How important is touch in the care of an Alzheimer's patient?

The very first sense we acquire is the sense of touch. We rarely consider how much or how little time we spend providing touch that is not part of the daily routine care for individuals with Alzheimer's or dementia.

Dr. Matthew J. Hertenstein, professor at DePauw University, has conducted studies on the benefits of touch. Some of his research centered on babies and how they respond positively to touch, even when they are in the neonatal unit of the hospital. Similar research on the impact of touch identifies physical benefits such as decreasing blood pressure and pain, improving mood and outlook, and decreasing stress-related cortisol and heart rates.

Touch activates part of the orbitofrontal cortex of the brain and stimulates production of a hormone known as oxytocin, what scientists call the "care and connection" hormone. This reaction in the brain leads to feelings of safety, trust, and a reduction in stress and anxiety. Researchers suggest that touch is truly fundamental to human communications, bonding and health.

For the individual with Alzheimer's or dementia, touch may be the only way of reciprocal communication when that individual becomes nonverbal or at the end stage of the disease. When a gentle caring touch is offered to someone with Alzheimer's or dementia, it can ease anxieties and help increase feelings of general well-being. Even individuals with advanced dementia do not lose the capacity to recognize caring touches. Touch can calm agitated behaviors, reduce agitation, ease physical discomfort and promote sleep. Touch also can make emotional connections to others, particularly because individuals with Alzheimer's or dementia have such difficulty with communication.

There are many ways to provide touch to affected individuals. Hand massages with lotion, pats on the arm or shoulder, hair combing or brushing, or even licensed massage therapy can all help reduce anxiety and fear. However, it is important to keep in mind that "touching" is for the affected individual's well-being and calm, but it does not necessarily mean that the individual will be a willing receiver. Consider the particular culture of that individual, assess their personal nature, and always ask permission to give a hug or offer a hand massage. The act of touch does not have to be anything complicated, like a long, professional massage. Keep it simple and use aromas to accompany the touch therapy. Watch your body language and always give a gentle, reassuring smile.

SOURCE: The Advocate

Dementia care staff call in police four times a day: Sharp rise in number of patients restrained as homes fail to cope

Police and security guards are called out to deal with vulnerable dementia patients four times a day, figures reveal.

They are increasingly summoned by hospital and care homes staff struggling to cope.

One frightened patient was handcuffed to his hospital bed and told he had caused ‘criminal damage’ for accidentally knocking over an oxygen cylinder.

Several hospital trusts say they routinely summon security guards when patients wander off down the corridor, say they want to go home or are unwilling to go to bed. 

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Experts say such forceful measures should be used only as a ‘last resort’ and that it is far better to sit patients down and talk to them reassuringly over a cup of tea.

Figures obtained by the Mail under the Freedom of Information Act show police and security guards were summoned by hospitals and care homes to deal with dementia sufferers on 1,378 occasions in 2015.

But these are almost certainly just the tip of the iceberg as three quarters of forces and hospitals did not record data, or failed to supply it.

The investigation coincides with a report by the Alzheimer’s Society revealing how thousands of sufferers are putting off diagnosis by up to a year. It says dementia is the most feared illness in the UK with two thirds believing their life would be over if they were diagnosed.

The charity’s George McNamara said: ‘It is deeply worrying that police and security guards are being called in to restrain people with dementia so frequently. This would be distressing for anybody, let alone a person with dementia who may be confused and frightened.

‘Use of force should only ever be a last resort … Aggressive behaviour might be a sign of a person with dementia’s discomfort, pain, or lack of stimulation when they aren’t able to communicate.’

A dementia sufferer’s daughter has told how he was restrained by police three times, when all he needed was to be calmed down with a cup of tea.

On one occasion David Steele, 64, was handcuffed to his bed at Tameside Hospital, Greater Manchester, and was told he had caused ‘criminal damage’ for accidentally knocking over an oxygen cylinder.

Daughter Jill Parr, 50, said he was in agony as a result of an abscess but was unable to tell staff because of his condition.

She added: ‘The staff there had no idea how to treat someone with dementia. The ward weren’t giving him his medication, they weren’t giving him his food … just leaving it next to his bed … They treated him like a criminal.’

Caroline Abrahams of Age UK said: ‘It’s hard to imagine just how frightening and upsetting it must be for an older person with dementia to be forcibly restrained.

‘Our common humanity as well as good professional practice demands that older people with dementia are only restrained when absolutely unavoidable … these rising figures surely call this seriously into question.’

