Jikka: a beautiful & unique aged care facility in Japan

This is such a heartwarming facility, perhaps not the most dementia-friendly, but it is beautiful, enchanting and absolutely lovely. Nursing homes done differently. Food for thought, this nursing home in Japan was designed by 2 women and is known as Jikka. Created by architect Issei Suma, this facility in the mountains of Shizuoka Prefecture and brings together the community into the care facility.

Wheelchair accessible spa.

What does a person with dementia look like in Asia?

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I spoke to a few people about dementia recently and some were shocked at the fact that people with dementia are able to live in the community. I was quite surprised at the fact that they were surprised, I guess to me it’s been such a norm that I forget that people have different ideas and perceptions about people with dementia. One person even said to me that she thought people with dementia were people who have forgotten how to do anything, and that they get lost all the time, and maybe scream a lot or are angry. Or people who sat around in nursing homes and were the shell of themselves and stared into space all day. It was an incredibly painful feeling to sit and know that people with dementia are thought of that way.

However, with the media continuously labelling people with dementia as “sufferers” and movies portraying people with dementia as people with high care needs, staring into space or being highly disabled, it’s no wonder people have such negative stereotypes. In a cab ride last week, a cab driver pointed out that there’s not much point designing services for people with dementia since there will be a cure or a vaccine out in 5 to 10 years; he had seen the headline in the papers. I listed out the evidence on vaccine development and talked about the damaging impacts of the media and highly misleading headlines that are taking away the focus of providing care to people who are now living with dementia in the public eye. Again, who could blame him, he’s seen it in the papers. I left the cab feeling frustrated.

Media gurus with little understanding of dementia undermine the objective and essence of research, turning publications into another holy grail headline but it is their job to create publicity for the institution or organisation, and most of the time the rehashed facts are close but no cigar. Do these media personnel understand the devastating effect this has on people with dementia and their families, to be constantly thrown a lifeline every day that says a cure has been established only to find out it’s another sensational headline in the making.

Coming back to the person with dementia? Can the media change the way dementia is portrayed? An associate shared a good example of enablement. He talked about how he has a visual impairment and in the past without the aid of glasses, he would be severely disabled, however ,with glasses, he is enabled and can function just like everyone else. People with glasses are accepted just like everyone else. So how can we change the way the public think, accept and include people with cognitive impairment, in the same way as visual impairment? You don’t see a headline every day screaming that my vision can be cured or there’s a vaccine developed for my short-sightedness, could this be attributed to the knowledge base of media personnel having an understanding of visual impairment.

I’ve attached a 6 min trailer of the Last Laugh; here Kate Swaffer shares her experience of living with dementia and her experience after receiving a diagnosis of dementia. She’s an amazing woman, championing the rights of people with dementia, working on her Ph.D., is the inaugural Chair of the Alzheimer’s Australia Dementia Advisory Committee, author of “what the hell happened to my brain” and a founding member of the dementia alliance international.

Below is a video featuring the amazing Christine Bryden who has been living with dementia for 20 years and has been advocating for better quality of care and life for people with dementia. She was diagnosed with dementia in 1995 and when she was diagnosed with Alzheimer’s Disease at 46, doctors had prescribed that she stop working and prepare herself for the inevitable. 20 years now, Christine is an author of 2 books, lectures international, is a well-known dementia advocate in Japan, completed her post-graduate studies and is into her 15th year of marriage.

These active champions who have never given up, are true heroes in the face of dementia, and their hard work to make a change while living with dementia is truly admirable. However, looking back at my home encounters in the  last couple of weeks, it was a stark reminder that we still have a lot of work to do in the space of creating awareness about dementia in Asia, because what we think a person with dementia should look like, is not reflective of reality at all.

People with Dementia cope worse in Hospitals, so why are our nursing homes in Asia designed to look like hospitals?

Hospital2.pngBelow is a great a great piece by Prof June Andrews republished free, online or in print, under Creative Commons licence.


Why hospitals are dangerous for people with dementia – and why it’s up to families to help

June Andrews, University of Stirling

People with dementia go into emergency hospitals more often than the rest of the population even though these hospitals are run as if every patient has perfect intellectual function. An acute hospital is like a meat grinder for people with dementia – it chews them up and spits them out – so it is worth both avoiding admission in the first place, and learning how to support someone if admission is really necessary.

Your local hospital might be prepared to welcome people with dementia but you can’t be sure. Its management would be wise to do so, as up to 50% of patients, on top of their illness or injury, may be elderly and frail and affected by either dementia or delirium. Delirium is a reversible state of confusion caused by stress and infection. If staff work to reduce delirium, it almost certainly also helps reduce problems associated with dementia.

Slippery slope

How we regard hospitals has developed over time. What was a costly amenity for our great-grandparents is now understood as a regular service. A building that was once viewed with dread because so many people died there is now seen as a desirable place to get treated. People battle against local hospital closures. They attend accident and emergency (A&E) in preference to going to see the GP, as if the hospital was superior.

But if old people with dementia can stay out of hospital, it’s much better. Of course, some things can’t be managed outside a hospital but for many, getting admitted is the top of a slippery slope. They may have been managing perfectly well at home, but during their hospital stay things happen that mean they never go home again.

