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Objective: The study analysed how its participants positioned themselves and other people as actors in daily life, and what matters they portrayed as meaningful in seeking and receiving support in daily life. Background: Family care has traditionally played an important role in elder care in Finland. Current policy goals will further increase the importance of family care, yet research on how people with memory illnesses and their spouses perceive care arrangements is scarce. Method: The study drew from theory of relational agency and positioning theory. The data came from semi-structured, in-depth interviews (10) of home-dwelling people diagnosed with a memory illness and their spouses. The interviewees’ age varied from 62 to 88. The analysis focused on the participants’ self-descriptions and descriptions of their experiences and actions in relation to informal and formal care arrangements. Results: The participants with a memory illness positioned themselves together with their spouses as a couple, as satisfied service recipients, as active and knowledgeable service users, or even as consumers who critically evaluated social and health care services. People with memory illnesses are capable of expressing their self-reflexive agentic self and adopting different positions to that of a person with dementia. Conclusion: There is need to better acknowledge agency of people with memory illnesses and to develop different data collection and analysis methods that enable them to convey their views. publishedVersion

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As the population ages, the number of people with dementia increases. An emerging body of research is focusing on living with dementia and understanding the experience of caring and the care burden. There is much less research on the meaning of dementia from the perspective of an older couple’s spousal relationship and related intimacy. This qualitative study explores the meanings of emotional and physical intimacy and the changes brought by dementia in the couplehood of persons with dementia and their spousal carers. The data comprise semi-structured interviews with 35 persons. The interviews were analysed using inductive qualitative content analysis. Four themes describing the meanings of relational intimacy were identified: intimacy as a striving force, intimacy turning into worrisome behaviour, intimacy as physical and emotional dependency, and intimacy turning into one-sided caring for a partner. Dementia changes the intimate relationship in many ways, but shared affection and long-term partnership help maintain the spousal relationship. While dementia may bring about conflicts and behavioural challenges in an intimate relationship, the couple’s shared intimacy and a sense of responsibility for one another may serve as a resource and support the continuity of couplehood. publishedVersion

Muistisairautta sairastavien ikääntyneiden kotona asuminen onnistuu usein omaishoitajien avulla, mutta tukea tarvitaan myös sosiaali- ja terveyspalveluista. Aina kaikki eivät kuitenkaan saa riittävää apua ja tukea. Niin muistisairautta sairastavat ihmiset kuin omaishoitajatkin voivat kärsiä avun riittämättömyydestä. Tässä artikkelissa tutkimme, millaista tukea muistisairaat ja heidän puolisonsa kaipaavat ja millaisia kokemuksia heillä on avun riittämättömyydestä. Tutkimuksemme mukaan muistisairautta sairastavien ikääntyneiden ja omaishoitajien kohtaama avun riittämättömyys liittyy sekä palvelujärjestelmään ja erilaisiin tukimuotoihin että henkisen tuen tarpeisiin. Muistisairautta sairastavat ja heidän omaishoitajansa eivät niinkään kohtaa tilanteita, joissa he eivät saisi lainkaan tarvitsemaansa apua, mutta saatu apu ei aina vastaa tarpeita tai se on liian vähäistä. Omaishoitajat myös paikkaavat palvelujärjestelmän puutteita ottamalla vastuun puolisonsa hoivasta tilan-teissa, joissa julkiset palvelut ovat riittämättömiä tai niitä ei ole saatavilla. Kotona asumisen tueksi tarvittava apu on riittämätöntä useammin omaishoitajien kuin heidän muistisairautta sairastavien puolisoidensa kannalta. Usein tämä tarkoittaa sitä, että omaishoitajat kantavat vastuuta hoivasta oman jaksamisensa kustannuksella. peerReviewed

Background People with memory disorders often need care and help from family carers and health and social care providers. Due to the deterioration of cognitive capacity and language skills, they may be unable to convey their thoughts and care preferences to other people. As a result, their agency may become restricted. We investigated the descriptions provided by people with memory disorders and spousal carers of their influence on care in encounters with formal care providers. Methods Qualitative thematic analysis was used to identify, analyze, and report themes that describe encounters with professionals in different social or healthcare environments. In-depth interview data were gathered from 19 spouse carers and 15 persons with memory disorders. Findings Three themes out of four describe how people with memory disorders and their spouse carers influence formal care: Acquiescence, negotiating care decisions, and taking control. The fourth theme describes lack of influence. People with memory disorders and their spouse carers have ways to influence care, but spouse carers identified more ways of doing so. Both either accepted and followed the care guidelines by the formal carers or took control of the situation and made their own decisions. Spouse carers also sought to influence care decisions through negotiations with formal carers. When formal carers’ decisions were experienced as inconsistent or the rationale of their actions difficult to follow, the possibilities to influence care were limited. Conclusions People with memory disorders and their family carers are often in a disadvantaged position as they lack power over the health and social care decision-making during the illness, which is often guided by structural factors. To support the agency of people with memory disorders and to promote shared decision-making, clarification of the service structure and clearer communication between the different parties involved in care are required.

