| 1. |
- Carstensen, Gunilla, 1964-, et al.
(author)
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Before evening falls : Perspectives of a good old age and healthy ageing among oldest-old Swedish men
- 2019
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In: Archives of gerontology and geriatrics (Print). - : ELSEVIER IRELAND LTD. - 0167-4943 .- 1872-6976. ; 82, s. 35-44
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Journal article (peer-reviewed)abstract
- The late life experiences of men in the oldest-old age group have been under-researched, and their perspectives on ageing successfully neglected. This study explored the perspectives of oldest-old Swedish men on what a 'good old age' and ageing successfully meant to them. A purposive sample of 17 men, aged 85-90 years, was drawn from the Uppsala Longitudinal Study of Adult Men. An interview guide explored participants' perspectives on their ageing experiences and how they viewed ageing successfully. Participants were interviewed twice, with 1-2 weeks between interviews, and both interviews were recorded and transcribed. Content analysis identified four themes: i) Adaptation, concerning the ability to adapt to growing old with increasing limitations; ii) Sustaining Independence, related to financial resources and good health as the foundation for independence; iii) Belongingness, representing close relationships, established friendships, and the significance of the spouse; and iv) Perspectives of Time, also a common thread in all themes, in which past life experiences create an existential link between the past, the present and the future, establishing continuity of the self and enhancing life satisfaction. The participants presented themselves as active agents involved in maintaining meaning and achieving life satisfaction; a process related to the ability to manage changes in life. Our findings have resonance with models of healthy or successful ageing, but also diverge in important ways, since such models do not consider the significance of an individual's life history for their present well-being, and primarily conceptualise health as an outcome, rather than as a resource.
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| 2. |
- Alderman, J. McKee, et al.
(author)
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Neuroendocrine inhibition of glucose production and resistance to cancer in dwarf mice
- 2009
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In: Experimental Gerontology. - : Elsevier BV. - 0531-5565 .- 1873-6815. ; 44:1-2, s. 26-33
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Journal article (peer-reviewed)abstract
- Pit1 null (Snell dwarf) and Proph1 null (Ames dwarf) mutant mice lack GH, PRL and TSH. Snell and Ames dwarf mice also exhibit reduced IGF-I, resistance to cancer and a longer lifespan than control mice. Endogenous glucose production during fasting is reduced in Snell dwarf mice compared to fasting control mice. In view of cancer cell dependence on glucose for energy, low endogenous glucose production may provide Snell dwarf mice with resistance to cancer. We investigated whether endogenous glucose production is lower in Snell dwarf mice during feeding. Inhibition of endogenous glucose production by glucose injection was enhanced in 12 to 14 month-old female Snell dwarf mice. Thus, we hypothesize that lower endogenous glucose production during feeding and fasting reduces cancer cell glucose utilization providing Snell dwarf mice with resistance to cancer. The elevation of circulating adiponectin, a hormone produced by adipose tissue, may contribute to the suppression of endogenous glucose production in 12 to 14 month-old Snell dwarf mice. We compared the incidence of cancer at time of death between old Snell dwarf and control mice. Only 18% of old Snell dwarf mice had malignant lesions at the time of death compared to 82% of control mice. The median ages at death for old Snell dwarf and control mice were 33 and 26 months, respectively. By contrast, previous studies showed a high incidence of cancer in old Ames dwarf mice at the time of death. Hence, resistance to cancer in old Snell dwarf mice may be mediated by neuroendocrine factors that reduce glucose utilization besides elevated adiponectin, reduced IGF-I and a lack of GH, PRL and TSH, seen in both Snell and Ames dwarf mice. Proteomics analysis of pituitary secretions from Snell dwarf mice confirmed the absence of GH and PRL, the secretion of ACTH and elevated secretion of Chromogranin B and Secretogranin II. Radioimmune assays confirmed that circulating Chromogranin B and Secretogranin II were elevated in 12 to 14 month-old Snell dwarf mice. In summary, our results in Snell dwarf mice suggest that the pituitary gland and adipose tissue are part of a neuroendocrine loop that lowers the risk of cancer during aging by reducing the availability of glucose.
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| 3. |
- Andersson, Stefan, et al.
(author)
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Valued and received forms of support among Swedish working carers of older people : a descriptive study with focus on ICT-mediated support
- 2019
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In: Technology and Disability. - : IOS Press. - 1055-4181 .- 1878-643X. ; 31:4, s. 189-202
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Journal article (peer-reviewed)abstract
- BACKGROUND: Working family carers are an important resource for the care of older people but can experience negativepressures without support.OBJECTIVE: This study examined the perceived value of forms of support and the level of receipt of valued forms of supportamong Swedish working carers, with a focus on information and communication technology (ICT)-mediated support.METHODS: A convenience sample (N = 129) of working carers caring for an older (> 65 years) relative completed a webbasedquestionnaire that addressed: caring characteristics; work-care conflict; and valued and received forms of support.RESULTS: Overall non-ICT forms of support were the most highly valued, while receipt of valued support was low: on averageonly 16.9% of participants who valued ICT-mediated forms of support received such support, while the figure was only slightlyhigher (23.4%) for non-ICT forms of support. Higher levels of work-care conflict were associated with higher perceived value ofsupport for 13 out of fourteen forms of support.CONCLUSIONS: The findings suggest that ICT-mediated and non-ICT forms of support should be regarded as complementary,while the low level of receipt of valued forms of support could indicate high levels of unmet need in working carers. Implicationsfor further research and policy on working carers are considered.
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| 4. |
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| 5. |
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| 6. |
- Barnes, S, et al.
(author)
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Does the design of extra care housing meet the needs of the residents? : a focus group study
- 2012
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In: Ageing & Society. - Cambridge : Cambridge University Press. - 0144-686X .- 1469-1779. ; 32:7, s. 1193-1214
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Journal article (peer-reviewed)abstract
- The study objective was to explore the views of residents and relatives concerning the physical design of extra-care housing. Five focus groups were conducted with residents in four extra-care schemes in England. One focus group was carried out with relatives of residents from a fifth scheme. Schemes were purposively sampled to represent size, type, and resident tenure. Data were analysed thematically using NVivo 8. Two over-arching themes emerged from the data: how the building supports the lifestyle and how the building design affects usability. Provision of activities and access to amenities were more restrictive for residents with disabilities. Independent living was compromised by building elements that did not take account of reduced physical ability. Other barriers to independence included poor kitchen design and problems doing laundry. Movement around the schemes was difficult and standards of space and storage provision were inadequate. The buildings were too hot, too brightly lit and poorly ventilated. Accessible external areas enabled residents to connect with the outside world. The study concluded that, while the design of extra-care housing meets the needs of residents who are relatively fit and healthy, those with physical frailties and/or cognitive impairment can find the building restrictive resulting in marginalisation. Design across the dependency spectrum is key in meeting the needs of residents. Inclusive, flexible design is required to benefit residents who are ageing in situ and have varying care needs.
