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

Tamworth Memory Cafe to provide place for people impacted by dementia

A NEW cafe project is set to open next month to help more people and their families living with dementia.

The 'Memory Cafe' is being organised by Home Instead Senior Care, who have been supporting people to stay independent within their own homes for the last seven years in the Tamworth area. The team recently opened a new office in Offa House and are passionate about caring and supporting people living with dementia.

The cafe is set to be opened on May 2, in partnership with The Heart of Tamworth Community Project at St Johns Church.

Sally Clough, Director of Home Instead Senior Care, said: "A Memory Cafe is a friendly place to meet for people with memory loss and their carers or loved ones. It's somewhere to laugh, share concerns, talk openly without being judged, discuss dementia with experts and others a similar situation.

"The social side is the most important aspect of the cafe, it's an opportunity to engage, maintain skills, keep an active mind by being stimulated by the environment, meet new friends and have a sense of belonging.

For those that support a person living with dementia it's a chance to get a few hours of respite, support from experts to learn how best to continue to meet the needs of their loved one and help manage the behaviours.

SOURCE: Tamworth Herald, Sam Jones

Trying to avoid care home fees? Think twice, consumers told

Care from the NHS is free, but if you need social care because you're physically or mentally frail, you have to pay for it yourself.

And it is not cheap.

The latest figures show a place in a residential care home in the UK costs, on average, more than £30,000 a year. A nursing home costs more than £40,000 a year. In the South East, it is £10,000 a year more than that, according to consultants LaingBuisson.

There is financial help from local authorities, but it is strictly means-tested.

You only qualify if your home, savings and investments are together worth less than £23,250.

If you are worth more than that, you have to pay the full cost of your care - during your lifetime and, if necessary, from your estate after you have died.

It may not leave much for your family to inherit.

Which is why marketing leaflets from a will-writing firm called Universal Wealth Preservation are eye-catching.

The leaflet claims that 45,000 families are forced to sell their homes every year, to pay for care.

'He thought it was a good thing'

In 2015, one of Universal's leaflets dropped through the letterbox of retired teachers Susan and Don Steer. Don had just been diagnosed with a terminal cancer.

Since the Steers owned their home near Hull outright, and had savings as well, they would not qualify for council support.

"Don thought that if he had to go into a care home or nursing home that we would have to pay and we could lose the house," Susan recalls. "Universal said they could protect the house from care home fees, and he thought that would be a good thing to do."

So, after a home consultation with a Universal representative, the Steers signed up, paying Universal a fee of almost £4,000.

he was told she wouldn't need to sell her house

Universal's scheme works by transferring the ownership of assets like a home or savings into what it calls a "Wealth Preservation Trust".

Trusts are legal devices designed to hold assets on behalf of named beneficiaries - often children.

With a trust owning the assets, the theory is those assets will no longer be counted in the means test. That should make it more likely that the individual will qualify for local authority help.

But there's a big catch.

Trusts

According to Bridgette Shilton, chair of the National Association of Financial Assessment Officers, if avoiding care fees is a substantial motive for putting assets into a trust, then a local authority can challenge it as "deliberate deprivation".

"If people are trying to protect their house in the avoidance of care fees then that's not allowed; that is a clear deprivation of assets. It doesn't work," Ms Shilton says.

"As soon as we find out a property has been transferred we will be looking into the motivation, we will be asking questions."

If trusts are genuinely set up for reasons other than avoiding care fees, Mary Butler, the senior partner of solicitors Bell Buxton, says they may succeed in avoiding care fees as well.

"I'm not saying that these products would not in certain circumstances work, if you were seeking to part with ownership of a property when you're fit and healthy, when there's no prospect whatever that you're going to go into a home."

But with the financial squeeze on local authorities growing, Mary Butler says, it's getting harder to slip such trusts under the radar.

"We've got a social care crisis on our hands now, a local authority funding crisis, so they're using every possible means to get money in. The people who are looking at these forms are wise to the stunts that people pull."

Don Steer died last year. He never did pay care fees because his treatment was covered by the NHS.

Care cap

Universal says its representative wasn't told the Steers' main goal was protecting the family home from care fees. It says it wasn't told that Don's cancer was terminal and would have provided different advice if it had been.

