Britt-Marie Sjölund

A longitudinal study integrating population, care and social services data. The Swedish National study on Aging and Care (SNAC)

Background and aims: A large, national, long-term, longitudinal, multi-purpose study has been launched in Sweden — the Swedish National study on Aging and Care (SNAC). The study involves four research centers collecting data in four different areas of Sweden. Methods: The study consists of two parts: the population part and the care and services part. In the population part, a large, representative panel of elders in different age cohorts is followed over time to record and describe the aging process from different aspects. In the care and services part, a systematic, longitudinal, individually-based collection of data is performed concerning provision of care and services together with functional ability, specific health care problems, and living conditions of the recipients living in the area. Results: The data collection in the population part of the SNAC is not yet completed. In the present article, some preliminary results are reported from the care and services part. These pertain to comparisons between the participating areas with respect to the prevalence of disability among those receiving care and social services in their ordinary homes and those receiving care in special accommodation. A comparison is also presented with regard to the amount of home help provided to subjects with a given disability. Conclusions: This project has several advantages. It is expected to generate a rich data base relevant for future research on aging and care and to have a direct impact on the future Swedish system of care and services for the elderly.

Incremental patterns in the amount of informal and formal care among non-demented and demented elderly persons results from a 3-year follow-up population-based study

Elderly care includes complex interactions between formal services, informal care, morbidity and disabilities. Studies of the incremental effects of formal and informal care are rare and thus the objective was to describe the longitudinal patterns in formal and informal care given to non‐demented and demented persons living in a rural area in Sweden.

Time trends in prevalence of activities of daily living (ADL) disability and survival: comparing two populations (aged 78+ years) living in a rural area in Sweden.

The aim was to study time trends in prevalence of disability in ADL and survival among men and women 78 years and older comparing two cohorts. The study was a time trend study based on two population-based community cohorts, the Nordanstig Project (NP), collected 1995-1998 and the Swedish National Study on Aging and Care in Nordanstig (SNAC-N), collected 2001-2003. The participants were people aged 78 years and older from the NP cohort (N=303) and from the SNAC-N cohort (N=406). All were clinically examined by physicians and nurses using standardized protocols. Disability was defined as a need for assistance in one or more ADL activities. The prevalence of disability and survival were compared using logistic and Cox models. The prevalence of ADL disability was stable for men, while women became more disabled in ADL during the time period, OR 2.36 (1.12-4.94). There was no significant difference in survival time between the cohorts in either ADL disabled persons or non-disabled persons. There was a tendency for increased survival for non-disabled persons in SNAC-N compared with NP, although not significant; this was particularly true for women. In general, women survived longer than men did regardless of whether they were ADL disabled or not. The time trends for ADL disability found in the study show that ADL disability had increased in women but not in men. More studies are needed to identify risk factors for ADL disability with a view to preventing it in time.

Morbidity and physical functioning in old age : Differences according to living area

OBJECTIVES: To describe differences in morbidity and functional status according to living area.

Cohort Effects in the Prevalence and Survival of People with Dementia in a Rural Area in Northern Sweden.

BACKGROUND Recent studies suggest that trends in cardiovascular risk may result in a decrease in age-specific prevalence of dementia. Studies in rural areas are rare. OBJECTIVES To study cohort effects in dementia prevalence and survival of people with dementia in a Swedish rural area. METHODS Participants were from the 1995-1998 Nordanstig Project (NP) (n = 303) and the 2001-2003 Swedish National study on Aging and Care in Nordanstig (SNAC-N) (n = 384). Overall 6-year dementia prevalence and mortality in NP and SNAC-N were compared for people 78 years and older. Logistic regression analyses were used to calculate odds ratios (ORs) and 95% confidence intervals (CIs) for dementia occurrence using the NP study population as the reference group. Cox regression models were used to analyze time to death. RESULTS The crude prevalence of dementia was 21.8% in NP and 17.4% in SNAC-N. When the NP cohort was used as the reference group, the age- and gender-adjusted OR of dementia was 0.71 (95% CI 0.48-1.04) in SNAC-N; the OR was 0.47 (0.24-0.90) for men and 0.88 (0.54-1.44) for women. In the extended model, the OR of dementia was significantly lower in SNAC-N than in the NP cohort as a whole (0.63; 0.39-0.99) and in men (0.34; 0.15-0.79), but not in women (0.81; 0.46-1.44). The Cox regression models indicated that the hazard ratio of dying was lower in the SNAC-N than NP population. CONCLUSIONS Trends toward a lower prevalence of dementia in high-income countries seem to be evident in this Swedish rural area, at least in men.

Horizontal and vertical target efficiency - a comparison between users and non-users of public long-term care in Sweden

ABSTRACT The extent to which a system of services is in tune with the needs of the population can be expressed in terms of target efficiency, which includes horizontal target efficiency – the extent to which those deemed to need a service receive it – and vertical target efficiency – the corresponding extent to which those who receive a service actually need it. Vertical efficiency can be measured by looking only at those receiving services. To measure horizontal target efficiency in a population, one must have access to population surveys. Data were taken from the baseline survey of the Swedish National Study on Ageing and Care (SNAC study). The results show that more than 80 per cent of those dependent in personal activities of daily living in the studied geographic areas were users of public long-term care (LTC). Dependency in instrumental activities of daily living was identified as the most important predictor of using LTC. Vertical target efficiency was 83–95 per cent depending on age, gender and type of household, if need was defined as dependency in instrumental activities of daily living. It was considerably lower, 35–61 per cent when defined as dependency in personal daily activities. Overall, long-term target efficiency in Sweden must be regarded as high. Few persons who need public LTC services fail to receive them.

