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

More than 2,000 elderly and ill people die while waiting for care at home: Worse cases saw patients waiting nine months for treatment

Thousands of seriously ill patients are dying while waiting for basic care at home, figures reveal.

In the past three years at least 2,037 adults died before care visits could be arranged in their homes.

Many are likely to have had illnesses such as terminal cancer, dementia or motor neurone disease which leave them housebound and dependent on help.

Thousands of seriously ill patients are dying while waiting for basic care at home, figures reveal. 

In the worst cases, vulnerable patients were waiting for nine months for care to be arranged before they died.

Many were forced to spend their final weeks in hospital as care that would have allowed them to die at home was never arranged.

Others may have passed away at home having become increasingly reliant on family members for basic daily tasks.

Liberal Democrat leader Tim Farron, who obtained the data, said the delays were ‘utterly scandalous’ and exposed the human cost of the social care crisis.

‘Behind these figures are real people with real stories of desperation and misery that would break your heart,’ he said. ‘Imagine it was your mum or your son waiting months for the help they need to live their life.

‘It is unacceptable that some people face this indignity – this has to change.’

The delays have come about because council social care budgets have been progressively slashed and cannot meet the needs of the increasingly dependent population.

This has a knock-on effect on the NHS when frail patients end up in A&E or stuck on wards as bed-blockers, unable to be discharged. The details were obtained

However, only 183 local authorities replied out of around 400 so the actual number dying while waiting for care could be much higher.

Essex County Council admitted a patient had died after waiting up to 251 days – almost nine months – for a care package. And a patient covered by Sefton Council in Merseyside waited 239 days – just over eight months.

Several of the local authorities blamed the delays on high numbers needing care, and experts say the problem will only get worse because of growing pressures on council social care budgets.

Chris James, of the Motor Neurone Disease Association, said: ‘No one should die waiting for care packages.

 ‘Motor neurone disease often progresses rapidly and many people with MND have to fight hard to get the care they need, which adds unnecessary stress and burden on to what is already a devastating disease for the person with MND, their carers and family.

‘As pressures on continuing health care and social care funding grow, the potential is for this situation to only get much worse.’

Caroline Abrahams, of Age UK, said: ‘It is desperately sad to hear that some highly vulnerable older people are granted entitlement to care but then find it takes so long for their council to source it that they die waiting.

‘This is a tragedy for them and their families and shows just how ramshackle and dysfunctional the social care system has become.’

Scott Sinclair, of the Marie Curie cancer charity, said: ‘Delays in access to social care are a significant problem for people who are dying – and their families – as they can prevent them getting home or into a care home in their last days and weeks.’

Chancellor Philip Hammond tried to address the social care crisis in last month’s Budget with a £2billion funding boost.

But many experts say the whole health and social care system needs to be completely reformed, with new taxes to raise more money.  

SOURCE:Daily Mail, Sophie Borland

Column: How to live with and love a spouse who has dementia

As a little girl in the 1970s, I still remember watching "The Partridge Family" every week with my grandmother. I was a little too young to worship teen idols back then, but I still recall the magazine covers and posters of David Cassidy, with his long shag haircut and beautiful blue eyes.

It's hard to believe that anything bad could happen to the teen idol who seemed invincible to so many adoring fans. But last week, Cassidy, who is now 66, went public with the news that he has dementia.

According to the Mayo Clinic website, dementia isn't a specific disease, but rather a condition characterized by symptoms that affect memory, thinking ability and social functioning severe enough to interfere with daily life. The most common cause of dementia is Alzheimer's disease.

As devastating as dementia is to the person diagnosed with it, the condition can also affect a spouse and other family members a great deal.

Alita Arnold is a care manager, on-staff nurse and cognitive therapeutics specialist for home care agency Home Care Assistance, which operates throughout Chicago's northern suburbs. Arnold said the first symptom people affected with dementia experience is usually short-term memory loss.

"There is a normal level of cognitive sharpness that can decline as we get older, like forgetting where we put our keys or trying to find a word we can't put our finger on," said Arnold, who has been in the field for five years. "But when the inability to execute plans and juggle all the details that go into your home or workplace begins to interfere with your life and relationships, it's a problem."

Arnold said when people are diagnosed with dementia, both the patient and his or her spouse usually face fear and sadness, but that every dementia case is different.

"Some patients decline quickly but others could have smaller deficits that stay at the same level for longer periods of time without serious declines," she said.

