Building rapport with a person living with dementia

Building rapport with a person living with dementia

Sarah Reed

June 2023

Without doubt, good interpersonal relationships are essential to everyone’s happiness. We all know people who are able to connect well with others, creating a sense of harmony, affinity and trust in minutes. It might seem like natural ability, but when understood, it can also be nurtured and improved. This is rapport.

Rapport helps us make meaningful and harmonious relationships with people. It’s that sense of connection that you get when you meet someone you like and trust, whose point of view you understand, with a bond that comes from sharing some of each other’s values and priorities in life. This mutual understanding and acceptancebetween someone caring for a person with dementia and the person themselves is a crucial part of well-being.

Rapport with someone means being both focused on and interested in what they are thinking and saying; being friendly, positive, showing care and concern for the other person, feeling ‘in sync’, with some shared common understanding.

Rapport can deliver helpful results, like greater awareness and similar, shared energy levels and more nuanced body language. It can appear instantly, as when you find yourself just ‘clicking’ with someone – or it may build slowly, over time. It can grow naturally, without intent, or it can be quite deliberate and grow through meaningful conversation. And as for the best conversations, it’s surprisingly simple really – nearly all of us enjoy talking about ourselves.

As brain scans show, one reason why we enjoy talking about ourselves so much, is that when we do, the mid-brain regions that deliver dopamine, – the ‘feelgood’ chemical associated with pleasure and reward, light up brightly. In one study, research subjects were even willing to forgo money to disclose their stories, with the rewards of sharing them being enough just in themselves. Honestly, you couldn’t make it up!

Here are some tips for engaging in conversation with a person living with dementia that can create greater rapport. And like all good dementia skills, they still apply to conversations you might have with anyone…

Feeling safe and positive matters.

A person with dementia needs to be able to trust you and know that you are on their side. Don’t patronise them – the person has a life time full of rich experiences. Always accept that their reality is real to them and avoid logic and reasoning, which can prompt arguments.

Sincerity matters.

A lot. Sincerity and rapport are interlinked. A person with dementia can still discern when it’s missing, so it’s important to be authentic and genuine.

Self-awareness matters.

Be observant of the person and of yourself. Having insight into why you feel the things you feel, why you behave in particular ways and how others might see you, is all part of building rapport.

Listening matters.

However difficult to do, it really does! Perhaps more than any other skill, listening actively is the key to rapport, – and therefore all our relationships. Resist the urge to switch off!

Empathy matters.

Empathy is the ability to sense another person’s emotions and to envisage what they might be feeling, showing compassion and understanding (not to be confused with sympathy). 

Body language matters.

It’s good to remember that it is a major part of your communication. Ensure that yours is open and similar to the person you are with. Remember, your face will convey that you are listening – if you turn towards them, with your eyes focused on them, at the same level whenever possible.

Smiling matters.

Smiling decreases cortisol in the body, helps heart health, lowers blood pressure and reduces stress. A simple smile, whether given or received, prompts the brain to produce endorphins and serotonin, the ‘happy hormones’ that trigger positive emotions. There’s nothing like some merriment – sharing things you have in common that are humorous and amusing are a great fast-track for building rapport.

“Tell me about...”

is a wonderful starting point for a conversation to develop rapport. As both a suggestion and an enquiry, “tell me about…” implies curiosity to explore more about the person and their life ­– and promises attentiveness to their answer.

The more you show genuine interest in and appreciation of any person, the more likely they are to relax and open up. If you can tempt them to talk about themselves, you’re making progress. If you can show them that you’re really listening to them, rapport will surely follow.

merriment – sharing things you have in common that are humorous and amusing are a great fast-track for building rapport.

Sometimes, listening and hearing are different skills

Sometimes, listening and hearing are different skills

Sarah Reed, 27 November 2022

As a dementia communication practitioner, I often think about how we can interact more successfully with people who are living with dementia and how our interactions can also have a positive effect on our other relationships. 

The old saying in dementia care – ‘what’s good for a person with dementia, is good for everyone’, is never truer than in listening. Listening to each other with intent and kindness helps us ‘hear’ a person on a deeper level and helps build more loving and meaningful relationships – after all, we all want and deserve to be heard. Effective communication is one of the most important aspects of the care of any person living with dementia. It often means reconsidering how we interact socially and there’s always lots to learn.