Aims: This study aimed to find out how place of death varied between countries with different health and social service systems. This was done by investigating typical groups (concerning age, sex and end-of-life trajectory) of older people dying in different places in Finland and Norway. Methods: The data were derived from national registers. All those who died in Finland or Norway at the age of ⩾70 years in 2011 were included. Place of death was analysed by age, sex, end-of-life trajectory and degree of urbanisation of the municipality of residence. Two-proportion z-tests were performed to test the differences between the countries. Multinomial logistic regression analyses were performed separately for both countries to find the factors associated with place of death. Results: The data consisted of 68,433 individuals. Deaths occurred most commonly in health centres in Finland and in nursing homes in Norway. Deaths in hospital were more common in Norway than they were in Finland. In both countries, deaths in hospital were more common among younger people and men. Deaths in nursing homes were commonest among frail older people, while most of those who had a terminal illness died in health centres in Finland and in nursing homes in Norway. Conclusions: Both Finland and Norway have a relatively low share of hospital deaths among older people. Both countries have developed alternatives to end-of-life care in hospital, allowing for spending the last days or weeks of life closer to home. In Finland, health centres play a key role in end-of-life care, while in Norway nursing homes serve this role. Aims: This study aimed to find out how place of death varied between countries with different health and social service systems. This was done by investigating typical groups (concerning age, sex and end-of-life trajectory) of older people dying in different places in Finland and Norway. Methods: The data were derived from national registers. All those who died in Finland or Norway at the age of ⩾70 years in 2011 were included. Place of death was analysed by age, sex, end-of-life trajectory and degree of urbanisation of the municipality of residence. Two-proportion z-tests were performed to test the differences between the countries. Multinomial logistic regression analyses were performed separately for both countries to find the factors associated with place of death. Results: The data consisted of 68,433 individuals. Deaths occurred most commonly in health centres in Finland and in nursing homes in Norway. Deaths in hospital were more common in Norway than they were in Finland. In both countries, deaths in hospital were more common among younger people and men. Deaths in nursing homes were commonest among frail older people, while most of those who had a terminal illness died in health centres in Finland and in nursing homes in Norway. Conclusions: Both Finland and Norway have a relatively low share of hospital deaths among older people. Both countries have developed alternatives to end-of-life care in hospital, allowing for spending the last days or weeks of life closer to home. In Finland, health centres play a key role in end-of-life care, while in Norway nursing homes serve this role.

Background: Unmet care needs are usually defined in terms of receiving sufficient help in instrumental activities and activities of daily living. Research on unmet needs is mostly based on quantitative data. Older persons’ and informal carers’ views and experiences have received less attention. Methods: In this paper, we rely on a definition of unmet needs which includes both unmet needs due to insufficient care and those situations where informal carers experience undue strain. Using theory-driven content analysis, we examine community-dwelling older adults’ and their informal carers’ experiences of unmet needs: what kind of unmet needs they have, why and in which ways these needs are left unmet and what would they want to do to improve the situation. The data consists of interviews gathered in Austria, Finland and Slovenia. Results: Results of the analysis reveal that unmet needs are largely psychosocial in nature. The predominating task-oriented care systems often do not consider these as care needs. Using methods of qualitative content analysis, we conclude that care users’ unmet psychosocial needs are related to lacking a personal relationship with care workers; means to maintain or develop social contacts and pursue activities and interests; and adequate home care services or respite care. Excessive responsibilities are put on informal carers as they top up and fill in the insufficient care. Conclusions: This study contributes to a broader understanding of unmet care needs: the relational aspects of care and the universal nature of psychosocial care needs should be addressed in care services. publishedVersion

Muistisairauksiin usein liittyvät kognitiiviset ja persoonallisuuden muutokset sekä itseilmaisun vaikeudet saattavat ilmetä käyttäytymisen muutoksina. Puoliso ja muut läheiset kohtaavat nämä muutokset ensimmäisinä. Laadullisessa tutkimuksessamme selvitimme, millaisissa tilanteissa muistisairauden aiheuttamia ongelmallisina ja kielteisinä koettuja käyttäytymisen muutoksia ilmaantuu, ja miten ne vaikuttavat parisuhteen vastavuoroisuuteen. Käyttäytymisen muutoksista käytetään termiä ’käytösoireet’. Aineiston analyysissä hyödynsimme sosiaalisen vaihdon teoriaa. Käyttäytymisen muutokset tulivat puheeksi vain niissä haastatteluissa, joissa muistisairautta sairastava puoliso oli aviomies. Vaikka puoliso-omaishoitajat osasivat odottaa puolison käyttäytymisen muuttuvan sairauden myötä, muutokset tulivat yllätyksenä. Käytösoireet liittyivät tilanteisiin, joissa puoliso-omaishoitaja neuvoi, ohjasi tai rajoitti muistisairaan puolisonsa arkirutiineissa toimimista, sekä tilanteissa, joissa muistisairautta sairastava joutui kohtaamaan sairautensa. Sosiaalisen vaihdon teorian mukainen vastavuoroisuus ei toteudu parisuhteessa, jossa toisella puolisoista on etenevään muistisairauteen liittyviä ongelmalliseksi koettuja käytösoireita. Puoliso-omaishoitaja joutuu taiteilemaan arjessa välttyäkseen konfliktitilanteilta, eikä muistisairas puoliso välttämättä tunnista näitä tilanteita. Usein pitkään parisuhteeseen liittyvät vahvat tunnesiteet saavat jatkamaan yhteistä elämää. Behavioural changes caused by dementia and the reciprocity of a couplehood Usually, the spouse is the first to face the cognitive and personality changes associated with their partner´s dementia, which may manifest as behavioural changes. In this qualitative study, we examined in which situations disruptive behavioural symptoms caused by dementia appear and how they affect the reciprocity of spouses. The theory of social exchange was used to interpret the data. Disruptive symptoms were mentioned only in interviews of couples in which the spouse with dementia was the husband. Although the spousal carers expected that their partner’s behaviour might change with the illness, the behavioural symptoms came as a surprise. Behavioural symptoms appeared in situations where the partner with dementia tried to control the activities of their spousal carer, when the spousal carer had to advise and guide the partner´s daily routines, or limit what the partner with dementia was doing. Behavioural changes also appeared when the partner with dementia had to face his own illness. The theory of social exchange emphasizes reciprocity as the basis of an intimate relationship. When one of the spouses had dementia that causes disruptive behavioural changes, reciprocity was not possible. The spousal carer has to come up with various strategies to cope with daily life and avoid conflicts. These situations and efforts may not be recognized at all by the person with dementia. The strong emotional ties associated with a long-term intimate relationship make the spousal carers stay in the relationship.

