Covid-19 impacting efforts to find a cure for dementia

Photo by jesse orrico on Unsplash

Covid-19 is also doing long-term damage to efforts to find a cure for dementia.

Every day, Diane Evans (not her real name), calls her 85-year-old mother, who lives on her own in Wales from her home in London. Every day she asks her mother if she is remembering to wash her hands regularly and to keep a social distance from other people. Every day, her mother is perplexed by the question.

Every day the facts of life during the coronavirus epidemic are explained to her yet again, with an heroic absence of exasperation.

Every day Ms Evans worries that her mother will put herself at unnecessary risk of contracting the Covid-19 virus.

She also worries that the condition her mother already lives with is getting worse, as she loses the social contacts and routine that shaped her life. Her mother has dementia, a degenerative and incurable condition that affects perhaps 850,000 Britons and 50m people worldwide. It has various causes and a wide range of severity. It may start as a “mild cognitive impairment” forgetfulness; the occasional “senior moment”. But as it progresses, it attacks mental agility and gnaws away at memory. Eventually, it renders people incapable of looking after themselves, even if physically they are up to it. They will lose the ability to read, to cook and to shop. They may forget to drink and become dehydrated, or become incontinent. At times they may suffer delusions, or become frightened or angry; at others simply subside into an apathetic slump. They will require care for most of their waking hours, and often supervision when they sleep.

People with every stage of dementia are at particular danger from the virus not just because of the difficulty they may have in understanding the threat or in remembering safety precautions. They are also likely to be subject to other risk factors. The most obvious is that dementia is predominantly a syndrome of the elderly, the group for whom covid-19 is most likely to be fatal. A small minority of people with early-onset dementia develop symptoms in their younger years. But no one doubts that it becomes more common with age. By some estimates, 2% of 65- to 69-year-olds have dementia, and its prevalence doubles every five years to the age of 90. In another widely quoted estimate, between a third and a half of 85-year-olds have dementia.

The condition has a variety of causes. The most common is Alzheimer’s disease, accounting for between 60% and 80% of cases, but there are dozens of other types. And, though all kinds of people in all states of health can develop dementia, it does appear to be correlated with other conditions that make people vulnerable to infection. Those who are overweight, depressed, smoke, have high blood pressure or diabetes and do not exercise have a higher risk of dementia, as well as of physical ailments.

Looking after people with dementia is a hands-on, labour-intensive task. For those at home, that can become almost impossible if social-distancing guidelines are adhered to. And much of the usual support system, regular visitors and day-care centres, for example—will be unavailable.

Technology can help a bit. Singapore, for example, has experimented in some public-housing blocks with a system that sends neighbours or family members of the vulnerable an alert if, say, a tap in a washbasin has not been used for a while. Researchers at the Care Research & Technology Centre at Imperial College in London are working on taking this much further. Infra-red and radar sensors installed in the homes of people with dementia, or devices worn by them as watches or hearing-aid-type brain-scanners can provide data giving early warning signs of trouble.

There are also, of course, apps for dementia. “Refresh Player” and “Refresh Studio”, from a tech firm called How Do I?, offer “personalised memory support”, including videos on how to perform day-to-day tasks, such as run a bath or boil a kettle, which appear when a smartphone taps a sticker on the once familiar but now sometimes baffling object involved. Japan is pioneering the use of robotics in caring for the elderly. Examples include toys such as Paro, a furry seal used as a “therapy animal”, and Pepper, a humanoid robot deployed in hundreds of care homes to play games, hold childish conversations and demonstrate exercise moves.

But for most people in most parts of the world, the best that can be offered people with dementia at home and their carers is a daily knock on the door, or a phone call, like Ms Evans’s, and Post-it notes of helpful remindersto wash your hands, for example. So long as they are physically healthy, now is not the time, in many parts of the world, to contemplate sending someone with dementia into a care home. Many are operating strict isolation policies, letting no one in. And many have seen outbreaks of covid-19 infection. A study by academics based at the London School of Economics estimated that in a number of European countries, about half of covid19-related deaths have been in care homes.

