It seems like a very long time ago that my dad first started
showing signs of dementia. In essence it’s about twenty years, but since so much
has happened subsequently it feels like a lifetime separates those
experiences. With the huge level of knowledge
and understanding that I now have about dementia, it seems inconceivable that I
was once a teenager with no idea that my dad was living with a disease that
would change all of our lives.
The more recent memories of dad’s dementia - the periods in hospital,
the nine years in care homes and the heartbreak of his life ending - all live
so much more vividly in my mind than the time that went before. I wish I could
explain our naivety during those ten years, but in truth I know it was a lack
of awareness, irrational denial and a simple hope that everything would be ok.
Yet nothing was normal. Dad’s dependency on us, given that
he had previously been a very capable man, was so uncharacteristic. His
decision making was devoid of rational thought, his imagination ran wild, and his
ability to look after himself and his home persistently floundered. As a family
we gradually began to plug the gaps for him, rarely questioning it and never
realising we were, in essence, becoming carers for him.
In practical terms this meant trying to ensure that he ate
properly and taking food to him (his diet deteriorated to a point where he
would only want to eat bread and cheese – hardly the best choice for his
vascular health – and he refused meals on wheels), helping him with his
personal care (hair washing, bathing, cutting nails etc), changing his bed (and
discovering all kinds of things hidden in it), cleaning (amid huge clutter),
doing his washing, endeavouring to keep on top of the overgrown garden (an
impossible task), trying to ensure post was read and bills were paid (dad would
hide the post), booking his medical appointments (a logistical nightmare to get
him to attend), arranging family meals and trying to maintain normality.
That was all relatively easy though, in comparison to the
emotional toll. Dad would constantly phone up for reassurance, or because he
had imagined something (like an intruder). He would have forgotten what you had
told him, or would want you to come over when it was impossible for you to do
so. He would go out, fall or become disorientated. He couldn’t handle upset or
change of any kind, and would cut himself off by pulling out the phone line or
putting bricks by the door. His world of imaginations and hallucinations became
so vivid for him that it was impossible to maintain any sort of reality, hence conflicts
over things like eating, taking medication or keeping washed and smart.
Gradually dad lost his ability to function in his home, and
without that vital understanding we needed about his dementia and how to support
him, dad hurtled towards a crisis point. It was also to be a point of no return,
as health and social care professionals gave us no choice but to find him a
care home given the nature of his symptoms at that time. I feel incredibly sad
and full of regret that the last night dad ever spent in his own home was on a
cold, hard floor having collapsed from a larger stroke. If we had only known he
had vascular dementia and been given support and advice, I am certain that the
grave nature of what happened that night could have been avoided.
Remarkably, none of the professionals charged with dad’s
care over those ten years ever thought to mention that he had dementia, despite
a consultant old age psychiatrist later admitting that he had known for some
time. It is a cruel twist of fate that in order to reduce vascular
deterioration you need to follow a healthy diet, take regular exercise and
modify your lifestyle, all issues that become infinitely harder to tackle when
someone has already developed vascular dementia through TIA’s, and as a result is
struggling to look after themselves or, in many cases, accept the support
offered by their family.
Even when a family has knowledge and awareness of dementia
and correctly identify the disease in a loved one, it can be a massive battle
to get help if the person themselves doesn’t recognise that they are
experiencing problems, and they steadfastly refuse to accept assistance.
Respecting how your loved one feels and what they say, whilst at the same time
feeling constantly fearful for their safety and wellbeing, is an impossible
juggling act. Trying to force them to seek help can often backfire, creating
long-lasting divisions in families at the very time when everyone needs to pull
together. Gentle persuasion may work, and I wrote tips for discussing dementia here, but ultimately for many families the passage dementia takes will determine
how life evolves, independent of anything you do or say.
Most families fall into gradually providing more and more
care for a loved one, either as a result of already living with them, moving
nearer to them, moving in with them or trying to provide long-distance care and
support. Whether you are near or far, however, the emotional rollercoaster is
immense and for many, myself and my family included, the crisis point that you often
come to is heart-breaking and life-changing.
