Background: Caregivers of people with dementia living at home (CPwDh) are likely to be affected by a range of health problems. However, CPwDh are often regarded as accompanying persons and receive less attention in research and care. Little is known about this population and their needs in Germany. However, better knowledge of CPwDH is needed to design effective interventions. Objective: The objective of this report is to describe the situation of CPwDh and highlight differences based on sex and living situation. Methods: This was a cross-sectional analysis of the psychosocial characteristics of participants in the GAIN trial, a cluster-randomized, controlled intervention trial investigating the effectiveness of a care management program. A total of nâ=â192 CPwDh were recruited in GP offices, memory clinics or through public campaigns in the German federal state of Mecklenburg-Western Pomerania. The inclusion criteria were an age of 18 years or above, being a CPwDh, written informed consent. In a comprehensive digital assessment, psychosocial variables, burden, and care needs were assessed. Results: Partners, women, and people living in the same household represented the majority of caregivers, and their mean number of needs was 8.7. Overall, participants indicated a mild to moderate burden. There are differences in burden based on sex and living situation, with caregivers living with people with dementia showing less burden and different psychosocial demographics. Conclusions: There is a need for interventions to reduce caregivers' unmet needs in the CPwDh. Such interventions should consider differences in sex and living situation to better address individual caregiver needs.
Caregivers , Dementia , Humans , Female , Male , Caregivers/psychology , Dementia/psychology , Dementia/nursing , Germany/epidemiology , Aged , Cross-Sectional Studies , Middle Aged , Aged, 80 and over , Health Services Needs and Demand , Needs Assessment
BACKGROUND: The aim of this study was to investigate the role of support from the social environment for the life expectancy in people with dementia beyond well-established individual demographic and clinical predictors over a period of up to 8 years. METHODS: The analyses are based on data from 500 community-dwelling individuals in Germany who tested positive for dementia and were followed up for up to 8 years. Life expectancy was examined in relation to perceived social support as well as well-established socio-demographic (age, sex) and clinical predictors (cognitive status, functional status, comorbidities), using Cox regressions. RESULTS: Greater support from the social environment reduced the risk of mortality (hazard ratio [HR]: 0.78; 95% confidence interval [CI]: 0.63-0.98), with the role of emotional support being particularly important. Furthermore, higher age was associated with an increased mortality risk (HR: 1.08; 95% CI: 1.05-1.11), while female sex (HR: 0.64; 95% CI: 0.48-0.85) and higher cognitive (HR: 0.96; 95% CI: 0.93-0.98) and functional status (HR: 0.91; 95% CI: 0.86-0.97) were associated with higher life expectancy. CONCLUSION: Our study provides novel evidence that less support from the social environment, especially emotional support, is a risk factor for shorter life expectancy in people with dementia-beyond known clinical factors. Not only the clinical and caregiving needs but also their psychosocial needs of individuals with dementia should be emphasised.
Dementia , Humans , Female , Dementia/diagnosis , Protective Factors , Social Support , Proportional Hazards Models , Life Expectancy
In Germany, there are 1.8 million people currently living with dementia, and the trend is rising. In particular, the health system at the transition from hospital to outpatient care is facing major challenges given the high increase in a difficult patient clientele. Legal efforts have been undertaken (sect. 39a of the Fifth Social Code Book [SGB V]) to close the care gaps in the discharge and transfer process. This article aims to provide an overview of the documentation process of the discharge and transfer management for people with cognitive impairments in everyday clinical practice according to SGB V sect. 39 para. 1a after the Discharge Management Act came into force. Furthermore, the manuscript answers the research question "How is the statutory discharge management of people with cognitive impairments (MmkB) aged 65 and over documented" and highlights further characteristics of the discharge documentation for MmkB starting with the transition from the inpatient setting to other care settings. In order to answer the research question(s), a qualitative content analysis of all discharge documents available at the time of discharge was carried out as part of the intervention study on cross-sector care management to support cognitively impaired people during and after a hospital stay [intersec-CM], which was funded by the Federal Ministry of Education and Research. The results of the analysis show that, despite legal efforts, there are currently no standardized, unified processes of discharge management for people with cognitive impairments that can be traced in writing. However, departments with a large proportion of vulnerable patient groups were able to offer valuable insights: for example, their discharge documents included a short social history. Further evidence-based research and development in the domain of discharge management for people with cognitive impairments remains essential.
