Living with loss and grief in a care home

Photo by Fabrice Villard on Unsplash

Part I – A time for a bit of extra support?

Anyone working in the care sector may all need a bit of extra support at this difficult time. We asked therapeutic counselling specialist for people with dementia and REAL Communication Works advisor, Danuta Lipinska, to share some of her experience and wisdom about such things.

In this article, you will find lots to reflect on and useful suggestions that can help you through this challenging time.

Caring for frail older people or even younger people with life limiting conditions or mental health concerns and physical disabilities or a dementia, you will not be a stranger to the ongoing nature of dying and death, loss, grief and mourning.

Care staff often say to me, “Well, it’s just part of the job. We do the best we can, and we usually don’t let it get to us too much.” 

But this is not just the job as usual. So why is it different this time? The nature of this pandemic brings us into the realm of Traumatic Loss.

This means that there is a deeply disturbing threat of actual or possible harm directly towards you, your loved ones, those you care for at work and the citizens of the world at large. Feeling frightened and anxious are natural human responses to trauma and the threat of trauma.

Fear of breaking down and losing control are also common.

Caring for residents with the illness, wondering when the next person will become unwell and supporting their death and dying, knowing that what we have done has not been enough in this case brings feelings of inadequacy, guilt, hopelessness and helplessness, great sadness and anger.

The losses associated with the Covid-19 pandemic arouse our basic instincts to threat and we respond in the instinctive way (our ‘gut response’) is Fight, Flight, Freeze or Follow (see here) . We feel the loss of how things used to be in our care home and may feel powerless to change it.

Many more of the women and men who are residents in the care home are becoming unwell. Some are going to hospital and not coming back, and some are dying in the home. You wonder if their death could have been prevented. You may not have had the chance to say goodbye to a person you have come to care deeply about over many years. Relatives, partners, children, grandchildren are not able to be with them as their illness progresses and their dying and death takes place.

You are responding to multiple losses – many losses at once. At work, at home, in your families, in the community, the country, the world. You have had to take on the management of the multiple changes within the care home that would not normally be occurring. Even if you have had an earlier quarantine event that required the home to shut down and relatives could not visit, you would have had an ending in sight when things could return to normal. At the moment we don’t know when the end might be.

Our basic needs for security and safety have been threatened. For some people, food and shelter, jobs and finances are affected. For many, their sense of wellbeing and being able to cope has been challenged and they are not themselves. We were unable to prepare for this and this can leave us feeling de-skilled and vulnerable.

Loss (or bereavement) is what happens as a result of the changes in our lives or the actual death of a person or pet.

Loss is the event that happens when we are rowing along the River of Life in our canoe and suddenly, we are thrown over the edge into a waterfall and the swirling whirlpool below. Along the way, over by the rocks there is a calm deep pool. We could end up in either or both of these places.

The losses associated with the Covid-19 pandemic arouse our basic instincts to threat. Our needs for self-protection and survival kick in and we respond in very basic human and instinctive ways (our ‘gut response’) Fight, Flight, Freeze or Follow (see here)

Grief is what we feel and this can be a ‘whirlpool’ of many emotions all churned up and colliding with and washing over one another, or a quiet still pool where feeling numb and non-reactive is just another way of being with the loss. It is a process of stages that can come and go, co-exist and last for as long as we need them to. There are many ways people have written about grief. Possibly the most recognisable is the Five Stages of Grief described by Dr Elisabeth Kubler-Ross in 1969. They are Denial, Ange, Depression, Bargaining and Acceptance.

It is important to remember that we all grieve in our own unique way, and these are just guidelines that might help to make sense of your experience. If it doesn’t, that’s fine. Something and somebody else will be there to help you, if you ask, when you are ready. That might be tomorrow, it might not be for a long time.

At this particular time, it seems to me that there are a few kinds of grief that we are experiencing within this pandemic.

Global grief
My grief
Your grief

What if… grief (or ‘Anticipatory grief ‘ – our real worry and concern about what might happen in the future – can feel as real as if it is happening NOW).

This diagram might be helpful in visualising how your experience of grief might be at the moment.
Notice that the river does keep flowing onwards, away from the chaos and pain.

