Astrid Stephan

Bio: Astrid Stephan is an academic researcher from Witten/Herdecke University. The author has contributed to research in topics: Dementia & Long-term care. The author has an hindex of 12, co-authored 15 publications receiving 587 citations. Previous affiliations of Astrid Stephan include Wittenberg University.

Changes in caregiver burden and health-related quality of life of informal caregivers of older people with Dementia: evidence from the European RightTimePlaceCare prospective cohort study

Abstract: Aims. To describe differences in caregiver burden and health-related quality of life of informal caregivers of people with dementia in eight European countries and assess changes after transition from home to institutional long-term care. Background. Country differences in the experience of burden and health-related quality of life are rarely described. Design. Prospective cohort study. Methods. Data on burden and health-related quality of life were collected at baseline (conducted between November 2010–April 2012) and follow-up (after 3 months) using face-to-face interviews. Two groups of informal caregivers included those: (1) of people with dementia recently admitted to institutional long-term care facilities; and those (2) of people with dementia receiving home care. Statistical analyses focused on descriptive comparisons between groups and countries. Results. Informal caregivers of about 2014 were interviewed. Informal caregivers of people with dementia at home experienced more burden compared with informal caregivers of recently institutionalised people with dementia. Almost no differences in health-related quality of life were found between groups. Large differences between countries on outcomes were found. Informal caregivers of people with dementia who made the transition to an institutional long-term care facility experienced a statistically significant decrease in burden and psychological distress at follow-up. Conclusion. Cross-country differences may be related to differences in health and social care systems. Taking this into account, informal caregiver interventions need to be tailored to (country specific) contexts and (individual) needs. Findings highlight the positive impact of admission to institutional long-term care on informal caregiver well-being. (Less)

Formal support for informal caregivers to older persons with dementia through the course of the disease: an exploratory, cross-sectional study

Abstract: In European countries, knowledge about availability and utilization of support for informal caregivers caring for older persons (≥65 years) with dementia (PwD) is lacking. To be able to evaluate and develop the dementia support system for informal caregivers to PwD, a survey of European support systems and professionals involved is needed. The aim of this study was to explore support for informal caregivers to PwD in European countries. We investigated the availability and utilization of support in each of the participating countries, and the professional care providers involved, through the dementia disease.

Dementia care in European countries, from the perspective of people with dementia and their caregivers

Abstract: To investigate persons with dementia and their informal caregivers' views of inter-sectoral information, communication and collaboration throughout the trajectory of dementia care, in eight European countries.

Change in quality of life of people with dementia recently admitted to long-term care facilities.

Abstract: AimTo assess which factors are associated with change in quality of life of people with dementia who have recently been admitted to long-term care facilities. BackgroundMany people with dementia will be admitted to long-term care facilities at some point during their disease. It is currently unknown which factors are associated with improvement and/or deterioration of quality of life immediately following admission. DesignAn observational and longitudinal survey. MethodsData on 343 people with dementia who have been recently admitted to long-term care facilities across eight European countries were collected between November 2010-April 2012. Quality of life was assessed by people with dementia and their proxies using the Quality of Life-Alzheimer's Disease scale'. Explanatory variables included cognitive status, comorbidities, activities of daily living, depressive symptoms and neuropsychiatric symptoms. Descriptive and multilevel regression analyses were performed. ResultsBetter cognitive abilities at baseline were associated with a decrease in self-reported quality of life. Greater dependency and more depressive symptoms at baseline were associated with declined proxy-reported quality of life. Furthermore, an increased dependency and an increase of depressive symptoms between baseline and follow-up were associated with a decreased proxy-reported quality of life. On an individual level, three groups were identified, namely people whose quality of life: (1) decreased; (2) stayed the same; and (3) increased. ConclusionCognitive functioning, functional rehabilitation and treatment of depressive symptoms should receive special attention. However, quality of life of people with dementia does not necessarily decrease after institutionalization. (Less)

Causes of nursing home placement for older people with dementia: a systematic review and meta-analysis.

Abstract: Background: Up to half of people with dementia in high income countries live in nursing homes and more than two-thirds of care home residents have dementia. Fewer than half of these residents report good quality of life and most older people are anxious about the prospect of moving into a nursing home. Robust evidence is needed as to the causes of admission to nursing homes, particularly where these risk factors are modifiable. Methods: We conducted a systematic literature search to identify controlled comparison studies in which the primary outcome was admission to nursing home of older adults with dementia. Identified studies were assessed for validity and 26 (17 cohort and 9 case-control) were included. Qualitative and quantitative analyses were conducted, including meta-analysis of 15 studies. Results: Poorer cognition and behavioral and psychological symptoms of dementia (BPSD) were consistently associated with an increased risk of nursing home admission and most of our meta-analyses demonstrated impairments in activities of daily living as a significant risk. The effects of community support services were unclear, with both high and low levels of service use leading to nursing home placement. There was an association between caregiver burden and risk of institutionalization, but findings with regard to caregiver depression varied, as did physical health associations, with some studies showing an increased risk of nursing home placement following hip fracture, reduced mobility, and multiple comorbidities. Conclusion: We recommend focusing on cognitive enhancement strategies, assessment and management of BPSD, and carer education and support to delay nursing home placement.

Factors associated with the quality of life of family carers of people with dementia: A systematic review

Abstract: Introduction Family carers of people with dementia are their most important support in practical, personal, and economic terms. Carers are vital to maintaining the quality of life (QOL) of people with dementia. This review aims to identify factors related to the QOL of family carers of people with dementia. Methods Searches on terms including "carers," "dementia," "family," and "quality of life" in research databases. Findings were synthesized inductively, grouping factors associated with carer QOL into themes. Results A total of 909 abstracts were identified. Following screening, lateral searches, and quality appraisal, 41 studies ( n = 5539) were included for synthesis. A total of 10 themes were identified: demographics; carer–patient relationship; dementia characteristics; demands of caring; carer health; carer emotional well-being; support received; carer independence; carer self-efficacy; and future. Discussion The quality and level of evidence supporting each theme varied. We need further research on what factors predict carer QOL in dementia and how to measure it.

Hearing Their Voice: A Systematic Review of Dementia Family Caregivers’ Needs

Abstract: Purpose The number of Australians living with dementia is expected to increase from currently 332,000 to 900,000 by 2050. Around 200,000 unpaid caregivers are caring for community-dwelling people living with dementia, and therefore, supporting the caregivers' needs is of paramount importance. The aim of this systematic review was to understand the perceived needs of immediate family caregivers of community-dwelling older adults with dementia. Design and methods We examined qualitative studies that reported on the self-perceived needs of partner and/or offspring caregivers who were caring for community-dwelling older adults with dementia. Results Two themes were developed from 12 studies: caregiver needs related to the management of older people with dementia and caregivers' personal needs. The first theme further included four subthemes: information and knowledge needs; activities of daily living, instrumental activities of daily living and Behavioural and Psychological Symptoms of Dementia support needs; formal care support needs; and informal care support needs. The second theme consisted of two subthemes: the need to address caregivers' physical and psychological health and the need to manage caregivers' own lives. Implications The findings have important implications for the development of interventions that comprehensively address caregivers' individual needs. Caregivers' unmet needs highlight key areas for improvement in policy and service provision. The findings demonstrate the need for more rigorous qualitative studies exploring the perceived needs of partner and offspring caregivers respectively. Furthermore, examining the underlying relationships between different caregiver needs is warranted.