When we consider this as nurses, we understand that person centred care is a philosophy that places the individual at the heart of their experience.  It is an approach that respects and values the entirety of what makes a person uniquely individual.  Yet, this theoretical concept is often confused, and little understood from a practical standpoint.  It comes back to the question, as nurses today who adopt a person centred approach, are we ‘to do’ or are we ‘to be’? In spite of the differences of being and doing, a main focus of each of them has been on the way we support the people we care for. But what is person-centred care, and how can one person be expected to say what is and what isn’t person centred for someone else?

Well, the only way I can rationalise this in terms of my clinical practice is to look at what ‘doing’ and ‘being’ actually means.  The answer is not simple, the very premise of person centred care is unique and individualised in itself. What does that mean? – essentially for me, it’s different from person to person or nurse to nurse and usually takes a little of both ‘doing’ and ‘being’.  So, have we moved on from Nightingale’s preposition that confusion remains in the realm of nursing?  Personally, I think we have come a long way!

The argument ‘To do’.

In an article I read on the internet, a quote by Ricky Gervais said “you should bring something into the world that wasn’t in the world before. It doesn’t matter what that is. It could be anything – everyone should do something for self and others, then sit back, and say, ‘I made a difference'” (N.A.Turner, 2019).  In essence this is true, as nurses we not only make a difference by the nature of our roles, but we also create the ability to connect with people as well as support best practice and evidence-based care to be a reality.  So yes, doing something is important.

The argument ‘To be’.

Socrates said that to find ourselves we need to be ourselves.  Your passion, your values, and your extraordinary capacity to make a difference is intrinsically linked to why we decided to ‘be’ a nurse. Compassion is the cornerstone of nursing, a gift that brings solace and healing to those in need and this is the essence of being a nurse. Shakespeare made these words famous in the soliloquy of Prince Hamlet in his play, at the very core it is literally a question of choosing to live (being present) or not (existing).  Humanity was not designed to simply exist; we are feeling beings.  Emotions and feelings are a universal language. By embracing being not only ourselves as nurses but understanding what this means for those we care for is fundamental to nursing practice.

So now we can see to create a true new culture in nursing and embrace practice in a way which matters, there needs to be elements of being and doing.  But how does this reconcile with person centredness?  At Meaningful Care Matters we believe there are three essential practice elements.

1. Dignity, Compassion, and Respect at the Forefront

It’s crucial to understand that despite what may be happening medically, physically, psychologically or around the person we are supporting, they still have their own thoughts, needs, and feelings. When we can reach a place where regardless of diagnosis or cognition, we can seek to understand each other’s needs and opinions, ultimately this empowers people to feel more in control of their journey and own health. Dignity, compassion, and respect MATTER.

2. Support people to ‘Find their voice’.

Your voice MATTERS.  Supporting people to find their voice and making sure this is heard is critical to support people to live life versus existing in life.  Life story, people that are connected through relationships and finding a way for voice to be heard is where individuality and the core spirit of a person comes from. In life, finding your voice is about speaking and living the truth. Each one of us has our own distinctive voice. It’s what drives us and what makes us unique.  Voice is not something spoken or shouted, it is about the core essence of who we are as individuals.  For true person centred care to become a reality we have to ceaselessly discover that inner voice so you can be heard regardless of whether you can speak or not!

3. Create and promote with purpose a fulfilling life for those we support.

Purposeful living MATTERS.  Purpose can be found in many places, and it is at the heart of everything we do:

• It’s about supporting people to make choices that align with what feeds their soul.
• It’s about connecting with meaning and supporting independence regardless of any limitations the person is facing. 
• It’s creating moments in care where people can be supported and support others in return. 

As nurses we have the unique opportunity to be beside people and provide hope and light regardless of the situation.  To me this encompasses both BEING a nurse and DOING what I can do to make a difference, for both the people we care for and their loved ones. Only through demonstration of true caring with heart, soul, emotion and clinical expertise do we empower and create a safe space giving those we support the peace to be able to share their fears and feelings. The privilege to care for others when they are not able to care for themselves is a true calling and one not to be taken lightly.

That’s the new culture of nursing.

Works Cited

N.A.Turner. (2019, August 5). Ricky Gervais on Chasing Your Dream, Doing the Work and Living a Creative Life. The Startup. New York, New York, United States of America: Medium.

Nightingale, F. (1860). Notes on Nursing. What it is and what it is not. (First American Edition). New York: D. Appleton and Company.

 Shakespeare, William, 1564-1616 author. (1623). The tragedy of Hamlet, Prince of Denmark. [London]: The        First Folio.