Many carers of people with dementia who have been unfortunate enough to become infected with the virus see hospitalisation as a very last resort for their charges. Even Alzheimer’s Disease International, an advocacy group, reports in a position paper this month that “people over 80 who have other illnesses and need admission to hospital with covid-19 are least likely to benefit from going into hospital since their admission has associated risks.” The experience can be bewildering, and lead to delirium, a hallucinatory state of confusion and panic. “It’s pretty frightening for most people,” says Gill Livingston, professor of psychiatry of older people, at University College, London, “but even more frightening for them.” There is also the fear that, when it comes to triage—the selection of patients for scarce medical resources, the elderly with dementia will find themselves at the end of the queue, based on questionable assumptions about the patient’s underlying frailty and quality of life.

Besides the short-term dangers the virus has brought to those coping with dementia, there are fears it could do longer-term damage to efforts to improve care for the condition. One reason for this is shared with many physical maladies: that, during the emergency, people are wary of seeking diagnosis or help, for fear of infection, or of laying claim to health-care resources others need more urgently. Professor Livingston says that the “memory clinic” where she works decided to shut, as the doctors concluded “it was more risky to see people than for them not to have a diagnosis for a short period of time.” But the longer the delay goes on, the greater dangers people living with undiagnosed dementia pose to themselves, and perhaps others, if, say, through forgetfulness they start a fire, or continue to drive when they can no longer do so safely.

Scientific research into dementia has also been disrupted by the pandemic. Miia Kivipelto, a Finnish neuroscientist who led a pioneering study showing how changes in people’s ways of life could slow or arrest cognitive decline, has had to stop all the follow-up research, as it is impossible to conduct in a world of self-isolation. Similarly, Biogen, an American pharmaceutical company, has had to delay its attempt to gain approval for aducanamab, a potential treatment for Alzheimer’s. Besides the difficulty in conducting clinical trials, the company has suffered a covid-19 outbreak. So many Alzheimer’s drugs have failed that optimism about this one was at best cautious, but for some of those affected by the disease, it was a light at the end of a very long tunnel.

Before Covid-19, campaigners for dementia research and dementia care had reason to believe that they were making progress. Their argument that dementia is not an inevitable feature of ageing but a disability that deserves to be treated as such was widely accepted. So too was their case that dementia represents a real global emergency.

As life expectancies lengthen, especially in the developing world, the numbers of people with the condition will shoot up, to around 80m by 2030 and 150m by 2050. As population growth slows, there will simply not be enough people to care for them. No country has a good plan for how to deal with this problem, or how to finance the care of such large numbers of people. Optimists point to the current pandemic to argue that it shows how much can be done when the scale of an emergency is recognised. Perhaps more realistically, it has given yet another reason for dementia to slip down the list of global priorities.

Source: The Economist

What of the future?

People first ‘Social Care 360’

What of the future? A point of view by Neil Crowther

“People want a life, not a ‘bed’ or a ‘service’. Until our conception of social care – or something to replace it – shifts here, no amount of integration with the NHS will improve anything. The National Care Service will just continue to fail to meet people’s aspirations instead.”

Neil Crowther, Independent expert on equality, human rights and social change with a particular interest in working to secure the rights of disabled people.

With thanks to Neil Crowther 

A virtual choir brings the community together

We’ll meet again. Let’s hope.

Seldom have the lyrics to Vera Lynn’s song felt quite so poignant.

Last week, care home operator Shaw Healthcare hosted a virtual choir to lift the spirits of their residents and staff.

The company, which operates 75 homes across the UK, organised the online sing-along to cheer people living and working in them, in the current COVID-19 pandemic.

Residents and staff joined together to sing, “We’ll Meet Again” together across England, Scotland and Wales, delivering a message of hope and positivity.