You look back and wonder what you could have done
differently, but often the simple answer is that you did your best at the time and you
just have to accept that you cannot always bring about a happier
outcome no matter what you do. If I could have those ten lost years with my dad
back I would wish to have known so much more, understood and empathised in the
way that I do now, and done everything possible to avoid that crisis so that
dad could have remained in his own home for longer. There is no doubt that's
what he would have wanted and I wish we could have made that happen for him.
Hindsight, as they say, is a wonderful thing.
Until next time...
Like so many dementia symptoms, aggression is often
misunderstood, leading to inappropriate interventions. It is popular to portray
people with dementia as angry and out of control, aggressive and unmanageable,
frightening and dangerous. Extreme examples of aggression that lead to injury
or death make for good headlines, but in reality all this does is proliferate
stigma and the idea that people with dementia should be locked away, drugged
and forgotten about.
Medicating someone who is simply trying to express themselves
only masks their symptoms rather than getting to the cause, hence why I am wholly
against the use of antipsychotics, as I wrote about here. Indeed best practice
now is that they should only be used in the most extreme circumstances, and only
after every possible alternative has been explored.
I don’t think that routinely locking away everyone with
dementia is the answer either, a view that is backed up by the Depravation of
Liberty Safeguards legislation. So how do we approach aggression in people with
dementia, and what is the best way of alleviating it?
My dad went through a period of aggressive behaviour during
his time in an elderly mentally infirm hospital unit and during his first spell
in a care home. Indeed, his aggression was sited a major reason why that
residential home, despite being a specialist dementia care setting, couldn’t
cope with him. At one point dad had reportedly tried to strangle another
resident, and clearly the home were unable to help him to reduce his aggression
or indeed keep their other residents safe.
Prior to developing dementia, my father was a man of
calmness and kindness. He was a pacifist and hated violence of any kind. In
short, he was a gentle giant – or at least to me as a small child he looked
like a giant! Once the TIA’s (mini-strokes) set into his brain, they created
damage that began to destroy the calm and gentle aspects of his personality,
and yet interestingly my dad never displayed any aggression towards us, his
family.
A lot is written about ‘challenging behaviour’, aggression
being a notable component of that. I would turn the idea of ‘challenging
behaviour’ on its head however, and suggest that the approaches we use
influence the outcomes we see. It’s easy to blame someone’s dementia and label
them as challenging. It involves far more thought and consideration to examine
that behaviour, look at the circumstances of it and understand what is behind
it.
For example, why was my father aggressive with staff and
residents, but not with us? You could look at the fact that he recognised and
loved us, and that we didn’t irritate him or order him around. But I think the
biggest factor is that, without realising it, we were probably the ones giving
him the person-centred care he needed. We knew him, we knew what he liked, and
as a result he felt familiarly and security. He didn’t feel aggressive because
he didn’t feel he had to fight for what he wanted or needed.
Imagine for a moment not being able to explain how you are
feeling or what you need. Words may tumble out, but those around you cannot
understand what you are saying and don’t do what you are trying to explain that
you need or want. You may be in an alien environment with people you don’t
know. You become confused, annoyed, angry and perhaps eventually aggressive.
The parts of your brain that previously gave you your self-control have been
damaged, the checks and balances are no longer there, and the slightest thing
can trigger a reaction.
One of the great downsides to communal establishments for
care, be they hospitals or care homes, is that people from many different backgrounds,
with different dementias or indeed other health problems, are mixing together.
Sometimes friendships are made and happiness is found, but often people irritate
each other, and because they cannot explain themselves in the way they want,
they become aggressive.
Aggression is generally a sign of an unmet need, a cry for
help, a reaction to an environment, individual or circumstance. It can be
affected by emotions, infections or
other health conditions, side-effects of medications, a lack of understanding
of time and space, and even seasonal changes in the weather (for example heat
can often produce a shorter temper).
