Trinny and Susannah

The urge to make reference to dodgy populist makeover shows and super nanny shows on telly has finally overcome my fear of embarrassment at admitting to watching them. And so I now have let you know that I do believe that Trinny and Susannah hold the key to the future of dementia care.

At the back end of last year I was gripped by the weekly episode of ‘Trinny and Susannah Undress’. Each week they would move in with a couple where one or both were still dressing in the 80’s, or giving up on their appearance and giving way to expanding waistlines and life in Jogging bottoms.

Now I’m certainly no fashion guru (ask my wife) but I thought a lot of the couples had quite some style. However, what fascinated me was the fact that Trinny and Susannah dared to delve to the heart of the relationship between the couple. The shopping for new outfits was almost a side issue as they would ask intimate questions about the couple’s relationship.

They probed into how and why the couple have stayed together and at what first attracted them to each other. They looked too at what couples were feeling about each other now and at what had changed in their relationship (often children and jobs got priority over looking after their own relationship, a sense of identity and self esteem had gone or drastically reduced).

Each week they got to the heart of the relationship, helped couples rekindle the old spark and remind them that being together happily was still possible even with the challenges life was constantly throwing at them and everyone. The show would culminate in the couple literally standing naked in front of each other (behind a screen of course). I was amazed each week at how Trinny and Susannah could persuade the couple to do this. It was clearly as a result of them daring to broach certain subjects and getting a positive response – they were dealing with people who were truly relieved that they were being helped to focus on awkward topics.

I hope you are still with me on this. Ask yourselves what exactly do we see each week in our work? Do we not wince when we visit couples who are constantly at each others’ throats because one doesn’t understand the behaviour of the other? I regularly see people questioning the validity of decades of marriage because they can’t understand why their partner is rounding on them. What do we do about it? We separate people. We send one off to respite or day care or into hospital for assessment. Then we send people back together equally ill-equipped to cope with the same unattended antagonisms. We resign ourselves to the fact that nothing can be done about a couple whom we perceive to be ‘always fighting’. This then becomes a self-fulfilling prophecy. I have studied and tried out a relationship-centred approach to care and I have shared my findings in the Journal of Dementia Care (Murphy 2006). I found, as did Trinny and Susannah, that people want to talk about what’s important to them. It gets results. People are helped to focus on why they are together and they can be united against the dementia. They are relieved to broach subjects together as a couple in a safe environment (much less public than on national television!).

So like Trinny and Susannah, all front line workers in dementia care need to be equipped to carry out relationship-centred work, to broach subjects that to some may seem awkward. Otherwise we remain with the tea and sympathy approach and the usual crop of services. We have constant contact with people with dementia and their carers so we need to enhance the quality of that contact. Far too often I found myself in somebody’s house, seeing a couple struggle living together with dementia, witnessing personal detractions (usually with no ill-intent) and pointless argument. I was usually there for another reason and usually had another appointment 10 minutes later. So the matter could not be addressed and the couple would carry on in this spiral of mutual self-destruction.

People with dementia and their carers can live with dementia rather than suffer from it. We need to be aware of the change in dynamic of a relationship that occurs with the presence of an illness in the family. For too long now dementia care has tended to focus on the individual (person with dementia or carer) and their unique set of problems rather than the family system and how it has adapted to whatever illness is present. The recent push for early diagnosis gathers pace while innovative service provision to match that still lags behind and a lot of usual offerings tend perpetuate the separatist approach. To explain, let me tell you of another telly programme I love.

The House of Tiny Tearaways’ is one of those super nanny programmes where child psychologist expert professor Whatsername works with families with ‘problem’ toddlers. They live together for a week and talk about the whole family system and about the feelings of every member. Everyone is included and specific strategies are tried out.

It always makes me laugh because I immediately think of how these families would be dealt with by the current dementia care model. The child would be sent away for a couple of weeks to a home so parents could have a break. No work would be carried out with anybody and they would be expected to cope better once the child returned.

Adopting such a model in children’s services would rightly cause a national outcry. Why, then, do we tolerate this in older people’s services? Are we content to allow the gaps between respite shorten every time until long term care ensues or can we act to equip families to live with dementia longer in the community?

How about improving the mental well-being of people with dementia and their carers to enable and equip them to live together with dementia?

How about breaking the taboo that ‘dementia’ or ‘Alzheimer’s’ is in our psyche?

How about including people with dementia in all aspects of their assessment, diagnosis and care?

How about promoting awareness of the fact that dementia is eminently ‘liveable-with’.

A leaf out of Trinny and Susannah’s book would be a great place to start. Now I’m just off out to buy a pair of crimplene slacks I’ve spotted – they’ll make me look HOT.

