A Crisis for Seniors with Dementia in England

As the battle over healthcare reform continues here in the United States, we need to keep an eye on similar healthcare issues in other countries and more importantly, who the winners and losers will be in this battle. Just last week, several large newspapers in England gave us a look at one group that is losing big – seniors with dementia.

Just over six years ago when the Olympics came to London, they touted their healthcare system as a success. So proud of their National Health System (NHS) were the British that they included a troupe of over 2000 dancers employing 300 hospital beds as part of their opening ceremony celebration. Politicians lined up to sing the praises of this single payer plan when most, claim their critics, knew that it was heading for a massive failure.

As 2018 rolled around, the wonders of the NHS have turned into nightmares for many British citizens. According to multiple press reports, this years hard hitting flu bug has highlighted just how much trouble the system is in.

Patients have spoken of 12 hour or longer waits at those emergency rooms who are accepting patients, ambulances are lined up outside the hospital with sick people inside and doctors are complaining that they are being forced to practice “battlefield medicine” in “third world” conditions.

According to angry patients and healthcare professionals, the NHS has started to

implode. Newspapers have published op-eds about the over-burdened emergency rooms, hospitals so full that patient beds are jammed into hallways and many of those waiting for services being put on hold. Because of this problem, nearly 60,000 non-emergency surgical procedures have been cancelled to date with more cancellations to come.

British Prime Minister Theresa May recently issued an apology to the citizens of England for the surgery cancellations and the fact that emergency rooms have had to turn away sick people, but she insists that no crisis exists, but numbers do tell a different story.

The NHS, by all accounts, lags behind other European countries’ healthcare systems when it comes to patient outcomes. A recent report from medical authorities states that Britain leads all of Europe in over weight young adults and with that comes the accompanying diseases such as Type II diabetes and cardiovascular issues. Because the lifespan as increased, those with these conditions age and become sicker for longer periods of time. Not only are obesity related issues on the rise but so is depression and dementia. Chronic illness is now a fact of life for many in England which ultimately requires more care and, of course, more money. But this is not a new development.

Since 1948, the budget for the NHS has risen nearly one hundredfold with chronic care now accounting for 80% of the NHS budget. Even with this large increase, funding for services are not keeping pace with the needs of an aging society with chronic health issues. The result has been cutting services such as round the clock emergency rooms, non-emergency surgeries and the closing of nearly half of the country’s walk-in clinics.

So how does this effect the elderly with dementia?

Medical records indicate that the number of dementia patients in Britain is closing in on one million and is forecast to double in just 30 years. As these numbers continue to rise, the number of facilities that provide care are decreasing. A recent study indicated the in the past ten years alone, over 900 care facilities have closed sending 30,000 patients in search of care.

For the elderly with dementia related needs, funding is quickly disappearing. Care homes have begun to turn away residents with advanced dementia, stating they are too expensive to care for. According to The Daily Mail, the chief executive of that country’s Alzheimer Society said its helpline continues to be overwhelmed with calls from families whose relatives have either been refused care or are being evicted when their medical conditions deteriorate.

It has also been reported that managers at care homes are “cherry picking” those who are cheaper to care for which usually leaves dementia patients without a place to go – except into a hospital bed – and health providers have stated that the situation has gotten “markedly worse” in the past two years.

Those homes that are accepting patients may be so far away that families have a difficult time making regular visits which opens concerns such as without family oversite, what may be happening to those who cannot speak or defend their rights?

One family member told a local paper in London that she called over 30 care facilities before finding one that would accept her mother who was diagnosed with vascular dementia. Another stated that the only home available for her father was nearly 200 miles away.

Some care homes are reportedly sending patients to the hospital for medical care

and then refusing to accept them back, stating they cannot provide the needed medical care for them. As a result, dementia patients are being held in hospitals at a rate seven times that of other people until the hospital can find an appropriate care facility for them.

To address the lack of NHS funding and the closure of care homes, the government undertook an initiative in 2014 called “Care in the Community” for dementia patients. This act was designed to allow those with dementia to be cared for in their own homes so to limit the number of in-patient admissions and theoretically reducing costs. As good as this sounds on paper, the realities are much different.

The children of these patients have jobs and families and are often unable to provide the appropriate care for confused and at times aggressive high-risk relatives with dementia. This has led to an increase in family discord leaving many loving family members with feelings of guilt because they lack the skills to handle the problems that dementia brings with it.

A healthcare professional from Massachusetts that I spoke with recently stated that this initiative of keeping dementia patients in the community reminded him of the de-institutionalization of the chronically mentally ill back in the 1980s. The plan there was to place these patients into community residences and develop “catchment areas” which would be responsible for the monitoring of the mentally ill living in that community. Such monitoring was to include assurances that those with mental illness would take their medication regularly. Unfortunately, these patients ended up not taking their medications as directed and turned up homeless on the streets, a problem that continues today.

Surely such a thing cannot happen to someone with dementia, right? Well think again.

On this past Christmas Day, The Telegraph, another British newspaper, reported that a grandmother with dementia was discharged from a hospital and dumped on her own doorstep by an ambulance with no keys, dressed only in her pajamas and slippers. She was found by neighbors soaked in the rain while trying to open her front door. The hospital’s explanation was that their protocol for ambulance drivers is to ensure such patients are placed in their homes safely. Hospital administrators stated that they were “not clear what happened in this particular case”.