Koronaviruspandemian rajoittamiseen liittyvät ensimmäiset toimenpiteet ja seuraukset kohdistuivat erityisesti ikääntyneisiin. Sosiaali- ja terveyspalvelujen resursseja kohdennettiin uudelleen ja osa palveluista suljettiin. Samanaikaisesti lähikontaktien välttäminen vaikeutti omaisten tarjoamaa apua. Selvitimme puolistrukturoitujen haastattelujen (N=16) laadullisen teema-analyysin avulla, miten yksityisessä kodissa tai tehostetussa palveluasumisessa asuvien ihmisten avun saaminen muuttui ja miten he suhtautuivat lähikontaktien välttämiseen sekä mahdollisiin muutoksiin avun saamisessa. Kahdeksassa haastattelussa kerrottiin muutoksia tapahtuneen, seitsemässä taas ei. Yhden asumispalveluissa asuvan henkilön tilanne jäi epäselväksi. Jaoimme kuvaukset kolmeen teemaan. Neutraalit kuvaukset eivät olleet myönteisiä eivätkä kielteisiä, ja ne liittyivät yleensä vähäisiin muutoksiin. Sopeutumista kuvasi se, että henkilöt pyrkivät ilmaisemaan mahdollista haittaa aiheuttaneiden muutosten lisäksi jotain myönteistä ja keksimään uusia toimintatapoja. Huolta aiheutti epäselvyys hoidon järjestämisessä tai järjestämistavoissa sekä ahdistus läheisten tapaamattomuudesta. Kotona asumista suosiva hoivapolitiikka on varautunut puutteellisesti äkillisiin kriisitilanteisiin etenkin niiden kohdalla, jotka ovat huomattavassa määrin omaisten avun varassa. Tämä joukko tarvitsisi joustavampia avunsaantimuotoja kuin koronapandemian yhteydessä on pystytty suosittelemaan tai tarjoamaan.

Background Comorbidities have major implications for the care of people with dementia. Aim To investigate the patterns of comorbidities in dementia in the last five years of life and how these patterns differed between three cohorts. Methods The study included people who died at age 70 and above in 2001 (n = 13,717), 2007 (n = 34,750) and 2013 (n = 38,087) in Finland. ICD-10 morbidity data for a five-year period prior to death were extracted from national registers. Principal component analysis was employed to identify patterns for several morbidities. The associations of principal component scores with dementia were analysed using binary logistic regression. Linear regression was used to examine changes in the number of morbidities in patterns over time. Results The morbidity patterns identified in the last years of life were (1) cardiometabolic disorders, (2) neurological, (3) cerebrovascular diseases and (4) musculoskeletal, thyroid and psychiatric disorders. Among the patterns, neurological and musculoskeletal, thyroid and psychiatric disorders were associated with dementia. The number of diagnoses in the cerebrovascular pattern increased and those in the musculoskeletal, thyroid and psychiatric pattern decreased over time. Discussion Comorbidity patterns identified in this nationwide register study are largely in line with previous evidence. Time difference in these patterns provide crucial information for service planning. Conclusions Comorbidities in dementia in the last years of life occur in patterns and change over time. More systematic monitoring and updated clinical guidelines are needed for the care of comorbidities with dementia.

While it is known that those who are living their last years are frequent users of social and health services, research about medicines at the end of life is scarce. We examined whether the proportions of purchasers and the types of prescription medicines purchased during a 2-year period differed between community-dwelling old people who died (decedents) in 2002, 2006 or 2011 and old people who lived at least 2 years longer (survivors) in Finland. We also examined how those differences changed over time. The study population was identified from nationwide registers and consisted of 174,097 community-dwelling people who were 70 years of age or older. Of these, 81,893 were decedents and 92,204 survivors. Data on purchases of medicines were gathered from the Finnish prescription database. Along with descriptive analyses, binary logistic regression analysis was used to find the association between decedent status and the purchase of medicines in general and different categories of medicines in particular. Almost all community-dwelling decedents and survivors purchased medicines at least once during the 2-year period. Over time, the proportion of purchasers increased in both groups but especially among survivors, thereby reducing the differences between the groups. However, the probability of purchasing medicines in general and different categories of medicine in particular remained significantly higher for decedents than for survivors after adjustments. This study shows that purchases of medication are concentrated at the end of life, as is the use of social and health services. However, the differences between decedents and survivors diminish over time.

Tämä suositus on osa kansallista Avoimen tieteen koordinaatio -hanketta ja tukee Tutkimusjulkaisujen avoimen saatavuuden linjausta (2019) sekä on linjassa Avoimen tieteen ja tutkimuksen julistuksen 2020–2025 kanssa. Suositus on tarkoitettu tueksi tutkimusrahoittajille, jotka ovat luomassa omia avoimen julkaisemisen linjauksiaan rahoittamalleen tutkimukselle. Tutkimusrahoittajat voivat soveltaa suositusta tarkoituksenmukaiseksi katsomallaan tavalla.

