Monday 18 August 2014

A precious gift

I've often thought about what the most precious gift is that you could give a person with dementia in the absence of a cure. I've written before about the importance of love, but I suspect that if I asked a cross-section of people what they think the most precious gift would be, money would be a popular answer.

Unlimited funds would give the person with dementia the chance to do all of the things that they’ve wanted to do, the ultimate bucket list. Of course money can buy you many things – amazing experiences, expert care, a lavish lifestyle and the best of everything – but wealth of that magnitude is the preserve of a select few. Most of us don’t have vast sums to gift to others or have an inexhaustible stash of cash put aside to spend on ourselves.

In my view, giving your time is a more precious gift than money and it’s inclusive; we can all give our time to a person with dementia and it doesn't cost anything. Most people hugely underestimate the difference that can be made by giving their time, not realizing that it is a gift that forms the cornerstone of quality of life – without it every other attempt to enable a person to live well with dementia is likely to fail.

Many people have reported that when they were diagnosed with a type of dementia they went through a period of mourning the fact that dementia, being a terminal disease, is likely to cut their life short. Losing years off of your life is cruel in a way that words cannot do justice to, but perhaps even more cruel is being denied the time of those around you - people who may well outlive you and yet are not willing to give you the time of day. 

A simple 'Hello my name is' as epitomized by the fantastic campaign created by Dr Kate Granger is too much for some people to manage, and yet how long does such an introduction honestly take? In our lives we've become too busy to stop and realize the gift of time, and in care settings, we’ve become too task orientated, wanting to get those boxes ticked as speedily as possible.

Your time is such a great gift to give a person you are caring for because it enables so many other amazing things to happen:

  • It makes choice REAL. Giving a person with dementia time to choose between different outfits, foods, drinks, personal care options or things to do gives them ownership over what their day will be like. Rushing them because you don’t have time to allow them to think or express their thoughts takes away that choice. Giving them time also allows you to make suggestions if they are struggling with choices and support them in making their choice.

  • It enables communication. As a person’s dementia advances, they will need more time to communicate with you and to understand what you are trying to communicate to them. Not giving them your time is going to stifle that communication and they will lose their communication skills much more rapidly.

  • It deals with challenges. Dementia is tough to live with – anyone with dementia will tell you that. Not having the time of the people who are supporting you makes it a great deal more challenging because your memory recall will be rushed, you will struggle to follow what is happening around you, and you may begin to feel that things are happening to you, not with you. All of that leads to the common elements of ‘behaviour that challenges’. Being given more time to communicate, understand and participate means that your needs are more likely to be met.

  • It supports emotions. Bottling up emotions can only lead to emotional outbursts that fuel ‘behaviour that challenges’. Giving someone your time to express their fears, anger, sadness, frustration and bewilderment isn’t easy, but by doing that you are likely to also bring about the expression of more positive emotions; happiness, contentment, peace, hope and possibly even some cheeky fun. 

As a general rule, everything that feeds into person-centred care results from giving someone your time. Everything that contributes to ‘behaviour that challenges’ generally results from not giving a person your time. That is why giving your time is such a precious gift, and why I will never regret giving the countless hours of my teen and twenty-something years to my dad. Even when that time was spent in silence, it was time well spent.
Giving someone with dementia your time is a gift that gives something back. You will learn from the conversation that will be created, the body language that will be demonstrated or the experience you will have in that moment with that person. The majority of what I’ve learnt about dementia has come from giving my dad, and other people living with dementia, my time. In return they've given me what I share with you on this blog. If nothing else, I hope that inspires you to give someone you know who is living with dementia some of your time.

Until my next blog post...
Beth x

You can follow me on Twitter: @bethyb1886

Monday 4 August 2014

Getting to the heart of unmet needs

Interpreting what someone with advancing dementia needs can often feel like a bit of a guessing game. If the person with dementia is struggling to articulate their needs and wishes in a way that the intended recipient of their communication is used to, both individuals can be left feeling baffled by the ‘call’ and the ‘response’, or lack of it. The person with dementia becomes more frustrated as they struggle to articulate and can start to feel ignored, while the interpreter may be guessing what is needed, getting it wrong and causing more distress.

It is a situation that is often accompanied by the best of intentions on both sides and feelings of uselessness or guilt for one or both individuals at the breakdown of their understanding.  It’s usually neither person’s fault that they are misunderstanding, but the associated human emotions are likely to produce one of the most hotly discussed topics in dementia care: 'behaviour that challenges', otherwise know as 'challenging behaviour'.

In the above example, both parties are feeling challenged by the other, and both are potentially going to react badly. Shocking though the idea might be, those without dementia can be just as challenged and challenging to deal with as the person with dementia, so don’t run away with the idea that this is a one-sided challenge focused solely to the person with dementia because clearly it isn’t.

Dig a little deeper, however, and see beyond the raised voices, gesticulation, angry advances, tears or complete meltdown and you will see something far less confrontational – an unmet need. I guarantee you that behind every ‘behaviour’ that is labelled as ‘challenging’ there is an unmet need. After all, behaviours are effectively reactions to circumstances.

In the example above the interpreter/carer is challenged by the lack of clear instruction. Their behaviour may include getting irritated, impatient or upset.

For the person with dementia, they are challenged by a) the fact that their dementia is standing in the way of expressing themselves in the way that they want to and b) that the person they are communicating with cannot interpret more effectively. Their behaviour may also include getting irritated, impatient or upset.

The difference between the two? There is a tendency to label people with dementia, seeing their deficiencies and reactions in a more negative light that those of the person without dementia. Fair? No. True? Often yes.

Trying to avoid this potentially inflammatory situation is vital. Think about the person with dementia:

1)      What are their needs?

2)      How can those needs be met?

3)      Can we always meet them?

4)      How do we prevent the person having unmet needs in the future?

Implementing  points 1, 2  and 4 requires spending time with the person.
  • Providing person-centred care.
  • Understanding their likes and dislikes.
  • Finding way to connect with them to communicate in a way that they can positively participate in.
  • Being flexible.
  • Keeping calm and being compassionate.
I could go on, but basically simple, transferable skills that benefit both the person with dementia and the person caring/interpreting for them.

Addressing point 3 is more difficult. You’d like to think that you can always meet someone’s need, but sadly that isn’t always the case. If their need is to be free of their dementia, we currently cannot cure them. The best we can do is to help them to live well with dementia, which may be a compromise that they can live with. If it isn’t and they want your help to pursue, for example, assisted dying, then clearly you cannot meet that need under current UK law.

I have heard such needs expressed, and expressed very forcefully amongst people who are living with dementia, but they aren’t the norm. For most people a need will be for a hug, a drink, a favourite meal, a bath, pain relief, comfort, a change of environment, something to occupy them or to be accompanied on a walk. Simple things you might think, so why are they even unmet needs?

Not having enough time is probably be the number one reason why a lot of needs never get met. Family carers and professionals alike have a workload that generally outstrips the number of hours in the day. Understandably the person with dementia may not recognise this or associate that mountain of tasks with why their current need isn’t being met.

Thus the person with dementia gets frustrated, and potentially so does the person providing care – both caught up with challenges of their own, both feeling challenged by the other, and both capable of behaviour that the other may object to. The only difference here is that the person providing the care has the ability, thanks to an undamaged brain, to recognise the unmet needs of the person with dementia. The same isn’t true in reverse.

So the next time you feel challenged by a person with dementia, remember that you are also likely to be very challenging to them. Turn that challenge on its head and challenge yourself to work out what they might be needing and how you could support them to ensure that need is met.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886