liu.seSearch for publications in DiVA
Change search
Link to record
Permanent link

Direct link
BETA
Hellström, Ingrid
Alternative names
Publications (10 of 48) Show all publications
Bielsten, T. & Hellström, I. (2019). An extended review of couple-centred interventions in dementia: Exploring the what and why - Part B. Dementia, 18(7-8), 2450-2473
Open this publication in new window or tab >>An extended review of couple-centred interventions in dementia: Exploring the what and why - Part B
2019 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 18, no 7-8, p. 2450-2473Article, review/survey (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
SAGE PUBLICATIONS LTD, 2019
Keywords
caregiver; dementia; mild cognitive impairment; review; spouses
National Category
Geriatrics
Identifiers
urn:nbn:se:liu:diva-160999 (URN)10.1177/1471301217737653 (DOI)000485953300003 ()29105499 (PubMedID)
Available from: 2019-10-31 Created: 2019-10-31 Last updated: 2019-10-31
Odzakovic, E., Kullberg, A., Hellström, I., Andrew, C., Sarah, C., Kainde, M., . . . Richard, W. (2019). ‘It's our pleasure, we count cars here’: an exploration of the ‘neighbourhood-based connections’ for people living alone with dementia. Ageing & Society, 9, 1-26
Open this publication in new window or tab >>‘It's our pleasure, we count cars here’: an exploration of the ‘neighbourhood-based connections’ for people living alone with dementia
Show others...
2019 (English)In: Ageing & Society, ISSN 0144-686X, E-ISSN 1469-1779, Vol. 9, p. 1-26Article in journal (Refereed) Epub ahead of print
Abstract [en]

The extent of social isolation experienced by people living with dementia who reside in the community has been well acknowledged, yet little is known about how people living alone with dementia maintain neighbourhood-based connections. The purpose of this study is to examine the experiences of people with dementia who live alone, focusing upon how they establish social networks and relationships in a neighbourhood context, and how they are supported to maintain this social context within everyday life. Multiple data collection methods were used including, semi-structured interviews, walking interviews, guided home tours and social network mapping, which were conducted with 14 community-dwelling people living alone with dementia (11 women and three men) situated across the three international study sites in England, Scotland and Sweden. Data were analysed using thematic analysis. The analysis revealed four main themes: (a) making the effort to stay connected; (b) befriending by organisations and facilitated friendships; (c) the quiet neighbourhood atmosphere; and (d) changing social connections. The analysis suggests that people with dementia who live alone were active agents who took control to find and maintain relationships and social networks in the neighbourhood. Our findings indicate the need to raise awareness about this specific group in both policy and practice, and to find creative ways to help people connect through everyday activities and by spontaneous encounters in the neighbourhood.

Place, publisher, year, edition, pages
Cambridge University Press, 2019
Keywords
Dementia, living alone, neighbourhood, community, qualitative research, social networks, relationships, solitude
National Category
Public Health, Global Health, Social Medicine and Epidemiology Nursing Social Work
Identifiers
urn:nbn:se:liu:diva-160696 (URN)10.1017/s0144686x19001259 (DOI)
Available from: 2019-10-02 Created: 2019-10-02 Last updated: 2019-12-20Bibliographically approved
Roos, S., Liedberg, G., Hellström, I. & Wilhelmsson, S. (2019). Persistent symptoms in people with celiac disease despite gluten-free diet: A concern?. Gastroenterology Nursing, 42(6), 496-503
Open this publication in new window or tab >>Persistent symptoms in people with celiac disease despite gluten-free diet: A concern?
2019 (English)In: Gastroenterology Nursing, ISSN 1042-895X, E-ISSN 1538-9766, Vol. 42, no 6, p. 496-503Article in journal (Refereed) Published
Abstract [en]

Studies show that people with celiac disease have reduced well-being and have persistent symptoms, mainly related to the gastrointestinal tract. The aim of this study was to analyze how persons in a celiac disease member association report their symptoms, health, and life satisfaction. A questionnaire, with both open and closed questions, was distributed to all members (n = 726) of a celiac association in the southeast of Sweden. The response rate was 74.5%, of which 524 (72%) said they had received a celiac disease diagnosis and were thus included in the study. Almost half of the participants (40.7%-42.2%) stated that they had persistent celiac disease symptoms despite following a gluten-free diet. Diarrhea, abdominal pain, and congestion were persistent symptoms reported and could contribute to a lower health status compared with people without persistent symptoms. The life satisfaction scale (LiSat-9) showed differences in 5 of 9 variables between the groups. Living with celiac disease is far from easy when you have persistent symptoms. People with celiac disease require follow-up by healthcare services, and a new treatment needs to be developed because following the gluten-free diet alone does not seem to alleviate symptoms in everyone.

