Improving socio-economic outcomes for persons with dementia and informal caregivers

Dementia is a progressive neurological disease. The number of people with dementia will double by 2050 in the European Union, from 10 million currently. As people with dementia lose their ability to care for themselves, care is often provided by informal caregivers, which mostly include family members, and more specifically women. In fact, 71% of the estimated time devoted to unpaid care for people with dementia is devoted by women. Women, especially those in vulnerable situations such as those from lower socio-economic backgrounds, often face additional pressures in managing caregiving responsibilities, which may exacerbate pre-existing inequalities. Furthermore, the provision of informal care has a negative impact on the economic and social life of the caregiver, as the time spent on the person with dementia is time not spent in employment or with other friends and family. Additionally, informal care is unpaid and has been estimated to have negative financial consequences for the caregivers themselves and the society as a whole. Studies have also shown that people with dementia and their informal caregivers have higher rates of depression than the general population.

While there is a lot of attention for clinical research, there is far less attention for the aspects surrounding the economic and social life, financial stability and the mental health of persons with dementia and informal caregivers. Many innovative solutions have been proposed, but few have been implemented on a wide scale. Social public policies with different design and funding that take into account the substitution and complementarities between formal and informal caregivers have been implemented to reduce the burden of the informal caregivers. What is needed, are systemic interventions focussed on improving these aspects for patients and informal caregivers and addressing the gendered nature of caregiving.

Priority should be given to scaling up and contextualising interventions that have already shown promise or effectiveness at smaller scale, rather than developing entirely new or untested solutions. Applicants should provide a robust methodological framework for evaluating the effectiveness of the interventions. Proposals should also assess the economic feasibility and sustainability of the interventions, including cost-effectiveness and potential integration into existing health and social care systems or policy frameworks. Proposals can focus on groups in vulnerable situations (e.g. migrants, lower socio-economic populations, people with disabilities) for gender-responsive and inclusive interventions. Social inequality analyses are therefore also recommended. Community based models (e.g. dementia-friendly cities, peer-support groups) can be included, as well as analyses of the quality of residence of people with dementia. Proposals are encouraged to include technology and digital tools in the scope of their work.

Considering the already high burden of dementia, interventions should be implemented in at least four Member States or Associated Countries. Considering the focus, it is of the upmost importance that informal caregivers are involved in the research throughout (in the design and implementation) to ensure that interventions are tailored to the real needs of caregivers and the individuals they care for.

Proposals should outline clear, evidence-based strategies for tailoring, deploying, and assessing these interventions at individual, family, community, and societal levels, while addressing the specific needs of different caregiver demographics.