Cognitive Dysfunction , Dementia , Humans , Patient Discharge , Germany , Hospitalization , Dementia/therapy , Cognitive Dysfunction/therapy
OBJECTIVE: The aim is to analyze pandemic-related effects on everyday life and psychosocial health in the understudied vulnerable group of cognitively impaired elderly people living at home. METHODS: Structured telephone interviews in 2020 (n+=+141) and 2021 (n+=+107) were used to survey over-65s with cognitive impairment (MMSE Ø 23.4). The results from the 2021 survey presented here reflect experiences and attitudes, effects on daily life and health care, and psychosocial burdens and resources. Longitudinal analysis of selected indicators of burden is provided for n+=+66. RESULTS: Even in the face of increasing concerns and moderate impacts on everyday life and health care, overall psychosocial health is proving to be good and largely stable over time. CONCLUSION: Respondents have high levels of personal and social resources, and their coping with limitations is characterized by acceptance and willingness to adapt.
BACKGROUND: Up to two-thirds of dementia care is provided by family caregivers who often experience high burden, little support and adverse health outcomes. Enabling and supporting family caregivers to provide care at home prevents early institutionalisation of the person with dementia and alleviates the economic burden of dementia in the long term. General practitioners (GPs), as the first point of contact, have a key role in identifying and managing burden and care needs of family caregivers. However, in routine care, this opportunity is often limited by time constraints and even if caregiver needs are recognised, detailed information about regionally available support and advice on healthcare services is often lacking. METHODS: This is a cluster randomised, controlled trial investigating the clinical use and cost-effectiveness of a digitally supported care management programme for caregivers of people with dementia (PwD). Five hundred family caregivers will be randomised at GP offices, specialist practices and memory clinics, with about n=250 participants per arm. Participants are eligible if they are the primary family caregiver of a PwD, are at least 18 years of age and provide informed consent. Participants in the intervention group will receive an individualised care management plan, which will be carried out by qualified study nurses in collaboration with the treating GP. All participants will receive a baseline assessment and a 6-months follow-up assessment. Participants in the wait-list control group will receive usual care. Starting at the 6 months' follow-up, the former controls will also receive an individualised management plan. Primary outcomes are the number of unmet needs (incl. the Camberwell Assessment of Need for the Elderly, CANE) and health-related quality of life (EQ-5D-5L) at 6 months. Secondary outcomes include caregiver burden (Zarit Burden Interview, ZBI), social support (Lubben Social Network Scale, LSNS), the use of medical and non-medical services (Questionnaire for the Use of Medical and Non-Medical Services, FIMA) and resource utilisation (Resource Utilisation in Dementia, RUD). The primary analysis will be based on intention-to-treat. Between- and within-group analyses and a cost-effectiveness analysis will be conducted to estimate the effect of the tablet PC-based care management programme. This trial is funded by the German Federal Joint Committee (G-BA) Innovation Fund. DISCUSSION: The findings of this trial will be useful in informing and improving current healthcare system structures and processes to support family dementia caregivers within routine care practices. TRIAL REGISTRATION: ClinicalTrials.gov NCT04037501 . Registered on 30 July 2019.
Caregivers , Dementia , Aged , Cost-Benefit Analysis , Dementia/diagnosis , Dementia/therapy , Humans , Quality of Life , Randomized Controlled Trials as Topic , Social Support , Surveys and Questionnaires
BACKGROUND: As older people are at increased risk of severe and fatal courses of SARS-CoV2 infection, they receive special attention, which, however, often refers one-sidedly to their need for protection. What is needed is a discussion that considers the subjective reality and resources as well as risks. OBJECTIVE: The study focused on the perspectives of older people. The aim was to shed light on their subjective experience of the corona pandemic. The questions were how they experienced the pandemic, the risks, consequences and protective measures, to what extent these affected their everyday life and how they dealt with it. MATERIAL AND METHODS: A total of 12 guideline-based telephone interviews were conducted in May and June 2020 with 9 women and 3 men between 77 and 91 years of age, who lived in their own homes, had impaired health and needed help and care. The data were evaluated by structuring content analysis. RESULTS: The respondents were generally concerned about the corona pandemic but considered their own risk to be low. They saw themselves as hardly affected by the immediate consequences of the crisis or severely restricted in their everyday lives. They experienced insecurity in social life and fear of loneliness was central. Overall, they considered the protective measures to be appropriate but criticized early cancelling, family contact restrictions and dealing with the dying. CONCLUSION: A moderate degree of direct personal involvement, acceptance and adaptability characterized the experience and handling of the corona pandemic. Resources and skills in dealing with the crisis become visible.