See the Shaw healthcare virtual choir sing ‘We’ll Meet Again’ >here

 ‘We’ll meet again’ – residents of Castle View Windsor sing out loud and strong.

Keeping their spirits high in the current situation and spreading a little joy and happiness, the residents of the new Castle View retirement village in Windsor have taken to their balconies to sing and exercise together, while maintaining a safe social distance from one another.

You can read the full Care Industry News article >here

Delivering goodies and happiness to isolated older people in lockdown

Unsung Heroes in Norfolk: Sally Whitworth 

Here is Sally Whitworth with her beloved labrador, Pongo. She is one of our fantastic ReEngage tea hosts for the area, as well as a regular monthly driver. Since lockdown, we have been unable to hold teas, but that hasn’t stopped her generosity… Here yet another delivery of delicious Bake Off!-worthy, homemade cakes (this week it was banana loaf and lemon drizzle) await in the basket.

All the oldest old in our small community have received two slices of mouth-watering cake every week, delivered with great affection and boundless cheerfulness by Sally. No mean feat, as there are nearly twenty people on her list. She has been doing this since lockdown on 24 March, maintaining the Government’s Covid19 rules scrupulously, with gloves and a garden stake which doubles up to hang the basket, while providing appropriate social distance.

Then at Easter, she delivered bags of Easter eggs to everyone, with a personal hand-written label on each, written by her 5 and 7 year-old great niece and nephew.

“I really enjoy doing it”, she says, “– and it stops me eating them all! Mind you, Pongo would have the lot, given half a chance.”

Care homes neglected

care homes neglected

Care homes neglected – A Daily Telegraph article (15.04.2020) by Annie Stevenson

Director of Integrated Care, Annie Stevenson, expresses eloquently in her article ‘Care homes neglected’ exactly what most of the care industry feels right now.

 

For the latest Care Home news stories and sector announcements from a wide-range of UK and international sources Click Here >

Four letters that make communication REAL

Four letters that make communication REAL

“A diagnosis of dementia for a person is also a diagnosis for the whole family.” 

Anon

Dementia can be very hard to come to terms with. Hard enough for the person diagnosed of course, but also hard for family carers, who must watch the relentless deterioration of the person they love, usually over many years, with no hope of reversal. They must also adjust their own behaviours accordingly. In many ways, dementia is a slow, ongoing bereavement process, of loss of a loved one before the person’s death and often means massive and often exhausting changes to the carers’ own lives.

Dementia can be scary and disorientating for the person with the diagnosis, often including

  • short-term (working) memory loss
  • gradual loss of awareness of basic things like eating, drinking and personal hygiene confusion as to their whereabouts or who people are — who they may have known for much of their lives
  • loss of life skills like reading, language and vocabulary
  • rapid mood changes, anxiety, depression
  • depleted motor skills and mobility,

And that’s just for starters.

All these aspects of dementia can be frightening, frustrating and mystifying for the person and saddening (and sometimes maddening) for relatives.

And just when things may seem to have settled into a steadier pattern, the person’s condition may decline further and the care goal posts will move yet again.

Despite this long and pessimistic list — and even though dementia cannot be cured or reversed, our own behaviour can make a big positive difference.

A person can live well with dementia for a long time and with changing attitudes in dementia care, the experience does not have to be unremittingly negative

Happily, in recent years, good communication is slowly being recognised as one of the most important and essential ways of helping the person with dementia and their family to deal with the condition.

I developed the REAL Communication Framework in 2003 as a response to my own observations, worries and concerns about my mother’s condition and her care. The four letters of REAL stand for Reminiscence, Empathic engagement, Active Listening and Life Story. These are the four letters create the four pillars of good communication with a person living with dementia.

Mum had vascular dementia and Alzheimer’s disease for about ten years. I had noticed how her friends gradually fell away, how people were nervous to engage her in conversation or worse, ignored her and spoke through me. I had noticed how impatient my father could be with her sometimes, the woman he adored and had lived with happily for over 60 years — and how all of us in the family felt ‘at sea’ with the experience.