The frequency of call-outs exposes a lack of training among doctors, nurses and care home staff on how to cope with dementia symptoms.

About 850,000 adults in Britain have the illness and the figure is expected to double in 40 years as the population ages.

Last year the Government announced mandatory dementia training for all NHS staff, including porters and cleaners, to enable Britain to become a world leader in tacking the condition. But relatives say many nurses still regard sufferers as troublemakers.

One hospital trust, Luton and Dunstable in Bedfordshire, said security guards were summoned if patients said they wanted to leave, were confused or refused to go to bed.

Others including North Cumbria and Rotherham call security if patients wander off down wards.

Figures from 153 hospital trusts in England show security guards were summoned on 790 occasions last year. But fewer than a quarter were able to supply data suggesting the true numbers may be four times higher.

A similar investigation for 2014 showed they had been summoned only 320 times over a two-year period. The huge rise may be due partly to better recording of the call-outs. Figures from police show they attended hospitals to deal with dementia patients 144 times in 2015 and to care homes on 444 occasions. But only 8 of the 39 forces supplied data as most do not record specific incidents.

Katherine Murphy of the Patients Association said: ‘This is hugely distressing for dementia patients … We don’t have enough staff with the compassion and special skills that these patients need.’

A Department of Health spokesman said: ‘The safety and dignity of patients is vital and we have issued guidance to help staff understand challenging behaviour and create compassionate caring environments.

‘It is sometimes necessary to use restraint to stop someone hurting themselves or others, but we agree this should only ever be a last resort.’

SOURCE: Daily Mail Online

Dementia: Raising awareness

Mental and neurological disorders have rightly been gaining more public attention globally in the recent past. A common phenomena associated with mental health is the severe stigma associated with the illness and as a result far fewer people seek help when they or a family member is affected. 

Lack of sufficient knowledge of signs and symptoms of mental health issues also leads to far fewer people receiving professional help during the early stages. This often means that when they do come under treatment, their condition has grown to more complicated levels or is at an advanced stage. As Qatar keeps progressing on many fronts, the health and well-being of its citizens have remained top priority and the area of mental health has not been left behind. Dementia is an area of mental health that has been gaining considerable public attention – the world over, with increasing calls being made to make it a public health priority. Dementia currently affects more than 47mn people worldwide; 2.3mn of them live in North Africa and the Middle East. These figures are expected to rise to 75mn and 4.4mn respectively by 2030.  Dementia is a term that describes several different diseases of the brain caused by damage to brain cells. The brain is so damaged that it affects the ability to do usual, everyday tasks (activities of daily living). Alzheimer’s disease is the most common kind of dementia and may contribute to 60-70% if cases.

The World Innovation Summit for Health (WISH), a member of Qatar Foundation, has been actively committed to highlighting the growing problem of dementia as a global public health challenge. WISH and Hamad Medical Corporation’s (HMC’s) Department of Geriatrics collaborated recently on a community engagement event, to raise awareness about dementia among the general public of this global problem. 
Egbert Schillings, CEO of WISH, said: “Dementia is often overlooked amid more immediate health concerns. However, one out of three people die with dementia and all of us at some point will have the experience of a loved one being diagnosed with dementia. That is why we were delighted to co-host this community event with HMC. WISH is committed to helping advance the dementia agenda, both at a policy level and within the community.”
People with dementia who suffer from conditions such as Alzheimer’s and related diseases have a progressive biological brain disorder that makes it more and more difficult for them to remember things, think clearly, communicate with others, or take care of themselves. 
Dementia affects various areas including: memory, language skills, visual perception (the ability to see and understand what is being seen), the ability to focus and pay attention and the ability to reason and solve problems. In addition, dementia can cause mood swings and even change a person’s personality and behaviour.

Caring for people with dementia poses huge challenges. While everyone agrees the position and responsibility of the care giver, in the dementia landscape is paramount and cannot be overrated, the challenges faced by these individuals, as well as their needs and the support they require, are all too often either forgotten or simply overlooked.
Commenting on the physical, psychological, social and economic impact of dementia on caregivers, families and society, Dr Hanadi Alhamad, chairperson of geriatrics at HMC and WHO Focal Point for the Global Dementia Observatory said: “I can think of no other condition that has such a profound effect on loss of function, loss of independence, and the need for care.”
Dementia is more common in people who are 65 years and older, but is not a normal part of ageing. While there is currently no cure, early detection and treatment may slow the disease and help improve the quality of life of those affected. 
Dementia is a progressive and terminal disease, which means it will continue to get worse with time and lead to death. If your loved one has dementia, it is important to understand that the brain of your loved one has been changed by dementia and that he or she can no longer think, perceive or express their thoughts the way they did before.