Trying to identify the cause is about understanding the
person. Looking at the circumstances
surrounding an aggressive episode, assessing that person’s health and wellbeing,
and analysing previous routines and the history of their life prior to
developing dementia. Through these investigations you may well then find the
answer to resolving their aggression, because you should be identifying the things in their life that can bring them
comfort, the changes that you can make to what you or other individuals are
doing, and the impact any environmental factors are having.
Aggression isn’t just reserved for those who are apparent
‘strangers’ to a person with dementia. Just because my dad wasn’t aggressive
towards his family doesn’t mean that all people with dementia aren’t aggressive
towards their loved ones. The progression of dementia can mean that otherwise
close family members aren’t recognised, and all those same feelings of
frustration and anger can emerge.
Families, however, do have an advantage as they are uniquely
placed to try and find the key to providing calm in their loved one’s life. No
one knows the person with dementia better, and even when you feel the disease
has taken the person you know and turned them into a stranger, with patience, persistence,
love and compassion you will find the one thing that will restore that
connection.
If I could tell you what that key is I gladly would, but
our uniqueness means it is individual to each person. What I can tell you, however, it that
aggression doesn’t have to be an untreatable ‘monster’ in the room with you and
your loved one. It isn’t an inevitable part of all forms of dementia, and it
can be alleviated. Support in the methods of person-centred care are vital, as
is access to anything and everything that constitutes therapeutic dementia
care. Most of all, however, people with aggressive behaviour need those around
them to understand, listen, offer support and be constantly available. Being
judgemental, avoiding an aggressive person, or labelling them as too
challenging to help isn’t going to give them any quality of life whatsoever.
Understanding aggression is about understanding the person – who they were, are
now and will be in the future.
Until next time...
Given our aversion to talking about death and dying, the idea of a good end-of-life isn't something that has been widely debated. Yet for people who are
diagnosed with a terminal disease, like dementia, knowing what would
represent a good end to their life, when that time naturally comes, is pivotal to
providing the care that they and their family deserve.
To me, there are two key points. Firstly, the natural
element. One of the many issues that has arisen from the use of the
controversial Liverpool Care Pathway (LCP) in the UK is the fact that many
families believe that their loved ones were put on this pathway before they
were ready to die. Prior to my father’s end-of-life, I had fretted for years
about how we would know when his time was coming and what it would be like.
Having now lived through that experience, I understand the crucial differences
in a person’s condition that can provide a clear indication that they will soon pass away.
Given how often care professionals see people in the last stages of life, it seems extraordinary that anyone
would misjudge this situation. Of course as we now know, the LCP has become tainted
by suggestions that it was actually used to hasten death, free up beds and save
money. Indeed, with hospitals having been given financial incentives to put
patients onto the LCP, it is clear that the whole premise of trying to do good
for patients at the end of their life has become lost in favour of very dubious
motivation.
Having established that someone is naturally dying before implementing
any specific end-of-life care practices, the second most important element is
ensuring that their end-of-life care is exactly what all of their previous care
should have been – person-centred, compassionate, dignified and respectful. One
of the reasons I wrote so candidly about my father’s end-of-life was precisely
because I felt that he had what I would describe as a good death. The manner in
which he was cared for, and we were cared for as his family, is I believe an
example to everyone.
Clearly we were fortunate in being able to find my dad a bed in
a care home that were prepared to look after him for however long he had left.
It is likely to be far more difficult, and potentially impossible, to provide
the same experience in a hospital. Hospices are wonderful, but many are not
prepared to admit people who have dementia due to concerns about how they would
manage the disease.
In truth, these concerns are generally not as great as
hospices might imagine. Someone who is living with dementia and nearing the end
of their life is unlikely to be disruptive, aggressive or exhibiting other behaviours
that they could find difficult to cope with (for example walking). Communication difficulties are
likely to be severe, but I would expect hospices to have extensive experience
in coping with these given that medications and the effects of all kinds of
terminal diseases are going to affect communication for many of their
patients.
