Action needed over 'inconsistent dementia training' for students

Student nurses and other trainee healthcare professionals are failing to be taught about dementia care to the same standard due to inconsistent approaches by regulators, academics working in the field have claimed.

The Higher Education Dementia Network, which represents lecturers at 65 UK universities, said nationally agreed dementia training frameworks already existed but were not being used by regulators.

“Professional bodies have a clear role to play in ensuring the health…workforce are meeting the needs of those affected by dementia”

The group said this meant there was likely to be a wide variation in the amount of dementia training healthcare students received at university.

This risked parts of the health and care workforce having different levels of knowledge, skills, competencies and attitudes towards caring for people with dementia, the academics warned.

The Nursing and Midwifery Council’s current training standards do not explicitly require universities to teach students about dementia, although they do refer to working with people with cognitive impairment, said the group.

While new education standards being developed by the NMC do refer to dementia care, there is still no mention of meeting standards set out in nationally agreed skills frameworks, the group said in a position paper published on Tuesday.

The lecturers called for the Nursing and Midwifery Council and other regulators to require universities to adopt the existing training frameworks.

“The existing dementia knowledge and skills frameworks from across the four home nations of the UK have been developed by expert panels”

They said universities in England should be required to use the Dementia Skills and Knowledge Education and Training Framework drawn up in 2015 by Health Education England, Skills for Health and Skills for Care.

In other parts of the UK, the Promoting Excellence Framework in Scotland, Good Work Framework in Wales, and the Dementia Learning and Development Framework in Northern Ireland should be included within the NMC and other regulator’s requirements for university education, they added.

“The existing dementia knowledge and skills frameworks from across the four home nations of the UK have been developed by expert panels including people affected by dementia, health and social care providers or their representatives, governmental bodies and education providers,” said the position paper, released to coincide with the UK Dementia Congress in Doncaster this week.

“In developing our new standards, we engaged with a wide range of stakeholders including dementia charities and we’ve had an excellent response”

Claire Surr, a member of the Higher Education Dementia Network and professor at Leeds Beckett University, said: “Professional bodies have a clear role to play in ensuring the health, social care and housing workforce are meeting the needs of those affected by dementia.

“We would like to see national knowledge and skills frameworks established as a required and monitored sector minimum standard. We recommend that application of the frameworks become a requirement for (re)validation of health, social care and housing pre-qualifying education.”

A spokesman for the NMC said it was vital that nurses were equipped with skills to care for people with a range of complex healthcare needs, including dementia, especially in light of the ageing population.

”That’s why we’ve recently consulted on draft education standards which will enable nurses to deliver the highest standards of care to people with cognitive healthcare needs,” he said.

“In developing our new standards, we engaged with a wide range of stakeholders including dementia charities and we’ve had an excellent response to our consultation. We’ll take this feedback into account as we finalise our standards,” he added.

SOURCE: nursingtimes.net, Nicola Merrifield

Derry health workers receive ‘virtual’ dementia training

Health staff in Derry have taken part in an innovative new training programme aimed at allowing them to understand what people dementia experience every day.

180 Western Health and Social Care Trust (Western Trust) staff began the Virtual Dementia Training on Monday, which is being hosted at both the Waterside Hospital and Seymour Gardens Residential Home.

The aim of the training is to act as ‘a window into their world’ of people with dementia, and gain first-hand experience of the physical challenges and sensory loss that can deteriorate when living with the disease.

To achieve this, the staff were provided with headphones, glasses, shoe insoles and gloves to limit the sensory input people with dementia experience.

Those taking part were then placed into a darkened room whilst talking and movement continued around them, in order to provide participants with an insight into how to approach and interact with those living with dementia.

It was also aimed at giving staff a greater understanding of why people with dementia sometimes exhibit particular and potentially upsetting behaviours.

Commenting, Dr Bob Brown, Director of Primary Care and Older People at the Western Trust said that the training would help ‘enhance’ the care they provide for patients with dementia.