References:

Murphy D. (2006) Relationship-centred work with couples. Journal of Dementia Care 14(1) 35-37

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The 1974 Holland team and JOHANN CRUYFF hold the key to better care

Whenever speaking with care teams in whatever sector – community, acute or long term we are often examining how to improve care and I always get the three usual suspects of  ‘solution’ – More Time – More Staff – More Money.

Unfortunately in the current climate none of these are going to materialise. they are clearly elements that have an impact upon how we operate, but because they will not in the vast majority of cases be supplied, we have to re-visit how we operate. Do we just work harder and faster at what we do? Of course not. Speaking to any care staff they are all shattered and working to capacity already.

When one day I said you have to be like Johann Cruyff I got a lot of blank looks. I then went on about how fantastic they were in the 1974 world cup and how they were robbed in the final by West Germany thanks to a dodgy referee decision by Jack Taylor a Wolverhampton butcher. – It was great reminiscence for me but the point i tried to make was that Cruyff was free to express himself in his role and in fact every player was capable of playing in any position on the pitch. Everyone was able to do everyone else’s job so – in response to the question about never having enough staff  ( I can see you’re ahead of me here) – although they had the same number of player as the opposition it looked as though Holland  had more players on the pitch – It then got us looking at a greater flexibility in our roles; about operating more smartly, about adapting job descriptions if necessary to give the ‘jobs worths’ license too; about shifting the work load to match peak periods of business; of supporting each other, building in an informal culture of reflective practice. We looked at making better use of the staff grapevine ( unsurpassable in its efficiency when there is a bit of juicy gossip) in order to share magic moments, learning points, questions much more efficiently. And of course we looked at matching what was on the agenda of those people with dementia using our services rather than making them fit into the bog standard current offer – So, to carry on the metaphor it is the person who is pulling the strings in the middle of the park – the midfield general, the maestro – the Johann Cruyff.

Damian.

memoirs of a hospital advocate

Memoirs of a hospital advocate

As an independent advocate for people with dementia in an acute hospital setting I was the bloke with the awkward questions.who’d turn up on the ward and all staff would dive out of the way . that was 13 years ago.  Only recently are the needs of people with dementia in hospital being acknowledged. Yet still the culture of blame and negativity prevails. It’s the people with dementia still ‘blocking the beds’ (perish the thought that they should ever have any acute medical needs too!)

What follows is a short extract from my experiences and the experiences of the people I came across. I am convinced we still have a long way to go. Why? Because on my nursing course all I remember was a brief session on older people with the message that they might get blue on their extremities in the winter. Nursing and social work curricula still have little more than an hour for students who then go to have jobs in this field. The reality of acute hospital care is still older people and we are still equally ill-equipped to respond to their needs.

 

Rights.

 

Article Two of the Act talks of the right to life. I worked on the definition of life with ward teams. A lack of stimulation, the constant moving, the situation of so many so-called bed-blockers was surely no existence. I remember Bob the Welsh poet who was such a gentleman. His poetry increased with his dysphasia until only “scrambled eggs” -as his niece put it – came out. They were delivered with such an appropriate tone and bright eyes that he was easy to converse with. He was stuck in hospital, and although ‘medically fit for discharge’, he died. He became progressively more dispirited and shabby, left to spill yoghurt in a sticky mess, unshaven and never with his glasses. He coped for a while but faded away, denied life and banished to a pyjama-clad limbo for six months. Article Three of the Human Rights Act mentions torture and degrading treatment. I remember Mary whose bowel habits were broadcast across the ward, and who was blamed for having dementia (‘You did that on purpose’) and shouted at for being deaf.

 

That’s Life

On the hospital ward I paid great attention to detailing verbatim accounts of what some people with dementia have said to me. I stress on the wards that spending a short amount of time upon admission, gaining trust and providing reassurance to that patient will save time further down the line.

“Where are my people? Where is that special person? What has become of me?” These words were spoken by Ethel, who had been stuck on a ward waiting placement in long stay care. Stripped of all she had, she was not after food or water but rather human love and a sense of belonging. Care plans on the ward revealed the need to maintain hygiene, push fluids and toilet regularly. What Ethel in fact wanted was to have an impact on the world around her, to know she still existed and mattered. She was giving us the meaning of the “Essence of Care” –(now there’s a blast from the past!). There had to be recognition on the ward that every intervention was an opportunity to communicate and interact – an opportunity to let Ethel know she had an impact on the world around her. The Help the Aged “Dignity on the Ward Campaign” pocket guide for Hospital staff (2000) summed this idea up perfectly with a quote from a daughter about her father’s care.

