Majority of Advanced Dementia Sufferers Fail to Get Specialist Care

A recent study that has been carried out in the UK has found that the majority of advanced dementia sufferers are not getting the specialist care that they need. There are various home care services available in the UK that can provide sufferers of this condition to get in home care. However, the study suggests that more services are required in order to take the onus off GPs and emergency services.

The study was carried out by the Marie Curie Palliative Care Research Department at London’s University College. Worryingly, the results suggested that up to 99 percent of advanced dementia sufferers were being looked after by GPs and emergency services, who often end up sorting out palliative care for the patient.

No planned response to patient needs

As part of the research, 85 advanced dementia sufferers from six different clinical commissioning groups across the UK were studied. Researchers involved with the study said that only 1 percent of these individuals had been seeing a specialist such as a geriatric doctor or psychiatrist. On the other hand, close to 20 percent were seen by paramedics in the few weeks leading to their death. Officials said that this suggested that advanced dementia patients were only receiving reactive attention and treatment rather than being part of a planned programme to treat their ongoing needs.

The research went on to suggest that the main care provider in the last weeks of an advanced dementia sufferers life was their GP. In a breakdown of the figure, it was revealed that 96 percent of those that were suffering from the condition had seen their GP during the final month of their life.

The report has raised concerns over patients’ access to secondary healthcare services, as it suggests that there is a lack of specialist support even for the GPs dealing with the patients. Palliative care teams were found to have been involved in the management of symptoms. However, although 34 percent had been referred only 28 percent were found to have actually seen a palliative care team. In cases where they were seen, it was generally in the run-up to their death.


The result of the study has caused concern over the number of dementia sufferers being left without the specialist care that they need. It has also raised concerns over the increased pressure being put on GPs and emergency services.

Can Assistance Dogs Help Those with Early-Stage Dementia?

Most people are accustomed to seeing people who have impaired vision or who are blind receiving assistance from guide dogs. These dogs have been trained to help those with visual impairment, enabling them to get around with greater ease and to perform day to day tasks. However, a new study in Australia is now looking into the use of these assistance dogs to help patients with early-stage dementia.

When it comes to aged care facilities, there are a number of options available to those that are suffering from dementia. This includes facilities such as day respite centres, overnight respite facilities, day centres, and support groups. However, in addition to these respite care and support facilities, it is thought that assistance dogs could offer dementia patients a new lease of life.

Assistance dogs being re-trained

As part of the project, a number of assistance dogs that are usually used to provide help to the visually impaired are being re-trained. The training is designed to teach the dogs to provide assistance to those who suffer from early-stage dementia as well as to their carers. The study is being overseen by a number of organisations. This includes Dementia Australia, the University of Melbourne, and Vision Australia Seeing Eye Dogs.

A number of early-stage dementia patients have already been teamed with assistance dogs, and those involved with the training have been checking on their progress. So far, the results have been very positive, which suggests that assistance dogs could actually make a big difference to the quality of life of those with early-stage dementia.

A positive experience

One dementia patient who was teamed up with an assistance dog twelve months ago described it as a very positive experience. She said that she looked after the dog and he looked after her. Her partner and carer also agreed that since the assistance dog had become part of their lives, it had made a huge difference. She added that they had to spend much more time at home now due to progression of the dementia but that the dog made it far easier for them to do that.

The training of these dogs is pretty comprehensive. They are taught how to sense the mood of their owner as well as to sense anxiety. In addition, they are trained how to differentiate between different tones of voice and even to provide assistance if their owner gets lost. One official from Dementia Australia said that the dogs were proving to be a huge bonus in the treatment of dementia.

Respite Care and Dementia – A Tricky Combination

According to Alzheimer’s Australia, there are currently 413,106 people in Australia living with dementia.

Due to the high number of debilitating symptoms, such as memory loss, a difficulty in performing simple tasks, and an inability to communicate effectively at times, most people with the condition are unable to support themselves independently.

