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Dream Jobs: Dementia consultant

Anna Tims, The Guardian

It is a cold, wet day when I interview dementia consultant Victoria Metcalfe. I therefore excuse myself from professional tailoring and swaddle myself in wool and tweed, assuming I will blend in comfortably at the Westminster care home in which we are to meet. But Metcalfe towers over me in stiletto boots and black drainpipe jeans. Her hair is raven and her arm tattooed. At 48, she bears defiant traces of the punk style she embraced in her youth, and she is not in the least how I expected a dementia consultant to look.

This is all to the good, for it is precisely the sort of stereotyping of which I am so thoughtlessly guilty that Metcalfe is trying to challenge. "I struggle with how old age is perceived," she says.

Ten years ago she was recruited by Anchor, the UK's largest not-for-profit retirement and care home provider, to reform the way dementia is perceived and treated within the company and wider communities. At the time, it was a pioneering move. Some care home providers had begun recruiting dementia consultants, but very few had a dedicated team, which was what Metcalfe set out to form.

"People with dementia were regarded as a bunch of symptoms," she says. "I saw them as individuals of ability with an illness, and I focused on what they could do, rather than could not. The key is to understand that all behaviour, however unusual, is a form of communication. You have to look at the behaviour as an unmet need."

It requires unusual patience and empathy to identify that need from habits that can seem irrationally disruptive, and Metcalfe combines both to an awesome degree. She appears to rejoice in every chance encounter, from a staff member heaving a food trolley into a lift (elevator), to a workman laying carpet squares, and she chats with unfeigned enthusiasm to residents across the 96 care homes within her brief.

Staff at one home were exasperated by a woman who summoned them constantly and needlessly with her bell. Metcalfe encouraged them to work out why she was so persistent. "Every time she rang the bell a smiley face would come and say 'hello'," she says. "She was lonely. So now the staff say 'hello' every time they pass her room and the bell has stopped ringing."

Similarly, she says, residents who bang cutlery on the table at meal times are not being wantonly disruptive; more likely they are attracting attention because they want someone to talk to. "And if someone is always walking up and down the corridors, they can be referred to dismissively as The Wanderer; but has anyone asked that person why they're walking around?"

This is not the job Metcalfe envisaged for herself when she left school. Intent on a career as an artist, she enrolled at art college, but when she left she was uncertain how to shape her future. Then she met a social worker who persuaded her to work for the Royal Blind Society. Despite her love of punk and rock, she found an affinity with the elderly blind people who she helped, and she applied for a job with Newcastle social services to work with older residents.

It was a chance encounter with a 32-year-old man with Alzheimer's that aroused her interest in dementia. She spent nine years managing a day centre for people with the disease, before applying for a training and development post with Anchor, which accommodated many of her day centre clientele.

One of her first tasks was to change the language used to describe people with dementia. When I say one of the greatest dreads of most of us is losing our marbles, she flinches. "The language we use reflects our values, and thoughtless language can dehumanise people," she says. To describe someone as "suffering" from dementia, for instance, focuses on the negative, whereas "living" with it recognises the possibility of a meaningful existence in spite of the illness. Nor does she like the word "patient." It may sound petty, but Metcalfe says getting people to think about unconsciously used words helps them view those they care for differently. "You can live very well with dementia," she says. "It's a question of how it is perceived and dealt with."

One in three of us will get one of the 100 or more different variants of dementia, and yet the illness is still under-researched and misunderstood – currently, nearly half of those with the disease are undiagnosed. "Alzheimer's is the only degenerative disease that, once you're diagnosed with it, you're released from expert medical care," she points out.

Last November, Metcalfe helped organise a 137,000-signature petition calling for the government to appoint a minister for older people. Ninety MPs (lawmakers) pledged their support and Ed Miliband appointed Liz Kendall as the shadow minister for care and older people.

"Anywhere I go I am trying to educate. I don't want dementia to become the unmentionable 'D word', but to be an illness understood and supported by communities," Metcalfe says.

Her evangelism is tireless. That morning on the train she had overheard a tearful commuter on her mobile phone explaining that her parents had been diagnosed. Metcalfe immediately offered solace and support and gave the stranger her phone number to ring any time she needed a shoulder to lean on. At home in Northumberland, she looks after a number of her elderly neighbours voluntarily and is always available to relatives of care home residents who need advice.

"Relatives can feel angry that their loved one doesn't recognise them," she says. "One woman admitted this when she came to visit her mother. Later, I asked the mother about her daughters and she spoke of them with such love and pride, so although she no longer recognised them, the emotional faculties were still there and her daughter was thrilled."

One of the most crucial changes Metcalfe has implemented over her 10 years with Anchor is an emphasis on the individual and their life story. Understanding the background is, she says, essential to help make sense of their current reality. "The more you know them, the more you can judge their abilities. Look for key words and phrases. Recently I was talking to a man who kept repeating two very rude words over and over again. He started to point out of the window and I realised he was talking about buses because he used to be a bus driver. Try to connect with them emotionally, and don't correct them. If they feel they are in a school hall go along with that and ask them to talk about their memories of school."

Many words or memories could, she has learned, be an expression of an unmet need. "If somebody asks where their mother is, that is usually to do with a sense of love and safety, so you ask if they feel secure. If they talk a lot about their job, work equates to a sense of purpose, so maybe they want something to do," she says.

There is little routine in a job that takes Metcalfe across 1,000 Anchor locations all over the country. "No two days are ever the same," she says delightedly. "I might be in a care home to support an event, or initiative or be doing a session for researchers, or talking to people in our customer centre. It's my dream job."

One of her latest projects is to set up a volunteer visiting programme that pairs people through shared interests. The idea is the elderly person benefits from regular company and the volunteer learns to see beyond the label of dementia. "I want to banish the idea that a care home is the scary house on the hill, and the emotional connection people can establish is amazing," she says. "One lady was telling me she was expecting a visit from a beloved old friend whom she had known since school. It turned out the friend was a volunteer who had visited just three times. They'd bonded so well the lady thought they'd been friends for life."

Metcalfe's ambition is to expand the idea into schools and encourage pupils to interact with residents of local retirement homes. Research publicised in May suggested children are increasingly shunning older people and therefore depriving themselves of a rich seam of wisdom and history. "Having dementia doesn't make you any less interesting and Alzheimer's often leaves the longer-term memory intact," she says. "There is a saying: if you lose an elder you lose a library."

Curriculum Vitae

Salary:£40,000 to £50,000 (about $48,800 to $61,000)

Hours:The work doesn't stop – it's definitely not a 9-5 job. I might have a very early start and a very late finish if I am crossing the country for a meeting.

Work-life balance:"I'm very energised by what I do, so although work can take up a lot of my time, it doesn't feel like a duty. In any case, I like to be doing something all the time so weekends tend to be a bit whizzy. Working with people with dementia makes you understand the fragility of life and I feel the urge to live my life to the full while I can."

Best thing: "The connections I make with people. I feel quite humbled by the opportunity to help and advise in this role."

Worst thing: "The inevitability of dementia; I can't make it all OK. I can make the process easier but I can't change the ending. I've sat with people who feel so much more reassured after I have explained you can live a good life with dementia if you receive the right support – and then they find that the eventual outcome will still be the same."

Overtime

Victoria loves the Northumbrian coast: "It's the wildness of it, and I try to walk on the beach at weekends." She hasn't lost her artistic side and enjoys drawing animals from photographs. Victoria also loves reading and will "read a whole book – any kind of book – every weekend." She remains a fan of punk rock and will go and see bands play live whenever she can.

Vocabulary and Reflection: On separate paper