We carry out epidemiological studies on different health related aspects of brain aging and the elderly. A summary of the main research findings are reported below:

Risk factors of Alzheimer’s disease and dementia

Multimorbidity and physical functioning

Mild cognitive impairment

Cognitive functioning


Health economy

Well-being in the elderly

Care and public health

Caregiver contributions in home care based dementia care - its consequences and health economical effects

The emerging elderly people in Bangladesh. Aspects of their health and social situation

The Kungsholmen project in Nordanstig



Risk factors of Alzheimer’s disease and dementia
It has been already been shown by us and by others that high blood pressure is a risk factor for dementia. Our group was the first to demonstrate that the use of antihypertensive drugs may decrease the risk of dementia and Alzheimer´s disease (Qiu et al, Am J Epidemiol 2001). We have now suggested a possible mechanism accounting for this finding: antihypertentensive drugs may counteract the combined effect on dementia due to the genetic risk factor apoE-e4 and high systolic blood pressure (Qiu et al, Neurology 2003).
We found that not only high blood pressure but also low diastolic blood pressure was associated with increased risk of dementia. The direction of causality remains unclear, as dementia pathology may lower blood pressure even some years before diagnosis (Qiu et al, Arch Neurol 2003).

It has consistently been reported that subjects with low education are at a higher risk to develop dementia and Alzheimer´s disease (Qiu et al, Arch Neurol 2001). We tried to verify whether this association was due to factors related to lower socio-economic status. An increased risk of dementia was found in subjects with only elementary schooling independently of their occupation-based socio-economic status or socio-economic mobility during life. These findings suggest that factors operating during the first two decades of life are relevant for the development of dementia in late life (Karp et al, Am J Epidemiol 2004).
After the first report of a 60% increased risk of dementia among subjects with poor or limited social network (Fratiglioni et al, Lancet 2000), we have confirmed that intellectual and social stimulation protects against dementia (Wang et al, Am J Epidemiol 2002). This result was based on the engagement in different leisure activities assessed 6 year before the dementia diagnosis. These findings were recently confirmed by three American research groups. The topic has been systematically reviewed in Fratiglioni et al, Lancet Neurology 2004.




Multimorbidity and physical functioning
Multimorbidity and disability are related to major outcomes such as mortality and institutionalisation (Agüero-Torres et al, J Clin Epidemiol 2001). A large proportion of nonagenarians are functionally independent (73%) despite their advanced age, and 19% have no diseases at all (von Strauss et al, J Am Geriatr Soc 2000). The gender distribution of morbidity, mortality and disability are modified by age. Women 90 years and older are more disabled than men of same age, partially due to the excess of dementia and other chronic diseases
(von Strauss et al, J Clin Epidemiol 2003).




Mild cognitive impairment
To differentiate normal age-related cognitive decline from impairment that will lead to dementia, a new entity has been suggested, denominated as Mild Cognitive Impairment (MCI). Most of the research performed until now is based on patients derived from clinical settings. We tried to verify the predictivity of the cognitive impairment in the non-dementia subjects. We found that only one third of these subjects will develop dementia in three years, whereas one third will remain stable or even improve. The improvers will not have an increased risk of dementia even if followed for three more years (Palmer et al, Am J Psychiatr 2002).
In order to identify a procedure that can lead to the early detection of dementia and AD in the preclinical phase, we tested the predictivity of a three-step procedure, which simulates daily clinical practice: a) reports of memory problems; b) administration of a simple cognitive test; c) assessment with a complete neuropsychological battery. Almost all persons (positive predictive value ranging from 85 to 100%) with memory complaints, impairment on the global cognitive test, and deficits in specific cognitive domains will develop dementia over 3 years. Unfortunately, this procedure can identify only 18% of all future demented subjects. These results have received much attention both in the research world (Palmer et al, BMJ 2003) and in the general public through news and media.




