Real stories

‘Just because people have dementia doesn’t mean they are useless’

In the film The Matrix, the machines harvest human beings and use them as batteries,’ says Mick Lambert, who lives with vascular dementia.

When they run out of power they throw them away, and that’s what society does to people with dementia.

Mick felt very much that way when he got his dementia diagnosis at 54.

‘It was 2017 and I’d had a stroke which put me in hospital for 13 days,’ he says.

‘10 months later, someone came knocking at my door and put a letter in my hand and walked away. I opened it and the diagnosis was inside.

‘I was shocked and then panic came in. I was a single parent to my daughter Kezzie, who was 15 at the time, and I thought, “What’s going to happen to her?”’

Devastating news

Mick was taken aback at the impersonal way he was delivered this devastating news.

‘It would have been a lot better if I could have had a conversation about it. At least I would have had the chance to ask questions.’

Support workers came to the house but left Mick feeling low, as he says, ‘They just told me all the things I wouldn’t be able to do.’

His depression deepened when DVLA removed his driving licence and he lost his job soon after.

London Underground moved Mick from his night job repairing escalators to delivering packages during the day.

‘It was completely and utterly out of my comfort zone,’ he says.

Within a few months, he was medically retired and forced to apply for benefits for the first time in his life.

‘I was in a deep hole. I was in bits, really.’

Something practical

All that changed when Sarra Downes, Dementia Adviser at Alzheimer’s Society, came into his life. That was four years ago.

‘When I met Sarra, I felt really low and didn’t trust anyone. I asked her, “Are you here just to tick boxes?”

She asked, “What kind of things are you struggling with?”

‘I told her I never trusted myself to cook anymore as I would forget I had something in the oven, and that I had burnt my feet in the bath because I forgot to check the water.

‘She said, “Give me five minutes,” and disappeared. Then she came back with a thermometer and a timer. 

‘Just doing something practical made me feel I could trust her and open up.’

Spark inside

It wasn’t long before Sarra persuaded Mick to go on his first Memory Walk and meeting others with dementia sparked something inside him.

Since then, Mick has thrown himself into every opportunity to educate everyone he can about dementia, from carers to doctors.

Mick is a member of local and national groups that plan services for people with young-onset dementia. He contributes to strategy meetings organised by Alzheimer’s Society and Hertfordshire Council to improve support in the community.

One of his proudest moments was talking to 100 staff from Lister Hospital about living with dementia, and his passion and commitment inspired the setting up of a dementia café in Stevenage.

Mick is an unstoppable force and even manages to spread the word in his daily life.

‘I was on a train to London and overheard a university lecturer talking about her work.

‘I said, “You should lecture youngsters on how to support people with dementia. People need to know how to understand dementia because one in three of us will get it.”

‘The carriage went quiet. People were shocked because they just don’t know the facts.’

Specific challenges

Sarra says it has been wonderful to see Mick grow in confidence.

‘I used to prep Mick with answers to questions, but now he’s at a stage where we don’t practise and he stands up in front of people completely on his own.’

Sarra says people with young-onset dementia have specific challenges.

‘People might still be employed, be driving or affected financially.’

Mick agrees, ‘It is hard when you go to groups and everyone is older and you’re doing colouring and singing wartime songs. 

There is a need to think about what younger people need.

He found it particularly challenging to lose his driving licence as, because of his anxiety, he struggled to use public transport.

‘I found ticket inspectors on the train hostile and I couldn’t use ticket machines because there were too many options, so I used to get cabs everywhere.’

Trying things

Mick is more confident about getting on trains now but says there still needs more dementia training for staff.

He got his licence back three years ago after an assessment with Herts Ability – a charity that helps disabled people return to driving. He needs to be reassessed every six months.

Mick wants to encourage people with dementia to step outside their comfort zone. He says it’s important for carers to give people with dementia the chance to try things themselves.

‘Just because people have dementia doesn’t mean they are useless. There is a bloke in one of my groups and I told his wife she doesn’t have to do everything for him. He can think for himself and do things for himself.

‘If you don’t use it, you lose it.’

Get rid of dementia's stigma

Mick wants people with dementia to be more integrated into society.

‘We have to get rid of stigma. Why are we segregated from the community? Dementia cafés are OK, but I want everyone to go there and I want the waiting staff to have dementia.’

Mick is certainly an important part of his community. Last year he was involved in a local music festival. This year he’s helping to organise a dementia-friendly football tournament.

His next adventure is a holiday with three friends he met through an online young-onset dementia support group.

‘We’re going on a canal boat holiday on the Grand Union Canal. You only go up and down so we can’t get lost! If we can do it, anyone can.’

So much empathy

Although dementia brings many challenges, it has also brought Mick and his daughter closer.

Kezzie says, ‘Dad was always the hard man and found it difficult to express himself. But now we can talk about anything to each other and he has so much empathy for everyone.’

‘I am so proud of Kezzie,’ says Mick. ‘She’s only 23 and she looks after me when I should be looking after her.

I have dementia. I can’t change that, but I can increase awareness and support for others so I can leave a legacy for Kezzie.

‘I want to stand up for people with dementia. Not because I have to but because I want to. I always want to be busy because my mood is higher, I feel important and that I’ve achieved something.’

Buzzing with ideas

Mick is always buzzing with ideas, from writing to his MP to going into schools to talk to children about dementia.

His advice to others with dementia is, ‘Don’t think of dementia as a death sentence. There is a future even if you don’t think there is, and if someone wants to help don’t refuse them.’

After years of doing everything he can to make life better for younger people with dementia, his ultimate dream is to work for Alzheimer’s Society.

‘I have a voice and I want to use it. Only if you have dementia can you understand it, and anyway,’ he smiles, ‘I’m quite a catch, don’t you think?’