The Care of Adults with Intellectual Disabilities: Informal (Family) Caregivers’ Perspectives

Abstract

Context: The care of adults with intellectual disabilities is marginalized and rarely studied in Poland. In recent years, this issue has gained particular importance, partly due to the increasing life expectancy of people with ID. This paper presents a study of the function of informal caregivers for adults with ID, comprising parents who provide regular, constant, physical and emotional support and assistance with everyday activities to their adult children. Due to cultural and institutional conditions, Polish society sets high expectations for families regarding the care of their dependent members. Social policy also mainly promotes informal care, with formal care only being supported to a very limited extent. The state delegates responsibility, including financial responsibility, to families. With the rapid aging of society, this situation poses great challenges. Methods: This study was conducted in the Łodź region of Poland; it used a qualitative approach, and a semi-structured interview was performed using the narrative elements technique. The main goal of the research was to understand the situation of caregivers to adults with an intellectual disability by identifying thematic categories in the respondents’ statements. The analysis of the qualitative data content made it possible to capture and present the participants’ personal perspectives on significant issues connected with their function in the context of providing care to an adult with an intellectual disability. A total of 12 interviews were conducted. The age of the respondents (caregivers) was 51–82 years old, and the individuals they were caring for were between 20 and 49 years old. Results: Based on the materials collected, 13 thematic categories and subcategories were identified, along with illustrative examples. The main categories concerned everyday functioning, health, uncertainty, relationships with others, feelings, time, and the macro level. For each category, subcategories were distinguished and illustrated by the respondents’ statements. The categories and subcategories were not completely distinct; sometimes they overlapped or complemented one another. Conclusions: For the majority of the respondents, the care of an adult with an intellectual disability had a negative effect on their well-being. As a consequence, they performed their caregiver’s role at the expense of their own lifestyle. Noticeable themes included “addiction” to caregiving, psychophysical fatigue, and the needs and difficulties resulting from this being “ignored” by the commonly understood social environment (including state institutions). Thus, the care of dependent adults with ID should be viewed on a broad human spectrum, that is, in consideration of the unique situation of those who remain under permanent care provided by family members, those who live alone, and those whose loved ones try to combine caregiving with their own private lives. This is becoming all the more important, as the number of seniors with intellectual disabilities will continue to grow in the coming decades.