Beckton woman, 48, with early-onset Alzheimer’s on need for targeted support services

PUBLISHED: 07:00 06 December 2017

Victoria Huntley, right, with her daughter Leanne

Victoria Huntley, right, with her daughter Leanne


First impressions of Victoria Huntley are that she has a beaming smile and hearty hello - she looks a youthful 48.

Victoria Huntley inherited early-onset Alzheimer'sVictoria Huntley inherited early-onset Alzheimer's

However, the Beckton resident is one of four per cent of people in the UK under the age of 65 living with early-onset Alzheimers.

A mother of two and grandmother of six, Victoria is unusual because her Alzheimer’s runs in the family and is caused by a fault in one of three specific genes called amyloid precursor protein (APP), presenilin-1 (PS-1) and presenilin-2 (PS-2).

Her mother, grandfather and great-grandmother all died young from the disease and there is a 50 per cent chance of her passing it down.

“I am actually a strong person and can cope quite well,” said Victoria who has the APP gene and began experiencing dementia symptoms about 10 years ago, affecting her existing stammer.

“What I hate is that I know what I want to do but the speech has got worse and it makes me really angry.”

Victoria, who used to support autistic people at Newham College, now stays at home with husband Martin, 49, and is too vulnerable to leave the house alone.

She can get confused easily and finds certain tasks, such as counting money, tough.

“I can’t work out how much change I get,” she explained.

Victoria receives support from her son Craig, 26, and daughter Leanne, 29, who lives down the road.

Leanne says when her mum tells people she has Alzheimer’s disease, they often think she is lying.

“A lady in Asda said why do you have a massive key [on her keyring]?

“Mum said: ‘To help me find it, I have Alzheimer’s’. She said: ‘No, you’re too young.’ She was really shocked.”

Victoria is one of 1,500 people in Newham who have dementia but is in a minority when it comes to people under 40 and says the support groups can reflect this.

“I have been going for a while,” she said of the cafes run by Alzheimer’s Society.

“They are ok but they can be so bloody boring,” she admitted adding she would rather participate in arts and crafts or go to a show or the cinema.

Her daughter is in agreement. “Mum is the youngest one there. They are all in their sixties and seventies.

“Even I find it uncomfortable when mum looks so normal and young.”

Joe Ellis, dementia support manager at Alzheimer’s Society, said Victoria is an active member of the service user review panel that the charity holds in Newham once a month, but says there is still a gap in service provision.

He said: “Every day, I’m proud to see our staff, volunteers and supporters empowering people with dementia to live well – but we have a long way to go to highlight that dementia is not just an older person’s condition.

“As a younger person with dementia, Victoria’s contribution supports us to understand how better to support young people with dementia.

“Her involvement is making a real difference but we are still missing a service in our borough that is specifically for younger people with dementia.”

A spokeswoman for East London Foundation Trust (ELFT) said it does run dementia support groups for all of its patients, including those with early onset dementia.

She said: “We recognise the need for more support groups that cater to younger patients and have been working with the Alzheimer Society to deliver this.

“We are shaping these services with our patients who will be involved throughout the process.”

Victoria, whose mother died at 56 after spending her final 12 years in a nursing home, is determined to live life “right up to the full”.

She believes there needs to be greatest awareness that younger people can be affected and more funding for research.

“When my grandchildren grow up I am hoping that they will hopefully have something that can help them and there is a cure.”

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