In Germany, the majority of people with dementia is being cared for at home. The community-based care system is not suited very well to meet the individual needs of people with dementia and their informal caregivers in the best possible way. Considering the demographic change, new models of care become increasingly interesting. For example, regional dementia care networks: specialists and service providers with different professional expertise work together in supporting people with dementia and their families.
Research questions and methodology
The study – a multidimensional, multi-professional evaluation of dementia care networks – aimed to determine factors of successful networks. The different basic conditions as well as different types of cooperation under which dementia care networks operate were taken into consideration. Baseline data were collected in interviews with more than 500 people with dementia and their caregivers between January and August 2013 with follow-up interviews being conducted 12 months later. Furthermore, qualitative data were collected in interviews with the coordinators of the 13 participating dementia care networks, followed by semi-structured group interviews with different stakeholders of these networks in spring 2013 and follow-up questionnaires 12 months later. Research questions:
- Which supports do people with dementia and their informal caregiver utilize?
- What is life like with dementia or living with a person with dementia? Where is additional support needed?
- How do dementia care networks differ from one another?
- How and why are dementia care networks successful in their work?
In order to answer these questions extensive data on, e.g., quality of life, dementia, supports in managing day-to-day life, stress, medical care, burden, and on social isolation were collected. Also, data regarding the organizational structures of dementia care networks (e.g., number of co-operations, degree of networking, and conveyance of specific knowledge), and health economic data (sponsor, financing structure) were collected.
At the DZNE site Witten the focus is on aspects of informal caregiving and knowledge management in dementia care networks:
- How do informal caregivers organize the care of a person with dementia at home?
- In which aspects of care do informal caregivers of people with dementia experience burden and how do they experience burden?
- How do dementia care networks translate and disseminate knowledge?
To answer these questions, caregiver burden was assessed using the ”BIZA-D” (“Berlin Inventory of Caregivers’ Burden of Dementia Patients”) and care arrangements were evaluated using the “D-IVA” (“Questionnaire for Assessing Care Arrangements for People with Dementia”). Qualitative data on knowledge management were collected using semi-standardized one-on-one interviews with dementia care network coordinators, followed by semi-structured group interviews with stakeholders of these networks. In close cooperation with the IfaS in Stuttgart an interview manual was developed at the beginning of the project to gather quality data on aspects of knowledge management.
The DemNet-D study and data analyzing was finalized successfully. Results and recommendations were made available to the public during expert workshops. Research findings were also translated in practice related information and disseminated by a “dementia toolbox” https://demenznetzwerke.de/
The toolbox offers support to anyone interested in setting up or optimizing dementia care networks.
The findings of the DemNet-D Study suggest that dementia care networks can optimize the support of people with dementia and their caring relatives by informal as well as formalized processes. Due to these findings, German policymakers now decided to make funding available for dementia care networks from January 2017 on.