Working in a gray area-Healthcare staff experiences of receiving consent when caring for persons with dementia.

BACKGROUND: Every person has the right to autonomy, and to be involved in decisions about their care. When persons with dementia have difficulties in expressing what they want, their autonomy is challenged. Staff should strive to involve the person in care decisions, to obtain consent and to avoid the use of coercion and restraints. However, care without consent exists and coercion and restraints are being used. In order to improve care, further knowledge is warranted. AIMS: The purpose of this study was to explore staff's experiences of obtaining consent when caring for persons with dementia. METHODS: In total 14 focus group interviews were conducted with staff with experience of dementia care who work in either home care or residential care in Sweden. An inductive qualitative content analysis was used to analyze the collected data. RESULTS: Three categories were generated describing staff experiences of consent in dementia care: the person as the decision-maker, the staff as the decision-makers, and the viability of the consent. Overall, staff found it difficult to know if they really had consent from the individual. Even if the person verbally gave consent, it was challenging to know if the person really understood what they had consented to. Common to all three categories was the significance of the relationship between the person with dementia and staff: getting to know the person, recognizing the person's response in terms of their facial expressions and body language as well as being able to explain and justify specific actions to the person. CONCLUSION: Staff need better conditions in dementia care, including training and time to reflect on how to obtain consent. A person-centered approach can be one way to develop care and ensure that persons with dementia are allowed autonomy and to share in making decisions.

Aging of severely mentally ill patients first admitted before or after the reorganization of psychiatric care in Sweden.

BACKGROUND: The concept of deinstitutionalization started in the 1960s in the US to describe closing down or reducing the number of beds in mental hospitals. The same process has been going on in many countries but with different names and in various forms. In Europe, countries like Italy prescribed by law an immediate ban on admitting patients to mental hospitals while in some other European countries psychiatric care was reorganized into a sectorized psychiatry characterized by open psychiatric care. This sectorization has not been studied to the same extent as the radical closures of mental hospitals, even though it entailed major changes in the organization of care. The deinstitutionalization in Sweden is connected to the sectorization of psychiatric care, a protracted process taking years to implement. METHODS: Older people, with their first admission to psychiatric care before or after the sectorization process, were followed using three different time metrics: (a) year of first entry into a mental hospital, (b) total years of institutionalization, and (c) changes resulting from aging. Data from surveys in 1996, 2001, 2006, and 2011 were used, together with National registers. RESULTS: Examination of date of first institutionalization and length of stay indicates a clear break in 1985, the year when the sectorization was completed in the studied municipality. The results show that the two groups, despite belonging to the same age group (birthyears 1910-1951, mean birthyear 1937), represented two different patient generations. The pre-sectorization group was institutionalized at an earlier age and accumulated more time in institutions than the post-sectorization group. Compared to the post-sectorization group, the pre-sectorization group were found to be disadvantaged in that their level of functioning was lower, and they had more unmet needs, even when diagnosis was taken into account. CONCLUSIONS: Sectorization is an important divide which explains differences in two groups of the same age but with different institutional history: "modern" and "traditional" patient generations that received radically different types of care. The results indicate that the sectorization of psychiatric care might be as important as the Mental Health Care Reform of 1995, although a relatively quiet revolution.

Physical functioning associated with life-space mobility in later life among men and women.

BACKGROUND: Life-space mobility is defined as the ability to access different areas extending from the room where the person sleeps to places outside one's hometown. Life-space mobility is vital to support performance of daily life activities and autonomous participation in social life. However, there is a dearth of research that investigates a wider range of physical functions and functioning in relation to life-space mobility rather than just single aspects. Thus, the purpose of the present study was to identify and describe several measures of physical functioning associated with life-space mobility among older men and women. METHODS: Data used in this study was derived from the OCTO 2 study, a population-based study of health, functioning and mobility among older persons (n = 312) in Sweden. Associations between Life-Space Assessment (LSA) total score and age, sex, Short Physical Performance Battery (SPPB), dizziness, lung function i.e. Peak Expiratory Flow (PEF), grip strength, self-rated vision and hearing were analysed through bivariate and multivariate regression models. RESULTS: The bivariate models showed that life-space mobility was significantly associated with sex, but also age, SPPB, PEF and grip strength in the total group as well as among men and women. In addition, hearing was significantly associated with life-space mobility among women. Those factors that were statistically significant in the bivariate models were further analysed in multivariable models for the total group, and for men and women separately. In these models, sex, grip strength and SPPB remained significantly associated with life-space mobility in the total group, as well as SPPB among both men and women. CONCLUSION: Sex, physical function in terms of physical performance measured by SPPB (balance, gait speed and chair stand), and grip strength are associated with life-space mobility. Consequently, these factors need to be considered in assessments and interventions aiming to maintain mobility in old age.