A Whirlpool of Feelings

You might be feeling ANY or ALL of these… Being sad, angry, annoyed with others, numb, hopeless, feeling like arguing, in despair, swearing, ‘not myself’ shutting others out, sleeping more than usual, not sleeping, not eating, comfort eating, guilty (I am safe, others are not; can I be doing more? Why am I at home when I should be with my colleagues?), crying, frightened, alone, lost, ignored, suicidal, wanting to harm yourself, confusion, panic, anxiety, disbelief, astonished by kindness, hopeful. These and more feelings are natural in these difficult and uncertain times.

You might be by yourself at this moment, and you may be feeling alone, even in the midst of a busy care home. But you do not have to stay alone in your thoughts and feelings, you can be seen on an app, online if you choose, or on the other side of the fence at the back of your house.

Mourning is what we do to acknowledge the pain and the loss and offers a ritual, a tradition, a faith or spiritual based activity which focuses on the loss.

For some helpful tips and ideas on to cope have a look at Part II – Coping with loss and grief

With thanks to Danuta Lipinska 

About Danuta Lipinska

A passionate specialist in the understanding and care of any older person and those with dementia, successful author, counsellor, supervisor, Action Learning facilitator, trainer and International speaker.

Check out more articles and helpful guides covering ‘Wellbeing for Carers’ here >

Coping with loss and grief

Photo by Arno Smit on Unsplash

Part II – Some tips to help

What can we do about it?

When you stop to consider, take a deep breath. Perhaps you can share your feelings with a co-worker or manager and when you get home, with a trusted partner, friend or family member, your faith leader, counsellor, or call a Helpline. Their staff are there to listen to your concerns, not just to respond to suicidal feelings.

Talk and listen to one another

This is important even if we are not in the same room or close enough to touch or hug. You don’t have to do this by yourself, even though you may physically be alone.

Find a friend at the care home, or your manager. “I need a minute please” is a good place to start. Often your work colleague will know exactly what you might be thinking or feeling, as they share the same experiences as you. They might just be feeling or seeing things differently to you and that can be helpful for both of you.

If you are feeling overwhelmed, suicidal or self-harming, or your usual coping strategies are not working ­– you may be drinking or using more drugs than usual, call one of the Helplines listed below.

Take a break from the routine​

This will take just 5 minutes so why not go to the staff room, or step outside for a moment. Let a colleague or your manager know you need to take time out. Many managers have relaxed the usual routine of working to allow for more breaks in the long shifts.

Breathe

Taking some deep breaths really can help clear the stress, anxiety, the ‘fog’ in our minds, bringing more oxygen into our bodies and brains which is really helpful for shifting our thoughts and worries (see here) and this helps bring new energy to tired muscles and organs.

Have a drink of water – now

Just do it! Even as a temporary measure until you can make your favourite warm drink or soft drink. Staying hydrated helps our mood and brain function – the place from where all the thoughts, feelings and behaviour are controlled.

Have a snack

Pizza, cakes, chocolate, fruit, raw vegetables with dips and healthy chips, nuts, drinks and goodies can keep spirits up in the staff room.

Ending the shift

Write down three things you feel good about today. It can be very simple. “I gave Barry a great shave”; “Marion really enjoyed her strawberry ice cream”; “I helped Amy talk to her Dad on the iPad.”
Write down the names of anyone you are especially concerned about and add a kind word next to their name.
Add the thought, “I have done the best that I could do today. Well done.” Leave the piece of paper in an envelope in your locker. Close the door and leave it there. Now you are ready to leave your work place and move to the next. You do not have to open the envelope when you come back tomorrow.

Remembering together

Recalling happy memories, though it may be painful, can also be comforting. Many care homes are gathering residents and staff together once a week and sit together, light a candle, look at photographs of the person in the home during activities or events and talk about the person who has died, playing their favourite piece of music, having their favourite dessert, baking a cake together for tea time, watching his/her favourite film with ice-cream cones. Everyone is encouraged to share a word, a brief thought or memory, aloud.

A Memory Tree

Photos of the person who has died and thoughts from anyone in the home about them can be written on the ‘leaves’ and hung from the branches of the tree. This can be a small tree with fairy lights inside the branches or painted onto a wall or a cut-out of a tree tacked onto the notice board.

You can be as creative as you like with these processes of community remembrance as it aids our grief and mourning process and acknowledges our shared experience of loss. Care home staff have said how helpful this can be, and the residents feel part of what is happening too. Which is also essential to their wellbeing.

