Dementia specialist shares ‘dread' for future after parents and grandmother all suffer from illness

Independent

22-05-2025

A dementia specialist, whose grandmother and father died from the disease, says she is filled with "dread" about her own future after her mother was also recently diagnosed.
Helen McDavitt, 52, from Hassocks, West Sussex, first encountered dementia in the 1990s when her grandmother, Barbara McDowell, began exhibiting symptoms. She describes her grandmother as becoming "angry", "paranoid" and "vulnerable" before ultimately succumbing to Alzheimer's in 1997.
Around a decade later, Ms McDavitt's father, Keith, also started showing personality changes, becoming "withdrawn" and "saying the odd weird thing".
Growing concern turned to alarm when he forgot how to refuel his car. Although never formally diagnosed with dementia, his health declined, and he died from the illness in 2014 at age 70.
Driven to find purpose amidst tragedy, Ms McDavitt, already a qualified nurse, dedicated herself to dementia care. She now works as a dementia specialist Admiral Nurse at Dementia UK, drawing on her personal experiences to provide comprehensive support to families navigating the complexities of the disease.
The issue hit home again in 2024 when McDavitt's mother, Ann, received a diagnosis of vascular dementia.
The recurring pattern of the disease within her family has intensified Ms McDavitt's fears for her own future, leading her to hope that her husband, Paul, will have access to the support of a trained nurse should she develop dementia.
'Dementia is so complex and so different, it affects absolutely everybody and it can shatter families,' Ms McDavitt said.
'When you have it in your family, it does become something you fear for yourself.
'I'm still going through the menopause and when you have a symptom that is quite common and can be misdiagnosed, you think it's actually the start of dementia.
'It's very real, that worry and anxiety, and it does every so often absolutely fill me with dread.'
Ms McDavitt's family first saw the symptoms of dementia when her grandmother, Barbara, displayed changes in her personality in her early 60s.
'I went travelling for nine months in 1992 and when I came back, she'd completely changed,' Ms McDavitt said, adding that she was in her 20s at the time.
'She started doing things like putting a kettle on the hob when it was a plug-in one.
'She used to keep a diary and we noticed it was all over the place, all scrambled and full of weird writing.
'It was almost as if you could see her brain on paper.'
Around this time, Ms McDavitt was training to be a nurse and looking after her grandmother inspired her to focus on elderly care and hospice work.
Over the next few years, Ms McDavitt said her grandmother started to become 'cross' and 'paranoid', and she was placed in a care home for additional support.
'She was always really outgoing, bubbly and sensitive and she just became quite angry,' she said.
'She started to be really vulnerable, she lost a lot of weight and just started to really change.'
Barbara died in 1997 at the age of 69 from Alzheimer's, a specific type of dementia.
Around 10 years later in 2007, Ms McDavitt started to notice concerning symptoms in her father, Keith, who was in his early 60s at the time.
'We started to notice subtle changes in his personality, he was becoming withdrawn, saying the odd weird thing,' she said.
'It was around that time I knew enough about dementia and I thought this could be a familial link – he was really paranoid about it as well.'
After Keith retired, he started taking shifts as a taxi driver but one day, he forgot how to fill the car up with petrol.
'He came home and said 'Babe, I've forgotten how to fill up with petrol, can you help me?'' Ms McDavitt said.
'He just looked ashen.'
Ms McDavitt said things 'unravelled pretty quickly after that' and she and her husband built an extension on the side of their home in preparation for Keith to stay with them.
'We knew then what to expect from his mum, they were quite similar in their personalities and I knew it was going to be really tricky,' she said.
'It got difficult really quickly, he became really combative, really angry and cross.
'He could get verbally aggressive and sometimes he would throw things.'
Ms McDavitt said her father went to hospital where he was voluntarily sectioned, before being placed in a care home – where his health deteriorated and he died at the age of 70 in 2014.
Around this time, Ms McDavitt said she was 'on a mission' to get into dementia care, having completed her training as a nurse.
She started a research role in 2013 looking at improving the diagnosis pathways of people displaying symptoms of the illness.
'My dad never got a formal diagnosis so this was a role I absolutely loved, looking into research about how people could get accurately diagnosed,' she said.
For the last seven years, Ms McDavitt has been working as a dementia specialist Admiral Nurse at Dementia UK, a specialist dementia nursing charity supporting the whole family.
'I just felt like I finally had a chance to make something good out of something really bad,' she said.
'Admiral Nurses are there for the whole family and they help the family cope.
'It was something we never had as a family, we didn't know what we were doing or who to turn to and my personal experience does add another layer to it.'
For advice or support on living with dementia, contact Dementia UK's Admiral Nurse Dementia Helpline on 0800 888 6678 or email [e-mail].