Monday 24 November 2014

A helping hand

When a loved one is living with dementia, it is inevitable that a time will come when they will need additional help and support. A person with dementia may be very resistant to any intervention from any individual, and who could blame them - 'help', however well-meaning, often results in taking over from the person with dementia and can be very disempowering, especially for a previously very independent person. Alternatively your loved one may be willing to accept help, but only want it from a particular person, which can put a huge strain on one individual.

Overcoming problems around how to provide help and support, and especially difficulties completing essential tasks like washing, dressing, eating etc, is something that huge numbers of family carers struggle with, and can even baffle professional care workers. If time is short, and the individual living with dementia is determined that what the person who is supporting them feels needs to happen isn't going to happen, it can become a very frustrating battleground for everyone.

Alleviating those tensions can be difficult. As one family carer said to me after reading my 'Troubleshooting Checklist' blog post: "How do you cope when someone is unwilling or unable to cooperate with these tasks? Our routine gets harder every day." The advice I gave that person is the inspiration behind this blog post, largely because I know from the correspondence and conversations I have had that that person is far from alone in experiencing these problems.

There are lots of things you can do to try and improve the communication and mutual understanding needed to avoid battleground situations over every day necessities. Lots of carers – be they family carers or professional care workers - often get locked into a very task-based day, and naturally take over doing tasks even when the person with dementia may be able to do some or all of these things themselves. I was guilty of this with my dad in the early years of his dementia - it is an incredibly easy pattern to fall into.

Often it's just quicker and easier to do things for a person than support them to be independent. However, for anyone, and particularly a very independent person, this could be like red-rag to a bull. Put yourself in the shoes of the person with dementia - looking at it from their perspective it seems very controlling and disempowering for you to just take over. 

Maintaining skills is a difficult balancing act. If a person is going to put themselves in danger or do something wholly inappropriate then some measure of intervention will be needed. Judging that measure, however, can only come from understanding the individual - through communication, body language, previous history, observation etc - anything that tells you what their capabilities are and where the points are that you may need to intervene. 

Of course dementia is a constantly changing landscape, and abilities and the motivation to do things will fluctuate and most likely decline over months and years. The frustration the person with dementia is likely to be feeling during this decline cannot be overestimated, and any intervention you make needs to be very sensitively handled. There may be specific trigger points when you and the person you are supporting upset each other. It might be helpful for you to note these and see if a pattern emerges.

Once you've worked out what is triggering times of discord, you may be able to identify factors that you can change. For example, the environment you are in may be contributing to difficulties. A particular room, object, or sensory experience could be a problem. The routine you are using may also be problematic, even if it's a routine that has been in place for a long time. Or the problems may be down to a breakdown in communication.

An example to illustrate this:

You are helping a loved one to dress. Your loved one has always got dressed in the bathroom after their morning wash. Your loved one is now resistant to dressing but is struggling to communicate why in a way that you can understand. Examples of possible problems include:

1)    Looking at the bath/shower, your loved one is associating the bathroom with getting undressed for washing – they simply cannot understand why you would want them to put clothes on, rather than take them off.

2)    Your loved one doesn't recall having a wash so cannot understand why clothes should be going back on.

3)    Your loved one opened their bowels prior to having their wash, there is a lingering smell and they don't want to dress because the smell is suggesting to them that they need to wash.

4)    They haven’t completed their pre-dressing regime in the way that they would want to – IE: don’t feel dry enough, want to apply a body lotion, or would like to do their hair or make up before getting dressed.

5)    In your small bathroom there isn't enough room for you and your loved one to manoeuvre to help them get dressed, this is making the space claustrophobic, possibly too hot, and you are getting in each other's way, causing mutual frustration.

All of the problems described above are centred around association and memory. The environment you are in is causing a negative association. Try changing the established routine and moving to another room to dress – ensuring that room is warm enough. The bedroom, with an open wardrobe and different outfits to choose may help to demonstrate that it's time to get dressed.
Of course the above is just one example – I could write up many, many more – every individual situation is going to be slightly different and require a different approach. However, a general checklist for multiple situations would include (in no particular order):

1)    Think about the room(s) where you are trying to help the person (do they feel safe/comfortable?).

2)    Don't ignore sensory barriers - noise can cause confusion, smells and the visual landscape can give mixed messages.

3)    Experiment with routine if the current one is not working.

4)    Be mindful of timing - the time you chose to do something may not be the time that the person you are supporting wants to do it. If schedule is vitally important, try to agree the schedule together and have a dementia friendly clock to help orientate the person and avoid conflict over what time it is.

5)    How much are you involving the person in tasks - would they like to/could they do more? Or would they like something done differently?

6)    Think about how you are communicating - is it appropriate, can it be understood, do you need to change how you are communicating?

7)    Use clear clues to indicate what the person needs to be concentrating on - IE: open the wardrobe to choose clothes to wear, set the table before a meal, take towels and washing products to the bathroom in readiness for a bath/shower, collect up coats, hats and shoes ready to go out.

8)    Think about how you are helping the person, are there any particular trigger points for upset (observe/document and you may see a pattern emerge that you can change).

9)    If someone else is available to help (another family member, friend, care worker etc), find out from the person with dementia what their preferences are. Also consider if you need extra help in certain situations (help with moving and handing etc), and if certain tasks should be completed by someone else while you take a back seat. Be particularly mindful of cross-gender issues, dignity and privacy.