Observation of long-term trends within countries is needed to increase insight into how policy initiatives are reflected in the use of care over time in addition to individual determinants of care use. In the past decades, Dutch care policies have favoured homecare and reduced the availability of institutional care which extended the care responsibilities of formal and informal care-givers at home. This study investigates the changes in the use of informal and formal homecare, community services and residential care among cognitively impaired older adults over time in the Netherlands. In addition, of special interest here are the associations of the presence of a spouse, other family members or social network with care use, and the interdependency between the use of different types of care. The study employs the Longitudinal Aging Study Amsterdam (LASA) covering the years 1992–2012, analysed with generalised estimating equations. The data consisted of 1,022 observations gathered from 813 respondents aged 65–85. The respondents were cognitively impaired according to the age- and education-standardised Mini-Mental State Examination score. The analyses took into account several individual determinants of care use. The use of informal care and residential care decreased while the use of formal homecare and community services remained the same. Simultaneously, the proportion of those who did not use the studied care types increased. The contribution of partners in informal care decreased. Informal care and formal homecare use increasingly became complementary services. The findings suggest that the decreases in informal care and residential care have not been replaced by other types of care, as reflected in the increased number of persons receiving no care. Care policies should not rely excessively on the availability of informal help and should guarantee adequate formal help, especially for those in high need.

Objectives Delayed discharge, remaining in acute care longer than medically necessary, reflects less than optimal use of hospital care resources and can have negative implications for patients. We studied (1) the change over time in delayed discharge in people with and without dementia, and (2) the association of delayed discharge with discharge destination and with the continuity of primary care prior to urgent admission. Design A retrospective population-based study. Setting and Participants Delayed discharge after urgent admission and length of delayed discharge were studied in all hospital users aged ≥70 years with at least 1 urgent admission in British Columbia, Canada, in years 2001/02, 2005/06, 2010/11, and 2015/16 (N = 276,299). Methods Linked administrative data provided by Population Data BC were analyzed using generalized estimating equations (GEE), logistic regression analysis, and negative binomial regression analyses. Results Delayed discharge increased among people with dementia and decreased among people without dementia, whereas the length of delay decreased among both. Dementia was the strongest predictor of delayed discharge [odds ratio 4.76; 95% confidence interval (CI) 4.59–4.93], whereas waiting for long-term care placement [incidence rate ratio (IRR) 1.56; 95% CI 1.50–1.62] and dementia (IRR 1.50; 95% CI 1.45–1.54) predicted a higher number of days of delay. Continuity and quantity of care with the same physician before urgent admission was associated with a decreased risk of delayed discharge, especially in people with dementia. Conclusions and Implications This study demonstrates the need for better system integration and patient-centered care especially for people with dementia. Population aging will likely increase the number of patients at risk of delayed discharge. Delayed discharge is associated with both the patient's complex needs and the inability of the system to meet these needs during and after urgent care. Sufficient investments are needed in both primary care and long-term care resources to reduce delayed discharges.

Introduction The place of death is suggested as a quality indicator for end-of-life care. We investigated how the place of death changed between 1998 and 2013 among people with dementia. Methods Data from the Finnish national health and social care registers were extracted for all people with dementia, who had died at 70 years old during these years ( N = 140,034). Descriptive analysis and logistic regression analysis were conducted. Results In 2013, the most common place of death was the primary care hospital (39.8%), followed by nursing home and sheltered housing with 24-hour assistance (20.5%). Dying at home was rare (8.1%). During the study years, dying in the hospital decreased while dying in sheltered housing with 24-hour assistance increased. Discussion The place of death for people with dementia has changed from institutions to noninstitutional care facilities. Further research on noninstitutional care facilities' ability to provide high-quality care at the end of life is needed.

Long-term care (LTC) use increases with ageing due to an age-related increase in disability. Both the levels of disability and social resources vary among socioeconomic groups. The association of socioeconomic status with LTC use is largely unexplored for the oldest old. This study examined how occupational class is associated with LTC use among nonagenarians in the context of universal care coverage. A population-based prospective cohort study with 2862 participants who answered the Vitality 90 + Study surveys in 2001, 2003, 2007, or 2010 in Tampere, Finland, was combined with national register data on LTC use. LTC use in total and separately for publicly and privately provided LTC facilities was assessed in a cross-sectional setting and during the 34-month follow-up by using logistic regression and competing-risks regression methods. Functional status, multimorbidity, family relations, and help at home were controlled. In total or public LTC use, only a few differences between occupational classes were found at baseline. However, upper non-manuals used more private LTC than lower non-manuals (OR 0.54, 95% CI 0.35-0.85), skilled manuals (OR 0.40, 95% CI 0.26-0.62), or housewives (OR 0.40, 95% CI 0.22-0.74). There were no statistically significant differences in entering any kind of LTC after adjustments for all independent variables. During the study period, the share of privately provided care out of all LTC increased and the upper non-manuals no more used private care more than other groups. This study underlines the importance of following the structural changes in LTC provision to guarantee that the need for LTC is met equally for all socioeconomic groups.

