Changing perceptions of dementia in the Punjabi community

During the week, I go to a ladies’ group for Punjabi women in the community.

It’s held in a local community centre and run by volunteers. Many of us live alone, so it’s a chance for us to come together and talk, sing, dance, eat, and enjoy each other’s company.

It was about four years ago that I first had a feeling something wasn’t right with me.

At the group, I kept forgetting the other ladies’ names, losing my train of thought, or saying the wrong thing.

Some people would say, “you’re going pagal (mad)”. They were never trying to be mean, but they just didn’t understand.

There’s very little awareness of what dementia is in our community, so this negative attitude is quite common. There isn’t even a word for ‘dementia’ that directly translates into Punjabi.

In the film below, Bhagwant explains (in Punjabi ਪੰਜਾਬੀ) how she's been able to change perceptions of dementia in her community through raising awareness.

Looking for advice

I came across a mental health stand in town and asked if they had any information that might help me. They advised that I visit my doctor and tell them about the symptoms I’d been experiencing, as it could be dementia.

I had a bit of knowledge about what dementia was because we had someone come and talk to us about it in the ladies group. She spoke about the importance of getting a test done if you ever feel like something might be wrong. 

But because people in our community are scared to be labelled as going ‘mad’ or ‘crazy, we will often hide our symptoms.

At first, the doctor told me there was nothing wrong. From what the lady had said at our support group and from the research I had done online, I knew that my symptoms could be a sign of dementia. 

Seeking a diagnosis for dementia

I asked the GP to check, and they agreed to do an initial test where I was asked to answer some questions. I was then referred to a local memory clinic, where they did some scans and follow up tests.

Although my diagnosis experience was positive, I did find parts of the process quite difficult. I worried about forgetting appointments or tests, or even forgetting that I had ever gone to the doctor for help in the first place.

I told a close friend about what I was going through and kept her regularly updated. She was then able to remind me when my appointments were and if there were any follow up tests I needed to do.

At the memory clinic, I was diagnosed with Alzheimer’s disease. They clearly explained what it was to me, which helped me understand what I was going through.

I was relieved to be able to explain to my friends that I have Alzheimer’s disease, and that I wasn’t going ‘mad’ or doing things on purpose.

Adjusting to changes after my diagnosis

During the first year of my diagnosis, I received regular visits from a community health officer to help me organise and take my medications. 

This stopped due to the pandemic, but I do still receive calls from a community health officer to see if I’m ok and if there’s anything I need. These calls are really useful, and I have a good network of friends who I can go to for help.

I also use patches to help me manage my symptoms. I found these led to less side effects than the other medications I’d tried. They won’t make me better, but they do help me manage day-to-day.

I do sometimes forget the words that I need to use to explain what I’m thinking. And I get confused at things.

I once got a call from someone saying that I was involved in an accident, and it really worried me. I thought, “when did I have an accident?”, “Did I have an accident and I forgot?”.

I rang my friend and she told me it was a fake call. Things like that, they’re not nice for people living with dementia.

Living with dementia

I still go to my ladies’ group. Since my diagnosis, I’d like to think that I’ve been able to educate them a little by sharing my own experience. 

The ladies now better understand what dementia is and the impact my symptoms can have. This means I can let them know if I’m feeling confused or overwhelmed, and they’re able to help me.

I think that awareness of what dementia is and mistaking it for a sign of madness is a big problem in our culture.

I don’t hide my diagnosis from anyone, and I have no problem telling people about it. It’s allowed me to access medication to help me live well with dementia, raise awareness in my community, and feel understood.