This leaves families with two options. They can opt to put their loved one in a residential care home, or take on the role of carer and look after them themselves.

For those that choose to become carers for their loved one, it can be a difficult experience for both individuals involved.

While respite care services are available to support carers during difficult times, there is an increasing concern that there need to be additional services to specifically help those with dementia.

Additional resources

The increased concern has prompted some experts in the field to try and expand the types of respite care resources available for those with dementia.

Earlier this year, Alzheimer’s Australia worked with the University of Wollongong and Carers Australia to create a resource booklet for families to better understand how respite care can help people with dementia, as well as the specific types of services available, such as day respite and overnight respite.

The booklet, ‘Flexible Respite Services for People with Dementia and their Carers’ also helps people understand how to access these various types of services.

A Growing and Diverse Clientele

Resources like the booklet co-created by Alzheimer’s Australia say that while respite care services can help those with dementia, there is not enough focus on the individual and specialised needs that people with conditions like dementia may have.

Alzheimer’s Australia National Chief Executive Officer Maree McCabe said that a new approach is “essential to ensure that best practice in respite care is being delivered in the care and support of people with dementia and carers.”

“As both the aged care and disability sectors move to consumer-directed and individualised funding models, it is vital that respite services ensure they are flexible and responsive to the needs of people living with dementia, their families and carers,” she continued.

Caring for the Carers

But it’s also about the carers too. Being a carer can be a very demanding job, both physically and mentally, and not taking advantage of respite care when needed can cause a number of problems later down the line.

“For carers it is essential they take time to look after themselves and know how to access quality and flexible respite services to do so,” explained Ms McCabe.

Respite care also allows carers a break from time to time to catch up and socialise with friends, which can be very important due to many carers often feeling very isolated upon taking up the role.

Mrs Gard from Canberra knows all about the benefits of respite care – for both herself and her husband, Bryan, who suffers from dementia.

“Respite care gives me a chance to do something on my own that I enjoy, attend errands or just to give me a break from my carer role,” she said.







Palliative Care Problems Hit The US

Rewind to the early 2000’s, and the US was a country severely lacking in its availability of palliative care. It was difficult to access, expensive, and lacked the backing of prominent figures and politicians to help increase awareness.

Now in 2017, things have slowly and steadily improved. Several states now ensure that patients with serious illnesses have access to information about palliative care and how to receive it.

Some states, such as California, have gone even further by signing a law stating that all Medicaid care plans in the state will offer palliative care as standard.

Lack of a Standard

Yet due to the unique style of government the US has, each of the country’s 50 states has different attitudes and ideas about palliative care, resulting in a lucky dip scenario for seriously ill individuals which is wholly dependent on where they live.

Naturally, this is where the federal government could come in and help, but aside from a few demonstrations to raise awareness, little has been done up top to help people in need of these services across the country.

A Continuous Problem

While access to services is difficult enough, further roadblocks exist that only further prevent those in need for getting the care they require.

Perhaps the most prominent of these problems is insurance. Many patients lack adequate insurance that will cover the costs of their palliative care, and while Medicare, the country’s federal health insurance program for people over 65, is a potential solution, its success in securing palliative care for these people is debatable.

This is because while Medicare provides palliative care services to those in hospital or hospice care, the same is not true for those elsewhere, such as people in home care using home care services.

“If you are not terminally ill and ready to elect hospice, access to palliative care services is really limited,” said Sharon Pearce, vice president for public policy for the National Hospice and Palliative Care Organization.

Why is Palliative Care Not More Widely Available?

The slow progress of increasing access to palliative care in the country has made many pose one simple question – why is palliative care not more widely available?

The answer, however, is not so simple. Compared to other forms of care, palliative care is fairly new. With a new form of care comes a need for newly qualified staff – staff that many studies, such as one published in the Journal of Pain and Symptom Management in 2010, say are lacking in numbers.