Relationships first: Formal and informal home care of older adults in Sweden.

To a great extent, older people in Sweden, often with extensive care needs, are cared for in their own home. Support is often needed from both family and professional caregivers. This study aimed to describe and analyse different aspects of health, functioning and social networks, and how they relate to formal and informal care in the home among older adults. Analyses were performed utilising data from the OCTO-2 study, with a sample of 317 people living in Jönköping County, aged 75, 80, 85 or 90 years, living in their own homes. Data were collected with in-person-testing. Based on receipt of care, the participants were divided into three groups: no care, informal care only, and formal care with or without informal care. Descriptive statistics and multinomial regression analysis were performed to explore the associations between received care and different aspects of health (such as multimorbidity, polypharmacy), social networks (such as loneliness, number of confidants) and functioning (such as managing daily life). The findings demonstrate that the majority of the participants received no care at home (61%). Multimorbidity and polypharmacy were more common among those receiving some kind of care in comparison to those who received no care; moreover, those receiving some kind of care also had difficulties managing daily life and less satisfaction with their social networks. The multinomial logistic regression analyses demonstrated that age, functioning in daily life, perceived general health and satisfaction with the number of confidants were related to receipt of care, but the associations among these factors differed depending on the type of care that was received. The results show the importance of a holistic perspective that includes the older person's experiences when planning home care. The results also highlight the importance of considering social perspectives and relationships in home care rather than focusing only on health factors.

Factors associated to functioning and health in relation to home rehabilitation in Sweden: a non-randomized pre-post intervention study.

BACKGROUND: Home rehabilitation is a growing rehabilitation service in many countries, but scientific knowledge of its components and outcomes is still limited. The aim of this study was to investigate; 1) which changes in functioning and self-rated health could be identified in relation to a home rehabilitation program in a population of community-dwelling citizens, and 2) how socio-demographic factors, health conditions and home rehabilitation interventions were associated to change in functioning and self-rated health after the home rehabilitation program. METHOD: The sample consisted of participants in a municipal home rehabilitation project in Sweden and consisted of 165 community-dwelling citizens. General Linear Models (ANOVA repeated measures) was used for identifying changes in rehabilitation outcomes. Logistic regressions analysis was used to investigate associations between rehabilitation outcomes and potential factors associated to outcome. RESULT: Overall improvements in functioning and self-rated health were found after the home rehabilitation program. Higher frequencies of training sessions with occupational therapists, length of home rehabilitation, and orthopaedic conditions of upper extremities and spine as the main health condition, were associated with rehabilitation outcomes. CONCLUSION: The result indicates that the duration of home rehabilitation interventions and intensity of occupational therapy, as well as the main medical condition may have an impact on the outcomes of home rehabilitation and needs to be considered when planning such programs. However, more research is needed to guide practice and policymaking.

Valuable aspects of home rehabilitation in Sweden: Experiences from older adults.

BACKGROUND AND AIM: Home rehabilitation is an increasing service in many countries due to the aging population. The body of knowledge in home rehabilitation is growing but results are inconsistent, and there is still lack of knowledge from user perspectives to guide practice and home rehabilitation programs. The purpose of this study was to explore valuable aspects of home rehabilitation experienced by older adults. METHODS: Fourteen older persons (nine older adults and five next of kins) were interviewed about their experiences of receiving rehabilitation in their homes. Nine de-identified interviews were analyzed as secondary data and with qualitative content analysis. RESULTS: A familiar home environment, inclusive collaboration, and the mastering of everyday life were aspects of value for older adults in home rehabilitation. Creating a tailor-made rehabilitation together with competent staff, building trust, and providing a sense of security in their homes were also considered valuable. CONCLUSION: When using the home as an arena for rehabilitation and collaboration, interventions can be planned based on the older adult's unique conditions and the knowledge and skills of the multidisciplinary team, including the older adult and their next of kin. A valuable home rehabilitation can then be achieved that creates motivation, which in the long term probably also generates desired effects for the older adult. More research is needed on older adult's experiences of content in home rehabilitation programs so that practice develops in accordance with citizens' needs, individual resources, and relationships.

Does the length of institutionalization matter? Longitudinal follow-up of persons with severe mental illness 65 years and older: shorter-stay versus longer-stay.

