Ananga and Jo sit on a swingchair while holding hands and looking at each other

Taking each day as it comes in a relationship after a dementia diagnosis

Real stories

Ananga and Jo Moonesinghe discuss all things life, from how they met and getting married, to their experience with Ananga's Alzheimer's disease diagnosis and the couple's hopes for the future. 

Ananga and Jo Moonesinghe
09 March 2023
long read

Ananga and Jo Moonesinghe live in Luton. Anaga is 76, Jo is 67. They have been married for 48 years and have two children and five grandchildren. Ananga was diagnosed with Alzheimer’s disease in August 2019.

Looking back at our life

Ananga says: I was born in Dehiwela (Colombo), Sri Lanka. I came to live in England when I was 10 years old. I had to go to a local school. I didn't speak English then.

I married an English lady, Joanna, from Lancashire. We brought up our children to have a mix of cultures and be aware of their heritage.

Jo says:

I was 17 years old when we met. Ananga was in the services and was very handsome in his uniform.

when Ananga and I got together lots of people didn’t think that mixed marriages would work.

Ananga and Jo sit with Cathy, their Alzheimer's Society dementia support worker

Ananga and Jo feel supported by Cathy, their dementia support worker.

Living with dementia

Ananga says: I love to cook Sri Lankan food, but my wife won’t allow me to cook on my own as I leave the gas on. We sometimes cook together, and she can cook Sri Lankan favourites like fresh string hoppers and sweets made from potato.

I have problems finding words - I stutter - this is worse with stress. My speech has slightly deteriorated since lockdown, because I have not been able to talk to as many people as I would normally. My wife helps me. With patience, I am still happy to speak to other people. 

My family give the best support and take care of my needs.

We have had problems with the GP - lack of support and information. Without help of Alzheimer's Society we would have been so lost around diagnosis, support afterwards, and getting through the lockdown too.

Ananga and Jo sitting on their sofa

Ananga and Jo have been using Alzheimer's Society services since December 2019.

Finding vital dementia support

Jo says: Both Ananga and I were in denial at the start.

But, we promised each other we would take each day as it comes.

Alzheimer’s Society has given us so much. We would do anything to repay the help they have given us.

At the beginning, Alzheimer’s Society sent us lots of information. To be honest, it was too much to take in at the start, but I do appreciate it. 

Then, they referred us to peer support groups and a dementia café locally.

Alzheimer’s Society Dementia Support Worker, Cathy was wonderful for us. She got us a review from a speech and language therapist who came to help us.  

Alzheimer’s Society is a godsend. We don’t get any of that extra information from doctors or psychiatrists.

Ananga and Jo stand with their arms around each other in between two bookcases in their houses

Changing perceptions on dementia

Ananga says: Since my dementia diagnosis I have done a talk for people at the shopping mall to help them be more dementia aware.

I was a union rep which involved talking to people, especially politicians; they talk a lot and discard the concerns but if it’s related to their interest or their remit, they tend to listen.

There is a lot of publicity about other diseases like cancer but nothing about dementia. I would like to talk to politicians to educate them about dementia. 

I worked on the railways and still have good friends in the Luton and Thameslink area from doing that - and some would like to help the railway service be more dementia-friendly. I'd like to introduce Alzheimer's Society to them to enable that to happen.

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4 comments

Niro Jay
says
13 April 2023 at 9:37 pm
I can relate with Ananga. We are also from Sri Lanka and my mother is diagnosed with Dementia, 4 years now. We have had problems with the GP and the Dementia and Older Persons Mental Health Services who were were referred to. There was a lack of support and information from both the parties to be honest, they just visit once a month to tick a box really. Ananda was lucky to have been supported by the Alzheimer's society, I wish someone would have pointed us in that direction, especially during covid time.
Keith Knox
says
13 April 2023 at 1:28 pm
When I was diagnosed with early onset dementia 2yrs ago, it was devastating as I was a volunteer for Age UK as a information and advice worker and I thought I would have to stop. However, I continue with the role just helping to find tradesmen or pointing clients to other groups or facilities in the area. I haven't had much support from the NHS apart from the local psychiatric services who were working with me due to severe depression. Following a MRI scan on my brain, I was told that I had blood clots there, this was followed by the diagnosis. Being active has slowed the progression of the disease(I hope). Don't allow it to overcome you.
Leslie Porter
says
13 April 2023 at 9:48 am
There experience is not dissimilar to our own when when my wife had problems No support from Gp, 12 month wait to see the memory clinic, and we have no Admiral nurse. Just very little or no support
Janet Crawley
says
18 March 2023 at 2:00 pm
Ananga clearly experienced initial difficulties when diagnosed with dementia. It’s very concerning to read that there was a general lack of support and empathy at his GP surgery but, thankfully, Ananga plus his wife Jo found that The Alzheimer’s Society staff were kind and incredibly supportive so this must have been enormously helpful for them both.