What’s more, due to the fact that the care is associated with the terminally ill, many patients are not keen to seek it out due to what it entails, and in turn, many doctors and nurses are not eager to prescribe it.

The Need for Palliative Care

Yet despite its associations, like home care, senior care, and respite care, palliative care is but another essential part of the care industry, and not giving it the same prominence as other forms of care is hurting a large part of the US population.

The evidence that palliative care is beneficial to its patients is there – as Dr. Sean Morrison, a researcher in geriatrics and palliative medicine at Icahn School of Medicine at Mount Sinai in New York said:

“Considerable data now demonstrates that when patients receive palliative care in addition to traditional medical care, they have improved quality of life, greater satisfaction with their medical care, are less likely to be re-admitted to the hospital or have to visit an emergency department, and in certain diseases (i.e. cancer) have greater survival.”

Palliative care Is an essential part of the US care industry, and its time the country realises this.












3 Alternative Approaches to Dementia Care

When a loved one is struck with dementia, you want them to receive the best medication and care possible to help them combat the condition.

Fighting dementia, however, is no easy task. For many, it involves entering a form of dementia care, which often entails taking a number of medications multiple times a day, which can prove difficult for some.

Due to this difficulty, many researchers have over the years looked into other, less invasive ways of combating dementia. These methods aim to help alleviate the symptoms of the condition without the use of continuous medication.

Instead, they focus on helpful techniques that can be incorporated into everyday life.

Many alternative approaches to dementia have emerged over the years, but here at Dementia Caring, we have compiled a list of the top three.

1.) Music and Memory Therapy

There is already an extensive amount of research on the positive effects that music can have on our mind and body.

However, prior to 1985, little to no research had been done to see if music could have a positive effect in the same way, but with people suffering from dementia.

While some research into music and memory therapy emerged prior to the 21st century, it wasn’t until after this point that this field of research became more popular as a result of further studies that noted the advantageous effects.

As the name implies, this specific type of therapy involves using music, typically music that patients would have listened to in the past, as a way to trigger old memories that may be associated with specific songs.

Of the numerous studies done over the years, many conclude that this form of therapy can help quell the symptoms of dementia, such as anxiety and depression, as well as encourage communication and a greater sense of well-being.

2.) Laughter as a Natural Medicine

They say laughter is the best medicine, but some researchers have put this claim to the test and found there may be some truth in those words after all.

Researchers from La Trobe University studied a number of sessions with dementia patients, where activities such as acting, chanting and clapping were all accompanied with laughter that was encouraged throughout.

This technique, referred to as laughter yoga’, was found to improve the mood of the patients, as well as lower their blood pressure and increase their levels of happiness.

While the program has seen some implementation across dementia day centers and dementia day care services, it has yet to be fully incorporated into the care industry as a whole.

Regardless, the evidence does suggest that a little laughter every day can help those afflicted with dementia.

3.) Visual Diaries

Most of us like to keep family albums to help remind us of happy times from the past, so why can’t a specialised album for dementia patients help do the same?

Referred to as ‘visual diaries’, these diaries are used as a prompt to remind people of events from their past.

This is done with photos included in the diary, as well as with objects such as letters, postcards and any other important memorabilia.

Research into the effects of these diaries often reports an increased level of self-esteem in individuals, as well as a greater ability to retain and recall memory.

Want to find out more?

If you want to find out more about any of these approaches to treating dementia, get in contact with our team at Dementia Caring today. Our staff would be happy to talk to you more about what these treatments entail and how to access them.








Is Laughter Really the Best Medicine?

They say laughter is the best medicine, but new research suggests this may actually be truer than previously thought.

Evidence has shown that many elderly people living in aged care homes have a higher chance of developing depression and anxiety, so researchers from La Trobe University in Melbourne set out to find if laughter can help lower the chances of the two developing in aged care residents.

The benefits of laughter yoga

28 people living in aged-care homes took part in the experiment, which consisted of the residents taking part in what is referred to in the study as “laughter yoga”.