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| 7. |
- Bellardini, Helena, et al.
(author)
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The effect of gender on strength training in older people : a Swedish population study
- 2012
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In: Psychology and Health. - : Routledge. - 0887-0446 .- 1476-8321. ; 27:s1, s. 155-156
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Journal article (peer-reviewed)abstract
- Background: Physical exercise contributes to healthy ageing, and strength training has beenshown to improve independence in older people.Method: Six hundred older people wererandomly selected from the Swedish population, and sent a self-completion questionnaire(57% response rate, n¼343) examining exercise history, current strength training, andperceived benefits and barriers to strength training.Results: Gender was associated with aperceived positive effect of strength training on quality of life (Women 42% vs. Men 27%).The most commonly reported benefits of strength training were better mobility (71%), energy(70%), and muscle strength (69%), with most benefits endorsed more commonly by womenthan men. The most commonly reported barriers to strength training were believing otherforms of exercise more suitable (49%) and cost (20%; Women 31% vs. Men 13%).Discussion:To better promote healthy ageing, interventions should be embedded in an understanding ofthe effect of gender on exercise behaviour.
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| 8. |
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| 9. |
- Bień, Barbara, et al.
(author)
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Disabled older people’s use of health and social care services and their unmet care needs in six European countries
- 2013
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In: European Journal of Public Health. - : Oxford University Press. - 1101-1262 .- 1464-360X. ; 23:6, s. 1032-1038
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Journal article (peer-reviewed)abstract
- Background: The national health and social care systems in Europe remain poorly integrated with regard to the care needs of older persons. The present study examined the range of health and social care services used by older people and their unmet care needs, across six European countries. Methods: Family carers of older people were recruited in six countries via a standard protocol. Those providing care for disabled older people (n = 2629) provided data on the older person’s service use over a 6-month period, and their current unmet care needs. An inventory of 21 services common to all six countries was developed. Analyses considered the relationship between older people’s service use and unmet care needs across countries. Results: Older people in Greece, Italy and Poland used mostly health-oriented services, used fewer services overall and also demonstrated a higher level of unmet care needs when compared with the other countries. Older people in the United Kingdom, Germany and Sweden used a more balanced profile of socio-medical services. A negative relationship was found between the number of different services used and the number of different areas of unmet care needs across countries. Conclusions: Unmet care needs in older people are particularly high in European countries where social service use is low, and where there is a lack of balance in the use of health and social care services. An expansion of social care services in these countries might be the most effective strategy for reducing unmet needs in disabled older people.
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| 14. |
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| 15. |
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| 16. |
- Dahlberg, Lena, 1970-, et al.
(author)
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A social exclusion perspective on loneliness in older adults in the Nordic countries
- 2022
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In: European Journal of Ageing. - : Springer Science and Business Media LLC. - 1613-9372 .- 1613-9380. ; 19:2, s. 175-188
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Journal article (peer-reviewed)abstract
- Several factors associated with loneliness are also considered indicators of social exclusion. While loneliness has been proposed as an outcome of social exclusion, there is limited empirical evidence of a link. This study examines the associations between social exclusion indicators and loneliness in older adults (60+ years) in four Nordic countries. Data from four waves of the European Social Survey were pooled, providing a total of 7755 respondents (Denmark n = 1647; Finland n = 2501, Norway n = 1540; Sweden n = 2067). Measures of loneliness, demographic characteristics, health, and eight indicators of social exclusion were selected from the survey for analysis. Country-specific and total sample hierarchical logistic regression models of loneliness were developed. Significant model improvement occurred for all models after social exclusion indicators were added to models containing only demographic and health variables. Country models explained between 15.1 (Finland) and 21.5% (Sweden) of the variance in loneliness. Lower frequency of social contacts and living alone compared to in a two-person household was associated with a higher probability of loneliness in all countries, while other indicators were associated with loneliness in specific countries: lower neighbourhood safety (Sweden and Denmark); income concern (Sweden and Finland); and no emotional support (Denmark, Finland, and Sweden). A robust relationship was apparent between indicators of social exclusion and loneliness with the direction of associations being highly consistent across countries, even if their strength and statistical significance varied. Social exclusion has considerable potential for understanding and addressing risk factors for loneliness.
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| 17. |
- Dahlberg, Lena, 1970-, et al.
(author)
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A systematic review of longitudinal risk factors for loneliness in older adults
- 2021
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In: Aging & Mental Health. - : Informa UK Limited. - 1360-7863 .- 1364-6915. ; 26:2, s. 225-249
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Journal article (peer-reviewed)abstract
- OBJECTIVES: To effectively reduce loneliness in older adults, interventions should be based on firm evidence regarding risk factors for loneliness in that population. This systematic review aimed to identify, appraise and synthesise longitudinal studies of risk factors for loneliness in older adults.METHODS: Searches were performed in June 2018 in PsycINFO, Scopus, Sociology Collection and Web of Science. Inclusion criteria were: population of older adults (M = 60+ years at outcome); longitudinal design; study conducted in an OECD country; article published in English in a peer-review journal. Article relevance and quality assessments were made by at least two independent reviewers.RESULTS: The search found 967 unique articles, of which 34 met relevance and quality criteria. The Netherlands and the United States together contributed 19 articles; 17 analysed national samples while 7 studies provided the data for 19 articles. One of two validated scales was used to measure loneliness in 24 articles, although 10 used a single item. A total of 120 unique risk factors for loneliness were examined. Risk factors with relatively consistent associations with loneliness were: not being married/partnered and partner loss; a limited social network; a low level of social activity; poor self-perceived health; and depression/depressed mood and an increase in depression.CONCLUSION: Despite the range of factors examined in the reviewed articles, strong evidence for a longitudinal association with loneliness was found for relatively few, while there were surprising omissions from the factors investigated. Future research should explore longitudinal risk factors for emotional and social loneliness.
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| 18. |
- Dahlberg, Lena, 1970-, et al.