Surprisingly, while care fee protection is prominent on Universal's marketing fliers, the company told the BBC: "We deny that we offer strategies to avoid paying care fees."

We wanted to explore what lies behind this apparent contradiction, but Universal did not take up the BBC's offer of an interview.

Potential customers might therefore be wise to ask searching questions of their own, or to take advice from a solicitor before signing up.

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Universal is one of a number of firms offering such services. Almost all are unregulated, so customers have nowhere to complain if things go wrong.

In 2013, Chris Grayling, then Lord Chancellor, turned down a recommendation from the legal industry and consumer groups that will-writing should be regulated.

And the government has delayed the introduction of a £72,000 cap on the amount anyone has to pay towards their care. Originally scheduled for April last year, it's now postponed to April 2020.

Financial catastrophe

Economist Andrew Dilnot, the chair of the commission that first proposed the care fee cap in 2011, says a cap would remove the fear generated by a means test he describes as the "most pernicious" in Britain.

He says a £72,000 cap would also reduce the incentive for people to try to avoid paying them altogether.

"If we could get the cap in place, the worst case is that you'd be liable up to the cap. So you're taking away the catastrophic element and I think then the avoidance industry would find things much tougher."

Removal of the fear of the financial catastrophe would also reduce the moral dilemma care fees now pose for people like Susan Steer.

"I'm torn about what I feel," she says. "I don't like the rule about having to sell to pay for care home fees. On the other hand, I've got socialist views so it sounds ludicrous, but it's human nature to not want to sell the house."

SOURCE: BBC News, Michael Robinson

Care home praised for 'invaluable contributions' to Emmerdale's dementia storyline

For almost two years, MHA (Methodist Homes) have been advising ITV’s long-running Emmerdale show on its storyline involving village vicar, Ashley Thomas, developing dementia.

The storyline, which has also been conceived and produced with support from Alzheimer’s Society, has been lauded by fans and critics alike for its accuracy and realism.
Emmerdale’s series producer, Iain McLeod, said: "MHA’s expertise in the field of caring for people who are living with dementia has been invaluable to us. They help and support people like Ashley and his family every day through their work.

"It is such a sensitive subject and something that is close to people’s day-to-day experiences as so many hundreds of thousands of people and their families live with it.
"Being able to discuss developments in Ashley’s story with Kate and the team at MHA, right through to their comments on scripts and what characters say and how they are behaving, has really helped us get it right."
The Emmerdale production team have been working with Glen Rosa care home in Ilkley Road, where actors John Middleton, who plays Ashley, and Charlotte Bellamy, who plays his wife Laurel, have been meeting with residents and family members.

The care home visits have informed ITV’s realistic depiction of the progression of Ashley’s dementia and captured how the condition can affect family members and friends.
Last year, viewers watched the emotional storyline unfold, which saw the former vicar diagnosed with stroke related early onset vascular dementia. Over recent months they have seen his condition steadily worsen.
In December, an entire episode was filmed through Ashley’s eyes, letting viewers in on his distorted view of the world.
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The 63-year-old actor hopes the heartbreaking climax to the story will help change people’s attitudes towards dementia.
He said: “We have been very aware that there had to be an immense amount of integrity to the telling of the story. We absolutely needed MHA’s support and their knowledge and the way in which they could introduce us to people who could tell us their stories.
"As I started researching vascular dementia, I thought we had a huge responsibility to get it right. A lot of people have first-hand experience and awareness of dementia so meeting people with dementia and their carers has been vital.
"The way in which we have told the story is quite challenging but we are hoping to give at least something of an insight into what the world is like for someone living with dementia."
Regional director at MHA, Linda Zaidi, added: "For us, it’s been about using our expertise in the field of dementia care to make sure that they get the storyline as accurate as possible, from Ashley’s diagnosis through to his admission to a care home and his eventual death.
"We have been impressed by Emmerdale’s research and dedication to making sure the storyline about Ashley developing dementia and the effect it has on his loved ones has been realistic.

"What has also been great was the courage of ITV to screen such a storyline and tackle the issues that come with it."

SOURCE: carehome.co.uk, Melissa McAlees