SOURCE: Gulf Times, Aney Mathew

Dementia activist Kate Swaffer living a full life after being diagnosed in her 40s

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Kate Swaffer was just 49 years old when doctors said that her inability to remember some words and her mix up of colours and numbers was actually dementia.

In Wellington as a keynote speaker at the Alzheimers New Zealand annual conference, Adelaide-based Swaffer is now 58 and an advocate for people with dementia. She has outlived the prognosis that she might die in six to 10 years, while living a full, active life and achieving far more than many without dementia.

Currently studying for a PHd, it's hard to believe that the eloquent speaker and activist was told by her doctors almost a decade ago to quit her sales job, pull out of university and get her end of life in order. Doctors told her to consider a day in an aged care home one day a month, so she could get used to the place she might eventually call home.

Her teenage sons were traumatised. In their young minds, dementia was a disease that struck "grannies and granddads", not their mother who hadn't yet turned 50.

Friends began ignoring her, while her wider family didn't know how to cope. Her husband was advised to quit his job as he would eventually become her full-time carer. At the time, she was insulted. "I was told by my doctor to give a whole lot up. It wasn't even logical," she recalls.

Named as one of Australia's 100 Women of Influence, Swaffer travels the world inspiring others as a co-founder of the not-for-profit Dementia International Alliance, urging them to make the most of their lives. Two books are stacked on a table at the conference, both written by her, along with a book of poetry she has penned. 

She lives with her condition each day, but she refuses to be labelled "a dementia sufferer". When she is tired, sometimes she jumbles her words and can't speak. She still gets the colours orange and green mixed up, and the numbers 8 and 9, the dyslexia that came on in her late 40s, sparked by her condition. At times, she forgets her husband's name. One of her sadder moments was being unable to recognise a piece of classical music - Mahler's Third Symphony - that was once a joy. 

"Even though I'm living well, or living beyond the perceptions of what I should be able to do, that was the most frustrating thing. I cried for two weeks after that. To go from being able to say I loved it, to not even recognising it, that's deeply sad."

"But let's break the mould of the suffering," she said.

"There are too many of us who are just not suffering. Of course some days I suffer because of dementia, but sometimes I suffer because of the pain of my arthritis. Being told I am a "victim of dementia" is so awful. It's just not like that. And that continues to promote the misconception that it's possible to live a good life with dementia. If we only talk about suffering, and the evils, then the 47.5 million people diagnosed are punished with that view." 

On Tuesday night, she will find out if she is the South Australian winner of The Australian of the Year, for her work with dementia. She has also been named one of Australia's 100 Women of Influence, and graduated with a Master of Science in dementia care two years ago, on the back of a Bachelor of Arts - the degree she was studying for when diagnosed.

"If I lost my legs in a road accident, they wouldn't tell me to go home and die. My life would never be the same again but would they say, "Don't live?" That's how I have approached it and I want others to do the same."

Ironically, Swaffer was nursing 40 years ago in a dementia ward, back at a time when people were diagnosed with dementia far later. In the early days after her diagnosis, she wrote poems about the fear of slipping away and of losing her mind.

She thinks that while earlier diagnosis is good for those with the condition, who can take medication if appropriate and live healthier lives, they are being managed as though they're much further on. "The world is pushing for earlier and earlier diagnosis, but they haven't changed the way they're treating us post-diagnosis."

These days, her poetry is more hopeful. "Near the end I'll be suffering but my family will be suffering far more than me. I know we do suffer at times, of course we do."

Early onset dementia used to be a term for anyone younger than 65, but is now applied to those in their 50s. About 60,000 New Zealanders live with dementia, costing the country $1 billion a year.

Mick Conway, a 61-year-old from Brisbane, was diagnosed with dementia four years ago. Also at the conference, he wobbles and needs to lean on a table to stand up. Dementia has affected his balance, along with his short-term memory. "I won't remember something we talked about 10 minutes ago," he smiles. 

Professor Richard Faull, director of New Zealand's Centre for Brain Research, and considered our leading expert on the human brain, said people with dementia deserve to be treated with dignity, rather than written off and stigmatised.

As Alzheimers New Zealand calls for one year of active support for those diagnosed, he says: "They don't stop being a person once they are diagnosed.