Here is the REAL framework, which surrounds the person with connection and meaningful communication – and all from four letters.

Dad wasn’t coping and Mum found herself in a care home. I noticed that the other residents and their families had some similar issues to our own. I saw that Mum was increasingly challenged to express herself. Of course, the carers knew almost nothing about her and had no tools to help them get to know her better.

First off, I made her a life story album ‘This is My Life’ to help them (and me, as it turned out) to get to know her a better and to give her opportunities to be the expert, in remembering and talking about her life.

Unexpectedly, it became the most important item in her life. Nothing fancy, you understand, just a pictorial chronology of her life with some simple autobiographical captions; for example, “Me in the garden dancing”, “Our honeymoon in Bournemouth”, that sort of thing. We looked at and enjoyed the family photos continually over the seven years she lived in a care home.

I was on a voyage of discovery and she was sharing her experiences as a girl and as a younger woman, — memories I knew very little about, a person who seemed so familiar, yet I hardly knew.

In finding out about her youthful years, we bonded more deeply. This growing closeness helped me to understand better what she might want in the here-and-now. Like all of us, her outlook, needs and expectations had their foundations in her earlier life.

We would watch DVDs together which I knew would make her laugh. In the earlier days we might watch episodes of one of her favourite comedy TV programmes like Dad’s Army. Later, she couldn’t follow the plot lines and even Arthur Lowe’s pompous disdain no longer seemed so funny. Then we moved on to The Marx Brothers.

Nothing like a bit of slapstick for some instant shared hilarity. Her favourites were A Night at the Opera and Duck Soup…

On warm days, we might sit in the care home garden in the sunshine and talk about the birds and bees and flowers and trees and remember her tending the garden at home (mostly endless weeding) and chuckle about Dad in what was his favourite haunt, wearing nearly threadbare gardening clothes.

And while she still could, we talked. About growing up and then bringing up four children, about the hard labour of housework, about life during wartime and dad’s ‘courting’. I admired her endless capable creativity in the house and her delicious cooking. Through sharing her reminiscences and with some empathic, concentrated listening from me, over time, she seemed to be more settled in the confusing, wobbly world she found herself in — and the long list of negatives seemed just a tiny bit shorter.

When these four letters R-E-A-L are in place, anyone can have an easier and more meaningful relationship with a person with dementia and help make it an experience that can be borne more lightly by all.

You can learn more about the REAL Communication Framework and how it helps to transform the lives of people living with dementia and their caregivers here>

How to communicate well with someone living with dementia (Part Two)

Photo by Nick Fewings on Unsplash

 

Part Two: Words aren’t everything

The Language of Dementia

Unfortunately, speech and language deterioration is almost inevitable for a person living with dementia. The reasons are multifarious — among others, the person’s natural language and vocabulary are increasingly challenged by reduced mental capacity. Reduced brain-processing power means that they may struggle to understand what is being said to them. Loss of short-term memory makes it harder for them to orientate themselves in a narrative, or in conversation. They may be unable to respond at we would consider to be a ‘normal’ speed. They might return to using another language learnt in their childhood.

But words aren’t everything

We can communicate better with a person living with dementia by using overt and subtle, non-verbal language that conveys meaning beyond the words — especially if it mirrors theirs. Mirroring non-verbal cues helps to give clarity to our engagement, making it easier for us to understand one another.

Over the years, I’ve heard a number of stories of people living with dementia who have become newly attached, or antagonistic to another person because the person reminds them of a family member or friend they once liked or someone they disliked. It is often something in the tone of the person’s voice that has created this attraction or repulsion.

And it is not just what we say, but how we say it — our tone of voice.

Tone of voice matters, because it helps us to express the feelings behind the words we use, and may reflect among other things, our social culture, where we come from, our age, social status, education and command of language, our sense of ourselves, our attitudes, our state of health and our current mood. The timbre of our voice may help or hinder our connection with someone, even if we may be hardly, if ever, conscious of it.