Many people think that if a person isn’t communicating, it’s because they can’t understand what’s going on around them, but that’s not necessarily the case. The part of the brain responsible for communication is separate from the part that’s wired for awareness. So even though the person might have difficulty communicating, they may well want to – and can understand the situations they are in.

Caring for a person living with dementia can be a truly formidable task – and of course, few of us are really prepared for it. Apart from being physically and emotionally demanding, it requires the carer to have almost limitless energy, patience, understanding  and good humour, in a time-frame that will inevitably be increasingly influenced by the person being cared for. This one-way street can be very stressful for the carer as well, especially as the other person’s mental ability and awareness constantly shifts and declines.

Having said that, it can be immensely rewarding to care for a person with this long-term terminal condition, even as their spoken communication skills deteriorate. Thoughtful connection can make a real, positive difference to their wellbeing – and as importantly, ours to.

Background motion and sound can be both distracting and confusing, so it’s best to be in a quiet environment, with the TV or radio turned off. It helps to make your togetherness equal. Rather than sitting opposite the person, sit comfortably next to, while turned towards the person, as though sitting at a corner table. This means you can turn to look directly at one other and have good eye contact, yet be able to look away, so it doesn’t feel too intense. This helps create a safe space for a shared experience.

Be aware. Notice how the person looks away when thinking and especially when remembering something. How does their mood seem? It helps to attend to physical issues like hunger, thirst, tiredness, or pain first and talk, second.

Allowing time to think in conversation matters. Equally, as the person’s condition deteriorates, their concentration span will reduce, so it’s good to know how long is long enough!

Encourage the person. For any of us, some heartfelt appreciation such as “that’s brilliant!” “you are fantastic!” “what a great story!” “thank you for sharing” are always good to hear. Even though you may have heard the same story many times before, for the person whose self-esteem is diminished by their inability to remember or do things, such support can lift their spirits. Even if admiring words may be forgotten moments later, being positive will make a positive difference to any exchange.

You have the power to make it enjoyable, so try to be in the moment, be playful and use fun and humour. Making every experience as nice as it can be helps both the person struggling to make sense of the world – and you, as well.

You are likely to hear some things repeated and it can be challenging to listen as though it is the first time, but it’s best to avoid reminding the person that they have already told you something, even though you may be near word-perfect. This can require tremendous patience, but it’s always worth it. Try to avoid disagreements about anything, after all, facts are often less important than a person’s feelings.

Empathic connection is what makes for the best relationships – and the best dementia care. Remembering that the person with dementia is a person first, full of rich life experiences helps make listening and hearing easier – and caring for the person more meaningful and rewarding.

Each of the many different types of dementia has its own symptoms and effect on a person and on the way they cope. It’s always good to remember that compassion, kindness and meaningful connection have a major, positive impact not only on the person’s sense of wellbeing and quality of life, but also that of their carers.

Zoe Harris – Introduces ‘My Future Care Handbook’ in an interview with Sarah Reed

Zoe Harris - Introduces 'My Future Care Handbook' in an interview with Sarah Reed

Zoe Harris has created the My Future Care Handbook. With over 60 pages packed with information, with links to further online resources.

Its the perfect one-stop shop for all things related to later life and beyond, from compiling a bucket list to writing a Will, from creating a music play list to considering how you might want to live and/or be cared for if you need support, and much, much more.

Here’s what some people have said about the Handbook..

“I can’t recommend this strongly enough. Whether for an ageing relative or for your own information, education and action, it cuts through red tape to focus on decisions you might want made on your behalf if/when you can’t.” Neville

 “This is a really great resource. Accessible and simple to follow with some important wins just by working through the book. We loved it.” Philip

“The Handbook is literally a one-stop-shop for anything and everything future care related. What makes this resource particularly useful is how accessible it is. It takes what is a really tough topic and makes it as easy to address as it’s ever going to be.” Beth

You can buy a copy here >

With thanks to Zoe Harris

Zoe Harris

Specialist in improving people’s experience of care. Founder/creator, Care Charts UK, Mycarematters and My Future Care Handbook. HSJ Innovator and Nesta Radical 2014.

Age and mental attitude count

Age and mental attitude count

Photo by Cristian Newman – on Unsplash

What we are seeing now is more of a discussion around what ‘older’ means and when it starts.

Age and mental attitude really does count in tackling age discrimination. 