 

“The staff made all the difference, everyone including the domestic staff took time to speak to my father and to see he had enough to drink and eat. He was awful at times and said terrible things without realising it…I felt that we were all in it together even though there wasn’t a huge amount we could do… but the attention to detail and to small things made all the difference, I’m sure of that”.

The above case shows how important it is to take the lead from the person. Entering into that relationship helps staff see beyond the shell of a broken body to the real essence of the person beneath..

 

 

I was at one particular case conference, which was opened by the social worker saying “Pat, you have no friends, you cannot cope at home so I’ve put you down for placement”. This meeting immediately degenerated as Pat quite rightly reacted to such a damning statement. Other meetings have taken place where it appears a decision about a person’s future has already been made. Staff were worried about discharging Helen home after a fall, for fear of a swift readmission and an accusation of unsafe discharge being brought against them. Helen herself had no interest in suing – she just wanted to be at home with her cat. Maggie was determined to return home after a fall, especially when she heard placement could take months. Staff had assumed she would stay in until placement could be arranged, hoping that her poor memory would mean she would not mind. Spending time with Maggie revealed she felt she had been “conned” into staying in hospital, especially over Christmas, which was a devastating blow. She spoke about risk and the fact that anyone could be run over by a bus tomorrow and that she deserved to have that right, to have that life giving experience of being back at home. The hopes and desires of Pat, Helen and Maggie at one point or other were completely taken out of the equation when their respective discharges came up for discussion. For all three of the above cases subsequent meetings were held, thus delaying discharge further -in one case by up to two months. Once again, simply communicating with the person shed light onto affairs, regardless of whether that person’s wishes could be fulfilled. There are still so many delays because we don’t start discharge processes prior to admission. I still hear of social work referrals being made to soon.

The Impaired Person’s Perspective

Just as I did 13 years ago I still find myself  pointing out the need for detective work to find out why someone acts in a particular way -is it because they don’t like something they’ve been given? Is it because it is they are hot and uncomfortable? Is it because they are afraid of being incontinent? Is it because they are depressed and frightened? Is it because they are woken with a start and lash out in fear? It is also vitally important for staff to put themselves in the position of someone who is waking up to find a complete stranger trying to take their clothes off. How would they react? Far too often the result is the label of an aggressive patient and an even greater distance being created between patient and staff leading to further disengagement of the person with dementia. In fact this group requires more intervention to reinforce the fact that they still exist and have an impact on the world around them. What we still have is this self-fulfilling prophecy of people labelled as aggressive, non-compliant,

Attitudes and Beliefs

The culture and attitude I’m afraid has scarcely changed over the years; some of the following might ring familiar

 

There was Emily who shouted for the toilet only for the nurse to come into her room, stand right over her and tell her off for shouting when she should use the buzzer. She then picked up Emily’s catheter bag and waved it in her face saying “you don’t need the toilet, you’re attached to this”.

There have been countless examples of talking over people’s heads and the very frequent, “Oh you did that on purpose” along with the degrading labels of “bed blocker”, “aggressive” and “non-compliant” – all of which put the blame on the person with dementia. I have also had calls from consultants to “get rid of them” and pleas of “but they should be somewhere else.”

Till today  the “somewhere else” does not exist so I tried to help wards take this on board – not to become specialist dementia care wards but rather to be confident to manage those patients who come their way.

The “Caring for Older People” report by the Standing Nursing & Midwifery Advisory Council (SNMAC 2001) highlighted the personal experiences of people in hospital and recommended better training and awareness of the needs of people with dementia. A starting point for this would be a basic ‘awareness of dementia in an acute setting’ programme for multi-disciplinary staff such as I ran at the time. At the start of the study day the overwhelming opinion was that “we have no time”. At the end of the day people went back to the wards with several ideas.

Conclusion

I remain convinced that we can work in a more proactive way. But progress is still painfully slow when we see the same old problems and limited joined up thinking. The standards of care of in-patients with a dementia as set out in the HAS 2000 report “Not Because they are Old”, The Help the Aged report “The Future of Hospital Care for Older People”, the SNMAC report, “Caring for older people” and, of course, the section dedicated to hospitalised older people in the National Service Framework are all over a decade old. The words of Professor Geoffrey Shepherd, the joint chief executive of the Health Advisory Service 2000 at that time seem eerily prophetic

“You can set standards ’til the cows come home – the issue is whether you can do

anything with them to improve services”

Prof. Geoffrey Shepherd – Joint Chief Executive of Health Advisory Service 2000

 

So many new initiatives and political drivers should not go the same way.

