By Emily Woodruff
What’s worse than finding out your loved one has Alzheimer’s? Getting an Alzheimer’s diagnosis yourself. And the stigma and social isolation that comes with the disease is no help when the loneliness starts to set in, according to dementia patients.
“There is a big stigma. I think there’s a fear of, ‘How do I talk to that person?’,” said Pamela Roberts, 61, who has dementia. “But I’m still me, I can still hold a conversation, I can still recognize people and even when I can’t, I still want to be talked to the same.”
Many support groups are aimed at caregivers, who do undergo a huge amount of stress. But Alzheimer’s patients themselves feel the effects of social isolation, which still persists despite efforts by support organizations, according to a survey of 2,300 people in the U.K.
The survey offered some sad statistics: Over half of those surveyed were not confident speaking with dementia patients or inviting them to a meal in their home. If confronted with a confused person with dementia in a public space, two-thirds said they wouldn’t know how to help them.
But those people have the exact same concerns as dementia patients themselves when they were asked about how they would respond to a diagnosis. Almost half worried that they would be treated like a child and over a quarter said they worried their friends and family would no longer want to see them.
And while more and more cities are becoming dementia friendly, it doesn’t take much to become a better dementia friend yourself, according to the Alzheimer’s Society, which released a guide on how to take action to help dementia patients.
“It doesn’t have to be complicated,” said Jeremy Hughes, Chief Executive of Alzheimer’s Society. “Committing to simple actions like being more patient or including a person with dementia in the conversation will all help.”
Here are the Alzheimer’s Society guidelines on how to talk to someone with dementia and make them feel included, developed with dementia patients themselves:
- Communicate: Speak to the person with dementia like you normally would. They’re still the person they were before diagnosis.
- Listen: Be sensitive about listening to people with cognitive impairment. They still have valuable insights.
- Inclusion: Continue to invite the person with dementia places. Friends and social engagement are stimulating and have been shown to possibly even delay the progression of the disease.
- Ask if they need help: If you encounter someone with dementia and they seem confused, simply ask if you can help them.
- Be patient: They might not do things the way they once did, or with the same swiftness, but they can still accomplish tasks.
- Ask: Don’t be afraid to ask questions. Taking the time to understand dementia shows that you are an ally.
- Caregiver support: Caregivers often go without help or support, but the dementia of their loved one can turn their life upside down.
Dementia patients said it can be the little things that other people don’t think of that make them feel alone: trying to get to a dentist appointment without a car, or being unable to follow a comedian’s joke when everyone else is laughing. Dementia patients can feel like they’ve lost control of who they are as the activities they used to enjoy become less accessible, but they say that family and friends can help ground them.
“Understand I’m still the person I always was, but now I have memory and cognitive problems,” said Shelagh Robinson, 77. My diagnosis of dementia doesn’t and shouldn’t define me. Nor should I be ashamed of what is beyond my control. I am still me. Realize I have value, skills, knowledge and experience.”
You can read the full report, “Turning Up the Volume: Unheard Voices of People With Dementia,” here.