Background

The first step to overcome for a socioeconomically marginalized person experiencing cognitive decline, is the recognition of being in the abyss of dementia. Powerful myths, such as dementia is a normal part of aging, hinder help-seeking and diagnosis, sending people late and in crisis for assistance. Global attitudinal survey data worldwide demonstrates a gap in knowledge, continued stigma and discrimination - especially in low-and middle-income countries (LMICS) - all of which amplify marginalization from care and treatment services. Even if symptoms are recognized, help is not only expensive, but located in urban areas; for neuro-evaluations, medications, and transportation, out-of-pocket costs can become substantial; as well, primary care is hardly trained to manage cognitive disabilities. Thus, families act in place of a non-existent long-term care system. Globally, it has been estimated that up to around 50% of dementia's economic costs arise from unpaid, informal levels of care, illustrating that affordable care does not exist in many areas. Women do most hours of care, which can be burdensome financially. Stigma and low levels of awareness on what dementia is can hinder diagnosis and treatment and the right to good care.

When families cannot access training, respite, cash and/or other in-kind benefits, the work becomes invisible, ongoing, and hazardous to their own well-being. There is evidence from LMICs that there is a high burden on caregivers—depressive symptoms, sleep disruption, social withdrawal, and reduced ability to stay in paid employment—especially when services are lacking. The absence of coordinated care means the family is in the position of providing many hours of daily supervision, managing behavioral and psychological symptoms, working out supply chains for medications, and dousing crises alone. Global guidance warns that structured and evidence-based packages containing education and skills training for carers, adaptations to the home environment, and early integration of dementia care into primary care, improve outcomes for the person and the caregiver; however, poor households are often constrained in financing and workforce to scale it to a sufficient coverage.

Thus, project “KindMinds” was launched with the aim to reduce the barriers between support systems and the caregivers who are at the forefront of helping individuals diagnosed with Alzheimer’s and dementia.