“We were delighted to be able to offer this Virtual Dementia Training to our staff,” he said.

“It is a way of helping staff to experience at first hand the physical and mental challenges facing those with dementia.

Dr Brown continued: “It helps staff understand what people with dementia experience every day and will ultimately further enhance the quality of care we provide for people living with dementia and their carers.”

The Mayor of Derry City and Strabane District Council, Maolíosa McHugh added: “The Council is very supportive of the work the Trust is doing in relation to providing training to its staff that will assist them in gaining a better understanding of the issues facing those with dementia.

“This type of training is a really positive step towards creating better awareness of dementia and giving people the tools to deal with it in their day to day work.”

SOURCE: derrynow.com, Alan Healy

'Dishy' Harry Styles visits care home to play bingo

Harry Styles, the former One Direction singer, chaired a game of bingo at a Warrington care home yesterday, and while there seemed to be initial confusion as to who he was, he won the residents over along the way.

As part of a BBC special with pal Nick Grimshaw, the 23-year-old spent half-a-day at St Oswald's House, and made quite an impression on the residents, with one lady saying “I thought he was rather dishy” and another commenting, “that lad made a big difference to me today.”

Ria Percival, home manager, said: "It was a bit chaotic, but it was a great experience for all the residents and staff that took part. They thoroughly enjoyed the day and Harry and Nick's company.”

As Harry walked into the room to an introduction from the home’s activities co-ordinator, he was met with a loud ‘Who are you?’ He then showcased the bingo prizes, which ranged from handkerchiefs to boxes of chocolates, and a copy of his debut album.

A spokeswoman from the home added: “The residents and team from brighterkind’s St Oswalds House Care Home in Warrington had a wonderful afternoon playing bingo and doing armchair exercise with Harry and Nick. The residents described them both as ‘very nice boys’ and hadn’t a clue who they were. It just goes to show that it’s nice to be important but more important to be nice!

 “Our residents were keen to be involved and thoroughly enjoyed watching the programme when it aired on 2 November. The residents and team organised an ‘Oscar’ evening to watch and celebrate their part in the programme. They went to bed smiling and giggling after seeing the piece about St Oswalds.”

‘Harry Styles At The BBC’ is a one-off special that shows the star performing a number of tracks from his debut self-titled solo album.

In addition to performing, Harry also sits down with host Nick Grimshaw and talks about his career and life to date, being a solo artist and the start of his acting career. The hour-long show aired on BBC One on 2 November.

SOURCE: carehome.co.uk, Melissa McAlees

Should Dementia Patients Be Able To Decline Spoon-Feeding?

Nora Harris, who died in October after a battle with Alzheimer's disease, signed an advance directive stipulating no care to prolong her life. Her husband took the state of Oregon to court because she was spoon-fed against her wishes.

People who abhor the thought of being kept alive with feeding tubes or other types of artificial nutrition and hydration have, for years, had a way out: They could officially document their wishes to halt such interventions using advance directives.

Even patients diagnosed with progressive dementia who are able to record crucial end-of-life decisions before the disease robs them of their mental capacity could write advance directives.

But caregivers and courts have rarely honored patients’ wishes to refuse food and fluids offered by hand.

Margot Bentley, 85, of British Columbia, died last year. She was a retired nurse who had cared for dementia patients before being diagnosed with Alzheimer’s in 1999. In 1991, she wrote a statement stipulating that she wanted no nourishment or liquids if she developed an incurable illness. However, the nursing home where she was a patient continued to spoon-feed her, despite her family’s protests. A court ruling upheld the nursing home’s action, saying that food is basic care that cannot be withdrawn.

Nora Harris, 64, of Medford, Ore., died on Oct. 11 after an eight-year struggle with early-onset Alzheimer’s disease. More than a year earlier, her husband had gone to court to stop caregivers from spoon-feeding Harris, who had an advance directive that called for no artificial nourishment or hydration. A judge declined, siding with officials who said the state was required to feed vulnerable adults.