Be gentle with yourself

Remind yourself that you are doing the very best you can in the situation. We think that you are doing a tremendous job and one that is often unseen and unheard. You are caring for the most frail, unwell and vulnerable people in our families and communities. You are providing caring and skilled accompaniment for women and men at the end of their lives.

You are ‘standing in’ for loved ones, families, friends and faith leaders who are unable to be there. What an important role this is and gives comfort to so many family members who cannot be there with their loved one. THANK YOU.

Samaritans HELP LINE 116 123 or Cruse Bereavement Support, 0808 808 1677
Whirlpool of Grief Dr Richard Wilson, 1992
Dr Elisabeth Kubler-Ross, The Stages of Grief 1969

With thanks to Danuta Lipinska 

About Danuta Lipinska

A passionate specialist in the understanding and care of any older person and those with dementia, successful author, counsellor, supervisor, Action Learning facilitator, trainer and International speaker.

Living with loss and grief Part I – A time for a bit of extra support?  

Face Masks and Dementia Care

What is the person saying?

By Sarah Reed 

The art and science of communication

How we communicate is more important than what we communicate. The importance of emotional perception, expression and reciprocity in non-verbal communication is bound to impact the outcome of any doctor/patient or carer/cared-for interactions. 

Studies have demonstrated the impact of doctors’ and carers’ empathy and person-centred care on the enablement and health outcomes for the person in receipt of care with both chronic and acute conditions. In a large randomised controlled trial in 2014, it was found that the “wearing of face masks by doctors had little effect on patient enablement and satisfaction but had a significant and negative effect on patients’ perceptions of the doctors’ empathy”.

We must hope that eventually, mask makers will recognise that clear panel masks are really the only ones worth using and start manufacturing them. However, in the meantime, the following tips are good for all our interactions with anyone at any time whether they have dementia or not, but are especially important now with the additional social distancing that masks create.

In communication, most of us rely on language – often at the expense of many other types of communication. However, nonverbal communication is just as important as the words we use. During these times of the Covid-19 pandemic, the use of face masks has become ubiquitous and they present serious communication difficulties which should not be under-estimated, for the wearer and the person they are talking to, alike. 

Lockdown is one thing, but masks are prisons that limit the range of our actions and words.

In covering our facial expressions, face masks hide our emotions. For example, pleasure, sadness, frustration, annoyance and fear are all emotions that we show on our faces without ever having to say a word. And unspoken communications tend to be the same across most cultures. Given the increasing use of face masks, this means of communication is becoming increasingly challenging.

Non-verbal communication is often the most effective element of communication when connecting with a person who has limited or impaired cognition or is living with dementia. People with dementia increasingly lose their ability to communicate verbally, but their body and para-linguistic interpretive skills are retained longer in most conditions and may even be retained right to the end of their life. They are usually able to interpret facial signals correctly and can be skilled interpreters, understanding when we are relaxed or stressed or conveying other subtle messages, making sense of things from the sound and inflection of our voice, our speed of speech, our posture and the way we move around. We know that when people have difficulty understanding, they will fill in the gaps by reading our facial expressions, the sound of our voice and body movements and posture.

Carers who are more alert to nonverbal cues are often well-practiced at reinforcing the other person’s perception of their sincerity, compassion, appreciation, dedication and competence. This improves their relationships with those they care for as well as their colleagues and also increases their ability to provide meaningful care.

Nonverbal communication provides unique opportunities to connect, so it is important to pay greater attention to our nonverbal communication in this time of social distancing and masked faces.

The following tips can impact and improve interactions with older people while wearing masks. Being focused on the challenge of this is key to success.

 

1. Pause and be mindful. Be self-aware

If things are busy and stressful, try not to let that be reflective in your voice. Make sure there is enough time for any interaction. Taking a moment or two for yourself immediately before an encounter can make a big difference to the experience. Creating a mental ritual to focus your attention before seeing someone, can help. For example, reflecting on the many varieties of communication that older people and their carers encounter in care settings, such as expert-layperson, healthy-sick, independent-dependent, cognitively healthy–cognitively impaired, young-old and family and so on, might be an option.