OBJECTIVES: As part of the process of de-institutionalization in the Swedish mental healthcare system, a reform was implemented in 1995, moving the responsibility for services and social support for people with severe mental illness (SMI) from the regional level to the municipalities. In many ways, older people with SMI were neglected in this changing landscape of psychiatric care. The aim of this study is to investigate functional levels, living conditions, need of support in daily life, and how these aspects changed over time for older people with SMI. METHODS: In this study we used data from surveys collected in 1996, 2001, 2006, and 2011 and data from national registers. A group of older adults with severe persistent mental illness (SMI-O:P) was identified and divided into those who experienced shorter stays (less than 3 years) in a mental hospital (N = 118) and longer stays (N = 117). RESULTS: After correcting for longitudinal changes with age, the longer-stay group was more likely than the shorter-stay group to experience functional difficulties and as a result, were more likely to have experienced 're-institutionalization' to another care setting, as opposed to living independently. CONCLUSIONS: The length of mental illness hospitalization has significant effects on the living conditions of older people with SMI and their ability to participate in social life.

"In August, I Counted 24 Different Names": Swedish Older Adults' Experiences of Home Care.

In Sweden, many older adults receive care in their own homes. However, their perceptions of the experience of receiving home care has not been sufficiently examined. This study aimed to explore older adults' experiences of receiving care and services in their homes and their perceptions of the care that they had received. In-depth interviews were conducted with 29 older adults. There were individual differences in their level of participation, but they mostly perceived their participation in the planning and provision of home care to be limited. Furthermore, their needs (and wishes), especially those that pertained to different aspects of time, were not always gratified. Organizational factors and care providers' lack of competence and high levels of time pressure influenced their perceptions of care. It is important to consider the perspectives of older care recipients when developing home care.

Oral health is essential for quality of life in older adults: A Swedish National Quality Register Study.

OBJECTIVE: To examine the relationship between QoL and oral health from two Swedish national quality registries (NQRs). BACKGROUND: Oral health plays an important part in general health, which might also affect QoL. No studies have examined the relationships between QoL and oral health in late adulthood based on aggregated data from Swedish NQRs. MATERIAL AND METHODS: Four NQRs incorporated the EQ-5D, which assesses 5 aspects of QoL: mobility, self-care, usual activities, pain/discomfort and anxiety/depression. Items from the Revised Oral Assessment Guide, obtained from the NQR Senior Alert, were used to identify older adults at risk for oral health issues. RESULTS: A total of 510 individuals had data on all relevant variables. Analyses indicated significantly higher QoL for individuals without risk of oral health problems (M = -0.15 (SD = 1.01)), compared to those with risk (M = -0.75 (SD = 1.52)). Logistic regression analysis showed that lower QoL (OR = 0.69 (0.49, 0.97)), mental status (OR = 0.37 (0.19, 0.71)), lower self-rated health (OR = 0.59 (0.42, 0.85)) and higher age (OR = 1.07 (1.01, 1.13)) were significantly related to risk of oral health problems. Higher BMI (OR = 1.13 (0.99, 1.30)), living alone (OR = 2.37 (0.93, 6.06)) and more years of education (OR = 1.15 (1.01, 1.31)) were associated with higher risk of oral health problems. CONCLUSIONS: Oral health is a significant component of quality of life in late adulthood. NQRs are of value for healthy ageing research in populations that may be underrepresented in research studies.

Health- and social care in the last year of life among older adults in Sweden.

BACKGROUND: In the last years of life, burden of disease and disability and need of health- and social care often increase. Social, functional and psychological factors may be important in regard to social- and health care utilization. This study aims to describe use of health- and social care during the last year of life among persons living in ordinary housing or in assisted living facilities. METHODS: A retrospective study examining health- and social care utilization during their last year of life, using a subsample from the Swedish twin registries individually linked to several Swedish national quality registries (NQR). Persons that died during 2008-2009 and 2011-2012 (n = 1518) were selected. RESULTS: Mean age at death was 85.9 ± 7.3 (range 65.1-109.0). Among the 1518 participants (women n = 888, 58.5%), of which 741 (49%) were living in assisted living facilities and 1061 (69.9%) had at least one hospitalization during last year of life. The most common causes of death were cardiovascular disease (43.8%) and tumors (15.3%). A multivariable logistic regression revealed that living in ordinary housing, younger age and higher numbers of NQR's increased the likelihood of hospitalization. CONCLUSIONS: Persons in their last year of life consumed high amount of health- and social care although 12% did not receive any home care. Married persons received less home care than never married. Persons living in ordinary housing had higher numbers of hospitalizations compared to participants in assisted living facilities. Older persons and persons registered in fewer NQR's were less hospitalized.