Such an activity, called “patient dumping” occurs more often with homeless patients who have been discharged and dumped at the front door of a homeless shelter. That is serious enough, but it is also occurring now with elderly homeless, who may be suffering from undiagnosed dementia. And England is not alone in this reprehensible action.

In early January, a hospital in Sacramento, California became embroiled in a controversy when a 78-year-old confused man with a bad hip and arthritis was discharged from a hospital emergency room, placed in a taxi, and dropped off in front of a homeless shelter and left to his own devices. He was found roaming the streets, cold and wet until he was taken into a warming center the following morning.

One of the problems here is that of perception – many of us do not identify with the homeless who often are suffering from mental illness or addiction, so we tend to ignore such stories. But one thing we can all identify with is aging. We will all get old and need assistance.

What is happening in British care facilities is also happening here. The problems they are experiencing is already barking at our doorstep and in some cases, stepped inside and nipping at our heels.

In an article that appeared in American Nurse Today, the author cited a case of a patient named Margie, who was 86 years old and developed a bladder infection and with it came a high fever. As is common with the elderly, fevers cause confusion and as she was being prepared for hospital transport, she became combative and verbally abusive. On the way out of the facility, she screamed at the medical staff that they “better not tell anyone” where she is going. When her elderly family members called to check in on her, they were told that HIPAA prevented staff from giving them any information (which is why I advocate so vociferously that advanced healthcare directives be a part of everyone’s care planning).

A few days later, Margie was feeling better, her fever had subsided and she was once again lucid. When the hospital called the nursing home to arrange discharge, they were told she no longer had a bed and could not return. Staff at the home had cleared out Margie’s room as soon as she was hospitalized and refused to take her back, all without warning. This was not only reprehensible but illegal.

Let me be clear, this is not about jumping on nursing homes, long term care centers or rehab facilities because the overwhelming majority of them do wonderful work and truly care for their patients. But the case I just cited is to point out that as we continue to struggle with an aging society and increased healthcare costs, cases like this may become the norm here.

In Britain, it started with putting seniors with dementia into hospitals as the care homes closed. And here in the United States, nursing facilities are also closing or being sold in alarming numbers. This is due in part to our own "Care at Home" model but also because of cuts in Medicare and Medicaid.

Nursing home closures are occurring at a rapid pace across the country including here in middle America. Kindred Healthcare has also announced closures in Massachusetts as well. Watch this news report.

This "Care at Home" model is a wonderful thing if a senior can live independently or with family support, but what if they can’t? Like Britain, we are an aging society and the trends are for a tremendous increase in dementia rates in the very near future. According to the Alzheimer’s Association, there are currently 5 million people living today with dementia here in the United States, with a forecast that by 2050, that number may reach 16 million.

And like Britain, how many American families will be able to provide the specialized care needed for advanced dementia patients?

With long-term and specialized nursing facilities closing, where will those with dementia be placed when such specialized care is needed? It appears that hospitals will bear this burden. To deal with this problem in Britain, a healthcare professional there states that dementia patients are now just being drugged and warehoused due to the lack of such care facilities and woeful under-staffing.

“Without specialized care offered by units such as mine, with access to psychiatrists, psychologists, physiotherapists and occupational therapists, people with dementia are essentially being discarded. They are sedated with benzodiazepines and antihistamines to keep them from wandering the hallways. They become bedbound due to the lack of appropriate therapies or develop behavioral problems because they are bored and without proper stimulation. They can end up being admitted to hospitals or acute mental health wards – confusing and scary for someone with dementia”, he said.

As with the de-institutionalization of the mental ill, there is always a cost on the other end. What may happen here is that those with dementia will take up more hospital beds as specialized and long-term nursing facilities close. Because of this, hospitals (which have much higher operating costs) will be unable to offer other care and will fail due to the low reimbursement rates paid for the care of dementia patients. When hospitals close, easy access to care for everyone will become more difficult to find. As a result, not only will seniors with dementia suffer, but providing appropriate medical care for all in our society will be affected.

We need to watch this and learn from what is happening in Britain. Our elders have provided us with safety when we were young and raised us with love and caring and now we must advocate for them. If we want to succeed in keeping those with dementia safe, we must support the millions of families who have been touched by this disease and the millions more who will follow. This includes letting our lawmakers know that our senior citizens are not commodities to be discarded when they need help. Today, more than ever, our voices need to be heard before it’s too late.

Let me wrap up my blog with this quote by a Rabbi named Abraham Heschel, “A test of a people is how it behaves toward the old. It is easy to love children. But the affection and care for the old, the incurable and the helpless are the true goldmines of a culture.”

How will we be judged?

Attorney Connelly practices in the area of elder law. This area of law involves Medicaid planning and asset protection advice for those individuals entering nursing homes, planning for the possibility of disability through the use of powers of attorney for the both health care and finances, guardianship, estate planning, probate and estate administration, preparation of wills, living trusts and special or supplemental needs trusts. He represents clients primarily in the states of Rhode Island, Connecticut and the Commonwealth of Massachusetts. He was certified as an Elder Law Attorney (CELA) by the National Elder Law Foundation (NELF) in 2008. Attorney Connelly is licensed to practice before the Rhode Island, Massachusetts, Connecticut, and Federal Bars.