As we all know, however, even if more hospices were prepared
to admit people with dementia at the end of their life, there aren’t enough
hospice beds to cope with demand. This then only leaves someone’s own home, a
care home or a hospital as options. I’m sure that most people would want to be
in their own home, but often primary care, out-of-hours care and palliative care
services are not able to provide the help and support required. Having a family
who can care for you is an advantage, but they will undoubtedly need some help
from health and social care professionals within the community, and most experts
in palliative care are already overstretched.
Our experience of care homes is that most did not want to
take my dad when he was languishing in a hospital bed with extensive needs, so
I count our blessings that one home took a very different view. For people who
are approaching the end of their life and currently living in a care home, the experience
can often be that the home become fearful of providing palliative care, and
will therefore call an ambulance to take the person to A&E when severe
pneumonia, UTI’s or other grave health problems set in.
In theory, care homes should be well placed to provide end-of-life
care in an environment that is far more homely than a hospital. To do this,
however, requires liaison with other health professionals (GP’s, specialist
palliative care nurses etc), on-going, honest and transparent discussions with
families, and agreement from all parties on a way forward. I believe that this is achievable (my dad's end-of-life care being an excellent example), but
it would require specific training across the board to empower the professionals
charged with providing this care, and much greater understanding and knowledge on
the part of families. The Gold Standards Framework is an excellent starting
point, but it isn’t mandatory for care providers.
I am certain that most people living with dementia, and
their families, would not want to be in a situation where the person with
dementia is taking their last breaths on a trolley in a busy A&E
department, just because our health and social care services cannot respond to their
end -of-life care needs more compassionately and appropriately. Likewise a busy
hospital ward, as a result of being an inpatient for far longer than necessary
and picking up numerous hospital-acquired infections along the way, is also not
a good model of end-of-life care.
I think that the principles behind giving people a dignified
death without painful interventions and excessive and aggressive treatments is
in essence to be applauded. In the end that is exactly what my dad had and I can say that it was a peaceful and loving end for him. Clearly, however, what
has happened with the usage of the LCP has often gone against all of these
objectives, largely due to failure of implementation and the utterly
inappropriate use of incentives to put people onto it.
Dementia is a progressive and terminal disease, and as such,
ensuring people who are living with it can have a good end-of-life when that
time comes is vital. As a society we need to start having honest, open discussions
about what a good end-of-life really means and how that is achieved. We need to
encourage and facilitate more widespread advance care planning, and ensure that health and
social care is able to support people to have what they have said they want at
the end of their life. For those without advance care planning in place, we
need to ensure that their end-of-life care is as individual to them as
possible, reflecting everything we know about them and any expressions of
wishes.
We need to look at the alternatives to dying in hospital and
how we fund those to ensure that no one is left worrying about monetary issues at
such a sensitive time. And finally, for people who will inevitably die in
hospital, we need to find a successor to the LCP that puts patients and their
families at the heart of that end-of-life process to ensure that a good
end-of-life is a reality for all. We will have succeeded when taking care of
the dying is seen as a privilege for the living.
Until next time...
When you go into any care setting, either as someone needing
care or their family, you naturally expect that everyone who is looking after
you or your loved one has been given all the skills that they need to provide
that care safely, compassionately and confidently. What you might not realise
is that aside from those people who you automatically recognise as being
professionally trained and accredited (doctors, nurses, occupational
therapists, physiotherapists, radiographers etc), those who assist them in
providing care aren’t afforded the same professional status.
Although standards have been laid down by the Skills
Councils for Health and Social Care, there is no robust system for ensuring that
these are met, leaving the training and development of Healthcare Assistants
(HCA’s) in hospitals and carers in social care settings (care homes, domiciliary care
etc) very much open to interpretation and varying levels of implementation. In
addition there is currently no defined path of career progression for those who
seek it, and no professional body that offers registration for this huge number
of care workers (unlike the RCN for Nurses or the BMA for doctors).
