A woman living with young onset dementia has described how she went from feeling she had been served a “death sentence” on diagnosis to “living my best life” even as her condition has progressed.
It comes after the news this week that BBC Radio Scotland presenter Janice Forsyth has stepped down after being diagnosed with early-onset Alzheimer’s disease.
Dementia refers to a decline in mental abilities that can be caused by a range of conditions, including Alzheimer’s, Parkinson’s and brain tumours. Dementia is described as being young onset when it affects someone below the age of 65 – over 70,800 people in the UK are living with the condition.
Ronnie Dean, 57, from Llandudno, north Wales, was diagnosed with young onset Alzheimer’s at 49 and was given two years before she would need to enter a nursing home.
Ms Dean used to travel across the country for work without needing a satnav but suddenly found she was becoming “very lost” while travelling.
“I couldn’t use PowerPoint, I was forgetting my team members’ names. I couldn’t use the microwave, I would go shopping and would buy the same product over and over again, put boot polish in the fridge,” Ms Dean told The i Paper.
She first went to the GP aged 47 and returned twice more, after being told it seemed like depression.
The 57-year-old said: “When I was diagnosed, I had a 10-minute appointment, it was a locum consultant, and she said it would be the end of my career, to prepare my power of attorney. She gave me two years until I would be in a home. I’d got teenage children at that point; there was nothing for them. I was given a bag of leaflets and that was it.”
Although there was an element of relief, Ms Dean said she “left the GP surgery, went back to my office, locked the door and just swung round on my chair crying”.
“One day I was working full time” in senior management and the next she knew she would have to leave her job. However, she feels “lucky” at being given a full ill-health pension.
She added: “I really thought my life was over. I just thought it was a death sentence. If that diagnosis had been done differently I could have coped.”
However, doing research with the support of her family helped her to regain some “hope”; she found out that she could access medication privately that can help delay the progression of early symptoms, and that she was now entitled to a Blue Badge, support from specialist Admiral Nurses, PIP and assisted travel on trains.
Ms Dean was initially worried that she would lose her driving licence, but so far she has been able to continue driving shorter distances, with the only change being that she has to reapply every year.
Now, Ms Dean experiences “hypersensitivity to sound, which is tiring,” and has problems with depth perception.
“I can’t pour myself a drink because it will go everywhere and going upstairs I have to have help. If you do get ill, it takes you so much longer to get better,” she added.
Her daughter is her carer and responsible for her finances. “I don’t know what I’d do without her,” Ms Dean adds . Meanwhile, her son Will has thrown himself into fundraising for dementia charities.
“I know dementia is terminal, but especially with young onset it’s not the end of your life. It’s the end of the life you perhaps thought you would have, but it’s the beginning of a new life. I honestly live my best life,” she said.
While she can no longer enjoy her favourite hobbies such as reading and mountain-climbing in the same way, it is normally possible to make adjustments, like getting the train to the top of Snowden.
“I go to my dementia meeting once a month in Denbigh, where I grew up. I drive myself, I have my music on low, and at the moment I see snowdrops and daffodils, and that’s just perfect. It’s freedom. I love being with my family but just for half an hour I’m on my own. Don’t give up all those things,” she added.
Katie Puckering, Alzheimer’s Research UK information services manager, told The i Paper that in younger people, dementia can at first manifest as “problems at work, or problems running the house”.
“They could become disoriented just doing normal day-to-day activities like trying to find the car after a shop, even trying to find their way home. In people which are younger, dementia symptoms will often get in the way of life quite significantly because life tends to be a bit busier than if you were in your 70s or 80s,” she added.
“The difficulty is that when someone in their 40s or 50s or early 60s goes to the doctor about memory problems, it is really hard as the doctor may not have seen young onset dementia before, so they may not be confident in trying to diagnose those first early symptoms.”
The symptoms may initially be put down to something else, so Ms Puckering advises to keep a symptoms diary, noting “what is happening, how it’s affecting everyday life”.
This may help to rule out menopause-related issues, for example, as while the symptoms can be very similar, dementia will get worse over time.
“It’s knowing what you should seek out and what you’re entitled to,” Ms Dean said, and referred as an example to John’s Campaign, under which hospitals are encouraged to extend visiting rights for the families and carers of someone with dementia.
Ms Puckering stressed that it is important for people with young onset dementia to get a diagnosis as early as possible.
While there is no cure for Alzheimer’s, there is medicine which can temporarily improve symptoms.
Medicines include acetylcholinesterase inhibitors which help brain cells communicate with each other, and memantine which works by blocking the effects of an excessive amount of a chemical called glutamate.
A Welsh Government spokesperson said: “We recognise the impact that a diagnosis of dementia can have on individuals, their family and friends and we have published a set of Dementia Care Standards which focus on a person’s needs.
“Our Dementia Action Plan sets out our vision for Wales and we provide Regional Partnership Boards with £12.7m every year to support the implementation of the plan. The plan recognises the impact on younger people living with dementia and sets out how services must address the specific needs of younger people.”
Call the Alzheimer’s Society on 0333 150 3456 to get personalised information, support and advice. You can also join the Young Dementia Network hosted by Dementia UK.
Alzheimer’s disease
The most common cause of young onset dementia, making up about one in three cases. Early symptoms include:
Vascular dementia
The second-most common cause, accounting for about one in five young onset cases. Early symptoms are similar to Alzheimer’s, and can also include:
Frontotemporal dementia
This accounts for about 12 in every 100 young onset dementia cases. Symptoms include:
Dementia with Lewy bodies (DLB)
This accounts for about one in 10 cases, common signs are:
Posterior cortical atrophy (PCA)
A rare form which usually affects people aged between 50 and 65. Early symptoms include:
Most commonly diagnosed around the age of 60. Not everyone who is diagnosed will develop dementia, and if they do it will usually be up to 10 years after diagnosis.
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