2. Be Calm. Smile inside – and outside

Show absolute respect. It is essential to approach the person from the front. This will help them to process who you are and what you are saying. Respect the person’s personal space and make sure you speak to them on the same eye level.

Good eye contact is most important. Use your eyes and eyebrows. Let your eyebrows tell the story. Remember to smile! The person may not be able to see your mouth, but they will be able to read the emotion in your eyes which will allow them to feel more comfortable and in control. They are very likely to be able to detect your body language, so remember that any sudden movements can cause distress and make it harder to communicate.

Be straightforward and try to stay calm. Project a positive, calm attitude and avoid any body language that shows frustration, anger or impatience. Try not to interrupt them and give them your full attention. Be flexible and patient.


Don’t just rely on giving information verbally. Using images, gestures, even written words, phone translation/text apps can be helpful. If the person is still able to read, it may be useful to leave any written version of verbal information that you use with them, so that they can refer to it later.

3. Speak clearly

Avoid noisy environments that might overwhelm with additional stimulus. It is useful to remember that 11 million people in the UK have hearing problems or are deaf. There are a number of hearing apps available on the market which can help. Firstly, create a safe space. and maintain your social distancing with a clear path. Ensure that any physical barriers that could block your view or further challenge your voice being heard behind the mask are removed.
Observe first, even if briefly.

Remember to smile! Always ensure that the older person is wearing their glasses or hearing aids. Your tone of voice includes your speed, tempo and pitch which can be as impactful as the words you are speaking.

Slowly communicate one point at a time. Use short, simple sentences and underline your words with appropriate gestures. Make your statement or ask your question and then pause. Keep your voice even, gentle in tone, and moderate your speed of speech. Go slow!

Lip-reading cues that many with hearing disabilities use to compensate will be absent, so make sure you articulate your words clearly without sounding forced, which may be taken as condescension.

Consonants matter! Speak louder if necessary but without raising your voice or its tone, because this might be perceived as aggression. Using NLP (Neuro Linguistic Programming) techniques of mirroring and matching the person’s gestures, vocal tone or mood can be re-assuring for them and help them feel better understood.

The messages we convey might be harder to interpret so we need to develop new habits, ensuring that we underline everything we say with gestures and pantomime. Going slowly with the person will make connection easier.

4. Remember to listen well

Listening is a vital part of communication as well. Making space to listen is very important in any encounter. However, in one randomised trial in 2010 it was found that “64% of the nurse participants had a weak knowledge of verbal communication skills and only 36% had relative knowledge about listening and speaking skills. This is while verbal communication skills are considered as the foundations of communication in everyday life”. your view or further challenge your voice being heard behind the mask are removed.

Observe first, even if briefly.

Remember to smile! Always ensure that the older person is wearing their glasses or hearing aids. Your tone of voice includes your speed, tempo and pitch which can be as impactful as the words you are speaking

5. Remember that our bodies speak as well

It is vital that we think about the ways in which we typically communicate, such as gestures and tone we use when we are not inhibited by distance and PPE. Once we become more aware of our characteristic gestures and body language, it is easier to align our nonverbal signalling with our spoken message.

Body language is vital to deliver meaning well and communicate effectively. Together, hand gestures and posture are very important. Our non-verbal cues should send message of kindness and empathy. Try to relax your shoulders. Remember to avoid crossing your arms in front of your body and keep your hands off your hips and out of your pockets.


It is always helpful to nod and add ‘mm’ and ‘yes’ when appropriate, as it acknowledges that you are listening and understanding.


Happiness can be seen by raised eyebrows, raised cheeks and crow’s feet. Remember to smile! On the other hand, eyebrows pinched together and eyes drooping can indicate sadness and when in a “V” shape can express anger.

The person with cognitive impairment may not recognise you at all in any encounter if you are wearing a face mask, even if they have spent time with you over many months, but we still need to make each connection count. As one wise soul once perceptively observed, “I may not remember what you said, but I will remember how you made me feel.”

About Sarah Reed

Sarah Reed is the founder and lead at REAL Communication Works.

Sarah lectures in Health departments at Kingston and City Universities. She now works with other highly skilled dementia care learning facilitators to deliver interactive REAL Communication workshops.

She has served on the SUCAB Service User and Carer Advisory Board in the School of Health Sciences at City University since 2017.