Incidence of ADL Disability in Older Persons, Physical Activities as a Protective Factor and the Need for Informal and Formal Care – Results from the SNAC-N Project

Background The aim of the study was to examine 1) the incidence of disability in Activities of Daily Living (ADL), in persons 78 years and older 2) explore whether being physical active earlier is a significant predictor of being disability free at follow-up and 3) describe the amount of informal and formal care in relation to ADL-disability. Methods Data were used from a longitudinal community-based study in Nordanstig (SNAC-N), a part of the Swedish National Study on Aging and Care (SNAC). To study objectives 1) and 2) all ADL-independent participants at baseline (N = 307) were included; for objective 3) all participants 78 years and older were included (N = 316). Data were collected at baseline and at 3- and 6-year follow-ups. ADL-disability was defined as a need for assistance in one or more activities. Informal and formal care were measured using the Resource utilization in Dementia (RUD)-instrument. Results The incidence rates for men were similar in the age groups 78-81and 84 years and older, 42.3 vs. 42.5/1000 person-years. For women the incidence rate for ADL-disability increased significantly from the age group 78–81 to the age group 84 years and older, 20.8 vs.118.3/1000 person-years. In the age group 78–81 years, being physically active earlier (aOR 6.2) and during the past 12 month (aOR 2.9) were both significant preventive factors for ADL-disability. Both informal and formal care increased with ADL-disability and the amount of informal care was greater than formal care. The incidence rate for ADL-disability increases with age for women and being physically active is a protective factor for ADL-disability. Conclusion The incidence rate for ADL-disability increases with age for women, and being physical active is a protective factor for ADL-disability.

Formal and informal care of community-living older people : A population-based study from the Swedish National study on Aging and Care

ObjectivesStudy formal and informal care of community-living older people in the Swedish National study of Aging and Care (SNAC).DesignCross-sectional, population based cohort.SettingThree areas in Sweden: Municipality of Nordanstig, Stockholm and Skåne County.Participants3,338 persons ≥72 years.MeasurementsPatterns and amounts of informal and formal care by cognition and area of residence.Results73% received no care; 14% formal care; and 17% informal care (7% received both). In the whole study population, including those who used no care, individuals in small municipalities received 9.6 hours of informal care/month; in mid-size municipalities, 6.6; and in urban areas, 5.6. Users of informal care received 33.1 hours of informal care/month in small municipalities, 54.6 in mid-size municipalities and 36.1 in urban areas. Individuals with cognitive impairment received 14.1 hours of informal care/month, 2.7 times more than people with no/slight impairment. In the whole study population, individuals in small municipalities received an average of 3.2 hours of formal care/month; in mid-size municipalities 1.4; and in urban areas, 2.6. Corresponding figures for formal care users were 29.4 hours in small municipalities, 13.6 in mid-size municipalities and 16.7 in urban areas. Formal care users received 7.1 hours, and informal care users, 5.9 hours for each hour/month received by people in the study population as a whole.ConclusionsMore informal than formal care was provided. Informal care is more frequent in small municipalities than urban areas and for those with than without cognitive impairment. The relationship between data on the whole population and the data on users or care indicates that population-based data are needed to avoid overestimates of care.

Systematic pain assessment in nursing homes: a cluster-randomized trial using mixed-methods approach

BackgroundChronic pain affects nursing home residents’ daily life. Pain assessment is central to adequate pain management. The overall aim was to investigate effects of a pain management intervention on nursing homes residents and to describe staffs’ experiences of the intervention.MethodsA cluster-randomized trial and a mixed-methods approach. Randomized nursing home assignment to intervention or comparison group. The intervention group after theoretical and practical training sessions, performed systematic pain assessments using predominately observational scales with external and internal facilitators supporting the implementation. No measures were taken in the comparison group; pain management continued as before, but after the study corresponding training was provided. Resident data were collected baseline and at two follow-ups using validated scales and record reviews. Nurse group interviews were carried out twice. Primary outcome measures were wellbeing and proxy-measured pain. Secondary outcome measures were ADL-dependency and pain documentation.ResultsUsing both non-parametric statistics on residential level and generalized estimating equation (GEE) models to take clustering effects into account, the results revealed non-significant interaction effects for the primary outcome measures, while for ADL-dependency using Katz-ADL there was a significant interaction effect. Comparison group (n = 66 residents) Katz-ADL values showed increased dependency over time, while the intervention group demonstrated no significant change over time (n = 98). In the intervention group, 13/44 residents showed decreased pain scores over the period, 14/44 had no pain score changes ≥ 30% in either direction measured with Doloplus-2. Furthermore, 17/44 residents showed increased pain scores ≥ 30% over time, indicating pain/risk for pain; 8 identified at the first assessment and 9 were new, i.e. developed pain over time. No significant changes in the use of drugs was found in any of the groups. Nursing pain related documentation was sparse. In general, nurses from the outset were positive regarding pain assessments. Persisting positive attitudes seemed strengthened by continued assessment experiences and perceptions of improved pain management.ConclusionThe implementation of a systematic work approach to pain issues in nursing homes indicates that an increased awareness, collaboration across and shared understanding among the team members of the pain assessment results can improve pain management and lead to decreased physical deterioration or the maintenance of physical and functional abilities among NH residents. However, pain (proxy-measured) and wellbeing level did not reveal any interaction effects between the groups over time.Trial registrationThe study was registered in ISRCTN71142240 in September 2012, retrospectively registered.

Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries

BackgroundPeople with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals.MethodFocus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports.ResultsOverall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives.ConclusionFurther investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families.