To try to reverse this trend, a Washington state agency that advocates for medical aid-in-dying has created guidelines for dementia patients who don’t want to be spoon-fed at the end of life.

The group End of Life Washington, or EOLWA, which assists people using the state’s 2009 Death with Dignity Act, recently posted a guide called Instructions for Oral Feeding and Drinking on its website.

Aimed at people with Alzheimer’s disease and other progressive dementias, the document provides a two-page template for patients to instruct caregivers not to provide oral food or fluids under certain circumstances. There’s another document explaining the do’s and don’ts of using it.

The instructions are ground-breaking for patients who fear losing control not only of their faculties but of their free will to live and die on their terms, says Sally McLaughlin, executive director of EOLWA.

“We get calls from folks with concerns about dementia and concerns about the fact that loved ones with dementia feel like they’re being force-fed,” McLaughlin says. “Many, many folks understand that as they stop eating, they would like no one else to feed them.”

Critics say the new document raises concerns about potential mistreatment of vulnerable patients, arguing that such “instructions” could be used essentially to starve the elderly or incapacitated.

“It really is troubling,” says Stephen Drake, research analyst for the disability rights group Not Dead Yet.

He points to other so-called right-to-die efforts, such as the refusal of artificial nutrition and hydration, saying they started out narrowly defined and then became common practice.

“It really is a big game changer in the number of people whose lives can be ended when they’re in vulnerable situations,” Drake says. “In legal situations, this is a door-opener.”

Proponents of the guidelines say they fill a gap in information for people already interested in navigating the uncertain landscape that surrounds assisted feeding at the end of life.

“What we are saying is that there are objective and somewhat subjective conditions in the future where you can say ‘I’m giving you instructions now to help you interpret my wishes,’ ” says Bob Free, a Seattle lawyer who helped draft the document. “We have never really seen a standard form or advance directive to govern this.”

The guidelines do not apply to people with dementia who still get hungry and thirsty and want to eat and drink, the authors note.

“If I accept food and drink (comfort feeding) when they’re offered to me, I want them,” the document states.

But if the person appears indifferent to eating, or shows other signs of not wanting food — turning away, not willingly opening their mouth, spitting food out, coughing or choking — the document says attempts to feed should be stopped.

And the guidelines tell caregivers to respect those actions.

“No matter what my condition appears to be, I do not want to be cajoled, harassed or forced to eat or drink,” the document states. It adds that the “reflexive opening” of the mouth should not be interpreted as consent to eating.

“We think this is a fairly objective test, which in real life will be clear,” says Free.

The new guidelines aren’t binding, legally or ethically, experts say. Nearly two dozen states have laws that address assisted feeding, including many that prohibit withdrawing oral food and fluids from dying people.

“The hard part about advance directives is even though you put your wishes there, it doesn’t mean a medical professional will honor it, or that a facility will honor it,” says Jonathan Patterson, staff attorney for Compassion and Choices, a group that supports medical aid-in-dying. But having a template should help make those wishes more clear.

Cases like Harris’ and Bentley’s horrify people who fear the same fate. Nancy Christensen, 60, a Seattle nurse, says she updated her living will herself within days of reading about Harris.

“I thought, ‘Wow, I need to be much more specific,’ ” says Christensen, who appended notes saying she doesn’t want assisted feeding if she can no longer feed herself. “I don’t think anybody thinks about this until they’re too far into it.”

Free, 71, says he plans to fill out the new documents himself.

“It’s been a personal desire of mine to have a dignified death,” he says. “The idea that my sons would have to witness me in a deteriorated state is very frightening and demoralizing.”

Whether the decision to voluntarily stop eating and drinking can be authorized in advance by people diagnosed with dementia remains unclear. The question has gained traction in a nation where dementia cases in people 65 and older are projected to reach 7.1 million by 2025.

