'I thought I was bulletproof' says headteacher diagnosed with Alzheimer's aged 55

Keith Oliver, a successful and respected head teacher, is one of 42,000 people in the UK living with early onset dementia. On New Year's Eve in 2010, aged just 55, his life was turned upside down when doctors confirmed 'the unknown'.

Since then, Mr Oliver has campaigned tirelessly for Alzheimer’s Society, and has published a book called 'Walk the Walk, Talk the Talk'; the story of his life before, during and after the diagnosis.

By keeping busy, Mr Oliver believes it is the only way to face the disease that brought his 35-year teaching career to an abrupt end.

He told homecare.co.uk: "For the past seven years, I have been sharing my brain with an unwelcome and unwanted guest; Dr. Alzheimer. It stays with me 24/7. Sometimes in the background, watching and waiting for an opportunity to make mischief and sometimes leading me up a pathway where I do not seek to go.

"I am reminded of Princess Diana who said there were 'three in her marriage'. My wife Rosemary and I, and the many thousands of other people with young onset dementia know who this third insidious member of the triad is; Dr Alzheimer."

When doctors gave the diagnosis, the father-of-three, who had a distinguished teaching career and was in the process of studying for an MA in education, was forced to accept he could no longer lead Canterbury’s biggest primary school.

Mr Oliver began experiencing a series of unexplained falls, suffered with fatigue and had a general feeling of being unwell. He also experienced numerous challenges at work with regards to meeting deadlines, answering the telephone and retrieving and retaining information.

"We thought maybe it was an ear infection at first, and although a GP examined my ears and said there was no sign of an infection, he gave me some antibiotics just in case."

After no improvement, Mr Oliver went back to the doctor who carried out further investigations.

Following an MRI scan and a neurologist appointment to rule out a brain tumour, Mr Oliver was referred to a memory clinic for what turned out to be an in-depth six-month assessment period which culminated with a confirmed diagnosis of Alzheimer’s disease.

"It just wasn’t on our radar," he revealed. "We came away completely shaken. I thought I was bulletproof. No one, especially someone in their 50s wants to be diagnosed with dementia but because of the impact the disease was having on me by way of my ability to undertake my work, there was some peace of mind in knowing what the cause of these problems was."

During the diagnosis period, Mr Oliver was supported by a professional team who explained the results of the tests, which at best he was performing at average and at his worst at the lower fifth centile.

"I wanted information and I needed to understand what I was living with, and subsequently this served to allow me to come to terms with moving from a suggested diagnosis to a confirmed one, and then to begin to live as well as possible with dementia," he said.

Determined to see things through, Mr Oliver chose to confide in only a couple of his closest colleagues, while his wife would collect him at lunchtimes so he could have a quick nap in the car.

But on 1 April 2011, his teaching career came to an end and he took early retirement from Blean Primary School.

Mr Oliver may be a natural optimist, but there is no disguising the realities of living with what he calls the "wretched condition."

He needs care from his wife, who is supported by an Admiral Nurse, when the 'fog' of dementia descends upon his mind.

"There are certain 'sunny' days when I feel I am coping and there are 'foggy' days when I tend to withdraw into myself," he said. "It is extremely frustrating and it makes me angry that I am not better able to deal with it."

In 2014, Alzheimer’s Society estimated that 42,325 people in the UK are living with a diagnosis of early onset dementia.

It is a degeneration of the brain that causes a progressive decline in people’s ability to think, reason, communicate and remember. Personality, behaviour and mood can also be affected.

"I had the typical impression that dementia was solely the domain of the elderly," revealed Mr Oliver. "My mother developed Alzheimer's in her mid-70s and she was typical of how I imagined people with the condition.

"Alzheimer’s made my mother totally immobile. She lost her memory of how to move even though cognitively some of her memory wasn’t too bad. I know that for me is a problem by the way of balance and by way of mobility."

He added: "Something I have also noticed particularly in the last five or six months is that there has been a heightening of my emotions when engaged in either a book, film or TV programme which previously I would have had an emotional attachment too and enjoyed, but now I am in floods of tears.

"Your emotional intelligence becomes more fundamental than your actual cognitive intelligence. It’s partly remembering, but it’s more significant, it’s what you take away from that experience or that conversation or that person even. The content of the conversation is simply gone; but the way one has felt in that moment has been retained."