(author)
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Correlates of social and emotional loneliness in older people : evidence from an English community study
- 2014
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In: Aging & Mental Health. - : Taylor & Francis. - 1360-7863 .- 1364-6915. ; 18:4, s. 504-514
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Journal article (peer-reviewed)abstract
- Objectives: Loneliness is an important influence on quality of life in old age, and has been conceptualised as consisting of two dimensions, social and emotional. This paper describes analyses that sought to produce models of social and emotional loneliness in older people, using demographic, psychological and health, and social variables.Method: Older people (aged 65+, N=1255) from the Barnsley metropolitan area of the United Kingdom were recruited randomly from within a stratified sampling frame, and received a questionnaire-based interview (response rate: 68.1%). The questionnaire contained items and scales on demographic, psychological and health and social characteristics, and a validated measure of loneliness that assesses both social and emotional loneliness.Results: Of the respondents, 7.7% were found to be severely or very severely lonely, while another 38.3% were moderately lonely. Social and Emotional Loneliness shared 19.36% variance. Being male, being widowed, low well-being, low self-esteem, low income comfort, low contact with family, low contact with friends, low Activity, low Perceived Community Integration, and receipt of community care were significant predictors of Social Loneliness (R=.50, R2=.25, F(18, 979)=18.17, p<.001). Being widowed, low well-being, low self-esteem, high activity restriction, low income comfort, and non-receipt of informal care were significant predictors of Emotional Loneliness (R=.55, R2=.30, F(18, 973)=23.00, p<.001).Conclusion: This study provides further empirical support for the conceptual separation of emotional and social loneliness. Consequently, policy on loneliness in older people should be directed to developing a range of divergent intervention strategies if both emotional and social loneliness are to be reduced.
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| 19. |
- Dahlberg, Lena, 1970-, et al.
(author)
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Ensamhet bland äldre personer i Norden
- 2020
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Reports (other academic/artistic)abstract
- Rapporten presenterar översikter av tidigare forskning och analyser av känslan av ensamhet bland äldre personer. Överlag finns det kunskap om ensamhetens konsekvenser för ohälsa, men det behövs ytterligare forskning där starkare slutsatser kan dras om sambandens riktning, och ett tydligare fokus på ensamhet i gruppen äldre personer. En systematisk översikt visar att det finns god kunskap om en del faktorer som ökar risken för ensamhet, men mer forskning behövs om andra potentiella riskfaktorer. Analyserna visar en relativt låg och stabil förekomst av ensamhet bland äldre personer i Norden, samt att ohälsa och olika indikatorer för social exkludering (t.ex. bristande sociala relationer, otillräcklig inkomst, samt otrygghet i närområdet) har samband med ensamhet. Slutligen konstateras att forskningen om nordiska interventioner för att minska ensamhet bland äldre personer är begränsad.
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| 20. |
- Dahlberg, Lena, 1970-, et al.
(author)
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Living on the edge : Social exclusion and the receipt of informal care in older people
- 2016
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In: Journal of Aging Research. - : Hindawi Limited. - 2090-2204 .- 2090-2212. ; , s. 1-10
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Journal article (peer-reviewed)abstract
- Older people have been identified as being at risk of social exclusion. However, despite the fact that care is commonly required in later life and the majority of that care provided by informal carers, a connection between social exclusion and informal care-receipt has rarely been considered. The aim of this study was to examine how informal care-receipt is related to social exclusion.A face-to-face questionnaire survey on social exclusion and informal care-receipt was carried out among older people (n=1255) living in Barnsley, United Kingdom. Multivariable analyses examined the association between social exclusion and categories of informal care-receipt: care receiver; assurance receiver; non-receiver with no need; non-receiver with need.Compared to being a non-receiver with no need participants were more likely to be a care receiver or assurance receiver if they had higher levels of social exclusion. The highest level of social exclusion, however, was found in non-receivers with need. Despite a lack of informal care and support, formal practical support and personal care was also low in this latter group. Findings are discussed in relation to the conceptualisation of care-receipt and how contact with medical services could be an opportunity for identification and appropriate referral of non-receivers with need.
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| 21. |
- Dahlberg, Lena, 1970-, et al.
(author)
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Predictors of loneliness among older women and men in Sweden : A national longitudinal study
- 2014
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Conference paper (other academic/artistic)abstract
- Objectives: To examine the extent to which older women and men (70+) report feelings of loneliness with a focus on: a) changes in reported loneliness as people age, and b) which factors predict loneliness.Methods: Data from the 2004 and 2011 waves of SWEOLD, a longitudinal national survey study, was used. The prediction of loneliness in 2011 by data collected in 2004 was examined in three logistic regression models for the total sample (n=587), for women and for men.Results: Older people moved in and out of frequent loneliness over time, but there was a general increase in loneliness as they aged. Recent widowhood and depression increment were associated with loneliness in both women and men. Loneliness, widowhood, depression and mobility problems measured in 2004 predicted loneliness uniquely in women in 2011; whereas low level of education and social contact reduction predicted loneliness uniquely in men.Discussion: Loneliness is not always a stable condition, demonstrating the importance of longitudinal research. Gender differences in incidence and predictors make it important to look at women and men separately both when researching loneliness and when targeting interventions to prevent or reduce loneliness in older people.
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| 22. |
- Dahlberg, Lena, 1970-, et al.
(author)
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Predictors of loneliness among older women and men in Sweden : A national longitudinal study
- 2015
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In: Aging & Mental Health. - : Routledge. - 1360-7863 .- 1364-6915. ; 19:5, s. 409-417
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Journal article (peer-reviewed)abstract
- Objectives: Longitudinal research on loneliness in old age has rarely considered loneliness separately for men and women, despite gender differences in life experiences. The objective of this study was to examine the extent to which older women and men (70+) report feelings of loneliness with a focus on: (a) changes in reported loneliness as people age, and (b) which factors predict loneliness.Method: Data from the 2004 and 2011 waves of SWEOLD, a longitudinal national survey, was used (n = 587). The prediction of loneliness in 2011 by variables measured in 2004 and 2004–2011 variable change scores was examined in three logistic regression models: total sample, women and men. Variables in the models included: gender, age, education, mobility problems, depression, widowhood and social contacts.Results: Older people moved into and out of frequent loneliness over time, although there was a general increase in loneliness with age. Loneliness at baseline, depression increment and recent widowhood were significant predictors of loneliness in all three multivariable models. Widowhood, depression, mobility problems and mobility reduction predicted loneliness uniquely in the model for women; while low level of social contacts and social contact reduction predicted loneliness uniquely in the model for men.Conclusion: This study challenges the notion that feelings of loneliness in old age are stable. It also identifies important gender differences in prevalence and predictors of loneliness. Knowledge about such differences is crucial for the development of effective policy and interventions to combat loneliness in later life.
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| 23. |
- Dahlberg, Lena, 1970-, et al.
(author)
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Psychological, health and social predictors of emotional and social loneliness in older people
- 2013
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In: Proceedings of the 20th IAGG World Congress of Gerontology and Geriatrics, Seoul, Korea.