Place, publisher, year, edition, pages
Lippincott Williams & Wilkins, 2019
Keywords
Celiac disease, Comorbidity, Health status, Life satisfaction
National Category
Medical and Health Sciences Gastroenterology and Hepatology
Identifiers
urn:nbn:se:liu:diva-162435 (URN)10.1097/sga.0000000000000377 (DOI)000501331100005 ()31770352 (PubMedID)2-s2.0-85075672187 (Scopus ID)
Note

Funding agencies:  LIONS research fund

Available from: 2019-12-03 Created: 2019-12-03 Last updated: 2019-12-28Bibliographically approved
Lasrado, R., Bielsten, T., Hann, M., Davies, L., Schumm, J., Reilly, S., . . . Hellström, I. (2018). Designing and Implementing a Home-Based Couple Management Guide for Couples Where One Partner has Dementia (DemPower): Protocol for a Nonrandomized Feasibility Trial. JMIR Research Protocols, 7(8), Article ID e171.
Open this publication in new window or tab >>Designing and Implementing a Home-Based Couple Management Guide for Couples Where One Partner has Dementia (DemPower): Protocol for a Nonrandomized Feasibility Trial
Show others...
2018 (English)In: JMIR Research Protocols, ISSN 1929-0748, E-ISSN 1929-0748, Vol. 7, no 8, article id e171Article in journal (Refereed) Published
Abstract [en]

The increasing rate of dementia and high health and social care costs call for effective measures to improve public health and enhance the wellbeing of people living with dementia and their relational networks. Most postdiagnostic services focus on the condition and the person with dementia with limited attention to the caring spouse or partner. The key focus of the study is to develop a guide for couples where one partner has a diagnosis of dementia. This couple management guide is delivered in the form of an app, DemPower.

Place, publisher, year, edition, pages
JMIR Publications, 2018
Keywords
couple management guide; dementia; dementia intervention; dementia self-help
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:liu:diva-156007 (URN)10.2196/resprot.9087 (DOI)30097423 (PubMedID)
Available from: 2019-04-01 Created: 2019-04-01 Last updated: 2019-10-15
Harding, A. J. E., Morbey, H., Ahmed, F., Opdebeeck, C., Wang, Y.-Y., Williamson, P., . . . Reilly, S. (2018). Developing a core outcome set for people living with dementia at home in their neighbourhoods and communities: study protocol for use in the evaluation of non-pharmacological community-based health and social care interventions. Trials, 19, Article ID 247.
Open this publication in new window or tab >>Developing a core outcome set for people living with dementia at home in their neighbourhoods and communities: study protocol for use in the evaluation of non-pharmacological community-based health and social care interventions
Show others...
2018 (English)In: Trials, ISSN 1745-6215, E-ISSN 1745-6215, Vol. 19, article id 247Article in journal (Refereed) Published
Abstract [en]

Background: The key aim of the study is to establish an agreed standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people living at home with dementia. Methods/design: Drawing on the guidance and approaches of the Core Outcome Measures in Effectiveness Trials (COMET), this study uses a four-phase mixed-methods design: 1 Focus groups and interviews with key stakeholder groups (people living with dementia, care partners, relevant health and social care professionals, researchers and policymakers) and a review of the literature will be undertaken to build a long list of outcomes. 2 Two rounds of Delphi surveys will be used with key stakeholder groups. Statements for the Delphi surveys and participation processes will be developed and informed through substantial member involvement with people living with dementia and care partners. A consensus meeting will be convened with key participant groups to discuss the key findings and finalise the COS. 3 A systematic literature review will be undertaken to assess the properties of tools and instruments to assess components of the COS. Measurement properties, validity and reliability will be assessed using the Consensus-based Standards for the Selection of Health Measurement (COSMIN) and COMET guidance. 4 A stated preference survey will elicit the preferences of key stakeholders for the outcomes identified as important to measure in the COS. Discussion: To the best of our knowledge, this study is the first to use a modified Delphi process to involve people living with dementia as a participant group. Though the study is confined to collecting data in the United Kingdom, use of the COS by researchers will enhance the comparability of studies evaluating non-pharmacological and community-based interventions.