In April 2016, Mr Oliver began writing his book 'Walk the Walk, Talk the Talk'.

It covers the story of his life before, during and since receiving his diagnosis, told also by those who know him best, including health professionals, friends and family.

He hopes his story will help others who find themselves in the same situation as him, as well as raise awareness of the condition.

"I feel I have a window of opportunity to speak to people about dementia and to feel as though I can make a contribution to raising public awareness," he said.

"One of the reasons my health has maintained a reasonably good level is my determination to try and live life positively, to do things which I enjoy and find interesting and to live life to the full.

"Dementia's best friend is apathy, because if you give in to it and think 'it's got the better of me,' you cannot live life as fully as possible. Then it does get the better of you."

SOURCE: homecare.co.uk, Melissa McAlees

New care home will have a pub, corner shop and a hair salon

Eighty new jobs will be created at new home, which will include a hair salon, shop and a pub. Building is already underway on the £8m bespoke 75-bedroom home off Pearson Avenue, which is due to be finished in November.

Adept Care Homes received funding for the development from the Royal Bank of Scotland.

Dave Lock, managing director at Adept Care Homes, said: "With the build on track, we're starting the recruitment process to ensure we have the right team in place to make the new house a home.

"We are extremely pleased to announce the appointment of our experienced home manager, Claire Chorwell, and we are now looking for carers as well as staff to form the housekeeping team."

The company runs a further seven care homes across the UK.

The home's 75 en-suite bedrooms will be situated within five care suites. Each suite will have its own lounge and dining facilities together with a lifestyle kitchen.

Facilities will include large en-suite bedrooms, a cinema, pub, corner shop and hair salon. Residents will also have access to sensory gardens complete with an aviary.

"We are now completing the ground floor of this exciting new project, our eighth home in the Midlands," added Mr Lock. "We are looking forward to providing superb care for residents and a great working environment for the care team at our first Nottinghamshire home."

Kenny Nelson, relationship director at Royal Bank of Scotland, said: "The plans for the Chilwell care home are very impressive and I am pleased that we have been able to support Adept Care Homes with funding for the development.

"In addition to the high standard of care the company are known to provide, the new facility will ensure that residents are able to live comfortably and in a fun and stimulating environment."

Anna Kobas, 36, of Beeston, who works in a sandwich shop in Chilwell Road, Beeston, said: "Eighty jobs is definitely good for the area. It's good to see more employment. I'm not sure about the hairdressers as there's already quite a lot in that area.

SOURCE: Nottingham Post, Gemma Toulson

Isnt it great that care companies are really thinking about exciting new projects to stimulate residents? 

Greenock family’s ‘devastating’ dementia diagnosis

A BRAVE daughter has told how her mum was diagnosed with dementia at only 53 years old.

Greenock woman Carrie Ann Sheekey has spoken out about the devastating impact her mum Helen Leighton’s condition has had on their family and the difficulties they have faced.

Mum-of-two Carrie is now taking on the charity Kiltwalk for the third year in a row in a bid to help raise more awareness and fund research into the disease.

Three years after she was finally diagnosed, her mum Helen now needs round-the-clock care.

She has spent the last two months in hospital and will now be going into a nursing home.

Along with step-dad Malcolm, Carrie Ann is determined to carry on fighting for Helen and hopes to help other families who are suffering as well.

Carrie Ann, 35, a support worker for care organisation Turning Point Scotland said: “When my mum was diagnosed with early onset dementia we realised that there was very little for her.

“All the other services are geared towards people much older than her.

“It came as a shock to us all how little is out there.

“My mum had been having tests for years but because she was so young it took a long time to get there.

“But she finally had a CAT scan which revealed shrinkage in the brain and was diagnosed with Alzheimer’s.

Carrie Ann and her step-dad first started noticing changes in Helen as far back as 2009.

Care worker Carrie, of Stafford Road, said: “It started with forgetting things like her keys. But she would leave her car somewhere and then we would spend hours looking for it.

“At first the doctors thought it was depression. My mum had to deal with two losses in a short space of time, when my grandad died and then my mum lost her best friend.

“They thought it was the grieving process and then depression. Her symptoms were very close to anxiety.

“My mum definitely knew something was wrong. Her personality started to change.”

As a result of spending so much time researching possible causes and dealing with the impact of her mother’s illness, Carrie Ann decided she wanted to become a mental health professional.