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Conference paper (peer-reviewed)abstract
- Background: Loneliness in old age has been shown to have negative outcomes such as mortality, physical and mental health problems, and reduced activity levels. To reduce loneliness in older people, factors associated with loneliness and open to intervention must be identified.Methods: Older people (aged 65+, N=1255) from the United Kingdom received a questionnaire-based interview (response rate: 66.0%). The questionnaire covered items on demographic, psychological, health and social characteristics. It also contained the de Jong-Gierveld Loneliness Scale (de Jong-Gierveld & Kamphuis, 1985), measuring Emotional and Social Loneliness.Findings: Eight percent of the respondents were found to be severely or very severely lonely, while another 38% were moderately lonely. Being female, widowed, low well-being, low self-esteem, high activity restriction, and high concern about personal finances were significant predictors of Emotional Loneliness (F(17, 976)=25.59, R2=.31, p<.001). Being female, widowed, low well-being, low self-esteem, high concern about personal finances, low contact with family, low contact with friends, low engagement, and low perceived community integration were significant predictors of Social Loneliness (F(17, 982)=19.63, R2=.25, p<.001).Discussion: This study provides empirical evidence for conceptual separation of emotional and social loneliness. Consequently, different targets for intervention are required in order to reduce emotional and social loneliness respectively, although psychological intervention has the potential to reduce both. Background: Loneliness in old age has been shown to have negative outcomes such as mortality, physical and mental health problems, and reduced activity levels. To reduce loneliness in older people, factors associated with loneliness and open to intervention must be identified.Methods: Older people (aged 65+, N=1255) from the United Kingdom received a questionnaire-based interview (response rate: 66.0%). The questionnaire covered items on demographic, psychological, health and social characteristics. It also contained the de Jong-Gierveld Loneliness Scale (de Jong-Gierveld & Kamphuis, 1985), measuring Emotional and Social Loneliness.Findings: Eight percent of the respondents were found to be severely or very severely lonely, while another 38% were moderately lonely. Being female, widowed, low well-being, low self-esteem, high activity restriction, and high concern about personal finances were significant predictors of Emotional Loneliness (F(17, 976)=25.59, R2=.31, p<.001). Being female, widowed, low well-being, low self-esteem, high concern about personal finances, low contact with family, low contact with friends, low engagement, and low perceived community integration were significant predictors of Social Loneliness (F(17, 982)=19.63, R2=.25, p<.001).Discussion: This study provides empirical evidence for conceptual separation of emotional and social loneliness. Consequently, different targets for intervention are required in order to reduce emotional and social loneliness respectively, although psychological intervention has the potential to reduce both.
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| 24. |
- Dahlberg, Lena, 1970-, et al.
(author)
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Social exclusion and well-being among older adults in rural and urban areas
- 2018
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In: Archives of gerontology and geriatrics (Print). - : Elsevier BV. - 0167-4943 .- 1872-6976. ; 79, s. 176-184
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Journal article (peer-reviewed)abstract
- Background: Social exclusion (SE) is a process that limits participation in society across life domains, and is associated with poor quality of life. Neighbourhood exclusion has been identified as particularly important for older adults. This paper examines the association between SE and well-being in older adults from urban and rural areas, focusing on neighbourhood exclusion. Methods: Using a cross-sectional survey design with a stratified sampling frame, participants (aged 65+) from rural (n = 628) and urban (n = 627) areas of Barnsley, United Kingdom, completed a questionnaire containing indicators of five SE domains: civic activity, material resources, social relationships, services and neighbourhood. Sequential multiple regression models were developed for 1) total sample; 2) rural areas; and 3) urban areas, with well-being regressed on SE indicators after controlling for self-reported health. Results: SE indicators explained 13.4% of the variance in well-being in the total sample (of which neighbourhood exclusion explained 1.2%); corresponding figures for the rural model were 13.8% (3.8%) and for the urban model 18.0% (1.7%); the addition of neighbourhood exclusion significantly improved all three models. Five SE indicators were significant in the rural model, compared with seven in the urban model, with four common to both. Discussion: Neighbourhood exclusion explained more variance in well-being in rural than urban areas, whereas exclusion from services explained more variance in urban than rural areas. Area characteristics and the role of neighbourhood should be considered in policy initiatives to reduce SE and promote well-being.
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| 25. |
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| 26. |
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| 27. |
- Dahlberg, Lena, 1970-, et al.
(author)
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Trends and gender associations in social exclusion in older adults in Sweden over two decades
- 2020
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In: Archives of gerontology and geriatrics (Print). - : Elsevier BV. - 0167-4943 .- 1872-6976. ; 89
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Journal article (peer-reviewed)abstract
- Background: Social exclusion in older adults is associated with lower well-being and poorer health. To date there has been little research on whether the level of social exclusion in older adults changes over time, and its association with gender.Aim: To examine trends and gender associations in social exclusion indicators in older adults for the years 1992, 2002 and 2011.Methods: Three waves of data from the Swedish Panel Study of Living Conditions of the Oldest Old (SWEOLD), a national survey of adults aged 77 years or older, were analysed: 1992 (n = 537), 2002 (n = 621), and 2011 (n = 904). Summative scales were created for four domains of social exclusion: material resources, social relations and leisure activities, civic participation, and services. Associations between gender and social exclusion within waves were examined as were trends in social exclusion across years.Results: The analyses of trends found significant reductions in exclusion in the domains of material resources and services. Higher levels of exclusion from material resources and civic participation were found in women than men. Within domains, significant trends and gender associations in exclusion were found on several indicators, with indicators showing opposing trends.Conclusion: Although levels of social exclusion have reduced in certain domains during the years examined, our results reflect the persistence of social exclusion in the population of older adults. This underlines the continuing importance of a well-developed welfare and social security system to ensure the social inclusion of vulnerable groups such as older adults.
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| 28. |
- Dahlberg, Lena, 1970-, et al.
(author)
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Trends in social exclusion among older women and men in Sweden
- 2018
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Conference paper (peer-reviewed)abstract
- Background: Social exclusion is a framework for understanding the complexity of disadvantage across various domains of life such as material resources, social relations, civic activities and services. Reviews have identified a lack of gender perspective in social exclusion research. This paper will introduce the framework of social exclusion, and examine trends over time in the levels of social exclusion across different life domains for older women and men in Sweden.Methods: Data on indicators of social exclusion were analysed from respondents aged 76+ years who participated in the 1992, 2002 and 2011 waves of the nationally representative Swedish Panel Study of Living Conditions of the Oldest Old (SWEOLD).Results: There was evidence of a gender different in exclusion from material resources and civic activities, from which women were more often excluded than men. Regardless of gender there were improvements in access to material resources, such as owning a house/apartment. Social contacts (visiting or being visited by friends) decreased over time, while engagement in cultural activities and going to restaurants increased.Conclusions: Trends in social exclusion in older adults over the last 20 years are dependent on the domain considered. Over a range of indicators, older women were more vulnerable to exclusion than men, which needs to be taken into account in policy to combat exclusion.
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| 29. |
- Di Rosa, Mirko, et al.
