"It’s an honour to care for my mum": Nia’s Story

When Nia’s mother began showing signs of memory loss and confusion, Nia suddenly found herself navigating a completely new reality. 

Following a referral to a memory clinic in South London, her mother, then 67, was officially diagnosed with dementia. For Nia, 31, the news was devastating. Nia describes her mum as her best friend. 

Nia said, "I think when you get the diagnosis, it's very isolating. For me to hear that about my mum... it kind of feels like your world is ending because you don't know what that means. 

“You feel alone because almost instantaneously after that diagnosis, you become that person's carer."

Nia found herself constantly on high alert, dealing with what she calls needing a "second brain" to anticipate her mother's needs and manage her safety. She also had to navigate the sudden influx of responsibilities, from registering as a carer to setting up power of attorney.

Finding support through research

At the final memory clinic meeting to discuss her mother's diagnosis and care plan, Nia was offered the chance to take part in a National Institute for Health and Care Research (NIHR)-funded trial called iACT4CARERS.

The trial was led by researchers at the University of East Anglia (UEA). It aimed to support family carers of people living with dementia across the UK. 

The programme offers internet-delivered therapy. Because it was online, Nia, who has a hybrid work schedule in London, could fit the sessions into her lunch breaks or evenings without leaving her mother’s side.

Rather than trying to eliminate the very real distress of a dementia diagnosis, the sessions focused on giving carers the tools to handle difficult feelings effectively. For Nia, the timing was crucial.

Nia added: "After a diagnosis, you're kind of thrown in the deep end and left to fend for yourself, and you have a range of emotions that you start to feel.

“The therapy really validates how you feel. It acknowledges that it’s okay to feel guilty, sad or frustrated."

“Calming down and taking a deep breath”

One of the most profound takeaways for Nia was learning how to stop fighting her own emotions. During the programme, she learned an analogy that changed her perspective on emotional suppression.

"They used this analogy of a ball in water. If you push the ball underwater and hold it there, eventually it's going to pop back up. That's what happens with your emotions if you don't process and deal with them."

Recently, while trying to help her mother pack for a 3-week holiday to Grenada, Nia found herself surrounded by clothes and felt completely overwhelmed. Instead of pushing her frustration down, she used the tools she learned  through the iACT4CARERS programme. She allowed herself to cry, acknowledged her own frustration, and communicated how she was feeling to her partner.

The trial has been hailed as a success. A paper published in July revealed that carers using the platform had lower levels of anxiety and depression.

Nia said: "You have to acknowledge that you feel upset or guilty, and you can't feel bad for feeling the way that you do. 

“It's not anyone's fault- she doesn't have the same capability anymore. It's about recognising that, calming down and taking a deep breath."

A message for World Alzheimer’s Month

Today, Nia focuses on living in the present rather than worrying about what the future holds. She prioritises creating joyful memories with her mother- whether that’s taking her to the cinema, going bowling or doing pottery together.

For World Alzheimer's Month, Nia is sharing her story to encourage other carers, particularly those from underrepresented backgrounds to seek help early.

Nia said: "People of colour, especially from Caribbean and African backgrounds, typically might not always want to acknowledge that someone is changing." 

"But if you don't get help, you could hinder them. When you're upset and flustered, and you take it out on them, it's really distressing for them as well. You have to look after yourself first to put yourself in the best place to be the best carer you can be."

Despite the immense challenges, Nia views her role as a carer with profound gratitude.

"It is an honour to be a carer. You've been given the responsibility to look after someone, and no matter what you achieve in life, I think you'll reflect back and be proud that you cared for someone so well."

“A powerful tool to support family carers”

The iACT4CARERS trial involved 496 volunteers, including 77 who took part through Join Dementia Research. Thank you to all of those who took part. 

Lead researcher Professor Naoko Kishita, from UEA’s School of Health Sciences, said: “We hope this system could be a powerful tool to support family carers, who we know are vulnerable to mental health issues. Because it’s online and needs only minimal professional support, it has strong potential to be rolled out across the UK and, potentially, internationally, to support carers in their important work.”

Interested in taking part in dementia research?

You can register your interest in other vital dementia research via the Join Dementia Research website. By taking part, you could make a huge difference for future generations.