Physical functioning in old age: Temporal trends and geographical variation in Sweden

ADL disability is an age-related condition that leads to poor quality of life, increased health-related care costs, and increased mortality. The proportion of older adults are increasing worldwide, and it is therefore important both for society and the individual that research provide us with information about the process leading to ADL disability and how to identify persons at risk. The most effective design for following the aging process is found in population-based studies that include all older persons, both those living at home and those in residential care. This thesis uses data from three populationbased studies: the Kungsholmen Project (KP), the Nordanstig Project (NP) and the SNAC-N study. The aims of the thesis was to examine temporal changes in physical functioning in older adults, to identify underlying development of new disability and functional decline, as well as to explore geographical variation in physical functioning between urban and rural elderly habitats. We also wanted to describe the amount of informal and formal care in relation to levels of ADL disability. The ultimate aim was to identify factors suitable for prevention. Study I: We I compared two populations of older adults, 75 years and older (the KP and the NP) from different living areas (urban and rural) and found differences in ADL disability, morbidity and disease patterns. The most common health problem in both areas was cardiovascular diseases (39.9% in the urban area and 45.2% in the rural area). There were great differences, urban vs rural, in the prevalence of stroke (7.4% vs 14.0%), diabetes mellitus (6.3% vs 16.1%), and Parkinson’s disease (1.0% vs 3.7%). Having two or more diseases vs. no disease was more common in the rural area than in the urban area, odds ratio (OR) = 1.9, 95% confidence interval (CI) = 1.4-2.4. Living area differences (urban vs rural) were found in population attributable risk (PAR) for disability due to stroke (5.6 vs 32.2), diabetes mellitus (1.2 vs 6.1), fractures (1.4 vs 10.7), and hearing impairment (8.7 vs 22.0). Study II: Data were gathered from a population-based study of adults 60 years and older, the SNAC-Nordanstig (SNAC-N), and the study explored the association between ADL disability, muscle strength, disease severity and mortality. Upper and lower muscle strength decreased with increasing age, with a tendency for lower performance in women than in men. A significant association was found between ADL disability and having reduced lower muscle strength. Having an increased number of diseases increased the risk of being ADL disabled. Diseases with the greatest impact on ADL disability were musculoskeletal diseases, hypertension and dementia. ADL disability and being unable to perform the gait speed test were factors that increased the risk of death. Inability to perform the chair stand test or weaker grip strength increased the risk of death for men. Study III: Data from two populations, 78 years and older, the NP (1995-1998) and the SNAC-N study (2001-2003), were used to study time trends in the prevalence of ADL disability and survival, comparing two cohorts. The prevalence of ADL disability was stable from 1995-1998 to 2001-2002 for men, while women became more disabled in ADL over the time period, (OR 2.36; CI 1.12-4.94). No significant difference was found in survival time between the cohorts in either ADL-disabled or non-disabled persons. There was a tendency for increased survival for non-disabled persons in the SNAC-N study compared with the NP, although it was 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. Study IV: The aims were to examine the incidence of ADL disability, to explore whether being physically active earlier in life is a significant predictor of being disability free at follow-up, and to describe the amount of informal and formal care received in relation to ADL disability. Data were gathered from persons 78 years and older in the SNAC-N study. The incidence rates for men were almost the same in the age group 78-81 compared with the age group 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 months before the baseline examination (aOR 2.9) were both significant preventive factors for ADL disability. The amount of both informal and formal care increased with the number of ADL activities the persons were dependent on and the amount of informal care was greater than the amount of formal care. Conclusions: This thesis shows an increase in ADL disability due to increased age, and that women are more ADL disabled than men, but also shows how diseases affect ADL disability. The diseases that negatively affect ADL are often due to unhealthy lifestyle, e.g. physical inactivity, obesity and smoking, etc. The results show the importance of prevention of the factors that cause ADL disability, preferably already in midlife. The amount of both informal and formal care increased significantly with the number of ADL activities the persons required help with. Regarding prevention of becoming ADL disabled, it is of importance to find ways to postpone the onset of ADL disability so that we can live longer without disability