(author)
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A typology of caregiving situations and service use in family carers of older people in six European countries : The EUROFAMCARE study
- 2011
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In: GeroPsych. - Bern : Hogrefe Publishing. - 1662-9647 .- 1662-971X. ; 24:1, s. 5-18
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Journal article (peer-reviewed)abstract
- This paper presents the EUROFAMCARE study findings, examining a typology of care situations for family carers of older people, and the interplay of carers with social and health services. Despite the complexity of family caregiving situations across Europe, our analyses determined the existence of seven “caregiving situations,” varying on a range of critical indicators. Our study also describes the availability and use of different support services for carers and care receivers, and carers’ preferences for the characteristics of support services. Our findings have relevance for policy initiatives in Europe, where limited resources need to be more equitably distributed and services should be targeted to caregiving situations reflecting the greatest need, and organized to reflect the preferences of family carers.
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| 30. |
- Ekman, Björn, et al.
(author)
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Cost analysis of informal care : estimates from a national cross-sectional survey in Sweden
- 2021
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In: BMC Health Services Research. - : BioMed Central. - 1472-6963. ; 21:1
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Journal article (peer-reviewed)abstract
- BackgroundOver the past decades, informal care has increased in most OECD-countries. Informal care is costly to caregivers and to society in the form of lost income and direct costs of providing care. Existing evidence suggests that providing informal care affects caregivers' overall health. However, estimates of the social costs of informal care based on national data on individuals are currently scarce.ObjectiveThis study contributes to the existing evidence on the costs of informal care by estimating the direct and indirect costs to caregivers using a purposive national household survey from Sweden.MethodsAdopting a bottom-up, prevalence approach, the direct and indirect costs are estimated using the survey data and the value of working time and leisure time from existing sources.ResultsThe results suggest that around 15% of the adult population of Sweden provide informal care and that such care costs around SEK 152 billion per year (around 3% of GDP; USD 16,3 billion; EUR 14,5 billion), or SEK 128000 per caregiver. Around 55% of costs are in the form of income loss to caregivers. The largest cost items are reduced work hours and direct costs of providing informal care. Replacing informal caregivers with professional care providers would be costly at around SEK 193,6 billion per year.ConclusionsFindings indicate that, even in a country with a relatively generous welfare system, significant resources are allocated toward providing informal care. The costing analysis suggests that effective support initiatives to ease the burden of informal caregivers may be cost-effective.
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| 31. |
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| 32. |
- Elf, Marie, 1962, et al.
(author)
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A systematic review of the psychometric properties of instruments for assessing the quality of the physical environment in healthcare
- 2017
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In: Journal of Advanced Nursing. - : Wiley. - 0309-2402 .- 1365-2648. ; 73:12, s. 2796-2816
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Journal article (peer-reviewed)abstract
- Aim. To identify instruments measuring the quality of the physical healthcare environment, describe their psychometric properties. Background. The physical healthcare environment is regarded as a quality factor for health care. To facilitate evidence-based design there is a need for valid and usable instruments that can evaluate the design of the healthcare environment. Data sources. A systematic literature search in Medline, CINAHL, Psychinfo, Avery index and reference lists of eligible papers (1990-2016). Review method. Consensus based standards for selection of health measurement instruments guidelines were used to evaluate psychometric data reported. Results. Twenty-three instruments were included. Most of the instruments are intended for healthcare environments related to the care of older people. Many of the instruments were old, lacked strong, contemporary theoretical foundations, varied in the extent to which they had been used in empirical studies and in the degree to which their validity and reliability had been evaluated. Conclusions. Although we found many instruments for measuring the quality of the physical healthcare environment, none met all of our criteria for robustness. Of the instruments, The Multiphasic environmental assessment procedure, The Professional environment assessment protocol and The therapeutic environment screening have been used and tested most frequently. The Perceived hospital quality indicators are user centred and combine aspects of the physical and social environment. The Sheffield care environment assessment matrix has potential as it is comprehensive developed using a theoretical framework that has the needs of older people at the centre. However, further psychometric and user-evaluation of the instrument is required.
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| 33. |
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| 34. |
- Elf, Marie, et al.
(author)
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Development of an instrument measuring the quality of residential care facilities for older people
- 2016
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In: The 23rd Nordic Congress of Gerontology, 19-22 June 2016, in Tampere, Finland.
-
Conference paper (peer-reviewed)abstract
- Aims. To validate the Swedish version of the Sheffield Care Environment Assessment Matrix (S-SCEAM). The instrument’s items measure environmental elements important for supporting the needs of older people, and conceptualized within eight domains.Methods. Item relevance was assessed by a group of experts and measured using content validity index (CVI). Test-retest and inter-rater reliability tests were performed. The domain structure was assessed by the inter-rater agreement of a second group of experts, and measured using Fleiss kappa.Results. All items attained a CVI above 0.78, the suggested criteria for excellent content validity. Test-retest reliability showed high stability (96% and 95% for two independent raters respectively), and inter-rater reliability demonstrated high levels of agreement (95% and 94% on two separate rating occasions). Kappa values were very good for test-retest (κ = 0.903 and 0.869) and inter-rater reliability (κ = 0.851 and 0.832). Domain structure was good, Fleiss’ kappa was 0.63 (range 0.45 to 0.75). Conclusion. The S-SCEAM of 210 items and eight domains showed good content validity and construct validity. The instrument is suggested for use in measuring of the quality of the physical environment in residential care facilities for older persons.
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| 35. |
- Fagerberg, Johan, 1992-, et al.
(author)
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The unreflective practitioner : A pilot study on functional stupidity and social work
- 2020
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In: European Journal of Social Work. - : Informa UK Limited. - 1369-1457 .- 1468-2664. ; , s. 1-13
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Journal article (peer-reviewed)abstract
- This study’s aim was to operationalise and test a model of functional stupidity, a form of unreflective compliance, and explore its appropriateness for understanding how social workers comply with and motivate performing morally or professionally problematic tasks. A sample of 120 social workers from six municipalities in Sweden self-completed a questionnaire containing 20 Likert-type items denoting 10 ‘stupidity rationales’ within three reflective modes of compliance, and a measure of work satisfaction. Most functional stupidity items performed well, with social workers endorsing several rationales for being unreflective at work. Associations among items supported most elements of the model. Both being older and having more work experience were associated with endorsing the fun rationale, while being older was also associated with endorsing rationales within the despair mode. Endorsing cynical mode rationales was associated with lower work satisfaction, while endorsing the fun rationale was associated with higher work satisfaction. This is the first study to operationalise and empirically test the concept of functional stupidity using a quantitative approach. The results indicate that the model has value for understanding how social workers’ reflexivity about professional hardships can facilitate periods of unreflective performance that, for good and bad, helps them through the working day.
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| 36. |
- Falk Johansson, Marcus, et al.