Cognitive functioning
Our research indicates that persons who will go on to develop AD show deficits in multiple cognitive domains (i.e., episodic memory, verbal fluency) up to six years before clinical diagnosis (Bäckman et al, Brain 2001; Small et al, Arch Neurol 2000). We have now established the existence of a preclinical period with cognitive deficits not only in AD, but also in vascular dementia (Jones et al, Dementia 2004; Jonsson Laukka et al, JINS and Stroke 2004). Persons that develop vascular dementia have reduced memory functioning up to 6 years before clinical diagnosis. We have also shown that mortality-related cognitive deficits generalize across different causes of death (Small et al, Psychol Aging 2003), that age differences are pronounced for episodic, but not for semantic, memory over the life span (Nyberg et al, Psychol Aging 2003), and that persons who will develop both AD and depression over three years have somewhat more marked cognitive deficits at baseline compared to those who will develop AD alone (Berger et al, Cortex 2004). All cognitive research that we have conducted within the Kungsholmen Project was integrated in an extensive review article (Bäckman et al, Aging Neuropsychol Cognit 2004).




In a project together with the Swedish National Board of Health and Welfare quality indicators for drug use in the elderly were developed (National Board of Health and Welfare 2003). The indicators have also recently been used in a computerised analysis of data from the ApoDos-database (National Board of Health and Welfare and Apoteket AB, in press), showing both extensive drug use and inappropriate drugs and drug combinations (see figure below). They are also employed in drug utilisation reviews in nursing homes throughout the country. These indicators were used in the Kungsholmen Project showing evidence of inappropriate drug use in both demented and non-demented elderly, but with different patterns (Giron et al, J Am Geriatr Soc 2001).

A study of the use of antidepressants in nursing homes showed deficient routines both for diagnosing depression and for evaluating the antidepressant therapy (Fastbom and Schmidt, Rapporter Äldrecentrum 2003). In collaboration with Äldrecentrum, drug use was investigated in elderly persons with multiple morbidity. The drug use was both extensive (on average 10 drugs per person) and of poor quality (Gurner and Fastbom, Rapporter Äldrecentrum 2002, 2004)
A study comparing the rural Nordanstig with the Kungsholmen population showed a higher use of cardiovascular (CV) drugs but a lower use of aspirin, suggesting an under use of CV prevention. Also the under utilisation of modern CV drugs in cognitively impaired elderly was confirmed (Klarin et al, Drug Safety 2003).
A longitudinal study of the Kungsholmen population showed that no one of the NSAID users developed Alzheimer’s disease (AD) during a 3 year follow-up, thus confirming previous findings of a protective effect of NSAID against AD. In contrast, a higher risk for AD was observed in apoE-e4-negative users of aspirin (Cornelius et al, Neuroepidemiology 2004).




Health economy
We have shown that costs for community care, informal care and total costs of care increase, while proxy-rated utility and quality of life decreases with the degree of cognitive impairment in AD patients (Jönsson et al, Thesis Karolinska Institutet 2003). Model simulations employed to simulate the progressive cognitive impairment of AD patients on costs and transition probabilities, show that even modest and short-term effects on the progression of AD can be associated with important cost-savings and gains in quality-adjusted life-years (Jönsson et al, Thesis Karolinska Institutet 2003).
In a study focusing on activities in terms of support in personal ADL (activities of daily living), Instrumental ADL, and supervision/surveillance according to the RUD instrument (Resource Utilization in Dementia), we found that support in IADL and supervision/surveillance constituted a great proportion of informal care, while support in ADL (which by tradition is the focus for assessments of informal care), was less than 1/5 of the total time (Wimo et al, Int J Geriatr Psychiatry 2000).




Well-being in the elderly

Well-being among the very old:
A survey on a sample aged 90 years and above

This study examined well-being among the very old and the factors believed to influence the three components of wellbeing called life satisfaction, positive affect, and negative affect. It also examined activity patterns, the factors related to activity, and the consequences of different types of activity on well-being. The study is part of the Kungsholmen project and covers 105 subjects that were 90 years and older, scoring 24 points or above on the Mini-Mental State Examination. Wellbeing was assessed with the Positive and Negative Affect Schedule and the Life Satisfaction Index-Z. Results show that personality emerged as the major determinant of well-being. In addition, this age group has a low activity level, which is affected by factors such as health, personality, and life events. Although, introverts cannot be turned into extroverts, the study suggests ways to try to directly enhance very old people's levels of life satisfaction and positive affect with reading groups, social support groups, and physical activity groups.

Researchers: Pernilla Hillerås, Agneta Herlitz, Anthony Jorm, Kjerstin Ericsson, Bengt Winblad, Jo Medway, Penelope Pollit.