Over the years, I’ve heard a number of stories of people living with dementia who have become newly attached, or antagonistic to another person because the person reminds them of a family member or friend they once liked or someone they disliked. It is often something in the tone of the person’s voice that has created this attraction or repulsion.

What are the ingredients that make up tone of voice?

These include natural vocal musicality, pitch, depth and intensity, the clarity and sound of our words, the accentuation we use, the speed at which we speak and more generally, the personality and outlook we convey by these means.

Even the simplest of questions, such as “How are you today, John?” may be imbued with a range of meanings depending on the tone of voice used, from genuine authenticity to patronisation, from positivity or cheeriness, to sadness or negativity. How many underlying meanings are you able to convey, just by changing your tone of voice and accentuation in the sample question?

Being more aware of how we sound can help improve our relationships with everyone

How to communicate well with someone living with dementia (Part One)

Photo by Harli Marten on Unsplash

 

Part One: Beyond the words

“Nonverbal communication forms a social language that is in many ways richer and more fundamental than our words.” 

 

Leonard Mlodinow

Body and paralanguage always speak louder than the words we use.

When we are alert to these, communication can be more effective, helping us to better understand the main — and also the underlying messages being conveyed.

When talking with a person living with dementia, they are particularly important to understand, for a few reasons. Firstly, the person’s reliance on non-verbal communication may accelerate as their natural language skills become increasingly compromised by the condition. Secondly, their sense of self alters subtly over time. Thirdly, the speed at which the person is able to process and absorb information is reduced. Finally, emotional feelings may rise to the surface (sometimes quite unexpectedly) in situations that challenge them in some way. All these facors contribute to how the person is able to hear, listen and respond.

Approximately 60% of our interactions use non-verbal communication.

These include proxemics (the space between us), kinesics (our body and head movements), hand gestures and posture. Facial expression and eye contact are key, of course. Perhaps crucially, a person’s tone of voice, intonation, pitch and speed of speaking, hesitation noises, gestures and facial expressions, make a significant difference to how we perceive both them and their message. We rely more heavily on this paralanguage to make sense of the world and our experiences than we might realise, or like to admit.

For any person, a diagnosis of dementia can feel like the beginning of the end.

Hardly surprising perhaps, given the prevailing, dismal medical model with which dementia is often viewed: as a journey of emptiness and inexorable physical and mental decline.

This depersonalised stereotyping over-simplifies the experience, presenting a one-dimensional view of personhood, overly dominated by cognition and short-term memory loss. Of course, as the disease progresses, the person’s thoughts and words inevitably become more tangled and confused.

However, a broader (and more humane) definition recognises that a person is far more than their thoughts alone and that together with their many long-term memories and experiences, the essence of the person remains, despite changes to the brain.

To keep well-connected to a person living with the condition, we need to become increasingly attentive to their non-verbal clues — as well as our own. We need to try to be more aware of what we are both communicating, beyond the words.

Making personal choices

This helpful infographic has been doing the rounds on social media recently. We’re not sure who to thank or credit for its origination, but we found it on the Canadian Mantech site.

Age UK Statistics

1,000 words from Age UK on the statistics that should alarm and shame the country

This report comes from Care Industry News on 9 February 2020. Sadly, it makes pretty depressing reading.

1,000 words from Age UK on the statistics that should alarm and shame the country New Age UK analysis finds that in the last 12 months, about 700,000 requests for formal care and support, equivalent to 51% of all applications, have been made by older people and yet have resulted in them not receiving formal care services.

This is equivalent to 2,000 claims from older people being unsuccessful each day, or 80 every hour. In some of these cases, the older person was found by their council not to meet the eligibility criteria set for the social care system, and that was the end of it (23% of all requests for help); while in others the older person was found ineligible, but their council then referred them onto other services in the hope that they could assist, including their local Age UK (46% of all requests for help).

