and noise, and change of landmarks. These changes reduced feelings of accessibility and increased difficulties in carrying out activities in public space. These findings may be helpful when providing support, and supporting community living.
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| 7. |
- Brorsson, Anna, et al.
(author)
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Being a pedestrian with dementia : A qualitative study using photo documentation and focus group interviews
- 2016
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In: Dementia. - : Sage Publications. - 1471-3012 .- 1741-2684. ; 15:5, s. 1124-1140
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Journal article (peer-reviewed)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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| 8. |
- Brorsson, Anna, et al.
(author)
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How accessible are grocery shops for people with dementia? : A qualitative study using photo documentation and focus group interviews
- 2020
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In: Dementia. - : Sage Publications. - 1471-3012 .- 1741-2684. ; 19:6, s. 1872-1888
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Journal article (peer-reviewed)abstract
- Background People with dementia who live in ordinary housing need to perform activities outside the home such as visiting friends, talking walks and doing grocery shopping. This article identifies and examines characteristics that may influence accessibility in the space of a grocery shop as perceived by people with dementia. Methods This is a qualitative study with a grounded theory approach. The data collection was done with two different methods. It started with photo documentation and continued with focus group interviews in combination with photo elicitation. Data from both photo documentation and focus groups were analysed according to a grounded theory approach. Results The categories "illogical arrangement", "overload of products, information and people", "visual illusions" and "intrusive auditory stimuli" showed characteristics in the grocery shop that influenced how accessible and usable the informants experienced a shop to be. Furthermore, personal capacities in relation to the specific characteristics of the grocery shop space had an influence on how accessible and usable the informants experienced the grocery shop to be. Capacities to find, stay focused and concentrated, meet stress, remember, interpret and discriminate sensory impressions through hearing and sight came to the fore as important. Conclusions Characteristics of both the shop and the person need to be taken into account when supporting people with dementia in grocery shopping.
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| 9. |
- Brossard Saxell, Tessa, et al.
(author)
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Facilitators for person-centred care of inpatients with dementia: A meta-synthesis of registered nurses experiences
- 2021
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In: Dementia. - : SAGE Publications. - 1741-2684 .- 1471-3012. ; 20:1, s. 188-212
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Journal article (peer-reviewed)abstract
- Person-centred care is widely advocated when caring for people with dementia. When a person with dementia is admitted for hospital care, hospital wards are obliged to not only address the cause for admission but also provide dementia-specific care during the hospital stay. Research has shown that the delivery of person-centred care to people with dementia is often inadequate or absent in the hospital setting. Moreover, whilst registered nurses often wish to improve the in-hospital care of patients with dementia, there is evidence of experienced barriers. This study aimed to describe registered nurses’ experiences of facilitators for the delivery of person-centred care to inpatients with dementia. By way of systematic searches in the databases PubMed, CINAHL and PsycINFO, qualitative studies (n = 19) reporting registered nurses experience of caring for inpatients with dementia were identified. Relevant content was analysed using a method of thematic synthesis. Three main categories and nine subcategories were presented, internal facilitators (experience and knowledge; values and beliefs; professional identity; empathy), external facilitators (physical environment; organisational culture and structure) and facilitating actions (forming a holistic picture; establishing trust; adjusting routines and interventions). While facilitators did exist in the hospital setting, the findings indicate that care received by inpatients with dementia is dependent on individual registered nurses knowledge, personal aptitude and ability to compensate for structural flaws. In order to minimise arbitrary outcomes of care for patients with dementia, consistent organisational support in the form of educational interventions and allocation of resources is crucial.
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| 10. |
- Cahill, Suzanne
(author)
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Using technology in dementia care
- 2021
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In: Dementia. - : Sage Publications. - 1471-3012 .- 1741-2684. ; 20:8, s. 3055-3056
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Review (pop. science, debate, etc.)
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