"This is just another challenge in life coming along, and we have to make sure that a person with dementia enjoys every day of their life."

Source: stuff.com. Sarah Catherall

Home care for stroke survivors

If you have undergone a surgery or are on medications to deal with stroke and wondering what’s next, then, rehabilitation is one of the effective ways to help you improve cognitive and physical function. 

However, in some cases, you might be recommended home care with a few visits to rehab centres. So if your doctor has advised regular visits to rehab centres for physiotherapy exercises and occupational therapies, then taking care at home is the next big step. And to help you out, our expert Dr M Udaya Kumar Maiya, Medical Director, Portea Medical shares a few tips that can help caregivers look after a stroke survivor at home.

 Also read about can you suffer a STROKE without even knowing it?

Rehabilitation centres provide an efficient care option for stroke survivors but a majority of patients and families prefer at-home care. Stroke survivors have a better chance of recovery in the comfort of their home. Thus, it is important that a comprehensive plan for recovery and rehabilitation at home be included for the patient’s benefit.

The various types of home healthcare services include the following:

1. Skilled home health care and rehabilitation services: It offers some of the treatment options available in the outpatient rehabilitation setting, and helps them learn in a safe and comfortable home environment.

2. Home modification solutions: These help to make life easier and safer for the survivors. Simple modifications such as handrails on stairs, uncluttered hallways, proper lighting and fall prevention strategies can go a long way to help the survivors.

3. Nonmedical at-home care: These services are available at a cheaper cost than medical home healthcare, to help recovery among the survivors of stroke. It includes counselling and support for the patients. Here’s more on rehabilitation tips for stroke patients.

Caregivers not only help in keeping a tab on doctor’s appointments, medications, rehabilitation visits but also supervise improvement in the patient. they can assist them to work in accordance with the needs of the stroke survivors helping them to recover quickly.

 Some of the key points include -

·         Care coordination and transportation: Caregivers can help patients to keep track of appointments, transportation to and from the healthcare setting, doctor’s office and support group meetings. This reduces the overall anxiety and allows patients and caregivers to focus solely on recovery.

·         Supervision during home rehabilitation: They provide regular reminders, encouragement and supervision to help the patient adhere to the rehabilitation program.

·         Assistance with day-to-day activities: Caregivers can help clients with daily activities like bathing, grooming, dressing, using the toilet while preserving the dignity of clients at such a challenging time.

·         Companionship: They can help combat loneliness and inactivity that may lead to increased risk of post-stroke depression. 

SOURCE: thehealthsite.com, Bhavyajyoti Chilukoti

Care homes ban relatives who complain

Hundreds of care homes are banning relatives from visiting elderly residents over complaints about quality of care, the BBC's Victoria Derbyshire programme has learned.

A Somerset care home prevented a man from visiting his 93-year-old father.

And the children of a woman in a home in Essex say she was evicted after they made a complaint.

The care homes said they had investigated the issues raised by the families.

'Deeply upsetting'

Paul Doolan says he was banned from visiting the care home in Somerset where his elderly father Terry lived, because he complained about the quality of care.

Terry Doolan had cancer, was registered blind, needed hearing aids and used a wheelchair.

The ban meant Paul could meet his father only at a restaurant, with a chaperone, a situation Paul describes as "deeply upsetting".

He says one of his complaints was that on weekly visits, he rarely found his father's hearing aids to be working.

"I had limited time when I'd go in to see Dad," Paul says.

"And because his hearing aids weren't working properly, because his batteries had run out or they weren't clean, it took me a quarter of an hour to sort this out [and] to start speaking properly to him.

"For the rest of the week, when I wasn't there, he probably sat in total silence and... stimulation was very important."

"The care home fees were fairly hefty, and I thought it was the least they could do to make sure he could he

ar properly and give him some fresh air and take him to the doctors."

After visiting his father at the home for three years, Paul was eventually sent an email in August 2012, saying he would have "to cease visits" with immediate effect.

It also accused him of demonstrating unacceptable behaviour towards the staff.

'Grey area'

He says he did not receive any prior warnings and disputes "completely" that he behaved badly.

Terry was eventually moved to another care home, and died three months later.

A spokeswoman for the care home said in a statement: "I can confirm that during the time in question, the home followed all regulations set by CQC [Care Quality Commission] and all guidelines set by our local authority."

Jemma Garside, of Duncan Lewis solicitors, says she regularly sees cases similar to that of the Doolans,

"People would be surprised to know that being in a care home is not the same as being in a normal home," she says.

