Social stigma is still getting in the way of life for people with dementia and those who care for them.
A report from King’s College London found that local community health care services are perpetuating stigma that creates a barrier to care. The report was published in the International Journal of Geriatric Psychiatry. It was small, with data reported from 10 people with dementia, 11 caregivers and 16 caregivers whose loved ones had passed away.
When the team interviewed people with dementia as well as their caregivers from across the UK, they noticed inconsistencies between the needs of people with dementia (and their caregivers), and the support they’re getting.
The researchers said that people with dementia and their families had little guidance on getting further help after they received a diagnosis. They often had to push harder to get their needs met, while people with better resources seemed to get more support.
A lot of people said others don’t take dementia seriously as a condition that can limit life. The social stigma focuses on the symptoms of dementia related to mental state, people said.
The people interviewed also noted that emergency department visits were seen as a last resort. They agreed that the environments were confusing and caused anxiety in people who needed treatment. Even still, poor access to care meant that many people turned to the emergency department to get care — often because it was the path of least resistance to getting care.
“Like any life-limiting condition, dementia is worthy of dedicated care. Yet the quality of end-of-life care available and accessible to people with dementia varies across regions, ethnicities and levels of deprivation,” Katherine Sleeman, a palliative care researcher at the university, said in a statement. “As the leading cause of death in the UK today, we must ensure efforts focus on better supporting the near-million people living with dementia and the 700,000 family members caring for them.”