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He came to us at Sefton Hall, Dawlish before Xmas ‘21, after many placements in multiple / different care settings over some 10 years, had all failed. 

He has also been under the guidance of the NHS services.

David came to us with a diagnosis of advanced dementia, chronic pre-disposition to episodic complex behaviours & other conditions.  

Despite the team’s best efforts, behaving with unconditional positive regard (Rogers C.) & showing unconditional love and affection (Robbins T.), working with ‘feelings matter most‘ (Butterfly Approach, Meaningful Care Matters) he still had not settled with us (quite unusually for the home). In fact, sadly, the home subsequently felt unable to support him, such was his anxiety, and nothing the home tried, seemed to be working. 

One of our Nurses, Daniela, an RGN, really felt something was unusual and not right. 

She researched his medication. She also looked at their potential side effects. 

She was aware he was on a high dose of ‘Primadon’, a drug intended to relieve ‘the shakes’ he previously suffered from.  She found out this medication had been prescribed for 10 years and had never been reviewed by any GPs before he came to us. He registered newly with the Home’s GP. when he came to us. 

The drugs’ potential (but very rare) side effects were quite horrific, and Daniela thought this might explain his behaviour. Upon approaching the GP, she was open to the possibility of the medication side effects triggering the behaviours David experienced and agreed to reduce Primadon from his medication. 

Within weeks, David subsequently regained full and normal health, does not have a dementia at all and has now left Sefton Hall.  He has bought a flat overlooking the sea. He has also bought a laptop and is now going to resume research. 

David has little recollection of recent years, but despite his loss, is so happy to be ‘alive’ again. 

This story is of course double edged, but we can only look forwards. He visits the Home regularly and has become a real friend. 

With thanks to Geoffrey Cox, Southern Healthcare, David for permission to use his story and to Daniela, a nurse for going the extra mile.

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From my own experience both as an attachment-based psychotherapist and as partner to someone living with dementia, “challenging behaviours” often come from a place of fear for all involved.  The person who is expressing the behaviour is frightened they can’t get through to other people and the person or people who are trying to help understand are also afraid.  There’s a need for some kind of regulation of your own feelings as the support person – to take space and time to breathe and to try and interpret what is being conveyed.  It’s not a personal attack, it’s not that the person is trying to be difficult. It’s not something we won’t ever be able to understand. We just need to try and take the time to make sense of it.

It reminds me of some of the features of separation anxiety – when someone feels fearful as they are not with the person who offers them a sense of safety and helps them feel understood.  So, they might retreat into themselves or push you away.  This doesn’t mean they want you to go!  They are desperately seeking comfort and connection, even if the message they are giving might feel like the opposite to you.  They want you nearby, maybe not too close, but they are trying to express, “Please stay and try to understand me.”

An example of my own is when my partner John was up a lot in the middle of the night at home and I felt completely exhausted.  The usual things which often helped such as calming music just weren’t working.  John started shouting at me and I shouted back, “For God’s sake, we’ve just got to get some sleep.  How are we going to do this?  This is just terrible!”  He paused for a minute and then said; “Shall we ring my mother?”  (who had of course died many years before).  This made me stop in my tracks and realise this was a message to me and the real question was “What would my mother do in this situation?” It calmed me down and I realised we actually both needed a mum at that point to rescue us.  We both felt overwhelmed and vulnerable.  Once I had collected myself, I responded to him saying, “That’s a really good idea, but as it’s the middle of the night maybe we can ring her in the morning.”  We then went into the front room and watched a favourite Oscar Peterson DVD snuggled up on the sofa and snoozing together.   I had got caught in the trap of thinking we had to be in bed to sleep, when actually we could find another way to rest and be close.  I could so easily have made matters worse, but John’s desire to call his mother reminded me of what mattered most to us both.

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However, the ‘D’ which is still not talked about enough, especially in relation to ageing is ‘Depression,’ arguably just as prevalent and as life changing as dementia, but less recognised, under-diagnosed and under-treated.

It is hard to understand why this might be the case.   Some of the reasons might be that many of the signs of depression can look and feel quite similar to some signs of dementia including memory loss, cognitive difficulties, reduced motivation and sleep problems.  This results in less experienced professionals explaining these symptoms and mood changes as being because s/he has dementia, rather than being understood as a distinct other illness – depression.  The other more worrying reason might be that there is a general acceptance in our culture that somehow being sad is a ‘normal’ part of getting old.  To some extent this is understandable, because there are many losses and changes associated with ageing which are likely to make people less happy.  If our spouse has died and we have also lost many of our closest friends, if we are no longer living in our own home and we are less mobile and independent, life will undoubtedly feel very different.  However, we know there are many older adults still living life very fully into their 90s and beyond, including those in the very best care homes, where new friendships are formed and there are many things to look forward to in the day.  We should therefore not see sadness as inevitable, and most importantly, know that depression is not just an everyday passing sadness, but a debilitating and distressing illness which needs urgent attention.