This special type of group therapy involves a combination of deep breathing, clapping and laughing. The breathing exercises are used to warm up the lungs for laughter, while the clapping is accompanied with various techniques such as stretching, chanting and acting, which then leads into the laughter phase.

It originated in the mid-1990’s and became popular among older people by Indian physician Madan Kataria, who writes about the therapy’s benefits in his book Laugh for No Reason.

It is believed that twenty minutes of laughter is required to reap all the physiological benefits.

Promising results

The therapy proved to show some promising results. Resident’s moods, levels of happiness, pulse and blood pressure were measured at the beginning and end of each session.

Researchers found that the majority of participants showed a more positive mood, greater levels of happiness, as well as a lower blood pressure.

Laughter Yoga instructor and co-author Ros Ben-Moshe, says the effects on residents as a result of the therapy were overwhelmingly positive.

“Laughter is contagious and even in residents with dementia we noticed an increase in social engagement and laughter,” she said.

Health benefits of laughter

Lead author of the study, Julie Ennis, stated that the positive results are due to the noted health benefits of laughter.

“A growing body of evidence indicates the health benefits of laughter,” she said.

Dr Ennis also stated that laughter can reduce levels of stress and blood pressure, as well as increase the release of endorphins, which are commonly referred to as the body’s natural painkillers.

“Based on our findings, there is good reason to run regular sessions in aged care facilities,” she said.

This could result in laughter yoga sessions being conducted in other areas of the care industry, such as for people in respite care, where the therapy could be administered to those needing day respite or overnight respite.

Complementary medicine

But while the effects of laughter seem to greatly help those in aged care, Dr Ellis says laughter is not the one cure all medicine, but rather a complimentary one alongside the more traditional medicines used in the industry.

She says while medication should still mainly be used to treat depression, anxiety and high blood pressure, laughter is still a great thing to use alongside typical medication to boost one’s physical, emotional and social health.

Laughter may not be replacing our typical medical techniques anytime soon, but it seems a little laughter can still help us all.







New Report Says Dementia Needs More Support



A new discussion paper that looks at dementia related issues in Australia has called on the government for additional funding to help those living with the condition.

It says that additional quality respite care and counselling services will be needed to successfully support the estimated 400,000 people in the country living with dementia.

Additional respite

The paper, conducted by Alzheimer’s Australia, states that these additional respite services will allow those to remain at home for longer, thus avoiding an early and often unwanted entry into residential care.

These services will also allow carers a greater ability to care for their loved ones themselves, while also allowing the option of day respite and overnight respite during any difficult times that a carer may be unavailable.

Key recommendations

Alongside this prompted change, the discussion paper makes a number of other key recommendations for how best to support Australia’s dementia population.

Among these proposals include funding for a pilot program of telephone based support groups who are specially trained to help those with dementia.

It is believed these support groups would be especially helpful for those with dementia living in rural areas, where accessing help in person at short notice may prove difficult at times.

Impact on relationships

The paper also recommends further research on the impact of dementia on relationships. It is believed a greater knowledge of this will help improve the overall implementation of specific and specialised support services.

The final key point of the paper calls for residential care homes to do more to help people with dementia maintain relationships with their carers.

It notes that relationships often weaken as someone moves into residential care, so allowing carers to work alongside staff to organise time alone with their loved one is a much-needed change.

Advocates for support

At the head of these proposed changes is Alzheimer’s Australia NSW’s CEO, John Watkins. He says more needs to be done to help those with dementia because family relationships are already difficult, and living with dementia only makes managing relationships harder.

“Dementia impacts on the roles people hold within the family,” Mr Watkins said.

“If a person with dementia was the provider and decision-maker, or if responsibilities were shared, that role is then taken on solely by their spouse or children.

“Not only does the person living with dementia lose their independence, but the roles of their partner or children will also change.”