During my father’s time as a hospital inpatient, I would say
that the majority of his care was provided by HCA’s. They were the ones charged
with checking his vital signs, turning him to prevent pressure sores, changing
his incontinence pads, and helping him to wash, eat and drink. Nurses were
always on the ward, but clearly not enough of them for the number of high
dependency patients, let alone with sufficient time to support their HCA
colleagues.
Indeed, such were the tasks undertaken by HCA’s that many visiting
relatives actually believed that they were part of the nursing staff. Yet
HCA’s, despite the vital work that they do, clearly aren’t valued by our
healthcare system. Without the professional standing of their nursing
colleagues, HCA’s are effectively a cheap labour source for employers. Many are
working on grossly over-stretched hospital wards leading to their duties creeping
ever more into the realms of full-blown nursing. In monetary terms it costs far
more to employ additional nurses than it does to ask HCA’s to complete some nursing tasks, but this is a dangerous game to play with patient’s health and
wellbeing.
The situation is no better in social care, with carers in
care homes and domiciliary care again providing vital support to often highly
dependent vulnerable people under huge pressure, often inadequately trained or
supervised and feeling very undervalued. Whilst some care providers constantly
update and evaluate the skills of their workforce, others provide
much less effective training for their staff, putting those who are receiving
care at huge risk. Training doesn’t need to be complex, degree-style education
(see this blog post), it just needs to be logical, natural and above all effective.
How this situation has gone on for so long is a mystery to
me. We regulate health and social care services and demand high quality care,
and yet that isn’t followed through with a framework that invests in and supports
the very frontline staff who are charged with delivering this. I’m not
suggesting that training and qualifications are the answer to all of our
problems in care, far from it. On many occasions I had to educate both nurses
and HCA’s on how to care for my father in aspects such as his swallowing
problems, communication difficulties or behavioural issues. I do, however, feel
that as patients and relatives we want to know that care provision is
considered sufficiently important that it warrants a professional standing
within our society, with the relevant standards and rewards in place, adhered
to and monitored.
Currently, many HCA’s and carers working in social care earn
less per hour than you might get as a cleaner or refuse collector. Whilst the
latter two examples are important jobs, surely being in a position where you
could potentially influence whether someone suffers pain, harm or ultimately
lives or dies as a result of the care you provide is somewhat more important. I
also believe that the role of HCA’s and carers in social care settings is one
that their more qualified colleagues would also want to carry greater
recognition and professional standing.
Nurses and doctors on busy hospital wards would be the first
to admit that they would be lost without HCA’s. An effective care team cannot
function without people who provide the basic care that is so vital to a patient’s
recovery and comfort. Indeed, I would argue that the role of HCA’s goes beyond
just providing care, but also moves into the realms of social interaction with
patients, and provides vital opportunities to learn more about a patient or to
spot changes that could indicate a problem or decline.
Looking at the role of HCA’s in that light, you suddenly
realise just how important they are in a care team. So why don’t we train them
to a higher, universal standard, give them professional recognition and pay
them more money? The simple answer is because it’s cheaper not to. But does it
represent good care, or indeed the model of care we want for ourselves or our
loved ones? No.
In my opinion, for far too long those who provide frontline
care have been marginalised, undervalued and seen as the workhorse of public
and private sector health and social care. There has never been a more
important time to change this situation if we are truly serious about
delivering high quality care across all sectors. I believe most HCA’s and
carers in social care would want this, their colleagues would support such a
move, and most importantly of all patients and families would know that those
looking after them at some of the most difficult and sensitive moments in their
life are recognised and valued professionals within our society.
Until next time...
One of the first things to become bypassed in someone’s life
as their dementia progresses and they become more reliant on social care can be
their faith, beliefs or spirituality. This is often as a result of professionals
caring for them feeling very uncomfortable about anything religious or
spiritual and dismissing it, actions that echo the words of a famous adviser to
a former UK Prime Minister who once said, “We don’t do God”.