An interesting piece of research by the British Geriatrics Society and The Royal College of Psychiatrists in 2018 highlighted some examples of best practice as well as some of the gaps in relation to recognition and treatment of older people with depression.   Staff training in understanding depression was highlighted as an important need.   My own experience in care homes over the years is that there are many people who express suicidal thoughts, “I want to die”, and the overwhelming reactions to this are what I would describe as the ‘cup of tea’ response – kindly meant, but essentially an awkward brush-off for staff who feel ill-equipped to know the right thing to say or do.    There are many possible helpful treatments for depression – both talking therapies and pharmacological.  It seems relatively rare for older adults to be offered any formal counselling in care homes settings – is this because there is some ageist assumption that it is ‘too late’, or maybe it is related to cost or lack of therapists interested in this area, although I would doubt the latter?  

Almost all the studies and informal evidence highlight the importance of addressing loneliness and lack of social stimulation as an associated cause of depression.  If we have things to do in our day, people to talk to and interests to pursue, our mood is likely to improve.  Physical exercise is also strongly associated with lessening the symptoms of depression.  Many care homes do run exercise classes on a weekly basis, but should there be something physical offered every day?  If someone is clinically depressed of course, the big ‘Catch 22’ is that they are less likely to be motivated to take part in any of these activities, even though, if they did, they are likely to feel better.   There is again an important staff training component here in knowing how to get beyond a person saying ‘No’ to every suggestion and finding the right carrots to encourage someone to get more involved.  For some individuals this might be the presence of a cat or dog, for others it might be the invitation from a handsome man or an attractive woman, and for others it might be a large glass of wine!  Knowledge of individuals is a critical part of finding what might help.    For some people with a clinical depression, carefully prescribed and monitored anti-depressant medication might be an important intervention, but it is never the whole solution.  

Let us hope that in the years to come, the big ‘D’ of ‘Depression’ in older people will be as talked about as its often unwanted companion, ‘Dementia’.   We can live well with a dementia, but it is very hard to live well with depression if it is left unrecognised and untreated.

Further resources

Dealing with Depression Guide

https://independent-age-assets.s3.eu-west-1.amazonaws.com/s3fs-public/2020-10/Advice-Guide_Dealing-with-depression_2020_0.pdf?VersionId=vxhoM8Loi5fGpK482Ii

A range of resources available from the Canadian Coalition for Seniors’ Mental Health:

A range of contacts and resources from Beyond Blue in Australia:

https://www.beyondblue.org.au/who-does-it-affect/older-people

NHS self-assessment for depression

https://www.nhs.uk/mental-health/conditions/clinical-depression/overview/

British Geriatrics Society and Royal College of Psychiatrists Study

https://www.bgs.org.uk/sites/default/files/content/attachment/2018-09-12/Depression%20among%20older%20people%20living%20in%20care%20homes%20report%202018.pdf

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From the interaction between the stimulation of our senses, thoughts, emotions, physical sexual response, climax, we could think of the process as different players in the orchestra, under the leadership of the conductor, the brain. Although the brain needs to be fairly functional to engage with sex, alone or with another, it doesn’t have to function perfectly. And because our sex impulse is deeply hardwired as we said before, our memory about it may remain relatively intact.  Equally, we may forget about sexual thoughts and behaviour all together or may forget how to relate and to whom.

Interestingly, the hippocampus, which is folded deep into the centre of the brain along with the limbic system and amygdala is associated with our oldest evolutionary brain and prepares us for the fight and flight response to stress and attack, along with other emotions. The limbic system also steers us away from painful events and towards the pleasurable ones, including sex.

SO, is it any wonder, that when life doesn’t hold too many fun and pleasurable experiences, our thoughts and feelings may turn to sex? Masturbation, sexual intercourse, fondling and any type of sex we have enjoyed in the past can be a welcome comfort and distraction when we are facing many losses and changes.

