Carers of loved ones with dementia face stigma
Seventy caregivers were interviewed by UCL researchers about how they thought they were treated by others and about their own attitudes towards their roles.
Nearly two-thirds agreed that people should be embarrassed to interact with them, while only nine percent disagreed and 27 percent were neutral.
About 69 percent believe that their family can be excluded from social events. And just over half thought people might act negatively towards them when they were in public with a person with dementia they cared for.
Experts called for more support for the UK’s 700,000 unpaid carers, who often take on significant financial and emotional burdens to support a loved one.
Dr Jem Bhatt of UCL Psychology & Language Sciences said: “Family caregivers save our economy £13.9bn annually, but our efforts to understand the cost of stigmatizing their lives have been minimal.
“People’s negative attitudes and discrimination, in other words stigmatization, is common for many carers of people living with dementia and has been identified as a global priority.
“How we respond to this challenge will determine the well-being of caregivers in an ever-changing society that relies heavily on family caregivers.”
Participants in the study, published in BJPsych Open, had an average age of 60. Three-quarters of them were women and about half cared for their parents or spouse’s parents.
Despite the stigmatization, most of them did not feel negatively about their role and did not change their behavior as a result.
Only one in ten said they felt embarrassed for the person with dementia they were caring for, while three-quarters rejected the idea.
Many have also reported positive effects. Just over half said caring for people with dementia made them feel needed, and 64% said they made friends with others in a similar situation.
About 47% believe they are making a positive contribution to society.
The researchers hoped that their survey methodology, the Family Stigma Tool, could be used in the NHS to identify caregivers who need additional support.
James White, head of public relations and campaigns for the Alzheimer’s Society, which funded the study, said that all too often unpaid caregivers are left exhausted, stressed and struggling to make ends meet, facing exclusion and discrimination.
He said: “In a cost-of-living crisis, these hardships are only getting worse.
“Right now, there is simply not enough awareness of the widespread stigma faced by caregivers of people with dementia.
“The prevalence of dementia is on the rise, with 1.6 million people expected to be living with dementia by 2040. This means that the number of caregivers for people with dementia will also increase. This is a long-term challenge that requires long-term solutions.
“It is for this reason that we are campaigning for a 10-year dementia plan to respond to the challenges carers and people with dementia face.”
However, Karen Harrison Dening, head of research and publications at Dementia UK, said the study may not reflect the experience of all caregivers as the sample size was small and not ethnically diverse.
She added: “People living with dementia, as well as their family members who provide care and support, can sometimes perceive stigma in the way others respond to them.
“However, it is possible that some people just don’t know what to say to them. We often see this kind of reaction when someone has experienced a death or bereavement as they don’t know what to say.”
My wife’s dementia diagnosis was difficult, but I focus on the positives, says husband
Stephen Didcott has taken care of his wife Julie, 61, since she was diagnosed with Alzheimer’s at a young age in 2014.
Her severe symptoms mean she needs full support with daily activities, including eating and washing dishes.
Steven, 67, said: “The illness has also affected her speech – she can no longer communicate, although her level of understanding is slightly better. For example, when I ask her if she wants something or needs something, she can respond to express her feelings.”
The couple live in Great Missenden, Buckinghamshire, and visit Julie two and a half days a week to support her.
Stephen said that her diagnosis and his new role as a caregiver has “completely changed our lives in every way”.
He said: “We were both in our fifties when we faced the diagnosis and I don’t believe that any couple in our position could have imagined the future and retirement that we suddenly faced.
“Negatives include having to work part-time for some time, leaving work earlier than originally planned, giving up on hobbies and planned projects in life, gradually reducing the number of our friends than we expected, gradually moving closer to home and, most the main thing is limiting how much we can play a role in the lives of our grandchildren.
Despite the difficulties, Steven said he is trying to focus on how it was “an enriching experience”. complete strangers.
“In general, people are very kind to both of us. Of course, this affects social life, but in the vast majority of cases, this is due to the fact that we gradually withdraw into ourselves as Julie becomes unable to cope with situations, and not because someone excludes us.
“I have the opportunity to see friends for a few hours once a week, now that we have regular support.”
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