Optimizing access to and use of formal dementia care: Qualitative findings from the European Actifcare study

This paper reports on qualitative data from the Actifcare study investigating experiences, attitudes, barriers and facilitators concerning access to and use of formal care. A total of 85 semi-structured in-depth interviews were conducted in eight European countries. Results were analysed with a deductive content analysis, first within country and then integrated in a cross-national analysis. Overall, analysis of the in-depth interviews revealed two major themes with five subcategories. The results can be summarised in an optimal pathway for access to dementia care. This pathway includes fixed factors such as disease-related factors and system-related factors. In addition there are personal factors that are subject to change such as attitudes towards care. An important finding consisted of the necessity of having sufficient information about the disease and available care and having a key contact person to guide you through the process of finding suitable care while monitoring your needs. In addition, it is important to involve your social network as they can take on care-giving tasks. It is helpful to have a diagnosis (in most countries). Concerning decision-making, the person closest to the person with dementia is in the majority of cases the one who makes the ultimate decision to access and use services and he/she should therefore be supported in this process. These results provide insight into the factors that influence the pathway to formal care use and help professionals to enhance access to formal dementia care by focusing on factors that can be modified

Development of best practice recommendations to enhance access to and use of formal community care services for people with dementia in Europe: a Delphi process conducted by the Actifcare project

Objectives Home-dwelling people with dementia and their informal carers experience barriers impeding access to community care services. This study is a part of the Actifcare project where eight countries participated. The aim was to achieve consensus on best practice recommendations for enhancing access to and use of formal community care services. Method A Delphi consensus process was conducted. A total of 48 professional experts, 14 people with dementia and 20 informal carers rated the importance of 72 statements on a 7-point Likert scale. Consensus was based on the median and level of dispersion. Results Sixty-two statements reached consensus, resulting in three categories of recommendations. An appointed contact person was central in Recommendations to enhance access. Coordination and flexibility in setting and type of services were among the Recommendations to enhance use. Training of health care personnel and person-centred care were central Recommendations that can facilitate access or use indirectly. Conclusion The Actifcare Best Practice Recommendations suggest practical measures that can be taken by decision makers to enhance access and use of community care services, and thereby enhance quality of care and quality of life for home dwelling people with dementia and their informal carers

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

Abstract Background People 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. Method Focus 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. Results Overall, 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. Conclusion Further 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

Perspectives of policy and political decision makers on access to formal dementia care:Expert interviews in eight European countries

Background: As part of the ActifCare (ACcess to Timely Formal Care) project, we conducted expert interviews in eight European countries with policy and political decision makers, or representatives of relevant institutions, to determine their perspectives on access to formal care for people with dementia and their carers. Methods: Each ActifCare country (Germany, Ireland, Italy, The Netherlands, Norway, Portugal, Sweden, United Kingdom) conducted semi-structured interviews with 4-7 experts (total N = 38). The interview guide addressed the topics "Complexity and Continuity of Care", "Formal Services", and "Public Awareness". Country-specific analysis of interview transcripts used an inductive qualitative content analysis. Cross-national synthesis focused on similarities in themes across the ActifCare countries. Results: The analysis revealed ten common themes and two additional sub-themes across countries. Among others, the experts highlighted the need for a coordinating role and the necessity of information to address issues of complexity and continuity of care, demanded person-centred, tailored, and multidisciplinary formal services, and referred to education, mass media and campaigns as means to raise public awareness. Conclusions: Policy and political decision makers appear well acquainted with current discussions among both researchers and practitioners of possible approaches to improve access to dementia care. Experts described pragmatic, realistic strategies to influence dementia care. Suggested innovations concerned how to achieve improved dementia care, rather than transforming the nature of the services provided. Knowledge gained in these expert interviews may be useful to national decision makers when they consider reshaping the organisation of dementia care, and may thus help to develop best-practice strategies and recommendations.publishersversionpublishe