People are resisting lumping all ‘over 70s’ together, acknowledging the massive variety of experience in different people’s lives from ages 70 to 100+.

As a result it’s as impossible to lump together this whole group as it is to put people from age 10 to 40 in the same category.

Therefore, assuming teenagers have the same life experiences as 30+-year-olds is clearly ludicrous. Yet creating a lumpen group that puts 70-year-olds with 90-year-olds isn’t met with the same degree of automatic derision.

However, if anything, we become more diverse as we age, given the variety of our experiences across the lifespan.

So yes, take a moment you self to consider that age and mental attitude really does count because it really counts for everyone!

Inspired by Alex Rotas, photographer of older competitive athletes, writer, and activist.

Read ‘Mental attitude is all that counts’ at  Theagebuster.com >

Interview by Stefania Medetti

“In a society that values youth as the only desirable condition, The Age Buster decodes what we think about aging.

Here you can find ideas for a meaningful, self-directed and rewarding life forward.” Theagebuster.com >

Remember that age is also about making personal choices >

Positive ideas offers a collection of news stories of people and organisations improving the wellbeing of older people >

Costume designer to facemask designer

Costume designer to face mask designer

‘As a costume designer, I was especially gripped by the shortage of PPE.’ 

As the Coronavirus pandemic unfolded, I found myself watching the news in helpless disbelief. As a costume designer, I was especially gripped by the shortage of PPE. Medical friends were saying that things where really bad, even though the government claimed it was okay.

Other concerned volunteers were forming and mobilising to help. With my partner Jake Farr, we created www.scrubhub.org.uk

Initially there were seven London groups but with the Visor Army project on Facebook, this has grown to around 130 groups all over the UK.

It was immensely comforting during this time to be able to concentrate on making scrubs and visors, small simple tasks I could do at home, that were being replicated in so many homes all over the country, collectively making a really big difference.

Setting up Acemasks seemed like the logical progression from this. As we ease out of lockdown, facemasks will be part of our ‘new normal’. Initially the idea of wearing a mask filled me with horror. After a few trial runs wearing a mask out and about, I felt really uncomfortable. Despite other people wearing them, I felt that most of them were looking at me in horror!

A friend sent me a picture of her in a medical mask she had decorated with multi-coloured dots. I really liked how she had made it her own. This spurred me on and I decided if I was going to do this, I needed patterns, colours and floral prints to make me feel more comfortable in a mask. I wanted to own the experience and communicate to others when they looked at me in my mask, “It’s going to be okay, we can do this!”

Should we all be wearing masks? >

Conversations with Care Homes

Conversations with Care Homes

Conversations with care homes a series by My Home Life England 

‘Conversations with Care Homes’ is a series by My Home Life England (MHLE). In Episode 7 we focus on how best to support care home residents living with dementia during COVID-19. The pandemic has posed additional challenges for those living with dementia – for example the disruption of familiar routine, the need to socially distance and wash hands more regularly, and the impact of staff wearing more PPE. We share stories, tips, methods and signposting for how best to support residents living with dementia at this difficult time.

You can see more Videos from My Home Life here >>

A message from My Home life to the care home community:

You are doing an incredible job in challenging circumstances. You continue to make such a positive difference to people’s lives – thank you. We see you, we appreciate everything that you are doing, and we want you to know that My Home Life England is always here for you. Keep up your fantastic work and please do get in touch if you are able, we’d love to hear from you.

Please get in touch! If you have any stories to share, please contact us at mhl@city.ac.uk or call 02070405776 For more information about My Home Life England, please visit our website or find us on Twitter & Facebook – @myhomelifeuk

About My Home Life 

My Home Life was founded in 2006, by National Care Forum in partnership with Help the Aged (now Age UK) and City, University of London.

It is a social movement for quality improvement in care homes that has spread nationally and internationally.

The success of My Home Life lies in our four evidence-informed guiding principles: Developing best practice together, Focusing on relationships, Being appreciative, and Having caring conversations.

“A diagnosis of dementia for a person is also a diagnosis for the whole family.”– Four letters that make communicating with a person with dementia more real.>>

People first ‘Social Care 360’

People first ‘Social Care 360’

People first –‘Social Care 360’ an article by Neil Crowther

Last week, the Kings Fund published its useful ‘Social Care 360’ report, outlining 20 key trends in social care. The data was collated prior to the Coronavirus pandemic and the Kings Fund notes how the analysis may look radically different on the other side.

