Understanding informal caregivers' use of assistive technologies in Mexico during their dementia caregiver experience

Dementia is a long-term progressive condition with no cure that is considered to be a major public health priority worldwide. Currently, 60% of people with dementia (PwD) reside in low- and middle-income countries (LMICs) and by 2040 the number will increase to 71%. Families from these countries are being overwhelmed by the increased numbers of cases as the depleted health infrastructures and lack of governmental support mean that families have to rely on informal caregivers (ICs) to provide essential support and care. By 2050, Latin American countries, such as Mexico and Brazil, will experience an increase of >400% in the number of dementia cases. The World Health Organization (WHO) stated in 2017 as part of their “Global action plan on public health response to dementia” that culture- and community-specific approaches need to be developed and implemented in LMICs. They argued that this need emerged from the results of various studies on LMICs that showed how each country interpreted dementia differently. Cultural interpretations have been shown to influence the dementia caregiving experience directly. However, only few studies have been conducted about ICs of PWDs from LMICs. Hence, the need to understand the complexities of the dementia caregiver’s experiences within LMICs. In-home technologies, such as Assistive Technologies (ATs), have been shown to be effective in dementia care to improve the quality of life of the PwD and alleviate the IC’s caregiver burden. However, only a few studies have evaluated the usefulness of ATs in LMICs and no research has been conducted on the experiences of ICs with ATs in LMICs. This thesis explores the lived experiences of ICs of PwD in Mexico, a country in which ATs are used as part of their caregiving role. The study adopted a phenomenological approach, the aim of which was to understand the role and impact of ATs in the caregiving role and caregiving experience. Nine ICs of PwD in Mexico participated in in-depth semi-structured interviews. The data were analysed using interpretative phenomenological analysis (IPA) in two parts: an idiographic analysis of the first-person accounts of each participant and a cross-case analysis that examined the convergences and divergences of their experiences across the group. The findings from the study revealed that, to a certain extent, all of the participants went through five stages during their lived experiences as caregivers. The ICs subconsciously divided the lengthy path of their caregiving experiences into two phases: pre-AT usage and AT usage. The stages were established as: 1) emotional triggers; 2) avoidance; 3) personal values assessment; 4) self-forgiveness; and 5) acceptance (i.e., of the disease). During the pre-AT usage phase (stages 1-4), participants attributed a combination of different negative feelings and double caring responsibilities as the factors that motivated them to acquire an AT and care for their own well-being, as well as that of the PwD. It was revealed during the second stage, the AT usage phase (stages 4-5), that the ICs’ interactions with ATs were complex. On the one hand, the participants concentrated on testing, accepting and appropriating the AT to fit their own needs. On the other hand, it was revealed that ATs mediated the experience and, as a consequence, influenced the ICs’ roles and caregiver experiences. This thesis provides a new, and in-depth, understanding of some of the complexities that derive from the dementia caregiver’s experience in Mexico, an LMIC. It also provides an insight into the human-technology relationship that develops from daily interactions with the AT and how it influences the essence of the caregiver experience. Recommendations are made for designers and developers of ATs for use in the care of PwD based on the findings from this study.