Paul Menzel, a bioethicist and professor emeritus at Pacific Lutheran University in Tacoma, Wash., says some people want to avoid the most debilitating stages of the disease. “It’s not misery they’re afraid of,” he says. “They just don’t want years of withering.”

The End Of Life Washington document is a novel tool, but it may not go far enough, says Judith Schwarz, clinical director for End of Life Choices New York, which advocates for medical aid-in-dying. The conditions it lists typically apply to the final stages of dementia, she says. Some patients want the right to refuse food earlier in the disease process in a deliberate effort to hasten death.

Until now, however, there have been few models for articulating those desires.

“It certainly is an improvement over no previous mention of hand-feeding,” Schwarz says. “Maybe this is where it must begin.”

SOURCE: wabe.org, Jonel Aleccia

Mother aged 98 moves into care home to look after 80-year-old son

A 98-year-old mother has moved into a care home to look after her 80-year-old son.

Ada Keating and her son, Tom, have always lived together as Mr Keating never married.

He moved into the Moss View Care Home in Liverpool in 2016 because he needed more care and support and one year later his mother followed to help look after her eldest son, the Liverpool Echo reported.

“I say goodnight to Tom in his room every night and I’ll go and say good morning to him,” Ms Keating, a former auxiliary nurse, said. 

“When I get back he’ll come to me with his arms outstretched and give me a big hug. You never stop being a mum.”

Mr Keating, who was a painter and decorator, said he was happy to have his mother at the care home. 

“They’re very good here and I’m happy to see my mum more now she lives here.”

Care home manager Philip Daniels said the pair are inseparable. “It’s very rare to see mothers and their children together in the same care home and we certainly want to make their time together as special as possible,” he told the Echo.

SOURCE: Independent.co.uk, Shehab Khan

Caring husband learns how to apply his wife's make-up before she goes blind

An elderly man has become an internet sensation after taking regular make-up classes, so he can learn to do his wife’s make-up before she turns blind.

Brian and Jean regularly visit the beauty section of a department store in Glasgow to learn the latest tips and tricks.

Touched by the couple’s dedication, Scott Summers, a store employee, shared their story across various social media platforms, along with a photograph that has since gone viral.

He wrote on Twitter: “Why I love my job so much! Meet Jean and Brian, two of our very loyal customers. Brian was in for another make-up lesson today as he does his wife's make-up everyday as she is going blind, such a wonderful couple who live their life to the full!”

The heartwarming image of Brian standing proudly next to Jean, who is sporting a fresh face of make-up, has been shared on Reddit, Facebook, and Instagram, and amassed more than 220,000 likes and 72,000 retweets.

Overwhelmed by the couple’s story, Twitter users have left several comments. Some simply commented on what an uplifting story it is. “That melts my heart,” said one person, and another added: “What a truly lovely story.”

As of 2015, over two million people in the UK are living with sight loss. According to The Royal National Institute of Blind People, one in five people aged 75 and over are living with sight loss and nearly two-thirds are women.

There are four known major causes of sight loss including; macular degeneration, glaucoma, cataracts and diabetic retinopathy.

SOURCE: carehome.co.uk, Melissa McAlees 

Why care costs are spiralling at up to twice inflation

The average cost of a care home place has almost doubled over the past two decades and is now nearing £1,000 a week, according to the latest data.

A cruel combination of short supply, care home operators falling into financial difficulty and tightening local authority budgets means private payers – those who get no assistance with fees – are especially hard hit.

Research carried out earlier this year by industry experts LaingBuisson found that the average weekly fee for residential care with nursing had risen from £445 in 1998 to £845 this year.

For residential care the cost has risen from £322 to £605. Analysis by Telegraph Money found average inflation across this period has been 2.7pc per year, while care fees have risen by roughly 4.4pc a year. Those figures are for care costs as paid both privately and publicly.

But the gap between the price paid by state-funded residents and those paying for themselves has continued to widen, with self-payers thus suffering a higher rate of inflation.

According to statistics released by NHS Digital last week, local authorities received 1.8 million requests for help last year. This figure is rising.