She added: “I did so much research into mental health as I tried to find out what was wrong with my mum that I decided I wanted to be a nurse.

“I am now in my third year at Caledonian University.

“I have found it hard at times. When I am on dementia wards it feels too close to home.”

Helen, now 56, also worked as a carer for Quarriers and Inverclyde Council.

Carrie Ann said: “My mum was so kind and caring. She is very sensitive and that made her a great carer.”

Together Carrie Ann and Malcolm have cared for Helen every step of the way. Malcolm, 54, who has been married to Helen for 18 years, said: “The only word for it is devastating, absolutely devastating.

“I am lucky because I am young enough to care for Helen.”

Malcolm, who also worked as a carer, has had to give up his job but because Helen is under 65 she is not entitled to free personal care.

He said: “We just wouldn’t be able to afford the cost of the care. It is something that affects so many people.”

Carrie Ann’s charity walk will raise money to help other local families who have to face up to the devastating impact of dementia.

She said: “All the money I raise will go towards the Inverclyde branch of Alzheimer’s Scotland so that there can be more services for people with early onset dementia.”

Courageous Carrie Ann will be supported on the 23-mile Kiltwalk trek from Glasgow to Balloch onSunday by her husband Andrew, 37, and her two children Aidan, 12,  and Molly, 10.

Step dad Malcolm said: “I am so proud of Carrie Ann and everything that she does for her mum.” 

SOURCE: Greenock Telegraph, Susan Lochrie

Son loses legal bid to take over care of mum (83) with probable dementia

The son of a Northern Ireland pensioner in care with probable dementia has lost a High Court battle to bring her home.

The man was seeking enduring power of attorney to look after his 83-year-old mother, claiming that keeping her in residential facilities would lead to a "slow death".

But rejecting his case, a judge instead granted a health trust's application for the widow to remain in specialist 24-hour accommodation.

Mrs Justice Keegan said: "It is entirely unrealistic to think that, given her needs, she could be looked after in the community."

The mother-of-four, referred to as NS, was described as a previously independent woman heavily involved with voluntary organisations and the church.

But following the death of her husband in 2009, she suffered a series of health difficulties, culminating in a diagnosis of probable dementia.

Opposed to a care package, she had been managed at home with the support of family, friends and a neighbour.

However, the situation changed when a daughter who stayed with her up to five nights a week suffered a stroke in 2014.

By 2016 her son, referred to as MS, saw himself as his mother's primary carer.

In May last year she was admitted to hospital suffering from a suspected lack of oxygen to the brain and delirium.

Following treatment, the court had to decide whether NS should be discharged to a residential facility or to her son with a care package.

However, medical experts cited a pre-existing diagnosis of dementia and claimed that she lacked capacity to make the decision for herself.

A social worker also referred to the risks to NS due to her condition, claiming she required 24-hour residential care.

Representing himself, MS argued that being at home was not harming his mother and insisted that she should be allowed to attend court to express her own views.

At one stage he also alleged that she had been held unlawfully in trust care for 216 days.

He claimed this was forced against her will and asked that the trust pay £5.8m immediately.

The man urged the court to conclude that she should come home.

But Mrs Justice Keegan backed submissions on behalf of the trust that NS was not getting better and required suitable care.

In a judgment, she acknowledged it was an emotional issue affecting many families, but stressed the need to base her decision on the facts and medical evidence about a vulnerable elderly lady.

"I accept that she was a vibrant woman who lived independently and contributed to the community," the judge said.

"I also accept as a basic principle that it would be best if NS could live out her latter years at home."

Granting the declaratory relief sought by the trust, she said she was satisfied the necessary checks had been made at the residential home.

Mrs Justice Keegan also emphasised how the pensioner's condition had deteriorated, potentially leading to her requiring oxygen and specialist nursing care in future.

She added: "I do not accept MS's arguments about his ability to care for his mother."

SOURCE: Belfast Telegraph, Alan Erwin

Patient who's been blocking a bed for more than three years: Two other patients have spent 600 days on a ward as crisis in Welsh NHS is exposed

A patient in Wales has been waiting three and a half years to be discharged from hospital.

The individual, who has complex health needs, has been occupying a hospital bed for 1,338 days.

Their identity has not been revealed but they are being looked after by Hywel Dda University Health Board, in Milford Haven, South Wales.