Reversed roles

Mr Watkins also stated that family relationships can often cause roles to shift when a member of the family has dementia.

He notes that many children end up becoming carers for their parents if they develop dementia, and while this can have benefits, it can also cause undue stress and cause feelings of grief due to the natural close connection between the two.

“Dementia has a significant impact on an individual’s identity within the relationship, which inevitably affects a person’s feeling of worth and sense of self,” Mr Watkins said.





Living with Both Down Syndrome and Dementia

Down Syndrome is a genetic condition that affects people’s learning abilities and causes some unique physical characteristics.

Back in the 1980’s, the average life expectancy for someone with the condition was only 25 years old. However, with the advancements in science and medicine, many people with Down syndrome now comfortably live until the age of the 60.

Living longer

This advancement in age, however, is somewhat of a bittersweet victory. People with Down syndrome are typically more prone to brain changes as they get older, resulting in an increase in those with Down syndrome developing dementia at an earlier age compared to people without the condition.

With the life expectancy back in the 20th century being so low for those with Down syndrome, many people did not tend to live long enough for signs of dementia to emerge.

But now, in the 21st century, the rise in people with Down syndrome being diagnosed with dementia is becoming and increasing problem; a problem not often addressed when it comes to providing dementia care.

An increasing number

According to Young Dementia UK, one in 50 people with Down syndrome will develop Alzheimer’s disease between the ages of 30 to 39.

This number increases to one in 10 for people between the ages of 40 and 49, and then up to one in three people for people in their 50’s.

In addition, according to Alzheimer’s Society, one in 10 people with a learning disability will develop dementia, compared to one in 14 of the wider population.

Diagnosis difficulties

Yet despite the ever-increasing number of people with Down syndrome developing dementia, many are left undiagnosed.

Phil Freeman of the Dementia Action Alliance states that the low rate of diagnosis is due to a combination of signs of dementia displaying differently in those with Down syndrome, plus the fact that many signs may just be treated as another condition of Down syndrome, rather than dementia:

“Symptoms may be mistaken for a pre-existing disability and therefore they are less likely to receive a timely diagnosis. Ultimately this means more avoidable deaths when poor judgements are made about quality of life and treatments,” he said.

“Skilled organisations need to be able to spot early warning signs in already challenging circumstances.”

Providing dementia care

Even if dementia is correctly diagnosed, organising dementia care for someone with Down syndrome and dementia can be a difficult task.

Firstly, someone with Down syndrome may not fully understand what being diagnosed with dementia may mean for them.

There is also the issue that many care facilities, such as dementia day centres providing dementia day care, may not being able to provide the specialised support needed for someone with both Down syndrome and dementia.

Additionally, there is evidence that some forms of therapy, particularly non-drug treatments, do not have the same effect on those with Down syndrome, making treating dementia even more of a difficult task.

Mr Freeman says these combined issues leave a substantial number of the population with insufficient care, and that more needs to be done to rectify the problem:

“They fall through the gaps and don’t get the support they need – we must rectify this,” he said.


American Study Warns Demand for Respite Care to Increase in Next 10 Years

An American Study has warned that the demand for care services, such as respite care, is set to dramatically increase in the next decade.

Ageing baby boomers

The study, conducted by researchers from the Centre for Retirement Research, Gal Wettstein and Alice Zulkarnain, claims that demand is due to increase due to the rise of baby boomers that will be aged 80 and over in the next 10 years.

“As baby boomers enter their 80s, a large increase in the demand for long-term care is likely, with a commensurate rise in the reliance on care from their children,” the report states.

“Since boomers had fewer children per household than the previous generation, this development will place an unprecedented burden on their children, with implications for their physical, mental, and financial well-being.”

Baby boomers is a term used to refer to a person born in the years following the Second World War, typically within a period between 1946 and 1964.

After the war, that was a dramatic temporary increase in the birth rate, creating the largest living generation until the millennial generation, which is someone born between the years 1980 and 2000.