"Longing to be independent again" - A qualitative study on older adults' experiences of life after hospitalization

It is important to support older adults' independence after hospitalization and, thus, to increase their perceived quality of life. The present descriptive study took a qualitative approach and aimed to describe older adults' experiences of their life situation after hospital discharge. Fifteen individuals (≥65 years) from two regional hospitals in central Sweden were interviewed between October 2015 and January 2016 in their own home following hospital discharge. The interview data were analyzed using manifest and latent qualitative content analysis. The analysis revealed one theme: "Longing to be independent again" based on four categories: `Dependent on other people and aids´, `Obstacles, impediments and limitations in daily life´, Adapt to the situation´ and `Psychological and physical values´. Understanding older adults' experiences of life after hospitalization is also a prerequisite for being able to provide person-centered care

Factors associated with improvement in depressive symptoms among older persons after hospitalisation – a prospective design with two follow-ups

Background Depression is a common disorder in old age and increases with hospitalisation. The aim was to investigate whether improvement in depressive symptoms after hospitalisation is associated with education level, age, gender, living situation, self-efficacy, activities in daily living and quality of life by (1) examining the prevalence of depressive symptoms at baseline and at 1st and 2nd follow-up (2) examining different factors? association with depressive symptoms at baseline and (3) examining different factors? association with improvement in depressive symptoms at baseline and at 1st and 2nd follow-up. Methods The study consisted of 145 patients, 65 years and older. Data were collected between February 2015 and September 2016 through interviews conducted using structured protocols. The instrument used was Katz index of ADL, Geriatric Depression Scale-20, Life Satisfaction Questionnaire and the General Self-Efficacy Scale. The participants were interviewed before discharge from hospital, after 1.5 month and after 3 months. Results The prevalence of depressive symptoms in older persons was high after hospitalisation. Factors associated with improvement of depressive symptoms after hospitalisation were higher educational level, improvement in activities in daily living and quality of life. Non-significant results were found for improvement of depressive symptoms and gender, age, living situation or self-efficacy. Conclusions Depression is a common health problem in older persons, especially after hospitalisation. It is therefore important that healthcare staff screen older persons for depression during hospitalisation, as this allows identification of those in need and a possibility to help them in an appropriate manner. Persons with lower educational level and depressive symptoms need special attention

Pain prevalence among residents living in nursing homes and its association with quality of life and well-being

Background: Pain is common and often more complex to assess among nursing homes residents with cognitive impairments. Thus, more research is needed of different pain assessment methods in elderly care and how these assessments outcomes are related to quality of life, as there mostly should be a negative relationship. There is a risk that pain are under diagnosed among persons with cognitive impairment. Aim: The aim was to describe and compare pain prevalence among nursing home residents (1) using different pain assessment methods (2) in relation to cognitive status and to (3) examine associations between pain and quality of life or well-being. Methods: A cross-sectional correlational design was used, participants were 213 nursing home residents and data were collected through interviews using standardised protocols. Instrument used were Katz index of ADL, Mini-Mental-State-Examination, Quality of Life in Late-Stage Dementia scale, WHO-5 well-being index, Numeric Rating Scale and Doloplus-2 scale. Results: The results showed high pain prevalence, but no significant difference based on cognitive level. Pain classification at the individual level varied somewhat when different instruments are used. The results indicated that use of a single-item proxy-measure for pain tends to show higher pain prevalence and was not statistically significant related to quality of life. The relationship with quality of life was statistically significant when self-rated pain instruments or multi-component observation were used. Conclusions: The study shows that it is difficult to estimate pain in residents living at nursing homes and that it continues to be a challenge to solve. Self-rated pain should be used primarily to assess pain, and a multi-component observation scale for pain should be used when residents are cognitively impaired. Both self-rated pain and multi-component observation also support the well-known link between pain and quality of life. Single-item proxy assessments should only be used in exceptional cases