As demand for assisted care home places grows, the prices for those who self-pay rise. This is because the amount paid by local authorities is artificially low.

Care home providers – facing steep increases in cost from the introduction of the national living wage, among other factors – are thus forced to press the “self-payers” for more, according to Andrew Kaye, policy director at the charity Independent Age.

Families paying for their own or others’ care increasingly need to factor in high future inflation – almost irrespective of wider inflation, financial advisers say.

‘My care costs rose by 5.4pc a year’

One way of ensuring you have the money to cope with annual rising care fees is by purchasing a “care annuity”. One Telegraph Money reader managed to use an annuity to pay for the vast majority of his wife’s four-year stay in a care home after she was diagnosed with dementia.

When, at age 75, she first moved in to the home, located in west London, in 2011, the weekly fee was £715, but by the time she died in 2015 she was paying £870 – an annual rise of 5.4pc.

The couple had applied to receive local government support but had been turned away because their assets totalled far more than £23,250 (the threshold is higher in Wales and in Scotland). 

Using their savings, they purchased a care annuity for £248,000, which covered three-quarters of the fees (so paying a starting income of about £28,000 per year) and grew at a rate of 4pc. These annuities are guaranteed to pay out for as long as the person remains in care. 

“We didn’t get our money back,” said the retired engineer, who is now 85. “Whether you buy an annuity or not is entirely dependent on the life expectancy, but I felt my wife might live for 10 years.

“The annuity gave us financial security. It would last for her life, so if I died or anything happened to me I knew she would be OK.”

An annuity paying £20,000 a year for care fees, and growing by 5pc a year, would now cost £173,500 according to Just, the retirement finance specialist firm.

Just calculated quotes for Telegraph Money for an annuity paying £30,000 a year, with an escalation of 4pc, for hypothetical patients aged 75, 80 and 85.

For residential care, the policies would cost £258,900, £226,800 and £187,800 respectively, and for nursing care, the policies would cost £217,500, £199,700 and £172,000. The company said the actual cost could vary significantly from client to client.

Nursing care annuities are sometimes cheaper to reflect the person’s shorter estimated lifespan.

Our reader also expressed concern at the gap between fees paid by local authorities and self-funders. The LaingBuisson data suggests self-funders pay a premium of 40pc.

A preliminary report from the Competition and Markets Authority, published last month, also suggests the real fees paid by local authorities are lower now than in 2010, hurting private care home operators, which make up the majority of the sector.

The care home in which our reader’s wife lived told him it wasn’t viable to take on a resident funded solely by a local authority. It required their families to top up the fees where assistance was available.

And the reader warned that the costs don’t stop with the care home fees, with residents still having to foot many everyday costs. “Clothes are a problem because you can’t just go to the shop,” he said. “We had to buy clothes from a mobile shop that came round to the home. We ended up spending £800-£900 a year on clothes.”

What are the options?

Mr Kaye said that families often feel overwhelmed when faced with potential care fees of several hundreds of thousands of pounds. But there are many ways to get funding or mitigate the cost.

The NHS can fund care via its “continuing healthcare” programme, which is available to those forced into a care home because of medical conditions including strokes, severe arthritis and some forms of dementia.

Care home residents can be assessed every year as they may have deteriorated to a level where they become eligible for state support.

Mr Kaye said: “Make sure to check if the NHS will pay. The pressures on the service are huge, but if someone has quite complex needs they might be able to get it paid for.”

Those who have self-funded a stay in a care home can also claim a refund if their loved one should have been covered by the NHS. Reader Stan Gibson successfully reclaimed £226,559 for his father’s five-year stay.

Mr Kaye also said everyone considering a care-home stay should research whether this is actually the most appropriate option. In-home care could be a cheaper and more amenable choice.

Age UK and Independent Age have information online on funding care. The latter has just launched its Paying For Your Care guide.

SOURCE: The Telegraph, Sam Meadows