(author)
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A comparison of spouse and non-spouse carers of people with dementia : a descriptive analysis of Swedish national survey data
- 2021
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In: BMC Geriatrics. - : BioMed Central. - 1471-2318. ; 21:1
-
Journal article (peer-reviewed)abstract
- BackgroundBeing an informal carer of a person with dementia (PwD) can have a negative effect on the carer's health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care.MethodsThe study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people sampled, 11,168 (37.7%) responded, of whom 330 (2.95%) were informal carers of a PwD.ResultsIn comparison to non-spouse carers, spouse carers provided more care more frequently, did so with less support from family or the local authority, while more frequently experiencing negative impacts on their social life and psychological and physical health. Spouse carers also received more carer support and more frequently experienced a closeness in their relationship with the care-recipient.ConclusionsSpouse carers of PwD differed from non-spouse carers on virtually all aspects of their care situation. Policy and practice must be more sensitive to how the carer-care-recipient relationship shapes the experience of care, so that support is based on an understanding of the individual carer's actual needs and preferences rather than on preconceptions drawn from a generalised support model.
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| 37. |
- Falk Johansson, Marcus, et al.
(author)
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Negative Impact and Positive Value of Caregiving in Spouse Carers of Persons With Dementia in Sweden
- 2021
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In: Family Caregiving and Persons with Dementia. - : Oxford University Press (OUP). ; , s. 154-
-
Conference paper (peer-reviewed)abstract
- As welfare providers struggle to meet the care needs of persons with dementia (PwDs), most of their needs are being met by a family carers, most often a spouse. The situation for spouse carers is unique, e.g., with grief, loneliness and loss of intimacy combining with stress and poor health. Research is needed to develop adequate support for spouse carers based on evidence of what influences negative and positive outcomes of care. The present study investigated psychosocial correlates of spouse carers’ (i) negative impact and (ii) positive value of caring. Data from a cross-sectional survey of 165 spouse carers community-resident in Sweden was analysed in two hierarchical regression models to predict negative impact and positive value of caring. Results found that negative impact and positive value were explained by different variables, significant predictors for negative impact included carer stress, health, and emotional loneliness, and change in intimacy with the care-recipient, while positive value was predicted by mutuality, change in closeness to the care-recipient and quality of support. Negative impact and positive value shared variance of only 17.2%. Thus, negative impact and positive value represent different aspects of the carer situation. Consequently, support needs to target several aspects in carers’ life, aiming to; facilitate for spouses to manage PwD’s impairment, increase emotional support while also strengthening the relationship between carer and PwD to reduce negative impact while increasing positive value.
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| 38. |
- Falk Johansson, Marcus, et al.
(author)
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Negative Impact and Positive Value of Caregiving in Spouse Carers of Persons with Dementia in Sweden
- 2022
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In: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 19:3
-
Journal article (peer-reviewed)abstract
- (1) Background: Spouse carers of persons with dementia (PwD) are particularly vulnerable to negative outcomes of care, yet research rarely focuses on their caregiving situation. This study explores factors associated with the positive value and negative impact of caregiving in spouse car-ers of PwD in Sweden. (2) Methods: The study was a cross-sectional questionnaire-based survey, with a convenience sample of spouse carers of PwD (n = 163). The questionnaire addressed: care situation, carer stress, health and social well-being, relationship quality and quality of support, and contained measures of positive value and negative impact of caregiving. (3) Results: Hierarchical regression models explained 63.4% variance in positive value and 63.2% variance in negative impact of caregiving. Three variables were significant in the model of positive value: mutuality, change in emotional closeness following dementia and quality of support. Six variables were significant in the model of negative impact: years in relationship, years as carer, behavioural stress, self-rated health, emotional loneliness and change in physical intimacy following dementia. (4) Conclusions: Support to spouse carers of PwD should address the carer–care-recipient relationship quality, although different aspects of the relationship should be addressed if both the positive value of caregiving is to be enhanced and the negative impact reduced.
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| 39. |
- Falk Johansson, Marcus, et al.
(author)
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Spouse’s supported and unsupported care of persons with dementia : Home care and the informal caregiver’s perspective
- 2021
-
Conference paper (peer-reviewed)abstract
- Introduction. Caring for a person with dementia (PWD) can negatively affect the quality of life of informal carers, and research suggests spouse carers, often being older, are particularly vulnerable and requiring of support. Yet the formal support offered is rarely tailored to meet the needs of spouse carers of PWDs. The aim of the present study was to compare spouse carers to other carers of PWDs on a range of factors, as a foundation for a better understanding of their support needs. Material and methods. Cross-sectional survey. In late 2018 a random stratified sample was taken of the Swedish population aged 18 and older. Of 30,009 people contacted, 11,168 completed and returned a questionnaire or completed a web-based version, a response rate of 37.3%. The questionnaire contained questions on whether the respondent was an informal carer for another person, the extent of care provided, contact with and support received from formal services, and impacts of care.Results. Of the respondents, 378 (3.38%) were carers of PWDs, of whom 107 (28.3%) were spouse carers. Spouse carers compared to other carers of PWD provide care more intenselyand are more informed on their right to support from local authorities. While more often being offered formal support in their carer role, they are less supported in providing care and report a higher negative impact (for all p<.05). Conclusions. Formal support is offered to spouse carers in their carer role, but might not be tailored to their specific needs of support.
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| 40. |
- Gething, Lindsay, et al.
(author)
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Validation of the Reactions to Ageing Questionnaire: assessing similarities across several countries.
- 2004
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In: Journal of gerontological nursing. - 0098-9134. ; 30:9, s. 47-54
-
Journal article (peer-reviewed)abstract
- With the increasing numbers of older adults, factors impacting the effectiveness of provision of health care must be addressed. The literature suggests attitudes, particularly those of nurses, impact health service provision. This article reports the outcome of a multicountry validation study of the Reactions to Ageing Questionnaire (RAQ). The RAQ measures attitudes toward personal aging and has been used in Australia for 5 years. This study was designed to determine whether the psychometric characteristics and norms of the RAQ identified for Australian nurses also apply to nursing samples in Sweden and the United Kingdom. Findings indicate the internal structure of the RAQ extends outside Australia, with similar factors appearing across the three countries. Ranges and standard deviations indicate the instrument is able to discriminate between respondents within each country. Cronbach's alpha coefficients were consistent across countries and fell in the moderately high range. The findings indicate the RAQ has many potential applications in attitude assessment and in providing direction for training designed to address attitudinal factors that may impact the effectiveness of nursing practice for older adults.
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| 41. |
- Gilhooly, M. L., et al.