Role of motor function and lung function in pathways to ageing and decline.

BACKGROUND: Extensive research has investigated the association between age changes in various domains, including lung function and motor function. However, a few analyses have tested models that incorporate bidirectional longitudinal influences between lung and motor function to test the temporal chain of events in the disability process. Dual change score models (DCSM) assist with identification of leading indicators of change by leveraging longitudinal data to examine the extent to which changes in one variable influence subsequent changes in a second variable, and vice versa. AIMS: The purpose of the current-analysis study was to apply DCSM to data from the Swedish Adoption/Twin Study of ageing to examine the nature of the longitudinal relationship between motor functioning and lung function. METHODS: Three motor functioning factors were created from 20 performance measures, including measures of balance, flexibility, and fine motor skills. Peak expiratory flow measured lung function. Participants were 829 adults aged 50-88 at the first of 9 waves of testing covering a 27-year follow-up period; 80% participated in at least three waves. RESULTS: Model comparisons indicated that decline in lung function preceded and contributed to subsequent decline in motor function. DISCUSSION: Combined with previous results, these results suggest that declining lung function results in increasing difficulties in motor function, which contribute to subsequent declines in multiple domains. CONCLUSION: Understanding the cascade of events that can lead to dependence can help in the development of interventions targeted early in the disablement process.

A responsibility that never rests - the life situation of a family caregiver to an older person.

BACKGROUND: When the ageing population increases, the burden and responsibility of close family members will likely increase. Those closely related who assume a great responsibility can be significantly affected in health, well-being and daily life. AIM: This study aims to describe the life situation when family caregivers are imposed responsibility for an older person with complex care needs in their own home. METHODS: In this Swedish qualitative study, ten family caregivers were strategically selected in order to achieve variations in the life situation. A reflective lifeworld research design based on phenomenological philosophy was used throughout the data collection with the lifeworld interviews and the analytic process. FINDINGS: In terms of extensive responsibility, the life situation is complex and involves emotions that are difficult to manage. In essence, a paradoxical life situation is described which is experienced as both voluntarily and nonchosen at the same time. The responsibility never rests. The essential meaning is further illustrated with three constituents: loss of freedom, contradictory feelings and affected relationships. CONCLUSION: A life situation with extensive responsibility for an older family member interferes with the whole life situation with an impact on health and relationships with other people. The findings are crucial for professional caregivers in order to capture the nature of family support in a way that enables a meaningful life for both the family caregiver and the older person being cared for. Knowledge of this will give professional caregivers an increased awareness of the life situation of family caregivers and provide a better understanding of the support they are longing for, and, in some countries, such as Sweden, also are entitled to by law.

Cohort by Education Interactions in Longitudinal Changes in Functional Abilities.

Objective: Investigations of cohort differences in relationships between education and health tend to focus on mortality or self-reported health. We report one of the first analyses of cohort differences in relationships between education and objective measures of functional abilities across the lifespan. Method: Up to 26 years of follow-up data were available from 859 adults from the Swedish Adoption/Twin Study of Aging. The sample was divided into two cohorts by birth year: 1900-1924 and 1925-1948. Latent growth curve models (LGCM) were compared across cohort and educational levels. Results: LGCM indicated divergence between adults with lower and higher educational attainment in longitudinal trajectories of change with age in the Balance and Flexibility factors for the later born cohort only. Discussion: Results support the cumulative advantage theory and suggest that education-health disparities are increasing in recent cohorts, even in counties with national health care systems and strong support of education.

The Association Between Psychosocial Work Environment and Satisfaction With Old Age Care Among Care Recipients.

This study examines the association between nursing assistants' perceptions of their psychosocial work environment and satisfaction among older people receiving care in nursing homes and home care. Cross-sectional surveys were conducted among people receiving care (N = 1,535) and nursing assistants (N = 1,132) in 45 nursing homes and 21 home care units within municipal old-age care. Better psychosocial work environment was related to higher satisfaction in old-age care among the recipients. Significant and stronger associations were more common in nursing homes than in home care. Perception of mastery and positive challenges at work were associated with higher recipient satisfaction both in home care and in nursing homes: social climate, perception of group work, perception of mastery, and positive challenges at work only in nursing homes. Findings suggest that recipient satisfaction may be increased by improving the psychosocial work environment for nursing assistants, both in nursing homes and in home care.

Longitudinal correspondence between subjective and objective memory in the oldest old: A parallel process model by gender.