COVID-19 , Pandemics , Aged , Female , Humans , Loneliness , Male , Pandemics/prevention & control , SARS-CoV-2
BACKGROUND: The outbreak of the Corona virus is a challenge for health care systems worldwide. The aim of this study is to analyze a) knowledge about, and feelings related to the Corona-pandemic. Describe b) loneliness, depression and anxiety and, c) the perceived, immediate impact of the lockdown on frequency of social contacts and quality of health care provision of people with cognitive impairment during social distancing and lockdown in the primary care system and living at home in Germany. METHODS: This analysis is based on data of a telephone-based assessment in a convenience sample of n = 141 people with known cognitive impairment in the primary care setting. Data on e.g. cognitive and psychological status prior to the pandemic was available. Attitudes, knowledge about and perceived personal impact of the pandemic, social support, loneliness, anxiety, depression, change in the frequency of social activities due to the pandemic and perceived impact of the pandemic on health care related services were assessed during the time of lockdown. RESULTS: The vast majority of participants are sufficiently informed about Corona (85%) and most think that the measures taken are appropriate (64%). A total of 11% shows one main symptom of a depression according to DSM-5. The frequency of depressive symptoms has not increased between the time before pandemic and lockdown in almost all participants. The sample shows minimal (65.0%) or low symptoms of anxiety (25%). The prevalence of loneliness is 10%. On average seven activities have decreased in frequency due to the pandemic. Social activities related to meeting people, dancing or visiting birthdays have decreased significantly. Talking with friends by phone and activities like gardening have increased. Utilization of health care services like day clinics, relief services and prescribed therapies have been reported to have worsened due to the pandemic. Visits to general practitioners decreased. CONCLUSIONS: The study shows a small impact of the pandemic on psychological variables like depression, anxiety and loneliness in the short-term in Germany. There is a decrease in social activities as expected. The impact on health care provision is prominent. There is a need for qualitative, in-depth studies to further interpret the results.
COVID-19 , Cognitive Dysfunction , Aged , Cognitive Dysfunction/diagnosis , Cognitive Dysfunction/epidemiology , Germany/epidemiology , Humans , Pandemics , SARS-CoV-2
BACKGROUND: Due to the demographic change healthcare for older people is becoming more important. A key strategic document for the near future is the national dementia strategy (NDS), which defines four fields of action including promoting excellent research on dementia. The NDS will guide and influence the further development of dementia healthcare research in the coming years. OBJECTIVE: The current research on specific NDS topics is presented and an outlook on expected developments is given. MATERIAL AND METHODS: This article provides a narrative review in which concepts and examples for selected sections of the NDS are presented: funding and promotion of healthcare research, development of evidence-based prevention and healthcare concepts and transfer into routine care, support for people with dementia (PwD) and their caregiver, cross-sectoral networking, participation in dementia research and networks in healthcare research. These were analyzed with respect to future developments and concretized based on current healthcare and promotion models. RESULTS: Insights are given into the healthcare concept of dementia care management, rethinking regional healthcare models such as medicine and ehealth. The innovation fund and research practice networks are described as examples of current structural methods of evidence-based design of future healthcare. CONCLUSION: The NDS represents an ambitious agenda with very comprehensive goals and topics for the improvement of healthcare for PwD and will probably significantly influence healthcare research and thus healthcare in the future. Overarching, mutually influencing and strengthening components on the way to improvement of the situation for PwD and the healthcare system are translation, participation and networking in research.
Dementia , Health Services Research , Aged , Aged, 80 and over , Caregivers , Delivery of Health Care , Dementia/therapy , Forecasting , Humans