She is a Trustee of and thirty-year volunteer co-ordinator and monthly driver for national older people’s charity, Re-Engage (formerly Contact the Elderly). In 2015, she served on NCVO’s Volunteering in Care Homes advisory board. She is a member of the DH Quality Matters board.

Should we all be wearing masks?

Masks are an important tool for fighting the coronavirus 

The N95 mask is a particulate-filtering facepiece respirator that filters at least 95% of airborne particles.

Source: Wikipedia

“The N95 mask itself is extremely wonderful. The pores in the mask are three microns wide. The virus is one micron wide. The mask pores are 0.3 microns wide; the virus is 0.12 microns.

“So you get people who say, well, it’s not going to work. But you try having three big, huge football players who are rushing for lunch through a door at lunchtime—they’re not going to get through. In the latest data I saw, the mask provided 5x protection. That’s really good. But we have to keep the hospitals going and we have to keep the health professionals able to come to work and be safe. So masks should go where they’re needed the most: in taking care of patients.”

Source: Epidemiologist Larry Brilliant, Wired magazine 19 March 2020

So where are we in the uk?…. Well as of May 12 2020, the UK Government recommends homemade face coverings in shops, on public transport and in enclosed public spaces.

This is what Boris has to say in story from the Guardian titled ‘What is Boris Johnson’s advice on coronavirus and masks?’.

And here’s a Nurse in the USA that didn’t just create her own replacement N95 mask—hers works better >>

So if you now feel really inspired to have a go yourself, here are some useful links on how you too can make a face mask:

From the BBC > Coronavirus: How to make your own face mask

Form the Sun > How to make a coronavirus face mask – all you need is an old T-shirt

From Good Housekeeping > How to Make Face Masks for Yourself and Hospitals During the Coronavirus Shortage

The Scotsman > How to make a face mask: ideas for creating your own face coverings at home – and where you can buy them online

From the Guardian > How to make a non-medical coronavirus face mask – no sewing required

Pillow Talk

This touching moment of kindness, reported in the Lancashire Post has gone viral…

Play Video

PILLOW TALK FOR A CARE HOME RESIDENT

Second World War veteran Ken Benbow, 94, was overcome with emotion as he was filmed by staff at Thistleton Lodge Care Home in Preston, as teenage carer Kia Mariah Tobin, gave him this touching gift of a cushion featuring a picture of his late wife, ‘beautiful, caring wife Ada’. a sentimental cushion featuring a picture of his late wife. The couple were married for 75 years before her death last year.

Kia, 17, from Blackpool, who has moved into the home to assist during the pandemic, was inspired to order this very special gift after noticing Ken would take a framed photo of Ada to bed each night. She said: “He would take this picture in a metal and glass frame off the wall every night. Knowing how important it was, I just thought there has to be a better and more comfortable way.”

She and the staff had no idea how far reaching the special moment would travel and just wanted to record the presentation as a heart-warming memory for Ken and the staff to remember this time.
“It was just an idea I had to do something comforting for Ken and when I brought it in and showed the team, my manager suggested we should record his reaction.

“Ken is fantastic, so wonderful, he speaks so much of Ada and how much he loved her, – in a strange way I know her without having ever met her just from the way he talks of her. He’s a real character and it’s the people I’ve met that have made this job so rewarding for me. It was my own grandma who suggested I give it a go.”

Ken, from Garstang, was just 17 himself when he joined the Navy. His service saw him take part in most of the important theatres of war including D-Day and in the Pacific for the preparations for the invasion of Japan, just before the US dropped the atomic bomb which ended the war. He left the Navy in 1946 and was awarded the Légion d’Honneur by the French Government in 2016.

He met Ada while out dancing, just one week after he moved to Liverpool – “I can still see that post she was leaning against with her friends.” The couple courted for two months before making plans to get married. He described proposing to Ada at a dance, adding: “We were always dancing. I used to fling her over my shoulder and we would jitterbug. It was lovely! She was the most caring, beautiful wife anyone could ever wish to have. She never did a thing wrong in her whole life.”

Kia added she hoped the attention from the video would help to put a spotlight on the role of carers during the pandemic and the work behind the scenes to keep the vulnerable safe. She said: “The NHS are amazing in what they are doing but we know so many carers and home care workers who are too doing their bit working every day to go place to place to make sure people are protected and looked after.

