The project

Dementia currently affects 55 million people worldwide and around 200,000 people in Portugal. It is a neurodegenerative disease that includes Alzheimer's disease, vascular dementia, dementia with Lewy bodies and a group of diseases that contribute to frontotemporal dementia.

Dementia affects people differently, depending on many factors. Our individual, family or socio-professional characteristics can influence our quality of life and the progression of the disease itself. Recent research tends to show, for example, that people with low income, with weak social and family support, or even people belonging to minorities, have a greater risk of being diagnosed late. The condition might progress at a faster pace, leading to an earlier death, often due to lack of support, access to care, or information.

Inequalities also affect informal caregivers. Caring for a person living with dementia is often experienced and accepted as an enriching and rewarding mission, but it also entails risks, particularly for those with few resources: increased levels of physical and emotional stress, financial costs, overload of time, social and occupational vulnerability, reduced quality of life and well-being are frequently mentioned consequences.

Inequalities are not only social, they are also spatial: the characteristics of the place where we live (e.g., greenery, traffic and pollution, public space quality), access to resources and opportunities that provides, also influence the trajectory of dementia, the quality of life of people living with dementia and of informal caregivers. A geographic perspective can fully reveal the combined impacts of socio-spatial inequalities on the lives of people with dementia and informal caregivers. Although there is increasing scientific evidence about various factors, until now these impacts have not been fully recognised.

SINDIA is an interdisciplinary project that brings together perspectives from human geography, psychogerontology, social gerontology, economics, and health sciences. The project's objectives are to:

1. Understand how socio-spatial inequalities affect people living with dementia and their informal caregivers throughout the disease trajectory;
2. ​Understand how we can promote measures, policies and strategies aimed at reducing avoidable and unfair health inequalities between populations and territories.

Throughout the project, we will examine spatial variations in the incidence of dementia in Portugal and identify existing social care and support. We will map and analyse unmet needs. We will apply a survey to people living with dementia and informal caregivers. The survey will be developed together with representatives of different support associations, with people living with dementia and with informal carers. The analysis of the data obtained will allow a better understanding of how socio-spatial inequalities affect different dimensions of the life of those who deal with dementia (the person with dementia and the informal caregiver) throughout the course of the disease: overload, quality of life, care, mental health, among other dimensions.

In parallel, we will develop a qualitative approach based on walking interviews and participatory mapping. By walking with people, with informal conversations and with the indications that they will provide us about the places they frequent, about the difficulties they face in their areas of residence, we hope we can better understand the way in which people adapt their daily practices and develop strategies to deal with their situation, within the context of the limitations they experience, and depending on the contextual characteristics of their place of residence and their socio-economic characteristics.