10) Remember that what needs to be done (like getting dressed) doesn't exist in isolation from other things. For example, feeling unwell, being in pain etc are going to have a huge bearing on how someone concentrates on what needs to be done, their willingness to help, and the movement and mobility they have. A person with dementia may not be able to articulate how other illnesses or pain are affecting them, so as a carer you need to be a bit of a detective.

Taking the person-centred, holistic approach described above should help to alleviate most issues around offering help and support to a person with dementia, but like everything in dementia care there are no guarantees and the role of a carer is likely to be constant trial and error. As ever, patience and empathy are vital. I'm not sure it ever gets easier, but what I can say is that with time you become more perceptive and an infinitely more effective detective.
Until next time...
Beth x

You can follow me on Twitter: @bethyb1886


Monday 10 November 2014

£55 to diagnose dementia

When the headlines first broke that GP's in England are to be paid £55 to diagnose dementia, I have to admit I wasn't surprised. Improving diagnosis rates has been the number one target since the 2009 National Dementia Strategy, and it came under the microscope again in the 2012 Prime Minister’s Challenge on Dementia. Yet, despite making diagnosis the cornerstone of English dementia policy, diagnosis rates haven't improved to the desired level.

In policy terms it's a small step to start offering financial incentives to diagnose, but in human terms it is a massive leap. It puts a value upon a diagnosis of dementia that simply doesn't exist if the clinician diagnoses another condition. It tarnishes good sound clinical judgement with the promise of payment, and it poses significant ethical and moral dilemmas.

Granted it's not a huge payment, it is made to the practice rather than the individual GP, it's optional not mandatory, and it is a relatively short-term scheme that will only last 6 months. Just think about the last part of that sentence though: why is a dementia diagnosis more valuable in the next six months than at any time before or after that? Could it be something to do with targets?

This is where we get into really tricky waters, because you and I and anyone visiting their GP doesn't see themselves as a target - just a citizen needing the help and advice of their doctor. The doctor/patient relationship is one bound by trust, and like any relationship, if the trust is lost then a breakdown of that relationship becomes inevitable.

Such a breakdown could have many significant and long-lasting consequences, not least that a person may seek to avoid seeing their GP, or any healthcare professional, about other problems that could have serious, possibly even fatal consequences in the future. Every patient needs to be able to trust in their doctor to reach a judgement about their symptoms based on the best available evidence, having availed themselves of all necessary diagnostic tools and tests, and in a holistic way that puts the patient at the centre of a multidisciplinary team. 

Even if a GP does all of that, we know that diagnosing dementia isn't an exact art. There are numerous different types of dementia, each one presenting itself differently, and diagnostic procedures (although greatly advanced) are not completely accurate. There are also other conditions, such as depression and delirium that can look remarkably similar to dementia.

Assuming an accurate diagnosis can be made, for many people there is little, if any, post-diagnostic support. You may be offered some medication, but dementia drugs aren't suitable for a lot of people (they weren’t suitable for my dad), although it is perhaps very suitable for the manufacturers of these medications that prescribers are going to be paid to diagnose more potential candidates for them.

Of course incentivising GP's to offer particular services isn't new, and the argument behind this payment is that it will enable practices to pay for the extra time and work involved in making a diagnosis. But I know that if I went to my GP and I was diagnosed with something that I'd seen headlines telling me they were being paid to diagnose me with, I would be unlikely to trust that diagnosis or that GP.

The money set aside for this payment scheme is £5m, which although it may sound a lot, in terms of overall health service spending it is relatively low. Sadly it doesn't allow me much creativity to think about how I'd like to spend it if I was the person making the decisions about dementia policy, but with due artistic licence, I’d like to suggest the following:  
  • Invest in training that enables doctors to do what their profession is meant to do - use sound clinical judgement to make a diagnosis (and be just as confident about not diagnosing something because you aren't being beaten over the head to steer your diagnosis in a particular direction). The quality of each individual diagnosis should always be more important than the quantity of diagnoses being made. 
  • Invest in post-diagnostic support. Models of positive support, that genuinely enable people to live well, are vital to tell the public that you can expect to live a good life after a diagnosis. Forget the promised land of cures or life-changing treatments for a moment, if you can't even offer your patient hope that they can live a life that supports them in the ways that they want to be supported then as a country we are failing big time. Good quality support doesn't make headlines - it isn't a major breakthrough in a lab or an eye-catching policy. It is most likely to involve human interaction and specialised social care – the latter of which is expensive in terms of well trained professional personnel, hence why it isn’t invested in.
So instead we focus on diagnosis. The quicker and easier it can be done the happier everyone will be, or will they? I would be the first to argue that anyone who is having troubling symptoms and seeks help should be given every available method of help to accurately uncover what is causing their symptoms. But is a higher diagnosis rate really a mark of a compassionate, supportive society that sets the benchmark for the world in how to care for people with dementia?
I'm not convinced it is. For me the benchmark is in how well each person currently diagnosed with dementia is living, and the confidence anyone with troubling symptoms has about coming forward to find out what is causing their symptoms. I would suggest that adding a financial reward into that diagnostic process will only make the undiagnosed person more sceptical, less likely to come forward and, should they really have dementia, less likely to accept that diagnosis, leading to them potentially experiencing other mental health problems.
I would also suggest that it lays vulnerable older people, especially people in care homes, open to being labelled without a robust diagnostic process, mostly because they could be seen as an easy target, particularly if they don't have a family to advocate for them. Making a diagnosis of any condition is about integrity, and above all else, putting the person first.

Because after all we are people, not targets.
Until next time...
Beth x

You can follow me on Twitter: @bethyb1886