Place, publisher, year, edition, pages
BIOMED CENTRAL LTD, 2018
Keywords
Core outcome set; Dementia; Non-pharmacological interventions; Community-based programmes; Neighbourhood; Delphi method; Public involvement
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:liu:diva-147928 (URN)10.1186/s13063-018-2584-9 (DOI)000431359600001 ()29690920 (PubMedID)
Note

Funding Agencies|ESRC; NIHR

Available from: 2018-05-23 Created: 2018-05-23 Last updated: 2019-08-23
Odzakovic, E., Hellström, I., Ward, R. & Kullberg, A. (2018). 'Overjoyed that I can go outside': Using walking interviews to learn about the lived experience and meaning of neighbourhood for people living with dementia.. Dementia, Article ID 1471301218817453.
Open this publication in new window or tab >>'Overjoyed that I can go outside': Using walking interviews to learn about the lived experience and meaning of neighbourhood for people living with dementia.
2018 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, article id 1471301218817453Article in journal (Refereed) Epub ahead of print
Abstract [en]

This study explores the relationships between people living with dementia and their neighbourhood as they venture out from home on a regular and often routine basis. Here, we report findings from the Swedish field site of an international 5-year project: Neighbourhoods: our people, our places. The aims of this study were to investigate the lived experience of the neighbourhood for people with dementia and through this to better understand the meaning that neighbourhood held for the participants. In this study, we focus on the walking interviews which were conducted with 14 community-dwelling people with dementia (11 men and 3 women) and were analysed using an interpretative phenomenological method. Four themes were revealed from these interviews: life narratives embedded within neighbourhood; the support of selfhood and wellbeing through movement; the neighbourhood as an immediate social context; and restorative connections to nature. These themes were distilled into the 'essence' of what neighbourhood meant for the people we interviewed: A walkable area of subjective significance and social opportunity in which to move freely and feel rejuvenated. We have found that the neighbourhood for community-dwelling people with dementia holds a sense of attachment and offers the potential for freedom of movement. Our research indicates that a dementia diagnosis doesn't necessarily reduce this freedom of movement. The implications for practice and policy are considered: future research should explore and pay closer attention to the diverse living conditions of people living with dementia, and not least the particular challenges faced by people living alone with dementia.

Keywords
community-dwelling, dementia, interpretative phenomenology, lived experiences, neighbourhood, walking interviews
National Category
Geriatrics
Identifiers
urn:nbn:se:liu:diva-153897 (URN)10.1177/1471301218817453 (DOI)30541394 (PubMedID)
Available from: 2019-01-18 Created: 2019-01-18 Last updated: 2019-12-20
Hedman, R., Hellström, I., Ternestedt, B.-M., Hansebo, G. & Norberg, A. (2018). Sense of Self in Alzheimers Research Participants. Clinical Nursing Research, 27(2), 191-212
Open this publication in new window or tab >>Sense of Self in Alzheimers Research Participants
Show others...
2018 (English)In: Clinical Nursing Research, ISSN 1054-7738, E-ISSN 1552-3799, Vol. 27, no 2, p. 191-212Article in journal (Refereed) Published
Abstract [en]

The sense of self is vulnerable in people with Alzheimers disease (AD), and might be positively and negatively influenced by research participation. The purpose of this study was to describe how people with AD express their experience of being a research participant with respect to their sense of self. Interviews and support group conversations involving 13 people with mild and moderate AD were analyzed using qualitative content analysis. Three themes were constructed: contributing to an important cause, gaining from participating, and experiencing risks and drawbacks. Participants described contributing to research as being in line with their lifelong values and lifestyles. They expressed contentment and pride about being research participants, emphasized their positive relationships with the researchers, and described participation as a meaningful activity. When research procedures threatened their sense of self, they were able to reason about risks and decline participation.

Place, publisher, year, edition, pages
SAGE PUBLICATIONS INC, 2018
Keywords
Alzheimers disease; research participation; self; support group
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-145122 (URN)10.1177/1054773816672671 (DOI)000423586200005 ()29374986 (PubMedID)
Note

Funding Agencies|Oscar and Maria Ekman Foundation; Ersta Diakoni; Dementia Association-The National Association for the Rights of the Demented; Swedish Order of St. John; Erling-Persson Family Foundation

Available from: 2018-02-19 Created: 2018-02-19 Last updated: 2019-08-23
Österlind, J., Ternestedt, B.-M., Hansebo, G. & Hellström, I. (2017). Feeling lonely in an unfamiliar place: older peoples experiences of life close to death in a nursing home. International Journal of Older People Nursing, 12(1), Article ID e12129.
Open this publication in new window or tab >>Feeling lonely in an unfamiliar place: older peoples experiences of life close to death in a nursing home
2017 (English)In: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 12, no 1, article id e12129Article in journal (Refereed) Published
Abstract [en]

The aim of the study was to deepen the understanding of how older persons living in a nursing home experience life close to death.