Dementia patients are twice as likely to suffer preventable complications such as pressure ulcers and pneumonia in hospital. Patients with dementia and a fractured hip tend not to be given as much pain relief as other patients with fractured hip. Uncontrolled pain in dementia gives rise to delirium that is often undiagnosed and untreated in hospitals. As a result, half of these patients who develop delirium die in six months.

Patients with dementia may get missed by accident at mealtimes and have problems eating and drinking which are made worse in hospital. Some hospitals provide guidance but bad stories are more common.

Coping worse in hospital

Research shows that if you have dementia you will stay in hospital longer than other people with the same clinical problem. People frequently say that after admission it was discovered that they had not been coping at home. But in fact, it may be the opposite. A person who does not get enough to eat in hospital may have been eating adequately at home. The person coping on their own with washing and going to the toilet in a familiar home environment may not be able to negotiate the confusion of the ward and start to wet themselves and be unable to keep themselves clean.

Someone who managed to be happy and live quietly at home, sleeping at night and entertaining themselves by day, will be kept awake by noise and light at night, and bored rigid in the daytime, never even seeing daylight. Getting the lighting right can prevent major dementia symptoms such as mood swings, sleep problems, and behavioural issues.

Then when they become noisy and irritable they may be given dangerous anti-psychotic medication in the first instance to quieten them down. It is not unusual after this to have a fall or a fracture, causing a longer period in hospital during which patients can then develop depression and delirium, leading to early death.

This is a terrible human story. And it’s terrible financially too. Staying longer in hospital than others with the same condition makes for a greater tax burden and causes waiting lists. Social services are under pressure now to find care home places for people, when what they had before was a semi-independent person who mainly looked after themselves with a bit of home care. The family, if there is one, and the estate of the person now face the probability of having their assets stripped to pay for a situation that may have been avoidable or at least delayed for months and years.

Families can do more

Logically families should take more responsibility for care of elderly relatives while in a hospital. Be there to help them eat, and to help them with washing, keeping them company and making sure that they swallow their medication.

But hospital staff resist it. For political reasons the NHS has difficulty accepting a situation like this for fear of accusations that the system is failing. Just recommending help from families has in the past been misrepresented in the media or by politicians as an attack on the NHS.

This is because we have been led to believe an unreal fantasy of what hospitals can do. Recommending that families help is not a criticism but a practical response. If families support the frail person in hospital, it helps the nurses, reduces delayed discharges, saves money and maintains the dignity of the patient. Everyone wins. We must all do it out of enlightened self-interest to allow the system to focus on patients who have no-one and nothing.

The alternative is that we assume hospitals can do everything we expect for an ageing and increasingly frail patient group. That in itself is enough to lead to system failure, because we ask too much of them.

The Conversation

June Andrews, Professor of Dementia Studies, University of Stirling

This article was originally published on The Conversation. Read the original article.

June Andrews: A Revolution for Dementia Treatment

Prof June Andrews argues for a revolution in the approach to dealing with dementia.

I always learn something new when I listen to Prof June Andrews. The first time I saw Prof Andrews was at a dementia care conference in 2012. I sat in for one of the sessions as part of the conference and was blown away by the simple, logical and straight up manner in which she talked about dementia.

Like seriously, how many talks have you gone for or conferences that clinicians have thrown at you bombastic latin sounding terminology that sounds kind of confusing or cool but seriously you walk out of the talk feeling like you think you might have learnt something that you paid money for but … not really? Or drone on for ages about their research methods when really they know we are all here for the outcome and really their findings. We trust that you know your methodology, now tell us what the evidence is.

If you could spare a couple of minutes listen to Prof Andrews get straight to the issue at hand as she talks about revolutionising treatment for dementia.

Source: BBC Radio 4 – Four Thought, Series 3, June Andrews: A Revolution for Dementia Treatment


Travelling with your loved one with dementia


My greatest fear!

When people who do not practice respect and dignity are in charge of care.

This trip back to Singapore, I spent much of my time running focus group discussions for my research project and meeting people involved in the care of people with dementia. So far in my care experience, all the people I have known in healthcare have hearts bigger than the universe, and dedicate a lot of time and effort into making a difference to people living with dementia. I have been inspired, awed and swept off my feet by people who continue to work against the tide to bring better care to their clients come hell or high water.

I never thought I would meet such a person, perhaps I am idealistic and always hope to see the best in people but I actually met a person who not only had little respect and disregard for her fellow staff, she was unemphatic and condescending to external staff. They may not bear the same rank as her but everyone deserves the same level of dignity and respect.

It scares me that a person that have such little respect and dignity, with so little understanding of person centred care is running a ship of programmes and services for people with dementia.

How can the person be truly aligned with the needs of the person with dementia, caregivers, staff and the philosophy of care? I hope organisations will look beyond the qualifications and also consider the attitude, understanding of dementia and the person’s ability to promote person-centred care in their organisation when they look to find leaders spearheading dementia care programmes.

Benefits of a Rehabilitative Environment

An inclusive rehabilitative environment that promotes dignity, respect and positivity, and it clearly reduces negative behaviours and promote a restorative change, empowering the people undergoing rehabilitation.

An environment that strips people of dignity, respect and positivity, increases or maintains the level of negative behaviours exhibited by an individual.

Like the guard said, “do you want people who are angry?”. Like Prison, nursing homes should not be pathogenic environments that confine, constrict and constrain. It should be salutogenic therapeutic environments for people to age in place with dignity and respect, such environments will reduce the amount of negative behaviours and create a systemically inclusive community for everyone.