Subjective memory and objective memory performance have predictive utility for clinically relevant outcomes in older adults. Previous research supports certain overlap between objective performance and subjective ratings of memory. These studies are typically cross-sectional or use baseline data only to predict subsequent change. The current study uses a parallel process model to examine concurrent changes in objective memory and subjective memory. We combined data from two population-based Swedish studies of individuals aged 80 + years, assessed every 2 years (OCTO-3 measurement occasions, OCTO-Twin-5 measurement occasions) yielding 607 participants (66% female). The results confirmed that both objective and subjective memory declined over time. The association between the slope of objective memory and subjective memory was statistically significant for women but not for men. This pattern remained after accounting for age and depressive symptoms. Our findings suggest that, in population-based samples of the oldest old, women seem to show better metacognitive abilities in detecting and reporting changes in memory. Memory changes for men may be better identified by objective performance as their self-assessment of memory changes is not associated with actual change in memory performance.

The Impact of Leadership and Psychosocial Work Environment on Recipient Satisfaction in Nursing Homes and Home Care.

This study examines the association between nursing assistants' assessment of leadership, their psychosocial work environment, and satisfaction among older people receiving care in nursing homes and home care. Cross-sectional surveys were conducted with nursing assistants (n = 1,132) and people receiving care (n = 1,535) in 45 nursing homes and 21 home care units. Direct leadership was associated with the psychosocial work environment in nursing homes and home care. Furthermore, better leadership was related to higher satisfaction among nursing assistants and older people in nursing homes. Thus, indirect leadership had no effect on recipients' satisfaction in either nursing homes or home care. The path analysis showed an indirect effect between leadership factors and recipient satisfaction. The findings suggest that the psychosocial work environment of nursing assistants and recipient satisfaction in nursing homes can be increased by improving leadership.

Becoming a guest in your own home: Home care in Sweden from the perspective of older people with multimorbidities.

AIM AND OBJECTIVE: To describe the meaning of the phenomenon home care from the perspective of older persons who live alone with multimorbidity. BACKGROUND: In line with worldwide changing demographics, conditions for older people in need of home care are changing. In Sweden there is a stay-in-place policy and older people are expected to live and be cared for in their own home as long as possible. Home care, instituted by different laws, is a challenge affecting the older person when the private home becomes a workplace. DESIGN: This study uses a qualitative design with a lifeworld approach. METHODS: The study having been conducted in Sweden in 2016, the researchers interviewed 12 older persons that live alone and receive home care. Data were analysed using qualitative content analysis. RESULTS: The findings illustrate four sub-themes: adapting to a caring culture, feeling exposed, unable to influence care and forced relations. The overall theme reveals that older people experience a life-changing situation when receiving home care and they become a guest in their own home. CONCLUSIONS: Becoming older with increased needs means to disrupt one's life when one's private home becomes a public arena. The gap between an older person's rights by law and the older person's experiences of receiving home care needs to be highlighted to meet the oncoming challenges in providing a home care that includes participation of the older themselves. Only then can care be offered that enables older people to have a sense of control and experience their home as their own. IMPLICATIONS FOR PRACTICE: The findings emphasise the need to view older people as being self-determinant and independent. Older people receiving home care need to be seen as individuals, and their entire life situation should be considered by also acknowledging the important role played by relatives and caregivers.

Associations Between Fine Motor Performance in Activities of Daily Living and Cognitive Ability in a Nondemented Sample of Older Adults: Implications for Geriatric Physical Rehabilitation.

OBJECTIVE: Fine motor ability (FMA) is essential in certain activities of daily living (ADL) and is considered mostly as a component of physical function. We hypothesize that cognitive ability explains significant variance in ADL-related FMA, above and beyond what is explained by physical ability (grip strength). METHOD: Origins of Variance in the Old Old Study (OCTO)-Twin participants ( n = 218), aged 80+ (dementia, stroke, Parkinson's disease excluded) were assessed on depressive symptoms (Center for Epidemiologic Studies-Depression Scale [CES-D]), a cognitive battery, grip strength, and FMA. RESULTS: In a series of ordinary least squares regression models, FMA was not associated with gender or depressive symptoms, but was associated with age (marginally; ß = -.164, p = .051), grip strength (ß = -.381, p < .01), and one cognitive measure, perceptual speed (ß = -.249, p < .01). DISCUSSION: In nondemented older adults, cognitive speed predicts ADL-related FMA after controlling for age and physical ability. Physical rehabilitation of FMA in ADL tasks should consider the importance of cognitive ability, even in nondemented older adults.