Caregivers of people with dementia face negative treatment and discrimination by others, new research led by UCL researchers reveals.
The study, published in BJPsych Open, found that in addition to the known problems experienced by caregivers, those caring for people with dementia also develop stigma.
For the first time, researchers asked 70 family caregivers of people with dementia to take into account the FAMily Stigma Instrument (FAMSI), a measurement tool that takes into account how caregivers feel and what they believe people think about them. was asked to create a We also collected details such as age and gender of caregivers.
As a result, more than two-thirds of caregivers had experienced negative treatment from others when they were with someone with dementia (71.4%) and were no longer invited to family or social events (68.6%). %), indicated that they were shunned by friendship circles ( 68.5%)
Caregivers also reported that people were more likely to stop going home (78.6%) and treat them negatively, especially in public places (50.4%).
Dr. Jem Bhatt, UCL Psychology & Language Sciences, said:
“Experiencing stigma, being negatively treated and discriminated against by others, is a common experience for many family caregivers of people with dementia and is recognized as a global priority. .
“How we respond to this challenge will determine caregiver well-being in an ever-changing society that is heavily dependent on family caregivers.”
FAMSI also gave researchers the opportunity to ask about positive aspects of the caregiver role. Nearly half of the participants said being a caregiver made them feel needed (54.3%) and allowed them to build friendships with others in similar situations (64.3%). ).
As populations continue to age both in the UK and globally, the number of people living with dementia is set to grow exponentially over the next two decades. As a result, more people turn to caring for family members with this condition.
Researchers believe that measuring the impact of stigma on caregivers can help caregivers combat this problem in the future. We would like to test whether FAMSI can be used in an NHS setting as a way to identify those who are in need so that their needs can be identified and addressed.
Other potential uses of FAMSI are to develop intervention programs to reduce the experience of stigma and to help third-sector staff, health professionals, friends, and other family members make caregivers’ lives more comfortable. creating training and awareness materials to help
Dr. Butt said: Caregivers in our study feel stigma and need to take seriously the negative effects of stigma on them, such as feeling excluded or isolated.
“Our paper is a step towards understanding how caregiver stigma experiences can be changed.”
This study was funded by the Alzheimer’s Association and the Economic and Social Research Council.