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Health & Fitness Widow shares devastating story of husband’s early onset dementia

00:56  21 august  2021
00:56  21 august  2021 Source:   newsletter.co.uk

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This kind of early onset dementia affects 50,000 to 60,000 Americans at any one time, according to the association. “We believe that’s a significant undercount,” Ozga says. Diana and Suzanne Adan, co-director and curator of the gallery, reminisced that day about David and a friendly get-together in the early days of his diagnosis. “I think that was the party where they said, ‘Your husband ’ s playing in the street,’ ” Diana said. As she waits for David’s eventual placement, she is beginning to think about her own future.

Dementia is a cruel and devastating condition for anyone diagnosed with it, but early onset dementia can come as an especially severe blow. When Phyllis Feener was diagnosed with dementia in 2012, she and her family were in disbelief – she was only 53. The family thought her recent memory loss might have been associated with menopause, but the cause was something much more unexpected. Phyllis’ daughter Kelli Taylor has shared a picture to Twitter of her mum and dad that’ s as beautiful as it is sad.

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’.

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Often called ‘ early - onset dementia ’, it’ s one of the cruellest forms of the disease, ravaging young, healthy brain cells in the same way it affects older patients. One of the focuses of charities such as the Alzheimer’ s Society and Alzheimer’ s Research UK is developing dementia -friendly business guides In early 2016, she stopped driving and Trevor — or son Doron — began dropping her off and picking her up from work. With Yvonne’ s dementia worsening, her manager proposed a new role: cleaning the ‘totes’ — the plastic containers used to transport online shopping orders. ‘This was not an official role

‘I’m sorry to say that your husband has presenile dementia ,’ said the consultant. It wasn’t the shock one might have thought. I had been preparing for this news for months; our lives had been falling apart for years. Clive was 45, our children were four and five. The phone call came at the end of a long year. He had frontal lobe dementia – an illness that starts very slowly, but which changes behaviour and the ability to plan for the future. Clive also developed increasing difficulties with language. He was an Oxford graduate, but he couldn’t read a bedtime story to his children or write a cheque to pay a bill.

a man standing in front of a group of people posing for the camera © Jim and Emily Wilson at a Memory Walk in aid of the Alzheimer's Society

“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.

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The illness hit her husband and two teenage sons for six. About 44,000 people in the UK have early onset dementia . And yet dementia , in all its various forms such as Alzheimer’ s , is most often associated with the elderly. That is perfectly understandable, but charities like Alzheimer’ s Research UK say that it means dementia affecting those under the age of 65 can take longer to diagnose, can be mistaken for other conditions like depression or the menopause, and care can be harder to find.

You have early onset dementia .” Since that time, her husband Jay, a good friend and an EPM board member, has written eloquently about their experience. Each time he sends an update about Debbie, I’ve deeply appreciated his heartfelt insights, and faithful love for his precious wife. Recently Jay sat down with Good Shepherd’ s new lead pastor, Bob Bryant, and shared some of his and Deb’ s story . He’ s candid about his regrets and struggles, and I think you’ll really appreciate hearing Jay firsthand. One of the lines Jay wrote about Debbie that touched me the most was this one

“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.

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Early - onset , or young- onset , dementia refers to changes that begin before age 65. It can start as early as age 30 but usually happens around age 50. Because it starts at an earlier age, there are unique challenges to consider when caring for someone with early - onset dementia , such as You'll be better prepared for future changes. Talk to others. Get support from family and close friends. Don't keep your feelings bottled up inside. Sharing your emotions and journey can be helpful. Caregiver support groups are available and may be a safe place for you to discuss your feelings and unwind.

III: Problems Confronted by People with Early Onset Dementia and Their Families and Steps Toward Solutions 1. Difficulty getting an accurate diagnosis 2. Loss of employment and job-related income 3. Difficulty obtaining SSDI, SSI, and other disability benefits 4. Lack of health insurance and high out-of-pocket expenditures for medical care 5. High out-of-pocket expenditures for long-term Alzheimer’ s disease and other dementias are devastating conditions that create huge emotional, financial, and physical challenges for the person and his or her family. These conditions usually affect older people.

“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.’

“I 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”.

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Medication stalled some of the cognitive decline, but dementia is progressive and terminal and there was 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. Eventually 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.

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“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.

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usr: 23
This is interesting!