Background The structure of long-term care (LTC) for old people has changed: care has been shifted from institutions to the community, and death is being postponed to increasingly old age. The aim of the study was to analyze how the use and costs of LTC in the last two years of life among old people changed between 2002 and 2013. Methods Data were derived from national registers. The study population contains all those who died at the age of 70 years or older in 2002–2013 in Finland (N = 427,078). The costs were calculated using national unit cost information. Binary logistic regression and Cox proportional hazard models were used to study the association of year of death with use and costs of LTC. Results The proportion of those who used LTC and the sum of days in LTC in the last two years of life increased between 2002 and 2013. The mean number of days in institutional LTC decreased, while that for sheltered housing increased. The costs of LTC per user decreased. Conclusions Use of LTC in the last two years of life increased, which was explained by the postponement of death to increasingly old age. Costs of LTC decreased as sheltered housing replaced institutional LTC. However, an accurate comparison of costs of different types of LTC is difficult, and the societal costs of sheltered housing are not well known.

The aim of the study is (1) to describe and analyse health and social service use and medicine purchases in the last 2 years of life among older adults who died by suicide and (2) to compare use and purchases between three groups: those who died by suicide, died a natural death or who lived longer. Nation-wide Finnish register data were used. The data consist of 316,639 decedents who died at the age of 70 years or older in 1998-2008 and 222,967 people who lived longer. Use of hospital, long-term care and home care, and the purchase of prescribed psychotropic medications were studied for the 2-year period. Binary logistic regression analyses were applied. 1118 older adults died by suicide (0.4 % of all deaths). A majority of older adults who died by suicide had multiple somatic diseases and mental disorders, especially depression, and had contact with health and social services in the last 2 years of life. At the same level of morbidity, use of hospital and long-term care was less common among those who died by suicide than among those who died of natural causes, but more common than among those who lived longer. Those who died by suicide received less home care than those who lived longer. A high proportion of suicides occurred in the first month following hospital discharge. Health and social services should improve support for older adults with chronic diseases and depression.

Background: Lynch syndrome (LS) is associated with a significant lifetime risk of endometrial cancer (EC). There are limited data on factors modifying the EC risk in LS patients. Methods: The study cohort included 136 LS mutation-positive women. Exposure data were collected by postal questionnaires. Cox regression model was used to estimate the associations between lifestyle, hormonal, reproductive and medical factors and the risk of EC. Results: Increased EC risk was associated with type II diabetes and hypercholesterolaemia in univariable (HR 3.21, (95% CI 1.34–7.78), P=0.009 and HR 2.08, (95% CI 1.11–3.90), P=0.02; respectively) and with diabetes and duration of hormone replacement therapy (HRT) in multivariable analysis (HR 4.18 (95% CI 1.52–11.52), P=0.006 and HR 1.07 (95% CI 1.02–1.13), P=0.010; respectively). Conclusions: Prevention of diabetes and avoiding long-duration HRT are potential targets for reduction of EC risk in women with LS.

Increasing life expectancy has postponed the last years of life to older ages. Previous studies have demonstrated that disability is determined by age, age at death and closeness to death but only few have focused on oldest old population. We examined disability during the last years of life among people aged 90 years and older between 2001 and 2014 and assessed whether it varied by age at death, sex and study year. We used population-based survey data from the Vitality 90+ Study years 2001, 2003, 2007, 2010 and 2014 (N=5711, response rate 77-86%) linked with dates of death from Statistics Finland. Disability was defined as dependency in daily activities (dressing, getting in and out of bed) and mobility (moving indoors, walking 400m, using stairs). We analyzed disability stratified by closeness to death and age at death for men and women in each study year with logistic regression method. Disability in daily activities and mobility increased systematically with closeness to death (>4, 3-3.99, 2-2.99, 1-1.99 and 1> years to death) for both sexes in each study year. Also higher age at death (90-91 vs. 94+ years) was associated with disability. These associations remained consistent throughout the study period. This study shows that in the oldest old population both closeness to death and age at death determine the level of disability. We suggest that the complex and resource-draining care needs at the end of life will increase with growing number of people living their last years of life in very old age.

Delayed hospital discharge, also known as alternate level of care (ALC) in Canada, refers to a stay in hospital when acute services are no longer needed but the patient occupies a hospital bed while waiting to be discharged to an appropriate care setting. ALC has negative consequences for both the service system (high costs, inappropriate use of hospital resources) and individuals (feelings of uncertainty, functional loss). Extensive administrative health care data from British Columbia, Canada, were employed to study differences in ALC between people with and without dementia in 2001/02, 2005/06, 2010/11 and 2015/16, and whether continuity in physician–patient relationships prior to hospitalization is associated with ALC. We analyzed designation of ALC and length of stay in ALC, using generalized estimating equations logistic regression and negative binomial regression analysis. Of all individual, residential area and health care related factors, dementia was the single most important factor increasing the odds of designation of ALC (OR 4.76, 95%CI 4.59, 4.93). Dementia also added to the length of stay in ALC. Proportion of patients designated to ALC increased over the study years. Higher number of visits to the same general practitioner (GP) prior to hospitalization decreased the odds of ALC, especially in people with dementia. As populations age, the number of people with dementia is increasing. Efforts to control ALC have resulted in greater concentration of ALC among people with dementia. Higher continuity GP care may be a way to help understand and control these trends.

