People with memory illnesses and their spouses as actors in the hybrid care model

Abstract

Objective: The study analysed how its participants positioned themselves and other people as actors in daily life, and what matters they portrayed as meaningful in seeking and receiving support in daily life.Background: Family care has traditionally played an important role in elder care in Finland. Current policy goals will further increase the importance of family care, yet research on how people with memory illnesses and their spouses perceive care arrangements is scarce. Method: The study drew from theory of relational agency and positioning theory. The data came from semi-structured, in-depth interviews (10) of home-dwelling people diagnosed with a memory illness and their spouses. The interviewees’ age varied from 62 to 88. The analysis focused on the participants’ self-descriptions and descriptions of their experiences and actions in relation to informal and formal care arrangements. Results: The participants with a memory illness positioned themselves together with their spouses as a couple, as satisfied service recipients, as active and knowledgeable service users, or even as consumers who critically evaluated social and health care services. People with memory illnesses are capable of expressing their self-reflexive agentic self and adopting different positions to that of a person with dementia. Conclusion: There is need to better acknowledge agency of people with memory illnesses and to develop different data collection and analysis methods that enable them to convey their views.

Continuity, coping and finding meanings in everyday life: Storytelling by family members of people with young onset dementia

“…This storyline also included the use of a variety of abilities which aided in action, and compensation was achieved by constantly considering the needs of a loved one by adapting to different situations. This supports the notions by Jolanki et al (2023) of some couples who address dementia by enlisting the support of a variety of helpers from different sectors, such as from their own social network or public services. In the adaptive storyline, resisting issues are mentioned, such as the interruption to the daily life of a family due to the symptoms of dementia or living with the thought of an unknown future due to the progression of the YOD.…”

“…However, each family member balances between roles and take on a variety of roles, such as a service receiver, member of a network, or active citizen, etc. (Jolanki et al, 2023). Role reversal does not occur immediately, but instead involves battles of original roles and worry, reactions, needs, expectations, etc.…”