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Seven things you should know about dementia according to carers

Carers of people with dementia on the things they think everyone should know about dementia and dementia care.

Dementia doesn’t just affect older people

“I wish people knew that dementia doesn’t just affect older people. My mum has young onset dementia. She often gets confused when we’re out together and she sometimes misunderstands social cues. She looks so young, so people don’t always understand that she has dementia”

– Rachel, who cares for her mum

It doesn’t mean that you are a different person

“I wish people would understand that just because you’re living with dementia, it doesn’t mean that you are a different person. Always treat the person living with dementia the same as you would if you were going out for a coffee or beer with a friend or loved one.”

– Steve, who cared for his friend Jim

Dementia does not just affect the person’s memory

“The main thing that people should know is that dementia does not just affect the person’s memory. It can affect all aspects of day-to-day life, including personal hygiene and daily care, financial management, loss of inhibitions, time management and even personality. I found it comforting to know that my mum was still there behind the dementia and that dementia was causing changes in her personality. Sometimes all you need is someone to understand what you are going through and to empathise. I always tell people how Admiral Nurses can support the whole family, and encourage them to call the Helpline.”

– Denise, who cared for her mum and is a Dementia UK Volunteer Ambassador

More people should know about young onset dementia

“I wish more people knew about young onset dementia – dementia in people under the age of 65. It’s incredibly difficult to get a diagnosis, and your GP may not offer immediate support. It’s a very traumatic time for the person with the diagnosis and family members. I’d recommend contacting the Dementia UK Helpline, as the specialist dementia nurses can offer support and signpost you to appropriate services.”

– Rob who cared for his wife, Jayne

How quickly dementia can take hold of your loved ones

“I wish I knew how quickly dementia can take hold of your loved ones. With my gran, it began gradually – but then suddenly her personality and memories started to erode very quickly. It is sad to see someone you love become a completely different person, knowing you will never have a normal conversation again. We always think we have plenty of time to talk to our family, but sometimes a cruel disease can come along and take away their personality and distort their memories.

I would urge everyone to spend time talking to their parents and grandparents and ask them all the things you want to, because there will come a time when they may not be able to answer you.

I wish I had asked my gran more about her early years and upbringing and her experiences of relocating from India to the UK. She had a whole life before she became my gran, and I wish I knew more about it. Even though our loved ones may be suffering with dementia and struggling to understand things, they are still the people we once knew. A tender touch on the shoulder or a loving hug can make them feel special and loved – and making them feel at ease and comfortable is one of the most important things we can do.

It is heartbreaking to see my gran decline, but I still cherish every moment I spend with her.”

– Ricky, whose grandmother has dementia

There is still so much you can do with dementia

There is still so much you can do with dementia, especially in the early and mid-stages. Things don’t change overnight, so keep doing all the things you love. Also, don’t be embarrassed to tell people. It will help them to understand and hopefully go some way towards breaking the stigma and taboo that can surround a dementia diagnosis.

– Penny, who cares for her mum

A person living with dementia might mask how they are really feeling

“I wish people knew that a person living with dementia might mask how they are really feeling. My mum hid her dementia well as she never wanted people to think she was weak or that she didn’t understand them. This was Mum’s superpower – she was an expert at it. It was also her downfall in the end, because it meant that nobody knew she needed help, especially during the Covid-19 pandemic when we couldn’t visit her. Just like children mask difficulties, adults with dementia know they are different but are often able to blag their way through situations even in the toughest of times.”

– Lisa, who cared for her mum