Dementia – Sparklystar55

Is this the world we created….?

May 29, 2017 clcopeland

I’ve been asked to talk at a Masterclass on Design for Dementia and Ageing at Stirling University this week. The brief is 10mins on the environment, dementia and acute care. The focus is on the real world aspect rather than reams of data.

So what do we mean by the environment? Type that into Google and you get this:

’the surroundings or conditions in which a person, animal, plant lives or operates’

They often like to provide an example of how to use the word and given the subject matter this one really struck a cord:

‘survival in an often hostile environment’

That is exactly what coming into hospital is like for the person with dementia.

Now before I get into this some more I want to be clear from the start that the people working in hospitals do not deliberately create this nor do we go out our way to make it as horrible an experience as possible. That said you will frequently hear colleagues talk about how hospitals ‘break people’. Even in my recent visits to care homes staff would tell me about how residents would seem both cognitively and physically worse after an admission to hospital.

We know that people admitted to hospital are not there because of their dementia but due to conditions associated with it e.g. falls, hip fractures, chest infections, delirium etc. With that in mind hospitals are perfectly designed to deal with this array of illness. What it was never designed to do was be a place that met the needs of a cognitively impaired person.

Years ago I heard a talk that somewhat poured scorn on the notion of ‘artificial’ dementia friendly environments. At the time I could understand the frustration – how does a mock 1950s kitchen or living room help? If they’re well enough to be in a sensory garden should they not be at home recuperating/rehabbing….?

However people with dementia get sick just like everyone else. So when you need admitted with pneumonia or a fracture then I do think hospitals should do more. It is not the person’s responsibility to adapt to our broken systems and processes.

There is evidence that if we invest in the environment we can reduce length of stay, falls and violent/aggressive behaviours. Not to mention the positive effect it can have on staff caring for these people.

The evidence points towards simple, inexpensive measures having a big impact. Clear signage, quiet, well lit clinical areas. Ironically the move toward single rooms in new build hospitals has prompted discussion about resurrecting the Day Room as a place for social interaction.

Perhaps one of the biggest challenges is in creating an environment where families/carers are welcomed. If we are striving to have the person with dementia feel safe and secure then we need them. They very often point out things that we have become blind to ourselves.

So I would like to see the hostile environment of acute care become a place where the person with dementia thrives and not merely survives….

For more info:

https://www.kingsfund.org.uk/projects/enhancing-healing-environment/ehe-design-dementia

http://www.knowledge.scot.nhs.uk/media/CLT/ResourceUploads/4075017/19870707-ace6-4c5c-b3df-0556816f61fe.pdf

http://futurehospital.rcpjournal.org/content/2/1/63.full.pdf

http://dementia.stir.ac.uk/design/virtual-environments/virtual-hospital

Thanks to Janice McAllister (@janicemcalister) for providing some of the referneces

Dementia, education, Uncategorized

All that matters to me

May 1, 2017May 2, 2017 clcopeland

This week I was invited to talk to care home staff at Erskine. It was part of a series of talks to raise awareness about delirium, mobility issues in those with cognitive problems and dementia. In addition to these clinical talks were two from a relative and carer perspective. One was Tommy Whitelaw (@tommyNTour) talking about his mum Joan. The other was given by a family member of a current resident.

I must say when I saw that relatives were speaking I thought: ‘Wow! That’s quite a brave thing to do. I wonder how the staff will react?’

I’m all for putting my head above the parapet but not many others are. It can be incredibly difficult to hear feedback, no matter how constructive, without first putting it through a defensive filter.

That said I found what they had to say both incredibly moving and challenging. I don’t mean that critically either. When you work in your own tiny eco system of healthcare you can desensitise or even forgot how a simple turn of phrase can inadvertently upset a person. To hear that your mum is ‘too good’ for a care home after you’ve spent months anguishing over the decision can bring back feelings of guilt.

We were also reminded to take the time to remember that this person is a mum, a dad, a brother, or a sister. This person will never be a resident or a client to a family. They are people with stories and lives of their own.

It was these talks that had the greatest impact for me.

You see we talk a lot about being person centred but if feels like being in an echo chamber at times. What do I mean by that? Well, it tends to be people working in the health service talking about the need to be person centred. I rarely hear the patient or relative perspective in these meetings. It’s also started to feel a little competitive:

‘And the prize for person who talks the most about person centredness goes to…..’

I personally feel that it you were you wouldn’t feel the need to go on about it so much. You would just be.

So what makes the difference then? Tommy and I spoke about some of the people he’s met over the past few years. It’s quite a list although I got the impression that those who have affected him the most are those on the ground, so to speak. For all the pledges and promises of funding from on high it seems to get stuck on the way down to those who need it most.

As Tommy said caring is not seen as a career to aspire to. Even those working in the care home sector will struggle to get access to adequate training and education.

We have created this culture so we alone are responsible for changing it. I don’t want to hear people talking about what they should do. I want to see them actually doing something!

I’ve always been a believer in the concept of small steps of change. You are however investing time and effort in a very distant future so it does require patience.

Looking around the room after Tommy spoke and seeing many in tears, it was clear that a difference had been made. And that’s all that matters……

Dementia, Uncategorized

Don’t you (forget about me)

September 26, 2016 clcopeland

This week I visited Erskine Care Home where my former colleague Derek Barron (@dtbarron) is now Director of Care. Janice McAlister, Dementia Nurse Consultant Ayrshire & Arran (@janicemcalister) also came along for a catch up and look around. To be honest the promise of cake was an offer to good to refuse…

The main reason for the visit was to chat about staff education with a focus on dementia and delirium.