“It’s not an easy time and that needs to be recognised. Care homes are dealing with this too and the support is vital.”

 

If you would like to do the same thing for a friend, you can do it here:

Meaningful conversation is one key to happiness

Talking makes people happy.

When my mother was in the care homes she lived in for the last seven years of her life, I was keen to ensure that she was engaged in meaningful conversation by carers as much as possible, so that when the family could not be there, she felt stimulated and happy.

She had dementia and I observed was that the more advanced her dementia became, the less staff were likely to engage in conversation with her. Often this was because the younger carers had no training in how to start or maintain a meaningful conversation with a person living with more advanced dementia – and of course, their life experiences were so different. It was this observation that largely prompted me to develop Many Happy Returns conversation trigger cards and REAL Communication workshops.

The workshops focus on a range of communication issues, including overt and unspoken language, body language, voice, tone and inflection, the complexities of memory and how it works, compassion and empathic engagement, why listening is so important to us all and how to do it better and the vital importance of a person’s life story and why it matters quite so much to any older person with dementia as well as those caring for them.

Self-care is part of communicating with oneself and more awareness of this and of self can help reduce the well-documented incidences of professional and unpaid carers’ burn-out.

As far as I know, there are no other conversation trigger cards like ours, which include carefully researched images from social culture with contextual background information and conversational prompts. Our REAL Communication workshops are unique. Both are based on research evidence. The following research results contribute to our work.
According to research from Washington University in St. Louis and the University of Arizona, outgoing, gregarious people who fill their lives with deep, meaningful conversations are lucky to have one of the keys to a happier life.


People who spend less time alone and more time talking with others have a greater sense of personal well-being, suggests the study, published in the journal of the Association for Psychological Science.

 

“Having more conversation, no matter how trivial, appears to be associated with a greater sense of happiness among the people in the study,” 

“Having more conversation, no matter how trivial, appears to be associated with a greater sense of happiness among the people in the study,” co-author Simine Vazire, PhD, assistant professor of psychology in Arts & Sciences at Washington University.However, the happiest people were those who often engaged in more meaningful and substantive discussions, as opposed to idle chit-chat and small talk.

Based on the conversation patterns of 79 college-aged men and women was tracked over a four-day period, the study was conducted by Vazire and three colleagues at the University of Arizona.

Using an unobtrusive recording device that participants carried in a pocket or purse, researchers taped 30 seconds of sound every 12.5 minutes, amassing more than 20,000 audio snippets of sound from the daily lives of participants.

Members of the research team listened to the recordings and coded the number of conversations each participant had, and whether each conversation was substantive or small talk. Each participant’s happiness level was scored using standard psychological tools for gauging personality and wellbeing, including self-assessments and reports from friends.

Participants scored as “happiest” in the study spent about 25 per cent less time alone and 70 per cent more time talking to others, as compared with the unhappiest participants. The happiest participants had twice as many substantive conversations and one third as much small talk as the unhappiest participants.

“Overall, these findings suggest that meaningful interactions with others are important for wellbeing,” Vazire concludes.

“However, our research cannot determine whether meaningful interactions cause happiness, whether happiness causes people to have more meaningful conversations, or whether there is another explanation. We believe it’s likely that both are true – that happiness leads to more meaningful connections with others, which then produce more happiness – but this remains to be tested in future research.”

When we feel valued and appreciated, our sense of self improves and we are more likely to value and appreciate others more and in turn, this encourages them to value and appreciate us more. Nowhere is this ‘virtuous circle’ of value and appreciation more true and more obvious, than in care homes.
To conclude, meaningful conversations need inspiration.

When we inspire a person we are speaking with, we create a welcoming space in which they are encouraged to share, (but not required to). This gives them more freedom in how they respond. If you ask, “How was your weekend?” (an invitation), the person can only respond by answering your question.

Instead, if you share a story from an event you experienced at the weekend that may be relevant to the other person (an inspiration), then they can choose how they respond. It’s up to them. And that means it’s not up to you.

Weaving inspiration into our conversations frees us from the responsibility of knowing what to say next. Inspiration encourages us and the other person to ‘co-create’ a conversation together.

All we need is to be genuine in what we share, and share it in a way that encourages others to share as well.

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 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