A patient in Wales has been waiting three and a half years to be discharged from hospital. Stock image

Two other patients have been occupying hospital beds in Wales for almost 600 days, more than one and a half years.

The cases uncovered by the Welsh Conservatives suggest the social care crisis in Labour-run Wales is even worse than in England.

The longest recorded delay in England is just over two years and that was an exceptional case whereby the patient refused to leave.

Under normal circumstances, patients become stuck in hospital when care cannot be set up for them at home due to a lack of funding from councils.

Waiting times in the Welsh NHS are also significantly worse than in England and some patients travel over the border to be seen more quickly.

The patient who is currently stuck in hospital suffers from a serious mental health condition, has a learning disability and also physical needs.

Conservative Assembly member Darren Millar said the delay was ‘truly scandalous.’

‘No patient should have to wait almost four years to be discharged from hospital.

‘While bed blocking is extremely costly for the NHS in Wales, the real cost is the quality of life of patients for whom it affects.’

Mr Millar was sent details of the cases in a letter from the Welsh cabinet secretary for health, Vaughan Gething.

This states that the unnamed patient is likely to be discharged ‘in about six months.’

It adds: ‘We have recently been advised that using a bespoke commissioning approach, the health board has secured a provider who is able to meet all of the patient’s complex needs, subject to some structural alterations to their premises.’

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Two other patients have been occupying hospital beds in Wales for almost 600 days, more than one and a half years. Stock image

Another patient has been stuck in hospital for 589 days in Abertawe Bro Morgannwg University Health Board, in Swansea.

A third patient has been waiting for 583 days to be discharged at Cardiff and Vale University Health Board, the letter also revealed.

Welsh Conservative shadow health secretary Angela Burns said the figures were ‘shocking and a ‘further indictment of the Welsh Labour Government’s failure to process patients through hospitals and into community care within an acceptable timescale.’

In January the James Paget Hospital near Great Yarmouth in Suffolk took legal action to evict a patient who had been there more than two years.

Adriano Guedes, 63, was paralysed from the waist down had refused to move into a care centre because his family could not live there as well.

He was eventually forced out of the hospital on the 10th of January after managers secured a court order to evict him.

SOURCE: Mail Online, Sophie Borland

Nurse practitioners are not regularly assessing brain health and need standardized assessment tools to regularly conduct critical brain health assessments

WASHINGTON, DC, April 24, 2017 - Important new survey findings released today by WomenAgainstAlzheimer's and the National Association of Nurse Practitioners in Women's Health (NPWH) show that approximately 30 percent of nurse practitioners (NPs) in women's health do not raise brain health issues with patients, while only 18 percent of nurse practitioners occasionally broach the issues during office visits. 

In fact, 68 percent of the time, patients are raising brain health issues, rather than the nurse practitioners treating them.

The findings raise needed awareness for enhanced training of nurse practitioners and for the adoption of better tools and protocols that increase brain health assessments during regular care visits, which can aid in the early diagnosis of Alzheimer's and related dementias. Often, the diagnosis of Alzheimer's and other dementias is made too late, when patients and their families are already in crisis.

Furthermore, the lack of communication about memory and brain health with patients can prevent participation in potentially game-changing clinical trials, which can advance Alzheimer's-related science and research. The survey found that just 5% of NPs refer patients to clinical trials.

"Alzheimer's remains like cancer was in the 1960's, a disease that strikes fear in patients and practitioners alike," said Jill Lesser, President of WomenAgainstAlzheimer's and Chief Strategy Officer of UsAgainstAlzheimer's. "Without honest, informed screening and diagnosis, we will continue to leave families in crisis and slow progress to a cure. Clinical trials need participants and brain health awareness and assessments will help us get there."

The survey, Brain Health is Women's Health, was conducted to understand women's health providers' knowledge of and attention to Alzheimer's and dementia, as well as study the advice women are receiving from nurse practitioners, who often represent a patient's primary access point to the healthcare system. Two-thirds of the 5.5 million Americans who have Alzheimer's are women, and the survey makes clear that brain health assessments need to be added as central components of "well-woman exams."

However, because clinicians are not routinely initiating conversations about memory and brain health, many women are not receiving an early diagnosis or the information they need to formulate a care plan.