I’m not sure what the public perception of care homes is but I had very little clue about them until my Registrar training in 2005. At the time we were supposed to go out on domiciliary visits with Consultants, minor problem was that no one was doing them anymore. An interesting development some 10 years later is the emergence of ‘Hospital at Home’ and other parallel rehab/ assessment at home services. Change never stops I suppose….

I had always thought of care homes being filled with people with complex medical and nursing problems e.g. stroke, dementia, Parkinson’s Disease. Frail people.

I also made assumptions that the staff caring for them would know all about their medical history and why they were on certain drugs. Somewhat naively I thought that each resident’s GP would visit on a regular basis.

Now I don’t want people to misunderstand or misinterpret this as a criticism as people were doing the best they could. However the staffing levels and the lack of regular medical input was something that both shocked and baffled me.

So I decided to spend time with a group of GP’s who took over a cluster of care homes in Glasgow. It was hands down the most enlightening experience of my entire Registrar training. I saw first hand the care and dedication of the staff looking after the residents. However the volume of work was huge. The most challenging aspect was in caring for those with cognitive disorders.

In 2013 The Alzhiemer’s Society published a report that indicated that ~80% of people in care homes have dementia or some kind of memory problem (1). This is a significant rise from the previously cited 44% in 2009 in the BUPA report (2).

What is poorly understood is the prevalence of delirium as a complicating factor. Some studies have quoted 8 – 15%. One study however quoted 39.7% as having sub-syndromal and 6.5% having full delirium on admission to nursing home (3). That last statistic really resonated with me. One of the difficulties in recognising delirium in a care home setting is that the tools previously available are actually quite complicated and time consuming. Plus there is little to no training available.

More recently I spent some time visiting care homes in Ayrshire to talk to staff about delirium. I needn’t have bothered in some respects. They knew all about it. What was frustrating though was that they had little in the way of training to articulate the problem or tools to help support the management of it.

There have been attempts to produce resources for care homes – PitStop looks at how (4)

the-individual-components-of-stop-delirium-png

Going back to the Alzhiemer’s report it’s interesting to note that 44% of people considered the training available to staff as an important reason in choosing a care home.

So with this in mind I would like to suggest we have much more robust training and education available to care home staff. Not only will it help in the care of the people in the homes it may actually drive recruitment in this area. Something that if you read the report published by Independent Age (5) is going to be crucial for the future…

References:

https://www.alzheimers.org.uk/site/scripts/news_article.php?newsID=1498
http://www.cpa.org.uk/information/reviews/changingroleofcarehomes.pdf
Von Guntena & Mosimann 2010 Swiss Medical Weekly
http://ageing.oxfordjournals.org/content/early/2016/05/19/
ageing.afw091.full.pdf
https://www.independentage.org

Dementia, Uncategorized

You better think…..

July 25, 2016 clcopeland

First week back at work. Holidays have the peculiar effect of feeling like you’ve been away for ages but also never left. There’s the inevitable gazzilion emails to wade your way trough. Unless of course you set it to auto delete but I gather that’s frowned upon now….

It’s been quite a full on week that started with a presentation at a conference for care home staff on delirium and dementia. Delirium is something I’m particularly passionate about it so it was fantastic to be talking with people who play such a vital role in their care.

Delirium can be a devastating illness that can affect anyone of any age however it affects older people more commonly.

At the start of any presentation I always start with the think-delirium same question: ‘What does delirium mean to you?’ So it was with total dismay and frustration that to area of the media delirium would appear to mean criminal behaviour.

The headline ‘Over-75s perpetrators of NHS assaults’ immediately conjures up images of staff being assaulted in a deliberate act of violence by old people.

http://www.bbc.co.uk/news/health-36829120

The language used to describe the fear and distress of older people without once mentioning the word delirium was particularly upsetting. There are people out there trying to make a difference, educate and change perceptions. An excellent blog written in response to this was by a Geriatric Registrar Dr James Woods (@jmwoods87)

https://britishgeriatricssociety.wordpress.com/2016/07/21/challenging-the-depiction-of-delirium-in-the-media/

One of the ways I try to challenge people in their attitude and behaviour is to talk about ‘Jimmy’. Jimmy is a fictional person but his story is a fairly typical account of the people we see with delirium. I take them through what may’ve caused his delirium and its subsequent effects. I then pause and put up pictures of crying babies. The story is repeated word for word only this time Jimmy is 9 months old. He is frightened. He is distressed. He is alone.

What do we think about Jimmy’s behaviour now? Do we repeatedly tell him to be quiet? Do we tell him to stop moving around? Do as many as 30 different people meet Jimmy but not explain who they are? Do we keep his favourite toy/security blanket from him?

What do you do instinctively for your child and why do we forget the fundamental basics when looking after an older person with delirium?

And l ooking after a person with delirium should be instinctive. It’s common sense and it shouldn’t be that hard.

Going into my on call on Wednesday I knew that the vast majority of the older people I would see would have delirium. I also knew that the families and carers of these people would be extremely worried and stressed about their loved one.

I’m a big fan of open hours for visiting as it’s an opportunity to talk to families and hopefully, to a chance to reassure them. At the very least I try to be as honest as I can. That can be tough though. Sometimes you are the emotional punchbag for a lifetime of family dysfunction and issues that have absolutely nothing to do with you. You just happen to be the person who appeared in that moment of crisis.

As cliched as it may be I honestly think the best thing to do is just listen. After that, give the best care you can. Part of that can be to remind people that ‘bed 6’ has a name or to ask them to pause a minute to think about how they might feel if their mum/dad/husband etc was admitted – what would you want for them?

So it seems crazy to me that we have to teach or even remind people of this. When did we stop doing this?

Kate Granger died today. She spent the later part of her life reminding people of this very thing. The work she did in this was nothing short of amazing but it saddens me that there was a need to do it in the first place.