Aims: Cross-country comparisons of mortality and longevity patterns of Nordic populations could contribute with novel insights into the compositional changes of these populations. We investigated three metrics of population ageing: the proportion of the population aged 75+ and 90+ years, the proportion of birth cohorts reaching 75 and 90 years, and life expectancy (LE) at age 75 and 90 years in Sweden, Norway, Iceland, Denmark and Finland, in the period 1990–2014. Methods: Demographic information was collected from national statistical databases and the Human Mortality Database. Results: All metrics on population ageing increased during the study period, but there were some cross-country variations. Finland experienced a notably steep increase in the proportion of 75+ and 90+ year olds compared to the other countries. Regarding the proportion reaching old ages, the Finnish lagged behind from the beginning, but females decreased this difference. The Danes were more similar to the other countries at the beginning, but did not experience the same increase over time. Gender-specific LE at age 75 and 90 years was similar overall in the five countries. Conclusions: Developments in cross-country variation suggest that survival until old age has become more similar for Finnish females and more different for Danish males and females compared with the other countries in recent decades. This provides perspectives on the potential to improve longevity in Denmark and Finland. Similarities in LE in old age suggest that expected mortality in old age has been more similar throughout the study period.

ObjectivesThe time of death is increasingly postponed to a very high age. How this change affects the use of care services at the population level is unknown. This study analyses the care profiles of older people during their last 2 years of life, and investigates how these profiles differ for the study years 1996–1998 and 2011–2013.DesignRetrospective cross-sectional nationwide data drawn from the Care Register for Health Care, the Care Register for Social Care and the Causes of Death Register. The data included the use of hospital and long-term care services during the last 2 years of life for all those who died in 1998 and in 2013 at the age of ≥70 years in Finland.MethodsWe constructed four care profiles using two criteria: (1) number of days in round-the-clock care (vs at home) in the last 2 years of life and (2) care transitions during the last 6 months of life (ie, end-of-life care transitions).ResultsBetween the study periods, the average age at death and the number of diagnoses increased. Most older people (1998: 64.3%, 2013: 59.3%) lived at home until their last months of life (profile 2) after which they moved into hospital or long-term care facilities. This profile became less common and the profiles with a high use of care services became more common (profiles 3 and 4 together in 1998: 25.0%, in 2013: 30.9%). People with dementia, women and the oldest old were over-represented in the latter profiles. In both study periods, fewer than one in ten stayed at home for the whole last 6 months (profile 1).ConclusionsPostponement of death to a very old age may translate into more severe disability in the last months or years of life. Care systems must be prepared for longer periods of long-term care services needed at the end of life.

Death is increasingly postponed to a very old age. Both high age and closeness of death are major contributors to use of care.We used nationwide register based data to identify care profiles during the last two years of life among those who died at the age of 70 or older in Finland in 1998 (N= 34,116) and 2013 (N=38,087). From 1998 to 2013, the number of those who died at very old age, with dementia, and with multi-morbidity, increased. Most people stayed at home until the last year of life, but nine in ten were in long-term care or in hospital during the last six months. In future, people may have more healthy years, but simultaneously the last years are lived with more severe disability. Postponed death will increase the need for use of long-term care, but also the need for home care in the last years of life.

Background The use of long-term care (LTC) is common in very old age and in the last years of life. It is not known how the use pattern is changing as death is being postponed to increasingly old age. The aim is to analyze the association between the use of LTC and approaching death among old people and the change in this association from 2000 to 2011. Methods The data were derived from national registers. The study population consists of 315 458 case-control pairs. Cases (decedents) were those who died between 2000 and 2011 at the age of 70 years or over in Finland. The matched controls (survivors) lived at least 2 years longer. Use of LTC was studied for the last 730 days for decedents and for the same calendar days for survivors. Conditional logistic regression analyses were performed to test the association of LTC use with decedent status and year. Results The difference in LTC use between decedents and survivors was smallest among the oldest (OR 9.91 among youngest, 4.96 among oldest). The difference widened from 2000 to 2011 (OR of interaction of LTC use and year increased): use increased or held steady among decedents, but decreased among survivors. Conclusions The use of LTC became increasingly concentrated in the last years of life during the study period. The use of LTC is also common among the oldest survivors. As more people live to very old age, the demand for LTC will increase.

Objectives The purpose of the study was to examine the frequency of burdensome care transitions at the end of life, the difference between different types of residential care facilities, and the changes occurring between 2002 and 2008. Design A nationwide, register-based retrospective study. Setting Residential care facilities offering long-term care, including traditional nursing homes, sheltered housing with 24-hour assistance, and long-term care facilities specialized in care for people with dementia. Study group All people in Finland who died at the age of 70 or older, had dementia, and were in residential care during their last months of life. Main outcome measures Three types of potentially burdensome care transition: (1) any transition to another care facility in the last 3 days of life; (2) a lack of continuity with respect to a residential care facility before and after hospitalization in the last 90 days of life; (3) multiple hospitalizations (more than 2) in the last 90 days of life. The 3 types were studied separately and as a whole. Results One-tenth (9.5%) had burdensome care transitions. Multiple hospitalizations in the last 90 days were the most frequent, followed by any transitions in the last 3 days of life. The frequency varied between residents who lived in different baseline care facilities being higher in sheltered housing and long-term specialist care for people with dementia than in traditional nursing homes. During the study years, the number of transitions fluctuated but showed a slight decrease since 2005. Conclusions The ongoing change in long-term care from institutional care to housing services causes major challenges to the continuity of end-of-life care. To guarantee good quality during the last days of life for people with dementia, the underlying reasons behind transitions at the end of life should be investigated more thoroughly.