It is, however, vital to recognise that many people actively
want to ‘do God’ or indeed follow any other religion or belief structure, and it
is absolutely their right to do so. This is particularly true when someone’s
health deteriorates, or they have been diagnosed with a terminal illness. In
those times many people draw strength from their faith, and no one should deny
them that or say that they cannot, least of all those who are charged with their
care.
Whilst you can exercise your right to follow your chosen
path of belief or spirituality in almost every situation life can throw at you,
living with dementia has a tendency to gradually remove that autonomy. If you
actively practice a faith, you will then potentially need support to fulfil
that calling in your life, and understanding from those around you who may come
from different backgrounds and cultures.
I have seen both the positive and negative approaches to
supporting someone who is living with dementia within the context of their
religious beliefs. The positives were largely in relation to my father, who
received regular pastoral support, particularly during the last few years of
his life and during his end-of-life. This was largely due to good fortune,
however, as another relative in his care home happened to be a practicing clergyman
who visited his mother daily, and was happy to provide pastoral support in his
professional capacity to anyone else in the home. There were also monthly
services that residents could attend, and the hymn singing was always a particular
favourite with dad.
Sadly a Muslim lady had a far more negative experience when
she moved into the home. Despite requiring a strict Halal diet, some carers
were caught feeding this lady non-Halal meat. When these carers were questioned
about the food, they said that this lady’s dementia was so severe she wouldn’t
know what she was being given, and had been willing to eat it so it made no
difference. Moreover, with the exception of one carer who was from the same
cultural background as this lady, no others were able to correctly assist her
to dress in a manner befitting her cultural and religious heritage.
Clearly the experiences this lady had did not represent good
care, but they do perhaps give an insight into how easy it is considered to be
to bypass that vital role of supporting someone to maintain their religious and
cultural beliefs. Often a person with dementia cannot fight back against this,
demand better or indeed remove themselves from what has to be considered a form
of abuse, hence why we need a far greater emphasis on these elements of care.
Advocacy can help, as I discussed here, but fundamentally we
need to ensure that care in the UK exists within the context of being person-centred,
and doesn’t take the ‘easy’ route of ignoring someone’s faith or beliefs.
Exploring the whole person means looking not just at the physical things like
possessions and tangible choices that are often much easier to acknowledge, but
also accounting for the things that don’t exist in a physical form and represent
the spiritual.
For anyone who has a faith or belief structure, that
spiritual side of their life is often far more important than the physical
things that they are surrounded with. Yes a cross, beads, items of clothing or
symbols associated with particular customs or festivals can bring incredible
comfort, familiarity, joy and peace, and hymns, songs, chants and readings can provide
fantastic therapy, but it will often be about the unspoken or otherwise
untouchable things that their faith brings them that lie at the heart of their
life.
Care plans include the opportunity to describe someone’s religion,
but as we all know these are documents that are largely completed purely for
regulatory purposes. To be blunt, questions about my dad’s religious beliefs were
directly linked to the questions about the sort of funeral he would want when
the time came. For the most part, the pastoral care that my dad had was due to
the arrangements we made as a family, which begs the question, what happens to
everyone else?
Routinely ignoring the spiritual needs of people with
dementia is never going to represent good care. Where someone has a faith that
they have previously actively pursued and wish to continue with, they must be
supported to do that whether they are living in their own home and relying on regular
visits from a faith leader or support to attend an act of worship, or are
living in a care home, whose remit as a caring community should always include opportunities
for regular worship and one-to-one pastoral care. Without these structures,
there is a danger that the only spiritual support someone with dementia experiences
will come from a hospital chaplain at a point of severe crisis, if indeed they
have any support at all.
Engaging faith leaders in increasing their knowledge and
understanding of dementia is an important step to ensuring that everyone who needs
their support has it, but without social care embracing this key aspect of many
people’s lives appropriate pastoral care for all will still be a long way off.
Care is not about our own personal views; it’s about walking into someone
else’s world and embracing everything about them, be it seen or unseen, and
ensuring that all who want to have the opportunity to keep their faith alive
can do so.
Until next time...