Well-being and self-care strategies in aStockholm population (20-64 years).
The main objective of this research project is to study the importance of self-care strategies for well-being and mental illness, and to study how they differ between groups. A panel survey has been used, thus making the measurement of age, and time effects possible. The recruited participants complete a questionnaire designed to assess sociodemographic variables, social network, life events, working conditions, and health status. The questionnaire also examines psychological well-being as well as symptoms of psychiatric disorders. To evaluate the diagnoses from the questionnaire, psychiatrists and a psychologist interview a selected sample. The follow-up has already started. The implication of this study is to analyze the importance of self-care strategies in the development of mental illness. Knowledge concerning self-care strategies could help to improve the prevention of mental illness.

Researchers: Anna Hansson, Yvonne Forsell och Pernilla Hillerås

Well-being and drugs among the very old (85+)
The aim of the study is to evaluate drugs and the effect on well-being among the very old (age 85 and older). The study is a part of the Kungsholmen project. A series of instruments were used in the interview concerning well-being and also drug information with control for diagnoses which might influence well-being in the very old. The study will result in an increased understanding about the influence of drugs and experiences of well-being. The administration of drugs among the elderly living in nursing homes will also be evaluated, and what nurses do to make drug administration easier for the elderly will also be investigated. The result will increase our knowledge concerning subjective feelings of well-being and attitudes toward drugs among the very old. In addition, the result of present study can increase the knowledge and competence of those working in nursing schools, social districts, and nursing homes and, thus, foster a greater understanding of this group of very old adults.

Researchers: Margareta Westerbotn, Pernilla Hillerås, Hedda Agüero-Eklund, Johan Fastbom, Bengt Winblad




Care and public health

Family-based dementia care: Experiences from the perspective of spouses and adult children
Study I aimed to investigate how adult children (n=81) experienced their role as primary caregivers of parents suffering from dementia. They were compared with children of parents without dementia (n=102). Daughters and sons were interviewed about burden experienced, their co-operation with the informal and formal network, and their willingness to remain as caregivers during the progression of the disease or aging process. The results showed that the daughters reported more affection due to the caregiving role than the sons. About one third of the participants could not get relief from someone else. A vast majority of the children were not willing to remain as caregivers and care for the parent in the family home during the progression of the disease, even if they were employed as caregivers.

Study II describes 17 daughters´ present feelings after many years of caregiving. The motives that elicit and sustain their helping behavior towards parents with dementia were also investigated. Transcribed interviews were analyzed by means of coding and categorization. Despite the parents´ moving to an institution all the daughters continued to feel responsibility for the well-being of the elderly parent. The daughters still experienced constraints in their caregiving role and also feelings of loneliness. Most of the daughters could, however, express positive feelings in connection with caregiving. Affection and reciprocity emerged as the most common motives for caring.

The aim of study III was to compare subjective experiences of family caregivers of individuals with different disease diagnoses. Comparisons were also made concerning relationships, and between caregivers of persons living in different housings. Descriptive statistics were used to analyze interview data on 268 caregivers. The findings confirmed those of earlier studies, that caregiving most greatly effects caregivers of people with dementia. A surprising finding was that caregivers of visually impaired persons reported strain and negative feelings in relation to the relative, as well as burden due to the caregiving role. Significant results also showed that women more often reported negative affect as did family caregivers whose relative lived in an institution.

The aim of study IV was to describe which caring activities eight spouses performed when caring for a partner with dementia. The dyads were observed in their homes. A qualitative approach was chosen to discover qualities and describe patterns of spousal caregiving in dementia care. Findings from the study shed some light on the invisible aspects besides the traditional hands-on caregiving. The spouses were caring for as well as about their partners.

In the intervention study (V), family caregivers and volunteers were trained together in study-circles. Thereafter, the volunteers replaced the caregivers in the homes on a regular basis permitting the caregivers some relief from the demands of caregiving. Interviews were conducted with the participants to gather information about their training and relief-care experiences. The analysis of the transcribed interviews revealed that the study-circle provided the caregivers an opportunity to exchange experiences with other people in a similar situation and increased their knowledge about care providing. The temporary relief-care by the volunteers provided the relatives with feelings of security and relaxation. The satisfaction among the Circle Model participants was reciprocal. The volunteers also reported high satisfaction and appreciation for the knowledge received

Researcher: Wallis Jansson




Caregiver contributions in home care based dementia care - its consequences and health economical effects
The project describes caregivers' efforts toward demented persons living at home from a health economical point of view. Caregivers are interviewed with a structured questionnaire. Caregivers' efforts in terms of support in ADL, IADL, and surveillance are assessed in detail and in physical units and in the next step expressed in terms of costs of informal care. The fieldwork is almost complete. Doctoral student: Gunilla Nordberg.