In recent decades, care policy in the Netherlands reduced budgets for residential care and formal home care, which increased the demand for informal care. Women use formal care more often than men, but we lack information on the extent to which the gender gap in care use is explained by differences in individual chracteristics and changes in care policy. Data from the Longitudinal Aging Study Amsterdam (LASA) were employed to explore the gender gap in the use of informal, formal and private home care, community services, and residential care in the years 1996-2016, analyzed using Generalized Estimating Equations (GEE). The data consisted of 9,497 observations, gathered from 3,369 respondents aged 65-85. Women used all types of formal care more than men. The gender differences persisted even when individual characteristics were taken into account; however, only in residential care the differences diminished after care preferences were included in the analysis. During the study years, the gender gap increased in formal home care and in non-use of care, as women increasingly used formal home care and the proportion of men without care expanded. The gender gap in informal care use reversed, with men using more informal care during the earlier years and women using more in the later years. The persistent and even increasing gender differences in care use deserve further exploration of the role of gender in current care culture. The growing gender gab in non-use of care raises concern for older men and their possible increase in unmet care needs.

Objective To assess the effect of concomitant food intake on the relative bioavailability of ospemifene and its main metabolite, 4-hydroxyospemifene, after single oral dosing. Methods This was an open-label, randomized, balanced, two-treatment (fed vs. fasted), two-period, two-sequence cross-over study in 24 healthy male subjects. Single 60-mg doses of ospemifene were administered without food or with a high-fat, high-energy breakfast (860 kcal). In an extension study, a single 60-mg dose of ospemifene was given to 12 subjects with a low-fat, light breakfast (300 kcal). Additional information was acquired by determining tablet dissolution profiles in media which reflected fasted and fed intestinal conditions. Results The AUC0-72 h and Cmax of ospemifene were 2.8- and 3.6-fold higher after a high-fat breakfast and 1.9- and 2.3-fold higher after a low-fat breakfast when compared with an overnight fast. The variability in both primary pharmacokinetic parameters was considerably reduced (by up to 50%) with a meal, indicating more consistent absorption of ospemifene with concomitant food intake. Dissolution in conditions simulating fed intestinal fluid (high bile acid concentration) was increased 3-fold compared with dissolution in simulated fasted intestinal fluid. Conclusions wood markedly enhanced the extent and predictability of ospemifene absorption. The increase in bioavailability was not linearly related with the fat content of the meal. In vitro dissolution results were consistent with these clinical observations. Administration with food enhances and standardizes the oral bioavailability of ospemifene. Thus, it is recommended that ospemifene tablets should be taken with food.

Aims: To analyse whether transitions between care settings differ between municipalities in the last 2 years of life among older people in Finland. Methods: Data were derived from Finnish national registers, and include all those who died in 2002 and 2003 at the age of 70 or older except those living in very small municipalities ( n=67,027). Data include admissions and discharges from health and social care facilities (university hospitals, general hospitals, health centres, residential care facilities) and time spent outside care facilities for 730 days prior to death. Three-level negative binomial regression analyses were performed to study the effect of municipal factors on (1) the total number of all care transitions, (2) the number of transitions between home and different care facilities, and (3) transitions between different care facilities. Results: The municipality of residence had only a minor effect on the total number of care transitions, but greater variation between municipalities was found when different types of care transition were examined separately. Largest differences were found in care transitions involving specialised care. Age structure, urbanity, and economic situation of the municipality had an impact on several different care transitions. Conclusion: The total number of care transitions in 2 final years of life was approximately similar irrespective of the municipality of residence, but the findings imply differences in transitioning specialised care. Potentially, this may suggest inequality between the municipalities, but more detailed studies are needed to confirm the factors underlying these differences.

Advanced age and dementia are important contributors to care use, especially long-term care (LTC). We studied the impact of age on use of LTC and hospital care (HC) in last five years of life in those who died from dementia in three time periods.

Background Dementia is one of the main challenges to our health and social care. This study compares the number and timing of transitions between care settings in the last 2 years of life among older people with and without dementia. Methods Data were derived from Finnish national registers, and include all those who died in 2002 and 2003 at the age of 70 or older (n = 70,366). Negative binomial regression analyses were used to analyse the impact of dementia on number of transitions among people with and without dementia and to adjust the number for age, gender and other diagnoses. Results In the group that lived at home 2 years before death people with a dementia diagnosis had 32% more care transitions than people without dementia, while the group that was in residential care facility 2 years before death people with dementia had 12% fewer moves than those without dementia The average number of transition was highest in last 3 months of life. People with dementia had their last move more often between care facilities and hospitals offering basic health care than people without dementia. Conclusion Dementia has a significant impact on the number and type of transitions. As the number of people with dementia increases, the quality and equity of care of these patients in their last years constitute a special challenge.

New technologies create great opportunities as well as new challenges when libraries build their virtual collections. As e-book readers and other portable devices grow in popularity, collections can no longer be evaluated purely on the basis of content; their adaptability and ease of use on various platforms has to be taken to account. Collaboration between libraries, users and usability professionals is paramount in building virtual collections of the future. Only users can tell how these platforms are going to be used, as mobile tools for study or as entertainment devices. It is important to learn how usable the e-collections really are and what essential materials are currently incompatible with these devices. Digital rights management and technical compatibility issues should become standard considerations in all acquisition of electronic materials. This paper will present a study conducted in the Helsinki University of Technology Library, currently part of the Aalto University, from autumn of 2009 until summer of 2010. In collaboration with the Strategic Usability Research Group, various e-book readers were tested by both professionals and students. In the study, e-book readers were given to students for one study period with all the course material provided in electronic format. Feedback from the students was collected through discussions, study diaries and questionnaires. In the library, the e-book readers were tested in order to see what demands and restrictions they pose on e-materials and how well the current e-collections of the library are usable on these devices. Results suggest incompatibilities with many licensed e-materials, whereas most open access materials can be easily downloaded and used.