The charity says that these figures show how very difficult it is now to qualify for care within our shrunken social care system: between 2010/11 and 2018/19 total spending on adult social care fell by £86 million in real terms, representing a 4% reduction in local authority spending. While spending has now mostly recovered from its lowest point in 2014/15, the older and disabled population has meanwhile significantly increased, meaning social care spending per head of the adult population has fallen by 6% per person over the same time period. Because councils are so stretched, it is very concerning but not at all surprising that so many older people who are asking for help are being turned away.

Age UK’s new analysis also helps to explain why the numbers of older people living with some unmet need for care are so high and continuing to rise: 1.5 million over 65s in England are going without all the help they need to carry out at least one essential ‘Activity of Daily Living’. If you ask for help from your council and are turned down for it and you don’t have family or friends to step in or enough money to fund your own service then you are likely to find yourself included in this growing army of older people who are soldiering on unsupported, despite having some need for care.

Age UK is drawing attention to these findings as it publishes a new report highlighting the battle that older people and their families often face in trying to secure social care. In ‘Behind the Headlines: Battling to get care’, the Charity describes the social care system as being “woefully inadequate for the job now required of it, despite the best efforts of the good people working in it.”

Over a fifth of all the calls to Age UK’s information and advice line concern social care, a figure approaching 35,000 last year. The report draws on the content of these calls and recounts the very difficult experiences older people and their families are going through as they try to secure the help with everyday tasks like washing, eating and toileting they badly need.

Caroline Abrahams, Age UK’s charity director, said: “The fact that 2,000 older people are being turned down for care every day demonstrates both the enormous numbers impacted by our ramshackle care system and how serious the problems it faces have now become. We don’t know what happens to these older people whose applications are rejected, but inevitably some have no choice but to struggle on alone. Good social care helps to keep older people fit and well, so if you are forced to go without it’s a recipe for emerging health problems to turn into crises, possibly leading to a hospital stay that might otherwise have been avoided and a decline in your health from which you may never fully recover.”

“Faced with too much demand and too little supply, our social care system is effectively under siege. Councils do their best with the resources they have but there are simply not enough to go around. One result is this vast number of older people whose applications for help are rejected and another the long waits for an assessment to have your case looked into at all. Our report is heart-rending stories of older people in need who are being comprehensively let down, and the nightmarish situations created for them and their families. Real suffering is going on, with older people’s lives being diminished and, in some cases, we fear, being cut short.”

“The Prime Minister has promised to fix social care, and our new report shows why it’s so vital for our older population that he keeps his word. For some, tragically, it is already too late.”

Mike Padgham, Chair of the Independent Care Group, said: “The Age UK statistics are alarming and shame us as a country. They should make the Government sit up, listen and act – beginning with ploughing more money into social care in next month’s Budget.

“Some £8bn has been cut from local authority social care budgets since 2010 so it should not come as a surprise that more and more older and vulnerable people – our mothers, fathers, aunts, uncles, brothers, sisters – cannot get the care they need to enjoy a basic, decent quality of life.

“In 2020 it is a national disgrace, degrading and dehumanising and action to solve the crisis in social care is long overdue.

“We have total sympathy with local authorities who have had their budgets cut savagely in the past decade to the point where they can’t deliver care to those who need it most.
“Now that key milestones in Brexit are out of the way it is time for the Government to turn its attention to the number one domestic priority – social care.

“Boris Johnson promised to sort out social care ‘once and for all’ when he became Prime Minister and again at the General Election, but all we have been promised is ‘cross-party talks’ and a solution within the five years of this parliament.

“Well, as these figures demonstrate, we cannot wait five years. There is no time for more talks and reports, we need to get social care done now, and the Government must start by pumping funding into care at the Budget. At least £8bn extra is needed, just to reach the levels we had in 2010, and we need to go much further than that so that everyone who needs care can get it.”