"You have a contract with the care home, the resident and public body if they're funding it.

"The care home sets the terms and the conditions, and you have to obey them."

Former care worker Eileen Chubb campaigns for better regulation of the care industry.

She says she hears from 50 to 60 families a year in a similar position to the Doolans, and that number is increasing.

"Some people raise a concern, and when it's not dealt with and they raise a concern a second time, they're seen as serial complainers," she says.

"That seems to be a tactic that's used against families who are raising genuine concerns.

"The balance of power is totally weighed against the relative - raising concerns, and whatever the care home says is taken at face value by all of the authorities.

"So the relatives and the residents are the people with the least power, and it's a major part of the problem."

ngela Eastman and her brother Mervyn have had to find a new home for their mother

Angela and Mervyn Eastman say their mother, Careena, 86, was evicted from an Essex nursing home because they lodged a single formal complaint about poor care.

Careena had Alzheimer's disease and was moved into the home in 2013.

The Eastmans say the home failed to adequately treat a gash on Careena's leg.

And they finally made their formal complaint in September 2014, after residents who displayed aggressive behaviour had been moved into the same area as their mother - with neither residents nor relatives being informed beforehand.

But 48 hours later, the home responded, saying it had "thoroughly investigated" their complaint and could not "deal with family needs" or "Careena's needs".

The letter said Careena had been given "notice to quit" the home, and must leave "within 28 days".

Mervyn calls it "an excuse" and "disproportionate".

He says: "Why do we raise a complaint and you find your mum is on four weeks' notice to leave, a very vulnerable mum who's been traumatised?"

With the help of the local authority, Careena is now living at a new home.

A spokesman for the care home said it had a duty of care "to ensure that we are always able to meet individuals' needs, and where we cannot, we are compelled to make unenviable and difficult decisions to ensure that the individual is supported to relocate to a service where their needs can be best met."

Care England says it would be 'useful' for the CQC to keep track of incidents

This had been the case with Mrs Eastman, he added.

The spokesman also pointed out the home had been rated as good by the Care Quality Commission in its two most recent inspections.

The CQC's Andrea Sutcliffe told the BBC: "Later this week we will be publishing information to clarify people's rights and our expectations of providers, so that people living in care homes, their family and friends can be more confident that their concerns will be listened to and acted upon by providers responsible for delivering safe, compassionate and high quality care."

Prof Martin Green, of Care England, which represents many independent care services, says it would be "useful" if the CQC could keep track of how many incidents there are of relatives being prevented visits following complaints, and of residents being asked to leave.

"There may be times residents' conditions change and that nursing home isn't the appropriate place to give that person the right care," he says.

SOURCE: BBC News, Sangita Myska

Is care at home changing for the better?

INVERCLYDE Council has signed up to an ethical care pledge – which will change the way it commissions and runs care provided to people living at home.

The council has signed Unison’s Ethical Care Charter, and the union hopes to get many more local authorities signed up to the commitment.

It asks them to undertake to ditch zero hours contracts and try to ensure people see the same home care worker wherever possible. It allows works to spend the time they need with clients, rather than forcing them to limit visits. It also commits to paying staff the living wage and provide a sick pay scheme.

Unison says The Scottish Government’s demand for a living wage for care workers means councils are now more willing and able to accept the rest of the charter.

An end to the culture of 15 minute visits seems fundamental to me to ensuring care at home works at all.

It is understandable that councils, most perilously cash-strapped and under constant pressure from Central Government and the public alike to spend less, respond to the need to make services more efficient. But the idea that meaningful care could be provided in visits barely long enough to boil a kettle, often from a revolving cast of strangers, has always been a dead end.

Its effect is far-reaching. It doesn’t just make a proper visit impossible. It changes the nature of care and the care workforce. Those who feel they didn’t come into care work to dash into a house, fulful at task such as getting someone out of bed, and leaving without even time for a chat, may choose to do something more fulfilling. Does this encourage the care workforce we want?

Meanwhile the elderly or disabled people receiving the care learn not to ask for extra help, or reach out to discuss a niggling problem or concern.

inRead invented by Teads

Several of the new integrated joint boards (IJBs) set up to coordinate health and social care are considering Unison’s charter too. Their budgets are under significant pressure.

But it does seem as if there is a shift happening towards making care a better valued role, and if more councils and IJBs sign up to Unison’s charter that would be a powerful symbol of that improvement.

SOURCE: HeraldScotland, Stephen Naysmith