Place, publisher, year, edition, pages
John Wiley & Sons, 2017
Keywords
end-of-life care; nursing home care; older people; palliative care; transition
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-145579 (URN)10.1111/opn.12129 (DOI)000405747300008 ()27624362 (PubMedID)
Available from: 2018-03-20 Created: 2018-03-20 Last updated: 2018-03-20
Hellström, I. & Hydén, L.-C. (Eds.). (2016). Att leva med demens (1ed.). Malmö: Gleerups Utbildning AB
Open this publication in new window or tab >>Att leva med demens
2016 (Swedish)Collection (editor) (Other academic)
Abstract [sv]

För att personer med demenssjukdom ska kunna leva ett fullgott liv behövs mer kunskap. I grunden handlar det om att förändra föreställningar och attityder till personer som lever med en demenssjukdom så att personerna själva, deras anhöriga och personal inom hälso- och sjukvården och politiker, kan se nya möjligheter i stället för enbart förluster. I den här boken presenteras kunskap och forskning som sätter personer med demenssjukdom i centrum. Boken utgår alltså inte i första hand från vården eller anhöriga, utan från dem som lever med sjukdomen. På så sätt skapas en tankeram som ger stöd vid både utvecklingsarbete och reflektion bland människor som på olika sätt arbetar med och för personer med demenssjukdom.

Cirka 110 000 och 170 000 svenskar har i dag en demenssjukdom. Om ett tiotal år är det betydligt fler: ökad livslängd och en större medvetenhet om demenssjukdomar gör att allt fler personer får en diagnos tidigt i förloppet. Som en konsekvens av detta kommer alltfler personer att leva med en demenssjukdom under lång tid, och ofta i hemmet. Detta innebär inte bara en utmaning för vård, omsorg och socialpolitik, utan väcker också frågor som berör såväl personer med demens, som anhöriga och andra i det sociala nätverket: Hur kan personer med demens leva och fungera i sitt hem tillsammans med eventuella familjemedlemmar? Hur kan de fungera som medborgare och delta i samhällslivet, ha makt över sitt eget vardagsliv och fatta egna beslut om sitt eget liv?

I boken medverkar forskare från Centrum för demensforskning (CEDER) vid Linköpings universitet. Den innehåller många pedagogiska exempel och riktar sig till utbildningar inom vård, omvårdnad, socialt arbete och omsorg.

Place, publisher, year, edition, pages
Malmö: Gleerups Utbildning AB, 2016. p. 240 Edition: 1
Keywords
Dementia, Cognition disorders, Demenssjuka, Demens, Hjärnsjukdomar
National Category
Social Sciences Interdisciplinary Gerontology, specialising in Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-123704 (URN)9789140691651 (ISBN)
Available from: 2016-01-08 Created: 2016-01-08 Last updated: 2018-01-10Bibliographically approved
Nilsson, E. & Hellström, I. (2016). Demens och identitet i relationer (1ed.). In: Ingrid Hellström, Lars-Christer Hydén (Ed.), Att leva med demens: (pp. 71-77). Malmö: Gleerups Utbildning AB
Open this publication in new window or tab >>Demens och identitet i relationer
2016 (Swedish)In: Att leva med demens / [ed] Ingrid Hellström, Lars-Christer Hydén, Malmö: Gleerups Utbildning AB, 2016, 1, p. 71-77Chapter in book (Other academic)
Place, publisher, year, edition, pages
Malmö: Gleerups Utbildning AB, 2016 Edition: 1
Keywords
Demenssjuka, Demens
National Category
Humanities Sociology (excluding Social Work, Social Psychology and Social Anthropology)
Identifiers
urn:nbn:se:liu:diva-126087 (URN)978-91-4069-165-1 (ISBN)
Available from: 2016-03-14 Created: 2016-03-14 Last updated: 2016-04-04Bibliographically approved
Organisations

Search in DiVA

Show all publications