 

 

References:

Health Advisory Service 2000 (1998) “Not Because They Are Old”

Department of Health (2001), “Caring For Older People – A Nursing Priority” Standing Nursing & Midwifery Advisory Committee. DoH, London

Department of Health (2001), “The National Service Framework for Older People” DoH. London.

Help The Aged (2000) “Promoting Excellence In Care- Dignity On The Ward Campaign” HtA, London

 

El hijo de Veronica 

THE POWER OF THE POWERLESS

 

 

 

“When you look at me

You will measure me

by my awareness

by my response

by my age

by my development

And you will find me lacking

But for me you are measuring with the wrong cup.”

 

We had Dad home 14 months after a brain-damaging cardiac operation. He was long, lanky, stiff, sweating, dribbling, moaning, shouting, dumb, fenced in, isolated, perhaps frustrated, all-registering or non-registering, emoting or vegetating, aware or absent. We didn’t know what combination of the above. His cries, his shouts, his motionlessness, his stiffness, his awkward length, his wasted legs, wet pads, soiled sheets, his tube. This is how he presented – What would he know? – How could I communicate with him or relate to him?

 

We can look at that broken body and assume that nothing is registering. We can treat it as a tube to put things down and a bag to empty. We can say how hard-done-by we are with this heavy workload. We decide if they are to be our tragedies or our triumphs.

 

These are many of the doubts I had when Dad was spending his first night back home. Is there really anything we can do but to create a personal relationship with him? – through taking care of his physical well-being and chatting to a man who can’t speak back. Will he ever speak again? Will he ever gain any co-ordination in that spasm-ridden body? It seemed a far-off ideal to use his personal care as a way to relate and hope to get a response. I was convinced I was entering into a one-way relationship.

 

Whether he knew me from before I’ll never know, but very soon I came to realise that in no way would it turn out to be a one-way relationship – and not just because he was my Dad. It was stupid to do what I was going to do with Dad. He wasn’t going to get any better. He was never going to produce anything, he was never going to speak – perhaps never give anything to us – and that was the most difficult because people usually enter into a relationship to expect something out of it. My Mum had no problems – she was married to him. I felt detached. I’d been living away. I was claiming Carer’s Allowance. It was my job. But communication is the key to caring – and as I said, it let me into a completely new relationship. The smallest of tasks, the menial things become a gateway to the essence of the person.

 

So with all these fears of the unknown I went downstairs on the first day. The time alone, washing Dad was so surprisingly relaxing. I took it calmly, the only way I could. Dad alone was teaching me patience. His defencelessness was the strongest thing present in the room – his look, first startled then tearful, then resigned – His total handing himself over to me calmed me so. Every morning was like that. Dad was the centre of everything – a unifying factor. He provided a purpose. My only problem was living at home again after four years away.

 

My relationship with Dad grew immensely in such a short time. I’ll never forget the first time he laughed in 15 months as I clowned around behind a chair, putting his hat on. Every morning he greets me with a bright morning stare, portraying surprise at seeing me. Then there’s the joy at recognising a fixed stare of hope for the new day, of relief that the night is over and he can be made more comfy in his bed.

 

The times spent together were so profitable – washing, exercising, a walk out in the chair to buy the paper or go to the betting shop! And it got a response from Dad to see all the action in the street … there were his wide eyes, raised brows, pouted lips, the chewing mouth, the shrug of the left shoulder – all clues to his well-being and clear signs of interaction.

 

After a small time with Dad I came to know why everyone who came into contact with him after his op fell in love with him. I’m convinced he was even more gregarious in the 15 months after his op than the 59 years before. He had what I would call the power of the powerless – the capacity to seduce everyone around him. So as not to miss out on such relationships I believe we all have an obligation to let ourselves be seduced by those with whom we work.

 

 

“But for me you are measuring with the wrong cup.

So measure me if you must

But measure me, too, with my cup

And you will find me full”

                                                                                                                       

Niemann Pick Disease Group.

 

Other People

This was the answer given to me immediately by Richard when i asked a peer group of men living with dementia about their biggest complaint about dementia. Everyone around the table mentioned something other than the organic process going on in their brain. We are the problem – we can be the solution. Let’s get it sorted.

Open the doors – the wrong type of security

Good care homes are the exception rather than the rule and will ever be so until we ditch the asylum model of care. We were supposed to have closed the long term hospitals with the Community Care Act in 1992. It’s so ageist  and ‘dementia-ist’ to perpetuate this model for older people. The few good  homes are those who create  a sense of security within those people living at the heart of their home communities. Too many of the old guard cling terrified to the security of the keypad and locked door. Go on, do the real work needed, build that sense of belonging, engage and enter mutually nourishing relationships and unlock the doors. It works.