Supportive strategies used by family members and formal caregivers in social interaction with deaf people with dementia

The declining ability to interact that accompanies dementia poses significant challenges for both family members and formal caregivers of people with dementia. However, limited attention has been given to the experiences and needs of deaf people who use national sign languages (SLs) because deaf people have largely been excluded from many studies. Due to the unique nature of SL as a visual-spatial language, the methods used to explore dementia and establish diagnoses in hearing people cannot be directly applied. With this doctoral dissertation, I aimed to gain knowledge about social interaction of deaf people with dementia, focusing on Finnish Sign Language (FinSL) users, and to improve support services for deaf people with dementia. The study had three objectives: understanding the effects of dementia on deaf people, exploring strategies for providing support, and identifying factors that can enhance the abilities of family members and formal caregivers to communicate support. Family members and formal caregivers were chosen because they are typical interaction partners and support providers of deaf people with dementia. The dissertation comprises three published peer-reviewed articles. Study I gathered family members’ perceptions of changes in communication with deaf parents with dementia. Study II analyzed video recordings of interactions between formal caregivers (healthcare professionals) and deaf people with dementia in a dementia-specialized home of the Service Foundation for the Deaf. Study III interviewed formal caregivers to understand their perceptions of interaction with deaf people with dementia and strategies of supportive communication. The findings indicated various changes in language, interaction ability, memory, and behavior in deaf people with dementia. Eye contact was crucial for interaction among deaf people. Family members and formal caregivers need tools and skills to effectively support deaf people with dementia, emphasizing the importance of interpersonal communication competence along with specialized training in FinSL and dementia manifestation in deaf people. In conclusion, this dissertation argues that deaf people with dementia benefit from support provided in SL, enabling them to feel acknowledged and seen. This highlights the need for expertise in national SL and for specialized knowledge of deaf people with dementia for family members and formal caregivers. It also highlights the need for family members and formal caregivers to receive support based on expertise in national SL and specialized knowledge of deaf people with dementia.