Other survey findings were striking:

• 26% of NPs don't know when to start asking about brain health, despite the fact that changes in brain health can start more than a decade before active symptoms occur.
• When presented with a memory issue, only 15% of nurse practitioners carry out a diagnostic test and just more than half refer patients to a neurologist.
• 86% of NPs report not having a standard diagnostic tool.
• 84% of NPs agreed or strongly agreed that they would benefit from additional resources and training.
• 45% of NPs report a lack of familiarity with the signs and symptoms of dementia; however, 54% said that they want better knowledge in this area.

"Women's Health Nurse Practitioners' provide holistic healthcare to women, therefore, assessing brain health should be included in the well-woman visit," said Gay Johnson, CEO of the National Association of Nurse Practitioners in Women's Health. "Quality education and efficient tools are key factors to enhance nurse practitioners' competence in identifying dementia and providing memory health services to their patients."

The survey findings helped form the conclusion that further education of dementia signs and symptoms, as well as a standard method to assess brain health, can help nurse practitioners prioritize early diagnosis and help establish a dementia care pathway for people with Alzheimer's or related dementias and their caregivers.

SOURCE: EurekAlert, The Global Source for Science News

'I've given up my life to care for my mum'

Two years ago, Patricia was diagnosed with dementia. An accident four years earlier broke her back and since then she has been disabled, doubly incontinent and using a wheelchair.

"I have given up my life," says Sue. "I used to sail a lot. I used to do so many things. I'm a very outward-going person. But I take care of my mother. And that's it.

"Love is something that drives you to give up those things. You'll give up anything."

But she's struggling. She cares for her mother 24 hours a day. Even taking the time to speak to us was difficult.

Her mother calls for her constantly. She can't spend very much time away from Sue before becoming agitated.

There are professional carers who come to the house to help, but none lives with them full time and it seems a big part of what Sue does is to manage them.

More than 20 professional carers have come and gone over the last few months because Patricia's behaviour can be so difficult.

"She has a lot of challenging behaviour," says Sue.

"Screaming, hitting out. It's horrible because dementia strips the person of their personality."

Her eyes fill with tears as she talks. The physical exhaustion of a life with little sleep is obvious.

But the emotional strain of watching her mother deteriorate is pushing her to breaking point.

"I've lost my friend. My best friend. She's there - somewhere inside. But the person I dearly love and dearly want to talk to about so many things has left me already.

"And the thought of losing her fills me with complete dread. Because my life is very much her," she says.

I ask her what it's like when her mother hits her.

"It's heartbreaking. It can make you feel useless. As she's saying that, it can make you want to run for the hills and just run into the night.

"And there have been many occasions when I've wanted to run off, thinking I was a useless carer."

It costs more than £2,800 a week to keep Patricia at home. That money is paid by local care services.

But the authorities have twice tried to stop the money. Sue says it is an attempt to force her to put her mother in a home.

That is something she is adamant she will never do.

"I've seen what goes on in those places. It would kill her," she says.

She feels hounded by the authorities and says it's taking valuable time away from her and her mother. She's says she is sometimes up through the night replying to emails, while still caring for her mother.

"It's been absolutely devastating. The hours that have been stolen from me - email after email after email - chasing and phoning," she says.

"The government wants to encourage people to stay in their own homes and nurse people in their own homes. And say there's support out there. But there isn't.

"It's the most isolating situation anyone could find themselves in," she adds.

There are more than 6 million people in the UK who look after sick or elderly relatives full time. Those numbers have been steadily increasing. But so have the pressures on people like Sue.

UK Homecare Association this month said 900 carers are quitting the industry every day.

Government ministers say they will spend an extra £2bn on social care over three years.

And earlier this week, Luke Hall, a Conservative MP on the Commons Work and Pensions Committee, said carers made "a huge contribution to society".

"It's only right that we do everything we can to support the selfless work they do," he said.

"That's why we already increased the rate of carer's allowance, meaning an additional £450 a year for carers since 2010."

'Occasional laughs'

For Sue, her dedication to her mother has meant she has sacrificed her own happiness. Her husband left her six years ago when she decided to look after her mother.

"You find that having any kind of relationship is very difficult. It would take a very understanding man to understand my situation."

Life has become increasingly lonely for her. Yet she tries to remain positive.

"It is worth it. There are occasional little laughs. Not often these days, but they're there. It's love. It's what you do. It's deep."

SOURCE: BBC News, James Longman