Sex hormones like oestrogen, progesterone and testosterone are key in healthy sex lives. Testosterone is involved with lots of other things as well as sex. It is also responsible for erections that may not have a connection with the man wanting to have sex. It is just how it is wired into the body – that biological imperative thing. This may help us to respond differently to a man living with a dementia who may have forgotten that erections can occur unbidden and unannounced. This could create a ‘miscue’ that sexual action is now required. It could alert a care worker or family caregiver that something ‘inappropriate’ is happening or about to happen.

Being informed, we can be sensitive as we support a man’s need for privacy and not to call attention to him causing embarrassment and making him vulnerable. Misunderstanding can create stereotyping and labelling of what is natural yet, unpredictable behaviour.

The brain also has a role in what is called disinhibition, which is a lowering of sexual and social defences which the front part of the brain controls – the frontal cortex. As a result of a dementia, or trauma, extreme pain or a tumour, a person can become disinhibited. Socially, we can also ‘lose our inhibitions’ through excessive drugs and alcohol.

We can also learn how to switch off our desires, thoughts and feelings so that we behave appropriately in social situations. Pick’s disease, a rare form of frontal dementia can result in dramatic personality changes, and in people saying aloud, what they are thinking without realising that it will be offensive, overtly sexual or upsetting to those hearing it.

Because it is out of the realm of awareness of the person with as dementia, those supporting the individual must do their best to safeguard others in the vicinity, but also support the individual by ensuring that they are not vulnerable to abuse or further embarrassment.

Women can become equally disinhibited, and their innermost sexual longings and behaviour set free. These deep seated and fundamental sexual behaviours will also remain when a cultural, social or religious role concerning sexuality has been forgotten.

The uninhibited person and their sexuality may emerge, including those who may have lived a private life that did not bear any resemblance to the one that they lived in public view. This could mean that a person behaves sexually from a lesbian, gay, bisexual or transsexual authentic sexual self that has previously been hidden. It may also lead back in long term memory to incidents of abuse, as victim or perpetrator, or to other partners and affairs outside of the recognised partnership.

Danuta Lipinska is a Specialist in Ageing and Dementia Care and the Author of ‘Dementia, Sex and Wellbeing – a Person-Centred Guide for People with Dementia, Their Partners, Caregivers and Professionals’, Jessica Kingsley Publishers, 2018

This blog is an extract from a Webinar delivered by Danuta to Dementia South Africa in March 2021

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One was when I was visiting a care home and met a daughter in one of the hallways.  She was telling me about her father, who had been an actor and was a larger-than-life character in the home. She said in quite a matter-of-fact way that her mother liked to visit him on Tuesdays and his mistress, Patricia usually came on Fridays. He had had an open marriage for many years and both women were extremely important to him.  Whilst the women were not friends, they had come to accept the situation.  His daughter then told me that she was worried that some people might judge her father for his ‘infidelity’.  This story perfectly illustrates how we can never make any assumptions about someone’s personal history. Sometimes, it is easy to forget that the 90-year-old man or woman, now very dependent on us for all aspects of care has been a passionate lover and has experienced as many of the joys, complications and heartbreaks of romance as any of us have.  

The other example was when I received a phone call from a manager in a care home, where I had been running Butterfly training sessions.  She asked me if I had a ‘risk assessment for a vibrator for a 101-year-old woman’ they were supporting.  Interestingly, the woman’s age particularly jumped out at me, and my initial response was “Wow, that’s quite an age to still be enjoying sexual experiences!”  Later, I challenged myself about why her age even came into my reaction.  It makes absolute sense that someone coming to the end of their life might find the escapist sensation of masturbation something that is both comforting and enlivening.  Masturbation is a big taboo topic for many, especially as in some religions it is considered a sin.  Yet we know that some people living with dementia lose some of their inhibitions and are more likely to masturbate more openly.   My second response was to consider why we might need a risk assessment for something so personal?  When discussing this with the manager, I realised we did owe a duty of care to ensure that we thought about any potential harm of using a sex toy, how it would be cleaned, whether any lubricant would be needed, who would know about it etc.    The way in which we wrote the risk assessment was aimed to be very respectful of the woman’s privacy and independence, whilst acknowledging it was something which we did need to think about in relation to her safety and wellbeing.

Both these examples illustrate how important it is for those working in care settings to be open minded.  Is it ageism that somehow prevents us from seeing this part of older people’s lives as it confronts our own sense of mortality?  Even if we are no longer in a sexual relationship, many of us would consider ourselves sexual and sensual beings as we have a relationship with our own bodies which is integral to our sense of self.

What are the ways in which we can open up more conversations about sexuality and intimacy and to confront our own stereotypes and taboos?  Truly person-centred care means always keeping an open mind.

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