Bhagwant and some of the women from her community group, holding hands and singing

Changing perceptions of dementia in the Punjabi community

In Bhagwant's Punjabi community, there is little awareness of dementia. After being diagnosed with Alzheimer's disease, Bhagwant stresses the importance of awareness and education in communities like hers, and why it's best to seek help if you're worried about dementia.

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.

Bhagwant carrying a teapot to her community group in the centre

The ladies group for Punjabi women means a lot to Bhagwant

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.

Dementia information in Punjabi (ਪੰਜਾਬੀ)

Learn more about dementia in our Punjabi (ਪੰਜਾਬੀ) resources (in Gurmukhi script).

Learn about dementia

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.

Bhagwant sat in a chair in her living room, looking concerned

Bhagwant wanted to know what was causing her symptoms

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.

Bhagwant reading, concentrating with a pencil in her hand

Getting a diagnosis has helped Bhagwant manage her day-to-day symptoms

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.

Our dementia advisers are here for you.

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.

Bhagwant in her ladies group, sat in a chair smiling and clapping

'I’d like to think that I’ve been able to educate them a little by sharing my own experience,' says Bhagwant

Why is it important to get dementia diagnosed?

Reasons why it's worth getting tested for dementia, and the benefits of getting a diagnosis.

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2 comments

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More awareness is always helpful with Everyone .
Shobna Gulati , actress appearing in Dinner ladies ,Coronation street ,Loose Women ,My name is Leon & others ,
Written a book ....Remember Me .
About her mother changing personality with onset of dementia .Seems the big D is bigger than the C!

I would like to thank Bhagwant Kaur for her commitment to bringing awareness about dementia in the Punjabi community. By relaying her own story, people will be able to relate and not look at themselves or others as 'mad'. They can truly support each other and try to disperse and finally get rid of the stigma and taboos it brings.

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