This study focuses on the amount and types of transitions in health and social service system during the last 2 years of life and the places of death and among Finnish people aged 70–79, 80–89 and 90 or older. The data set, derived from multiple national registers, consists of 75,578 people who died between 1998 and 2001. The services included university hospitals, general hospitals, health centres and residential care facilities. The most common place of death was the municipal health centre: half of the whole research population died in a health centre. The place of death varied by age and gender: men and people in younger age groups died more often in general or in university hospital or at home, while dying in health centres or in residential care homes was more common among women or the very old. Number of transitions varied from zero to over a hundred transitions during the last 2 years. Number of transitions increased as death approached. Men and younger age groups had more transitions than women and older age groups. Among men and younger age groups transitions between home and general or university hospital were common while transitions between home and health centre or residential care were more common to women and older people. The results indicate that municipal health centres have a major role as care providers as death approaches. Differences between gender and age in numbers and types of transitions were clear. Future research is needed to clarify the causes to these differences.

PurposeThe purpose of this paper is to present a report of the 2007 annual meeting of the International Association of Technological University Libraries (IATUL) held at the KTH, Royal Institute of Technology in Stockholm, Sweden.Design/methodology/approachProvides a brief review of the main themes of the conference: Public access; New tools and services, Metrics; and Economics, Bridging the gap.FindingsScientific publishing directions are changing the environmental landscapes of science and academic research libraries as well as in how scientists are conducting their work in all disciplines and communicating and collaborating with each other. The increasingly more complex and global environments indicate that access to the scientific literature and information sharing are paramount interests of scientists, national governments, the scientific community at‐large, professional societies and commercial publishing interests.Originality/valueLibraries are evolving into far more than repositories of bound volumes as eScience and eCollections mature. The changing role of librarians and of the physical library to handle and treat much more than books and journals is demonstrated by many addresses at this conference.

Variations across Finland in the use of six different long-term care (LTC) services among old people in their last 2 years of life, and the effects of characteristics of municipalities on the variations were studied. We studied variations in the use of residential home, sheltered housing, regular home care and inpatient care in health centre wards by using national registers. We studied how the use of LTC was associated with characteristics of the individuals and in particular characteristics of the municipalities in which they lived. Analyses were conducted with multilevel binary logistic regression. Data included all individuals (34,753) who died in the year 2008 at the age of 70 or over. Of those, 58.3% used some kind of LTC during their last 2 years of life. We found considerable variations between municipalities in the use of different kinds of LTC. A portion of the variation was explained by municipality characteristics. The size and location of the municipality had the strongest association with the use of different kinds of LTC. The economic status of the municipality and morbidity at the population level were poorly associated with LTC use, whereas old-age dependency showed no association. When individual-level characteristics were added to the models, these associations did not alter. Results indicated that the delivery system characteristics had an important effect on the use of LTC services. The considerable variation in LTC services also poses questions with respect to equity in access and to quality of LTC across the country.

e17113Background: Lynch syndrome (LS) is associated with a significant lifetime risk of endometrial cancer (EC) among mutation carrier women. Data are limited concerning the effect of the establish...

Background Dementia is one of the most common causes of death among old people in Finland and other countries with high life expectancies. Dementing illnesses are the most important disease group behind the need for long-term care and therefore place a considerable burden on the health and social care system. The aim of this study was to assess the effects of dementia and year of death (1998-2003) on health and social service use in the last two years of life among old people. Methods The data were derived from multiple national registers in Finland and comprise all those who died in 1998, 2002 or 2003 and 40% of those who died in 1999-2001 at the age of 70 or over (n = 145 944). We studied the use of hospitals, long-term care and home care in the last two years of life. Statistics were performed using binary logistic regression analyses and negative binomial regression analyses, adjusting for age, gender and comorbidity. Results The proportion of study participants with a dementia diagnosis was 23.5%. People with dementia diagnosis used long-term care more often (OR 9.30, 95% CI 8.60, 10.06) but hospital (OR 0.33, 95% CI 0.31, 0.35) and home care (OR 0.50, 95% CI 0.46, 0.54) less often than people without dementia. The likelihood of using university hospital and long-term care increased during the eight-year study period, while the number of days spent in university and general hospital among the users decreased. Differences in service use between people with and without dementia decreased during the study period. Conclusions Old people with dementia used long-term care to a much greater extent and hospital and home care to a lesser extent than those without dementia. This difference persisted even when controlling for age, gender and comorbidity. It is important that greater attention is paid to ensuring that old people with dementia have equitable access to care.

Background: We used case-control design to compare utilization of health and social services between older decedents and survivors, and to identify the respective impact of age and closeness of death on the utilization of services. Methods: Data were derived from multiple national registers. The sample consisted of 56 001 persons, who died during years 1998–2000 at the age of ≥70, and their pairs matched on age, gender and municipality of residence, who were alive at least 2 years after their counterpart's death. Data include use of hospitals, long-term care and home care. Decedents’ utilization within 2 years before death and survivors’ utilization in the same period of time was assessed in three age groups (70–79, 80–89 and ≥90 years) and by gender. Results: Decedents used hospital and long-term care more than their surviving counterparts, but the time patterns were different. In hospital care the differences between decedents and survivors rose in the last months of the study period, whereas in long-term care there were clear differences during the whole 2-year period. The differences were smaller in the oldest age group than in younger age groups. Conclusion: Closeness of death is an important predictor of health and social service use in old age, but its influence varies between age groups. Not only the changing age structure, but also the higher average age at death affects the future need for services.