So, how do you cope if you or your spouse is diagnosed with dementia? Arnold said the best thing couples can do is try and live their healthiest, most active, involved and connected life. What does that mean? Here are her tips:

• Continue to be hopeful and do things you love.

• Stay active or if you aren't active, get active! There is scientific data supporting the benefit of exercise to delay or slow down the progression of dementia.

• Don't isolate those around you. If you see signs of depression, get help. Depression is linked to less favorable outcomes in dementia, so it's very important to address it.

• If you are the spouse, understand personality changes that can come with the condition. These include irritability, aggression, mood swings, paranoia, anger, being sexually uninhibited and inappropriate, and using foul language. Don't take anything personally and realize that the disease is acting out, not your spouse.

• Some patients cover their dementia symptoms with humor or clever tactics to justify not remembering people's names or details when they are asked questions. In a way it can be a good thing because it helps the person maintain self-respect and it protects them. But on the other hand, the people close to them need to understand they are struggling and not put on them the responsibilities they can't handle.

• Know when to step in and have the discussion that he or she needs outside help.

• The spouse has to make sure they are taking care of themselves. They need breaks. They need to get away and do self-nurturing things so that they can be present and healthy for the loved one. That might mean getting part-time or full-time home care or utilizing resources around them such as senior center programs, cognitive stimulation programs, art classes, lectures, etc.

• Be prepared. It is heartbreaking to see your spouse decline cognitively. The person can become mean, demanding and difficult. Again, remember, it is the disease – not your spouse's fault.

• Better overall health means better quality of life for patients with dementia. That's why it is important to address any health issues, including high blood pressure, poor sleep, poor diet or hydration.

• Encourage the patient to maintain social ties and engage in mentally stimulating activities.

I cannot imagine how difficult it would be to see your spouse or a loved one change from the person you've known for so long to someone who might seem like a stranger at times.

As David Cassidy sang so often in his 1970s megahit song, "I think I Love You," it's important to live those words every day, remembering to cherish and enjoy the good and meaningful moments. Because whether they are funny or serious or heartfelt, these are the times that give life and love deep meaning.

SOURCE: Lake Zurich Courier, Jackie Pilossoph

Fire at Tamworth care home caused by discarded cigarette

Staffordshire Fire and Rescue Service have issued a reminder to care homes to take care when disposing of smoking materials.

The call comes after an investigation into a serious fire at a Tamworth care home was found to have been caused accidentally, by a discarded cigarette.

Station Manager John Kitchener, said: "Seven residents were taken to hospital suffering with smoke inhalation and carbon monoxide poisoning but thankfully none of them suffered life-threatening injuries. We’ve been updated that five are due to be released from hospital, with two others receiving ongoing treatment for unrelated medical issues."

Fire crews were called to Standon House in Ashby Road at around 10.45pm on Saturday 15 April, and worked with staff, police officers and colleagues from West Midlands Ambulance Service to safely evacuate 25 residents from the building. Seven residents suffered smoke inhalation; six were taken to Good Hope Hospital and one to Queens Hospital in Burton.

A thorough and detailed examination of the scene found that the fire started accidentally and was caused by a discarded cigarette in an external smoking shelter. The cigarette had not been fully extinguished and caused nearby plants and woodwork to catch fire, before the fire to spread into the ground floor roof space of the home.

Mr Kitchener, who attended the incident, added: "This was a significant fire which will have been incredibly distressing to residents, particularly those who were within bedrooms near the fire. Thanks to the swift actions of care home staff no one was seriously injured.

"Upon discovering the fire, staff alerted emergency services and worked with firefighters, police and ambulance staff to ensure all of the residents were accounted for and safe. Colleagues from the Civil Contingencies Unit were instrumental in arranging alternative accommodation for the elderly residents and the local community have been fantastic, offering their help to the care home in the days following the fire.

"The extensive damage to the building shows just how quickly fire spreads. It highlights how important it is to make sure cigarettes are completely extinguished and correctly disposed of in appropriate bins."

Smoking is one of the biggest causes of accidental fire deaths and is one of the factors Staffordshire Fire and Rescue Service are highlighting in their SAME campaign; an awareness drive focused on raising people’s understanding of what puts them at higher risk of dying in a fire.

Paul Richins, senior fire safety officer, said: "Any business or work place which provides a smoking shelter should consider the potential fire risk this type of structure poses.

"A robust smoking policy should be implemented in conjunction with a fire risk assessment. One of the main considerations when providing a smoking shelter is its location and construction. Good house-keeping arrangements should also be put in place to monitor the disposal of cigarettes in a suitable container.