(author)
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Vibrating underpants, smell sensors and hospital continence services : tools and technologies for improving the lives of people with incontinence
- 2012
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In: The Gerontologist. - : Oxford University Press. - 0016-9013 .- 1758-5341. ; 52:s1, s. 185-185
-
Journal article (peer-reviewed)abstract
- Social isolation, loss of self esteem and depression are often a consequence of incontinence. The overall aim of this interdisciplinary project was to reduce the impact of continence difficulties and, thus, assist older people in maintaining a positive identity and good quality of life. The TACT3 project was comprised of three research work packages:Assistive technology development:Vibrating underpants: A washable fabric underwear wetness sensor and alert mechanism has been developed to alert continence pad users of leakage. In addition, a colour change odour indicating formula has been developed to indicate the presence of the odour of urine at a just imperceptible level.Challenging environmental barriers to continence: Two sets of stakeholders were involved, older people with continence difficulties and toilet providers. Focus groups, workshops, interviews and photographic diaries were conducted to identify key issues. A web based map locating toilets in London was developed which is called the Great British Toilet Map.Improving continence interventions and services: 140 patients and their carers were interviewed twice within a 12 month interval from a specialist continence clinic for older people and generic continence clinic. Twenty health and social care managers and 200 practitioners were also be interviewed. Care outcomes are being analysed from each clinic and a cost benefit analysis will be carried out.Key findings from this three year interdisciplinary project are highlighted. Prototypes of the vibrating underpants and the odour sensor will be on display. This research was funded by the UK New Dynamics of Ageing Programme.
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| 42. |
- Kassebaum, Nicholas J., et al.
(author)
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Global, regional, and national disability-adjusted life-years (DALYs) for 315 diseases and injuries and healthy life expectancy (HALE), 1990-2015 : a systematic analysis for the Global Burden of Disease Study 2015
- 2016
-
In: The Lancet. - 0140-6736 .- 1474-547X. ; 388:10053, s. 1603-1658
-
Journal article (peer-reviewed)abstract
- Background Healthy life expectancy (HALE) and disability-adjusted life-years (DALYs) provide summary measures of health across geographies and time that can inform assessments of epidemiological patterns and health system performance, help to prioritise investments in research and development, and monitor progress toward the Sustainable Development Goals (SDGs). We aimed to provide updated HALE and DALYs for geographies worldwide and evaluate how disease burden changes with development. Methods We used results from the Global Burden of Diseases, Injuries, and Risk Factors Study 2015 (GBD 2015) for all-cause mortality, cause-specific mortality, and non-fatal disease burden to derive HALE and DALYs by sex for 195 countries and territories from 1990 to 2015. We calculated DALYs by summing years of life lost (YLLs) and years of life lived with disability (YLDs) for each geography, age group, sex, and year. We estimated HALE using the Sullivan method, which draws from age-specific death rates and YLDs per capita. We then assessed how observed levels of DALYs and HALE differed from expected trends calculated with the Socio-demographic Index (SDI), a composite indicator constructed from measures of income per capita, average years of schooling, and total fertility rate. Findings Total global DALYs remained largely unchanged from 1990 to 2015, with decreases in communicable, neonatal, maternal, and nutritional (Group 1) disease DALYs off set by increased DALYs due to non-communicable diseases (NCDs). Much of this epidemiological transition was caused by changes in population growth and ageing, but it was accelerated by widespread improvements in SDI that also correlated strongly with the increasing importance of NCDs. Both total DALYs and age-standardised DALY rates due to most Group 1 causes significantly decreased by 2015, and although total burden climbed for the majority of NCDs, age-standardised DALY rates due to NCDs declined. Nonetheless, age-standardised DALY rates due to several high-burden NCDs (including osteoarthritis, drug use disorders, depression, diabetes, congenital birth defects, and skin, oral, and sense organ diseases) either increased or remained unchanged, leading to increases in their relative ranking in many geographies. From 2005 to 2015, HALE at birth increased by an average of 2.9 years (95% uncertainty interval 2.9-3.0) for men and 3.5 years (3.4-3.7) for women, while HALE at age 65 years improved by 0.85 years (0.78-0.92) and 1.2 years (1.1-1.3), respectively. Rising SDI was associated with consistently higher HALE and a somewhat smaller proportion of life spent with functional health loss; however, rising SDI was related to increases in total disability. Many countries and territories in central America and eastern sub-Saharan Africa had increasingly lower rates of disease burden than expected given their SDI. At the same time, a subset of geographies recorded a growing gap between observed and expected levels of DALYs, a trend driven mainly by rising burden due to war, interpersonal violence, and various NCDs. Interpretation Health is improving globally, but this means more populations are spending more time with functional health loss, an absolute expansion of morbidity. The proportion of life spent in ill health decreases somewhat with increasing SDI, a relative compression of morbidity, which supports continued efforts to elevate personal income, improve education, and limit fertility. Our analysis of DALYs and HALE and their relationship to SDI represents a robust framework on which to benchmark geography-specific health performance and SDG progress. Country-specific drivers of disease burden, particularly for causes with higher-than-expected DALYs, should inform financial and research investments, prevention efforts, health policies, and health system improvement initiatives for all countries along the development continuum.
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| 43. |
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| 44. |
- Kovacs, Gabor G., et al.
(author)
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Aging-related tau astrogliopathy (ARTAG) : harmonized evaluation strategy
- 2016
-
In: Acta Neuropathologica. - : Springer Science and Business Media LLC. - 0001-6322 .- 1432-0533. ; 131:1, s. 87-102
-
Journal article (peer-reviewed)abstract
- Pathological accumulation of abnormally phosphorylated tau protein in astrocytes is a frequent, but poorly characterized feature of the aging brain. Its etiology is uncertain, but its presence is sufficiently ubiquitous to merit further characterization and classification, which may stimulate clinicopathological studies and research into its pathobiology. This paper aims to harmonize evaluation and nomenclature of aging-related tau astrogliopathy (ARTAG), a term that refers to a morphological spectrum of astroglial pathology detected by tau immunohistochemistry, especially with phosphorylation-dependent and 4R isoform-specific antibodies. ARTAG occurs mainly, but not exclusively, in individuals over 60 years of age. Tau-immunoreactive astrocytes in ARTAG include thorn-shaped astrocytes at the glia limitans and in white matter, as well as solitary or clustered astrocytes with perinuclear cytoplasmic tau immunoreactivity that extends into the astroglial processes as fine fibrillar or granular immunopositivity, typically in gray matter. Various forms of ARTAG may coexist in the same brain and might reflect different pathogenic processes. Based on morphology and anatomical distribution, ARTAG can be distinguished from primary tauopathies, but may be concurrent with primary tauopathies or other disorders. We recommend four steps for evaluation of ARTAG: (1) identification of five types based on the location of either morphologies of tau astrogliopathy: subpial, subependymal, perivascular, white matter, gray matter; (2) documentation of the regional involvement: medial temporal lobe, lobar (frontal, parietal, occipital, lateral temporal), subcortical, brainstem; (3) documentation of the severity of tau astrogliopathy; and (4) description of subregional involvement. Some types of ARTAG may underlie neurological symptoms; however, the clinical significance of ARTAG is currently uncertain and awaits further studies. The goal of this proposal is to raise awareness of astroglial tau pathology in the aged brain, facilitating communication among neuropathologists and researchers, and informing interpretation of clinical biomarkers and imaging studies that focus on tau-related indicators.