The section on ‘quality’ notes that public satisfaction with social care in 2018-19 stood at around 29% ‘a figure that has remained broadly unchanged since 2012.’ This is contrasted with 65% of people who have direct experience of social care who who say that they are ‘very’ or ‘extremely’ satisfied (though this is caveated). The report asks ‘Why, then, are public perceptions of care services not as positive as might be expected?’ and speculates that in addition to the poor quality of some services across the country and the public’s general lack of understanding of what social care is and does, ‘Another factor is likely to be media coverage. There have been several high-profile reports of the very worst care, including abuse, which understandably stick in people’s minds.’

I was surprised not to see reference here to the work of the Centre for Corpus Approaches to Social Sciences, on the media narrative around social care, to #socialcarefuture’s own work on sector messaging and the (admittedly limited to date) work by the Frameworks Institute on public thinking. This analysis has found a clear and consistent pattern linking campaign and sector messaging, media reporting and public thinking in which social care is framed in ways that seem unlikely to enlist positive public perceptions. Specifically, social care is commonly framed as for ‘vulnerable people who need to be looked after’, as ‘broken’ and in need of ‘fixing’, in ‘crisis’ and as a presenting spiralling cost to the public purse, without any apparent value. Individual high profile cases of abuse and neglect certainly inform this narrative, but of more influence is the messaging that continues to be proactively generated by advocates for reform, including the Kings Fund.

Why invest in a sinking ship?

The truth of the matter is that proponents for reform have actively strived to cultivate low public satisfaction with social care as a campaign tactic. The apparent 35% gap between reported user satisfaction and public satisfaction will presumably be seen by some as beneficial, because it is understood to symbolise the public’s unhappiness and desire for change. Yet this understanding isn’t borne out by the evidence. For example, the latest analysis by CASS for #socialcarefuture found that social care barely registered as an issue among the Twitter-using public during the 2019 General Election, despite its apparent greater profile in the mainstream media. Perhaps repeatedly telling the public that a ship is sinking, not giving them hope and direction as to how the disaster can be averted, then asking them to support spending more money on the sinking ship, doesn’t work after all?

When I have raised this before, some have said that they see it as their ‘moral duty’ to ‘speak truth to power.’ This is a powerful argument. However, effective framing should not be confused with hiding the truth. It’s about how a story is told, not avoiding telling it. More crucially, I would argue that the overwhelming moral duty of those organisations claiming to represent the interests of groups affected by social care is to be effective at winning change. Pointing out wrongs, however loudly, may give us a sense of righteousness – and it’s probably helpful in driving donations – but it isn’t always the best way to right those wrongs.

Coronavirus is writing its own story of social care

Now we have the pandemic. We know its devastating impact on those who live in care homes, and on those who work in them. This is national scandal, amounting, I would argue, to a systemic violation of human rights, resulting both from government action and inaction. We have yet to see the impact on people who draw on other forms of social care support, whether in other forms of congregate living or in their own homes or on the people who work in these areas. We can only hope it isn’t as terrible. ‘Speaking truth to power’ in this moment is vital, because it is an emergency. Lives are being avoidably lost. Further loss of life must be prevented. Accountability is everything.

Nevertheless, the impact of this pandemic will extend way beyond its immediate toll on people’s lives, and hence we still need have an eye to the future and the longer-term impacts for care and support.

Now I keep seeing people publicly anticipate that the current emergency will cause the public to recognise the importance of social care and the need to fund it sustainably. How could they not value what social care does after all this they ask? I’m afraid I can’t see this at all, unless it comes with a commitment to radically change what social care is, how it works & how it is talked about.

If the public didn’t understand what social care was before the pandemic, they’ll now consider it – wrongly – to be all about care homes. And because of what is happening, care homes will be seen, fairly or unfairly, as places to avoid – as unsafe places where you or your mum, dad, grandma or granddad may die, invisibly and alone. They will be thought of as prisons, which separate families and only allow them to communicate through closed windows, in which older people with dementia spend all their time alone.

