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...
You can follow me on Twitter: @bethyb1886
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...
You can follow me on Twitter: @bethyb1886