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| 45. |
- Lewis, Alan, et al.
(author)
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EVOLVE : a tool for evaluating the design of older people’s housing
- 2010
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In: Housing, Care and Support. - : Pier Professional. - 1460-8790. ; 13:3, s. 36-41
-
Journal article (peer-reviewed)abstract
- EVOLVE is a tool for evaluating the design of housing for older people. It is used to assess how well a building contributes to the physical support and personal well-being of older people. Developed from research into extra care housing, it can be used for a variety of building types, including sheltered housing and individual private houses. The tool can be used by architects, housing providers, commissioners, researchers and individual tenants or home owners. EVOLVE can be used as a briefing document or an aid to design. It can provide a rational basis to the selection of proposals in a competitive procurement process. The EVOLVE tool can also be used to evaluate existing housing stock, including schemes where remodelling is under consideration.
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| 46. |
- Lüdecke, Daniel, et al.
(author)
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For better or worse : Factors predicting outcomes of family care of older people over a one-year period. A six-country European study
- 2018
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In: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 13:4
-
Journal article (peer-reviewed)abstract
- OBJECTIVES: Demographic change has led to an increase of older people in need of long-term care in nearly all European countries. Informal carers primarily provide the care and support needed by dependent people. The supply and willingness of individuals to act as carers are critical to sustain informal care resources as part of the home health care provision. This paper describes a longitudinal study of informal care in six European countries and reports analyses that determine those factors predicting the outcomes of family care over a one-year period.METHODS: Analyses are based on data from the EUROFAMCARE project, a longitudinal survey study of family carers of older people with baseline data collection in 2004 and follow-up data collection a year later in six European countries (Germany, Greece, Italy, Poland, Sweden, and the United Kingdom), N = 3,348. Descriptive statistics of the sample characteristics are reported. Binary logistic random-intercept regressions were computed, predicting the outcome of change of the care dyad's status at follow-up.RESULTS: Where care is provided by a more distant family member or by a friend or neighbour, the care-recipient is significantly more likely to be cared for by someone else (OR 1.62) or to be in residential care (OR 3.37) after one year. The same holds true if the care-recipient has memory problems with a dementia diagnosis (OR 1.79/OR 1.84). Higher dependency (OR 1.22) and behavioural problems (OR 1.76) in the care-recipient also lead to a change of care dyad status. Country of residence explained a relatively small amount of variance (8%) in whether a care-recipient was cared for by someone else after one year, but explained a substantial amount of variance (52%) in whether a care-recipient was in residential care. Particularly in Sweden, care-recipients are much more likely to be cared for by another family or professional carer or to be in residential care, whereas in Greece the status of the care dyad is much less likely to change.DISCUSSION: The majority of family carers continued to provide care to their respective older relatives over a one-year period, despite often high levels of functional, cognitive and behavioural problems in the care-recipient. Those family carers could benefit most from appropriate support. The carer/care-recipient relationship plays an important role in whether or not a family care dyad remains intact over a one-year period. The support of health and social care services should be particularly targeted toward those care dyads where there is no partner or spouse acting as carer, or no extended family network that might absorb the caring role when required. Distant relatives, friends or acquaintances who are acting as carers might need substantial intervention if their caregiving role is to be maintained.
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| 47. |
- Marmstål Hammar, Lena, 1979-, et al.
(author)
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Being ‘alone’ striving for belonging and adaption in a new reality : The experiences of spouse carers of persons with dementia
- 2021
-
In: Dementia. - : Sage Publications. - 1471-3012 .- 1741-2684. ; 20:1, s. 273-290
-
Journal article (peer-reviewed)abstract
- Background and aimSpouse carers of a person with dementia report feeling lonely and trapped in their role, lacking support and having no time to take care of their own health. In Sweden, the support available for family carers is not specialised to meet the needs of spouse carers of people with dementia. The aim of the study described in this paper was to explore spouse carers’ experiences of caring for a partner with dementia, their everyday life as a couple and their support needs.MethodsNine spouse carers of a partner with dementia living at home were recruited through a memory clinic and a dementia organisation. Semi-structured interviews were conducted with the participants, focusing on their experiences of providing care, their support needs in relation to their caring situation, their personal well-being and their marital relationship. The interviews were transcribed and underwent qualitative content analysis.ResultsThe analysis resulted in one overall theme Being ‘alone’ striving for belonging and adaption in a new reality, synthesized from four sub-themes: (1) Being in an unknown country; (2) Longing for a place for me and us; (3) Being a carer first and a person second; and (4) Being alone in a relationship.ConclusionsThe training of care professionals regarding the unique needs of spouse carers of people with dementia needs improvement, with education, in particular, focusing on their need to be considered as a person separate from being a carer and on the significance of the couple’s relationship for their mutual well-being.
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| 48. |
- Marmstål Hammar, Lena, 1979-, et al.
(author)
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Exhausted and trapped in isolation. Caring for a spouse with dementia during the Covid-19 pandemic
- 2021
-
In: Family Caregiving (HS Poster). - : Oxford University Press (OUP). ; , s. 800-801
-
Conference paper (peer-reviewed)abstract
- Even before the Covid-19 pandemic, spouse carers of persons with dementia (PwDs) found their care responsibilities overwhelming and had little time to focus on their own lives. To minimize the risk of being infected with Covid-19, older persons are recommended to self-isolate in their homes, while formal support such as respite care and day care centers are withdrawn. This study involved semi-structured interviews with 24 spouse carers of community-living PwDs, with the aim of describing their situation during the pandemic. The interviews were analyzed with qualitative content analysis. Results revealed that they commonly declined help because of the perceived risk of their spouse being infected with Covid-19 and thus also possibly causing their death. They described feelings of being trapped in their situation, as they experienced having no choice than take all responsibility for the care of their partner themselves, with cost of being unable to take necessary breaks. This was described as making an already strained situation almost unbearable, which led to conflicts with their partner. However, the spouses also described positive aspects due to strategic changes in health and social care provision to prevent the spread of the virus, such as greater staff continuity in home care services, and patient transportation service. These made the PwD less stressed and influenced their everyday life positively. It could be concluded that the extent burden during the Covid-19 pandemic calls for extensive development of tailored support to better tackle the rapid changes that can occur in a society.
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| 49. |
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