Sadly, because the public narrative on social care is being dominated by care homes, these stories will colour any and all debates about the future of social care. This is especially the case given in the midst of the pandemic the government, has imposed the single ‘CARE’ brand on ‘the sector’, obscuring its huge diversity in the name of ‘recognition’. Existing patterns of thinking about social care that associate it with losing dignity and control seem likely to be reinforced, making it harder to promote the idea social care as something that helps us all to maintain or gain things we value

Kicking social care while its down

Some of this is now inescapable. However, on top of this, the sector and some advocates seem now to be turbo-charging the same narratives about social care that had contributed to such low public satisfaction prior to the pandemic: foregrounding the plight of ‘the sector’ not the people supported and the families that look to them to keep their loved ones safe; saying social care ‘was fragile’ and ‘already in crisis’; that it is a ‘Cinderella service’ that isn’t considered to be as important as the NHS; that it is a very large cost to be met, but absent of any clear and compelling articulation of its value save ‘looking after our most vulnerable (read, ‘low worth’) citizens’.

Where do we really imagine public satisfaction with social care will be after the pandemic? And do we imagine public satisfaction lower than 29% will be beneficial in winning support for investment and reform?

There are things leaders and communicators concerned about the future of social care can avoid doing and to start doing now in the way we talk about the current situation and in building the future most of us seek

People first, not sector first

I imagine it’s because of the ‘protect the NHS’ mantra, that some have started to say ‘protect care homes’ or ‘protect social care’. But that ignores how the NHS is not simply a ‘sector’ or ‘organisation’. If that were the case its inclusion at the heart of the Olympic opening ceremony would have made no sense. It was there because it is hardwired into our national identity. Calls to ‘protect the NHS’ resonate because they are calls to protect our national shared values – to protect us all. This doesn’t work for social care because it is not ingrained in our hearts in the same way. But the people we love are. And social care supports the people we love – our mums and dads, grandmas and granddads, brothers and sisters and friends. So stop talking sector, and start talking about protecting and supporting the people that the sector supports and that other people love and care about. Celebrate their lives and achievements as Aisling Duffy did here for example.

People and families, not ‘vulnerable people’

The pandemic has seen the elevation of the words ‘vulnerable/vulnerability’ into the public lexicon. This was already commonplace in discourse around social care. The pandemic has revealed its counter-productive impact. Not only does it cause confusion as to who it applies to, it also undermines social status to a degree that rather than enjoying special ‘protection’, people labelled vulnerable are being abandoned to die in care homes, subject to reductions in social care support and are told they will have to spend months behind closed doors while the rest of the world gets back to ‘normal.’ So, again, don’t talk about ‘the vulnerable’, talk about people, their lives, relationships, current roles and histories. Instil equal worth by celebrating lives and contributions. Talk shamelessly about love. Situate social care as the ‘invisible scaffolding’ that supports people to live their best life. And ensure that your framing speaks to a ‘bigger us’, linking social care to shared values (‘because we care about one another’) rather than ‘them and us’ (‘we care for the most vulnerable’).

People first ‘Social Care 360’

Care and support, not ‘and social care’

Stop trying to align social care to the NHS. The positioning of social care as a pressure valve for the NHS is precisely what facilitated the mass discharge of ‘bed-blockers’ from hospitals to care homes, untested and possibly with fatal consequences. The NHS does not care about social care, save its role as a ‘protector’. Constantly striving to rehearse social care’s value to the NHS reinforces its subservience to the NHS. Stop talking about ‘moving in’ with it. Social care cannot establish equal value in such an unequal relationship, so defining social care against it just diminishes it further still. In your messaging, point away from the NHS and talk about what great social care does that the NHS does not: supports family, relationships, communities, people to establish or maintain meaning and purpose, to live life to the full.

Social care must build its own story and value in the public mind, or it will always remain cast as an expendable ‘extra’ in the NHS’s story.

People first ‘Social Care 360’

In conclusion

A tragedy is unfolding for people living in our care homes. Those responsible must be held accountable. Its causes must be confronted and major changes made. It would be further tragedy if the work needed to achieve public support for the reform and financing to secure a better social care future was undermined further still by the continued failure o shift public thinking and to build enduring support for change.

In the next few weeks we’ll begin the next phase of our research to better understand how we can talk about care and support in a way that enlists public support and understanding. It won’t be easy, but I look to other fields that have won change by shifting the way an issue is understood, the feelings it creates and the values people attach to it, from childcare to equal marriage, and I see no good reason why social care cannot begin to make this journey too. All of our futures depend on it.