Informal Care

The study also looked into various aged care trends, with a particular focus on informal care provided by family members.

Key findings included that many informal care providers are adult children and that 17% will take on the role of caregiver at some point in their lives.

Adult children who become carers for a parent were estimated to work an average of 77 hours a month, which the study says can cause significant financial and health problems for the carer in question.

In terms of demographics, daughters of elderly parents are more likely to take on a caring role than sons in a similar situation, with unmarried daughters being the most prominent group.

In addition, those living closer to their parents were more likely to be caregivers than those that lived further away.

The report also states the marital status of a person’s parents can also play a role in the likelihood of adult children becoming carers.

“Finally, marital history seems to be important, with children providing care to married parents and to divorced and widowed mothers at similar rates, while caring significantly less for divorced fathers,” the study explains.

A focus on respite care

With these statistics and the worry of an ageing baby boomer generation, the study states there will be an increased demand for care services in the next ten years.

For those elderly parents wishing to remain at home and avoid moving into long-term care, the study suggests there should be an increase in the support and resources available to families to aid them in achieving this.

American home health industry groups, such as The National Association for Home Care & Hospice (NAHC), have also voiced similar concerns.

In June last year, the group campaigned for a larger respite care program, which would enable adult children carers a break from time to time by offering day respite or overnight respite to the elderly.

New Online Platform Set to Challenge Traditional Care Model

A new UK based company is currently challenging the traditional care model by offering a platform that allows people to search and hire carers in their local area.

The platform, known as SuperCarers, is the brainchild of brothers Adam and Daniel Pike, who decided to invent an easier way to access and pay for care after they experienced the difficulty of caring for their mother who suffered from dementia.

It is designed to be an alternative to private home care and that provided by local authority services, of which many believe are not up to standards in the UK at the moment.

Research published at the end of the last year found that an estimated 1.2 million people aged over 65 without access to care, which is nearly one in eight of all older people.

How does the platform work?

SuperCarers aims to cut out the ‘middleman’ in the care process and allow families to contact carers in their area directly to organise what is required, such as palliative care and various home care services.

However, the service is aimed at families who have yet to access care, not those already in home care or are residents of care homes.

“What we’re doing is reducing the high overhead costs of agency businesses by using technology,” said Adam Pike.

“By connecting the families and the carers directly, the carers get paid the living wage and the families are saving money.”

The carers available through the SuperCarers website all almost all self-employed, due to individuals needing to apply through the website to register as a carer.

The fact that anyone can, therefore, apply to be a carer has worried some people, but SuperCarers assures that all carers must go through a vigorous application process.

The company’s website says that the process includes meeting the individual in person for numerous interviews, as well as vigorous identity and criminal record checks.

Cheaper for all

The company also says since SuperCarers does not take a cut from each successful transaction, families end up paying less and carers end up earning more.

While carers are free to set their own rate, the average is £16 ($27) for one hour of care, once tax has been applied.

“We are clear with them,” Pike said. “We ask them to tick [a box to acknowledge] that they understand their employment status.”

Support and criticisms

SuperCarers has received much support, as well as criticisms since being introduced.

As of June 2017, the company has over 650 carers available through its platform and has gained the support of numerous investors.

Some notable names include Jamjar Investments, a fund run by Innocent drinks company founder Richard Reed, Chairman of Chelsea and Westminster Hospital Sir Tom Hughes-Hallett, as well as the founder of Evergreen Life Stephen Critchlow.

But prominent individuals such as Colin Angel, policy and campaigns director for the UK Homecare Association, are not sold on the new approach to care, particularly regarding the use of its introduction-only model:

“They are offering one alternative among many but they are not offering the managed care service that most people in this country are using and expect. It’s certainly not the model that most local authorities are purchasing,” he said.

But while the UK’s care industry continues to suffer, backer of SuperCarers and Paediatric junior doctor, Chris Kelly says that it is “… one way to help this problem that’s only going to get worse.”