Researchers: Eva von Strauss, Anders Wimo, Margareta Grafström, Gunilla Nordberg.




The emerging elderly people in Bangladesh
Aspects of their health and social situatio
Bangladesh is one of the twenty countries in the world with the largest elderly populations. This project aimed to establish a knowledge base about aspects of the health and social situation of elderly people in rural and urban Bangladesh. It also aimed to adapt existing instruments assessing health status in terms of gender sensitivity and cultural relevance in the cultural context of Bangladesh. A survey of 786 elderly (aged 60 years or older) men and women was conducted in collaboration with a local organization in Bangladesh.

Continuation of traditional norms in the elderly population
Socio-economic and demographic characteristics of elderly persons in Bangladesh indicate that: a high proportion of men (approximately 90%) were married while most women were widowed (67%); 98% of all elderly people reported having children; intergenerational co-residence with sons was common; and more than 70% of elderly men reported being in paid work while elderly women reported unpaid work.

Cognitive test for an illiterate population
The Bangla Adaptation of Mini-mental State Examination, BAMSE, a modified Mini-Mental State Examination (MMSE), adapted for the cultural context of Bangladesh and not requiring literacy as a precondition, demonstrated satisfactory test properties in comparison to MMSE. Association between the two instruments was significant (r=0.57), and the testretest reliability was good (r=0.70). More importantly, BAMSE was found to be less sensitive to age and education than MMSE.

Contextualizing functional ability
Modified assessment instruments of activities of daily living (ADL) and instrumental activities of daily living (IADL) indicated differential performance in ADL and IADL tasks by gender and region. Socio-economic status was found to influence IADL tasks only. Empirical data regarding type of help used and reason for not performing a task enables understanding of sociocultural and structural influence on functional ability. Based on this data, socio-cultural and structural factors are suggested to be strong determinants of task performance.

High prevalence of self-reported health-problems

More than 95% of the elderly people reported experiencing health problems, and most reported multiple health problems. More health problems were reported by women compared to men, and more were reported in the rural region compared to the urban. Socio-economic factors were found to have little influence on the reporting of health problems. Irrespective of age, sex, and area of residence, those reporting a greater number of health problems were more likely to report difficulty with at least one ADL task.

Support is mutual
Support from family members in old age was found to be strong in Bangladesh. The role of providers of support, i.e. emotional, practical, or material, was primarily shared between spouse, daughter, son, and daughter-in-law. While elderly people reported receiving support from their family members, they also reported providing support in the functioning of their own households, both financially and with household activities.

Researchers: Zarina Nahar Kabir, Bengt Winblad




The Kungsholmen project in Nordanstig

Since 1995, there has been a twin project of the Kungsholmen project that is ongoing in the municipality of Nordanstig, in the northern part of the county of Hälsingland. The project is entitled "The Kungsholmen Project and Nordanstig". The project is a collaboration between the municipality of Nordanstig, the Primary Health Care in Nordanstig, and the Stockholm Gerontology Research Center. About 920 persons aged 75 years and older participated in phase I of the project. Some features regarding rural conditions have been added to the protocol, i.e. measurements of distances to various social and medical resources. A new part of the Nordanstig project and the base project in Kungsholmen is that caregiver efforts are assessed in terms of support in ADL, IADL, and surveillance. In the next step, there is a plan to estimate these figures in monetary terms (costs). Time schedule: The database in phase I was completed in January-February 1998. Two doctoral students have been enrolled, and the database can serve as a basis for several theses. Phase II of the project began in 1999 and the fieldwork was completed during March 2001. Preliminary analyses have begun.

Principal investigator: Anders Wimo, GP, Associate Professor, The Primary Health Care in Bergsjö, Nordanstig.

Collaborators: Head of social services Gert Persson, MAS (chief municipality nurse) Britt Mari Sjölund, Nordanstig's Communitity. Professor Laura Fratiglioni, Associate professor Matti Viitanen, Professor Bengt Winblad, Dr Eva von Strauss RN, Stockholm Gerontology Research Center, Stockholm.


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