VeSpaRo - Reconciling care and work for informal carers of people with dementia

Background

In Germany, approximately four out of five people in need of long-term care currently live at home and are primarily cared for by family members. In recent years, the proportion of informal carers who are employed has steadily increased. For many family carers, combining cargiving responsibilities with paid employment creates a field of tension that is predominantly experienced as burdensome. However, employment can also be perceived as a welcome change from caregiving duties and may thus contribute to relief, greater life satisfaction, and consequently to the stability of the care arrangement.

The specific situation of family members caring for people with dementia is often more demanding than that of other informal carers. While the topic of “reconciling caregiving and employment” has generally received considerable attention, the level of knowledge regarding the specific situation of relatives caring for people with dementia is less well developed.

The National Dementia Strategy in Germany addresses the reconciliation of caregiving and employment and commissioned a study on this topic.

Project Aims

The project examined the specific challenges and opportunities faced by employed informal carers in supporting and caring for people with dementia.

Methods

To achieve these objectives, a rapid scoping review was conducted as a first step. This review analyzed findings from both scientific and grey literature in order to assess the existing evidence base and identify gaps in research and support services. In a second step, working informal carers of people with dementia as well as experts from the field were interviewed to capture the specific challenges and opportunities involved in combining employment and caregiving in the context of dementia. Finally, in a workshop with experts from academia and practice, recommendations for action were developed, agreed upon, and prioritized. These recommendations are addressed to stakeholders in care practice, policymakers and society, as well as researchers.

Results

The project first provided an overview of key concepts and central research themes related to “opportunities and challenges in reconciling caregiving and employment in the context of dementia.” In the empirical part of the project, specific challenges were identified, such as the unpredictability and poor planning of care arrangements or the lack of tailored support services. Finally, gaps in research and support were identified and specified within the national context. The developed recommendations for action can serve as a foundation for improving care practice, informing political decision-making and societal conditions, and guiding further research on the topic.