About Neil Crowther

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

Check out Social Care section with useful resources and the latest Social Care News stories here >>

Queens Court Care Home under lockdown

Queens Court Care Home under lockdown

Interview with Shaaron, 18  May 2020

Shaaron Caratella is our care home specialist advisor to REAL Communication Works.

Originally an RGN nurse in the NHS, she went on to gain a BSc in Nursing Studies, a Diploma in Orthopaedics and an MSc in Health Sciences. Her passion for the good care of older people shines out of her and she has been the Manager of Barchester Queens Court Care Home for 23 years, what she doesn’t know about nursing home care, is hardly worth knowing.

Queens Court locked down early in March and this means that my fortnightly conversation group with residents, which has been going for about a decade, also had to be temporarily suspended. I really miss the lovely residents in my Sarah’s Chats group, but have stayed in touch with them with intermittent postcards from the coast. Reassuringly, one of our group has even taken up occasional correspondence with me!

Last week, Shaaron and I had a phone conversation, as I was keen to hear how she and everyone else is coping. She sounded comparatively cheerful, given the circumstances, which pose so many challenges….

“The staff have been really shell-shocked. We have lost some staff through natural wastage – one of our full-time staff left to work at a different care home early on in the Lockdown. Only the really brave care workers were coming in for about the first month and I was very concerned about the psychological state of the staff – we were all very sad.

‘We had to implement special protocols for infection control from day one’.

And then there are the reports… the endless reports. Everyone wants reports, Public Health England, Merton Council, the CQC, the London Capacity Tracker. Everybody wants it written down, which means a lot of extra work.

The laundry has been really challenging, because nothing can be worn or used more than once without fastidious cleaning, so the washing machines have been very busy and our maintenance man has been living from moment to moment to ensure that everything keeps running. He has never had to work so hard.

Barchester Healthcare has been really good and has really invested in the care staff. They had a strategic plan by mid-March. We do a daily Covid update with all manner of detail, including infection control and deep cleaning, right down to meeting and greeting.

Every Monday, we do a thank you for the care staff that comes straight down from the (Dr) Pete Calveley, ourChief Executive and the reviews have been very useful. There is been a lot of good feelings towards care homes and we have been celebrating the kindness. We are trying to be mutually supportive. There is a huge amount of respect for the staff and a huge amount of responsibility for them, too. But they understand it. They get it. Right from the early days, the staff and residents have been very supportive to each other, even though the first two months were a baptism of fire – it was relentless.

The situation with families has been very challenging. Although they have been able to Skype or phone, the lack of visitors is really a problem in the care area. Of course, their new isolation means that a few of the residents have become quite depressed, but we’re doing our best to keep them connected to their families and to one another. Our good relationship with families has paid off. We are on first name terms with them now in a way that we never were before. There is a huge amount of trust and our team knows that, so we try even harder to be there all the time for our residents.

As far as health matters in the home are concerned, we are proud that the results of Whole Home Testing showed that we are Covid negative. Residents have had some hearing aid issues and some have needed to be seen by the optician – it’s good that our GP visits all dressed in PPE. It’s been very good for the team to use all their skills including hairdressing. Since it’s been warmer, the residents have been socially distancing in the garden and having ice cream and doing a quiz or just taking in the sun.

 

‘There’s been a lot of kindness and we all laugh and giggle together. Of course, you feel absolutely exhausted at the end of the day, but there’s nothing like a glass of wine to cheer you up’!

Hospitals aren’t discharging residents to some care homes – they are only using contract beds, even in this time of Covid. Of course, hospital staff don’t have time to develop the deeper relationships with the residents the way that we do. Sadly, they can forget – and lack respect for, the great age and needs of these special older people in our small community.

Living with loss and grief in a care home

Photo by Fabrice Villard on Unsplash

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

Living with loss and grief in a care home during these times is a part of the every-day experience for carer, staff and families.

For anyone who is working in the care sector may 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 own 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 (you can find out more here). We feel the loss of how things used to be in our care home and may feel powerless to change it.

Living with loss and grief in a care home is having a profound effect on the residents and many more of the women and men who live there 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

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.

Grief

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.

Living with loss and grief in a care home

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

Coping with loss and grief

Photo by Arno Smit on Unsplash

Part II – Coping with loss and grief and 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?  

Check out more Wellbeing for Carers here >