"Combustible materials of any kind should be kept away from the shelter. This includes materials such as foliage, which could enable the fire to easily spread."

SOURCE: Carehome.co.uk, Melissa McAlees

CONSUMING DIET DRINKS EVERY DAY 'SIGNIFICANTLY INCREASES STROKE AND DEMENTIA RISK'

People who consume diet drinks every day are almost three times more likely to suffer a stroke or dementia, research suggests.

Having at least one diet drink a day increased the risk compared to consuming less than one diet drink a week, a study found.

However, researchers found no link between sugary drinks and an increased risk of stroke and dementia, though they warned people not to view sugary drinks as a "healthy option".

Due to the fact that the study is observational and based on food questionnaires, they said further studies are needed on the links between drinks, dementia and stroke.

The new research, published in the American Heart Association's journal Stroke, is based on data for more than 4,300 people taking part in the Framingham Heart Study.

Those in the stroke arm of the study were over the age of 45, while those in the dementia arm were over 60.

All participants filled in questionnaires on their food and drink intake at three separate points during the 1990s.

Researchers then followed the group for 10 years, noting 97 cases of stroke during that period, and 81 cases of dementia (63 cases were specifically Alzheimer's disease).

After adjusting for factors that could influence the results, such as age, sex, education, calorie intake, exercise and smoking, people who had at least one diet drink a day had an almost three times increased risk of dementia or stroke.

The researchers said future studies should look at the effect of diet drinks on factors known to increase the risk of stroke and dementia, such as high blood pressure.

"As the consumption of artificially sweetened soft drinks is increasing in the community, along with the prevalence of stroke and dementia, future research is needed," they added.

Matthew Pase, senior fellow in the department of neurology at Boston University School of Medicine, said: "Our study shows a need to put more research into this area given how often people drink artificially sweetened beverages.

"Although we did not find an association between stroke or dementia and the consumption of sugary drinks, this certainly does not mean they are a healthy option.

"We recommend that people drink water on a regular basis instead of sugary or artificially sweetened beverages."

He added: "Even if someone is three times as likely to develop stroke or dementia, it is by no means a certain fate.

"In our study, 3% of the people had a new stroke and 5% developed dementia, so we're still talking about a small number of people developing either stroke or dementia."

Rachel Johnson, past chairwoman of the American Heart Association's Nutrition Committee and professor of nutrition at the University of Vermont, said: "We know that limiting added sugars is an important strategy to support good nutrition and healthy body weights, and until we know more, people should use artificially sweetened drinks cautiously.

"They may have a role for people with diabetes and in weight loss, but we encourage people to drink water, low-fat milk or other beverages without added sweeteners."

Gavin Partington, director-general of the industry-funded British Soft Drinks Association, said: "Despite their claims, the authors of this observational study admit they found no cause and effect and provide no science-based evidence whatsoever to support their theories.

"In fact, based on the evidence, Public Health England is actively encouraging food and drink companies to use low-calorie sweeteners as an alternative to sugar and help people manage their weight.

"Surely we should be trying to help consumers reduce their calorie intake, not presenting unproven claims?"

Dr Rosa Sancho, head of research at Alzheimer's Research UK, said: "This interesting new study has pointed to higher rates of dementia in people who drink more artificially-sweetened drinks, but it doesn't show that these drinks are the cause of this altered risk.

"When the researchers accounted for other risk factors for Alzheimer's, such as risk genes, diabetes, heart disease, cholesterol levels and weight, this significant association was lost, suggesting that these drinks are not the whole story.

"Future studies will need to confirm these findings in other groups of people, and explore what might be underlying any link between artificially-sweetened soft drinks and dementia."

Dr Elizabeth Coulthard, consultant senior lecturer in dementia neurology at the University of Bristol, said: "Although interesting, this paper does not tell us that artificially sweetened drinks cause stroke or dementia.

"The statistical relationship between artificially sweetened drinks and dementia disappears when the analysis controls for diabetes.

"This makes it more likely that there is a group of people who both use artificially sweetened drinks and are at higher risk of dementia, presumably because they have a risk factor, such as diabetes, for which a low sugar diet has been recommended.

"While the stroke effect remains even after diabetes has been taken into account, we should bear in mind that this is just one study with relatively small subgroups of participants."

Dr James Pickett, Head of Research at Alzheimer's Society, said: "This research does not show that artificially sweetened drinks cause dementia.

"But it does highlight a worrying association that requires further investigation."

SOURCE: Care Appointments, Jane Kirby