Dementia is a challenge that millions of families face worldwide. The journey of caring for a loved one with dementia is often filled with unique obstacles and difficulties when memory and linguistic abilities deteriorate. Being deaf and using a national sign language adds to the challenges.
Minna Rantapää studied in her doctoral dissertation the changes deaf people with dementia experience and what kind of support family members and formal caregivers communicate. The dissertation is the first study that explores social interaction and support for deaf people with dementia in Finland.
Deaf people with dementia have been excluded from studies on dementia
Deaf people with dementia have been excluded from most studies on dementia. There is approximately 3000-5000 deaf people in Finland. Their unique challenges have not been fully recognized in health care. A recent doctoral dissertation shed light on the underrepresented group and aims to improve support services for deaf people with dementia, particularly those who use Finnish Sign Language (FinSL). The research reveals the significant hurdles deaf individuals face when they also have dementia and calls for a more inclusive and tailored approach to care.
"I wanted to understand how dementia affects deaf people who fall ill with it and who also use sign language. I explored the supportive strategies family members and formal caregivers use and how the support provided could be strengthened," tells the doctoral researcher Rantapää.
Deaf people with dementia experience same cognitive and linguistic changes as their hearing counterparts
Deaf people with dementia, like their hearing counterparts, experience cognitive and linguistic changes. They may struggle with comprehension, memory, and abstract thinking. They may even switch between their national sign language and spoken language but lose the thread of the conversation. This complexity adds another layer of challenges for family members and formal caregivers.
Deaf individuals with dementia become passive, lose track of conversations, and have difficulties participating in social groups. As the disease progresses, they tend to have fewer social relationships, potentially leading to isolation.
"One significant challenge for deaf individuals with dementia is the decline in finger dexterity. Sign Language is a visual-spatial language involving hand and body movements, facial expressions, and eye gaze. This decline impacts their ability to communicate effectively," Rantapää highlights.
Understanding the unique aspects of deaf culture and linguistic preferences is crucial for providing effective care and support. Caregivers, both family members and formal caregivers, are instrumental in supporting deaf individuals with dementia. They must navigate the changes in communication and memory, as well as understand the individual's unique needs and preferences.
"Communication strategies may vary depending on the person's level of dementia, but supportive, empathetic, and person-centered care is essential. It is necessary for us to design tailored support," the doctoral researcher stresses.
Creating a supportive environment for deaf people with dementia includes fostering a signing environment and improving communication between healthcare professionals and deaf individuals. Formal caregivers and family members need training in deaf culture, communication styles, and strategies to support individuals with dementia.
The doctoral dissertation calls to action the healthcare professionals, caregivers, and the wider community to recognize the unique needs and experiences of the deaf people with dementia. By acknowledging the cultural and linguistic context, we can create more supportive environments that cater to their specific communication needs, ultimately enhancing their well-being and quality of life.
The thesis of logopedics by Master of Health Scienses, M.Sc., Registered Nurse, Minna Rantapää Supportive strategies used by family members and formal caregivers in social interaction with deaf people with dementia will be examined 8.3.2024 at 13.00, at Biomedicum, Hall 2, Haartmaninkatu 8, Helsinki.
Minna Rantapää has worked for several years with deaf people with dementia. Her academic interests focus on social interaction and supportive communication in enhancing the wellbeing of deaf people with dementia.
The thesis was financially supported by Aivosäätiö, the Service Foundation for the Deaf, the Finnish Nurses Association and Terveystieteiden Akateemiset Johtajat ja Asiantuntijat.
