Widow shares devastating story of husband’s early onset dementia

A north Belfast mum-of-two who lost her husband to early onset dementia has now dedicated herself to researching a condition she feels is scarcely understood and in need of greater service provision.
Emily Wilson lost her husband to the disease in March 2020, aged 72. 
The first signs of his condition began to emerge over two decades ago, although he did not receive the correct diagnosis until 2014.
Emily said: “Really around 2000-2003 I started to notice certain things. Jim was quite a quiet and reserved man. He would have been a homebird and would have asked me, ‘Do we have to go out tonight?’ He liked routine and he didn’t like change. After our marriage we lived in the same two-up, two-down house he was born in. He was a contented and settled man and he started to behave in such a way where I felt, ‘That’s not really Jim’.

“The company he worked for as a car parts salesman closed and he went for an interview with another firm, doubling his wage, but he just couldn’t make the decision on whether or not to take the job for weeks because his cognitive abilities were beginning to fail him. Then when he tried to deal with the new computer system after landing the new role, it was a real struggle for him. 

“Ultimately he had to give up work with stress aged 60, because he wasn’t up to doing the job anymore, and he was always an intelligent and able man.”

Though originally diagnosed with Alzheimer’s Jim was actually suffering from and later diagnosed with a form of the disease known as dementia with Lewy bodies with elements of Parkinson’s, which is more commonly associated with confusion, anxiety, depression, hallucinations and cognitive rather than memory deficits as well as falling, tremors and difficulties with judgement. It took 11 years for the correct diagnosis of this particular form of early onset dementia to be confirmed, such is the lack of comprehensive understanding of the disease in under 65s.

“Certain things happened that raised alarm bells. When we were on holiday in Spain he got lost and the police had to bring him back. Another time when he was picking me up in Belfast city centre at Christmas he forgot where he had parked the car.”

His personality altered to a degree that Emily and her two daughters found difficult to understand.

She added: ”Jim became more outgoing. He was more chatty and started telling stories and jokes, and this just wasn’t my husband. He was so different, wanted to go out and was always asking me why we had not been to visit certain people before - all of which was completely out of character. He also started singing and dancing at tea dances and things. The confusion got worse and then he began to experience hallucinations that made him very distressed. He also began to get a slight tremor in his left hand and then multiple scans showed he had Lewy bodies with Parkinson’s.

“After his diagnosis he spent much of his time out walking and doing school runs for our three grandsons.

“I would ask him if he had had lunch when I came home in the evenings and he would say he couldn’t remember.

“The thing with dementia is that it makes you typically think of an old person sitting in a chair, but because Jim was younger he was still able to go out and about, was active, did stuff around the house and a lot of the day centres he attended for people with dementia he found frustrating because they were all in their 70s and 80s and content to sit there and paint, whereas he had more get-up-and-go.

“But he always accepted his diagnosis and would tell people: ‘There’s something wrong with my brain you know.’

“A lot of the groups for dementia patients we attended, people would be there with an elderly parent, whereas I was there with my younger husband, which was different and challenging.”

As many who have looked after loved ones with any form of dementia will know, it is an immensely challenging process, and Emily, who first stripped back her hours and then gave up work at Belfast City Council to look after Jim had to learn to take it “not just one day at a time, but one morning, one afternoon at a time”.

Medication stalled some of the cognitive decline, but dementia is progressive and terminal and there was ultimately no halting the deterioration.

Eventually a social worker arranged for carers to visit the home allowing Emily some respite for several hours a week, so that she could go out shopping or to her sewing club. Then carers came to help Jim get dressed in the mornings too, but they never dismissed him and always made him a part of the conversation and the process, respecting his dignity.

But after a bad fall, Jim was admitted to the Mater and ultimately ended up in nursing care. Emily felt guilty, but had to concede that looking after her husband was a round-the-clock job that required changing staff on rotas; she could no longer manage to look after him on her own.

“We tried to make his room as homely as we could. And we used to laugh because they could never find him in the nursing home, he was known as ‘Houdini’ because he was always walking, though confined to the first floor, and increasingly given to falls before his death.

“Towards the end he didn’t really talk. But there were moments of recognition, like when I came in with my grandson Daniel and he just smiled at him and knew that he belonged to him even though he could not have articulated that.”

Jim passed away as Emily was mid-way through her first year of research into young onset dementia at the University of Ulster.

“I used to think Jim and I were unique in having waited 11 years for a correct diagnosis; I discovered I was wrong, that there are lots of people in the same position. For years they thought Jim had a mental health problem because early onset dementia is so rarely understood. I want to see greater understanding and more service provision for early onset, because there are plenty of services for dementia which takes hold post 65.
“Most younger adults with dementia end up being sacked, being demoted, because they can’t cope and people don’t understand what is wrong with them when in fact it is dementia.”

Diagnosis times for young onset are on average five years longer than for late onset dementia.
The symptoms of working age dementia often manifest themselves as anxiety and depression and it can lead to a decline in cognitive skills such as forward planning.
Unlike the dementia found in the over 65 demographic, memory loss is not generally a key symptom in the early years.
Emily’s research, which she will discuss at this year’s virtual Alzheimer’s Society Northern Ireland Conference on September 21, investigated diagnosis times from around the world and the support available.
In Emily’s experience although there are many services for people living with dementia they are not suitable for younger people living with the condition.
The free online conference will also include input from Health Minister Robin Swann.
Bernadine McCrory, Alzheimer’s Society NI, said: “NISRA has confirmed that over a third of all deaths in Northern Ireland relating to Covid were among people with dementia.
“The Alzheimer’s Society Northern Ireland Conference will explore this and other important challenges, such as those around young onset dementia faced by people like Emily, and examine how together we can shape the future of dementia in Northern Ireland.”
To register for the conference organised by the Alzheimer’s Society on September 21 visit www.alzheimers.org.uk.