Given that dementia is one of the most feared, if indeed not
THE most feared disease in the UK and beyond, you could probably turn the
moment of diagnosis (worldwide a new diagnosis of dementia is made every four seconds) into the basis of a horror story.
It is truly the news that no one wants to hear, and however
much it can help to explain that which seemed unexplainable, it is for any
individual and their family a life-changing moment. You may well feel angry,
numb or very emotional. There may be tears, or it may be all about trying to
maintain a stiff upper lip. In the hours, days, weeks and months ahead there
will be questions, so many questions, and potentially a scarcity of answers. Of
course some questions are unanswerable, the most notable being “Why me, why us?”
Then there will be the decisions, which you may be advised
not to rush, and yet may feel you want to get out of the way just so that you
don’t have to continually mull them over in your mind. How are you going to
break the news to your family and friends? Do you even want to tell them? What
about advanced care planning? Can you face making plans for a time when your
dementia will be advanced and you aren’t able to participate in planning in the
way that you can at the moment? Do you have a will and a Lasting Power of Attorney
in place?
Add into that potential areas of conflict with your partner
or those closest to you. Maybe they want to tell people about your dementia but
you don’t want anyone to know. Maybe you don’t want to call what you’ve been diagnosed
with ‘dementia’ through fear of stigma, but your partner does. Maybe your
family want to access help and support services that you don’t feel ready to be
a part of yet.
If coping with all of this wasn’t enough, crushing moments
when you cannot hide from the truth can crop up unexpectedly and with alarming
regularity. Handing in your driver’s licence. Visiting your GP. Having your ‘behaviour’
explained by your partner to people who have no idea about dementia, or a very
stigmatised view. The sympathy that flows when people hear about your diagnosis
– sympathy that you know is well-intentioned but makes you feel even more like
a patient. Or the fact that friends and family stop talking to you and only
talk to your partner. Even small things, like applying for travel insurance,
can remind you of your diagnosed status.
Inside your head you may be thinking that you’ve let
everyone down. You may feel as though you’ve been robbed of your future and the
plans you had to enjoy your life. You may dread the thought of needing care, or
of having to watch your partner caring for you. You may be wondering where you
will live and how you will afford to pay your bills. Indeed, may just want to
scream, cry and kick something (not the cat!).
For people who’ve been diagnosed with young-onset or
early-onset dementia (dementia in someone under 65) there are often additional
considerations. You may have to decide how to tell your employer. You may be
facing losing your job and potentially not being able to pay your mortgage, and
likewise for your partner if you need them to help care for you. You may still
have dependent children who are relying on you, or ageing parents who need you
to be caring for them in their mature years.
In short, a diagnosis of dementia has a ripple effect
throughout every aspect of life that affects not just the person with dementia
but everyone who knows and loves them. For most people, that life-changing
moment of diagnosis will come during an appointment with a consultant
specialising in dementia (an old-age psychiatrist), in potentially a very
clinical setting, often with little offered in the way of help and support largely
because the clinician hasn’t been given resources to signpost you to.
It may come after many months of waiting following your initial
consultation with your GP, and will usually be as a result of extensive tests
at your local Memory Clinic. It may not be a shock, or it may be the biggest
shock you’ve ever had, but it’s important to remember that whilst so many
aspects of your life may be set to change over time, fundamentally you walk out
of that consultation room the same person who walked in.
A diagnosis should never mean that you go from being a
vibrant, hopeful person to someone who cannot see a way out of the fog.
Everything that you could do before you walked into that room you can still do
when you come out of it, and if you are to live well with dementia you need to
keep on doing as much as you possibly can for as long as you possibly can. It’s
easy to get blogged down in the really tough stuff, most notably wondering how
you may decline in the future, but if any disease should make you want to live
for the moment, it’s dementia.
My dad astounded many a medic by living for 19 years with
dementia, and having quality of life very late on. Back when my dad
was diagnosed we didn’t have Memory Clinics, and due to the haphazard nature of
how dad’s dementia was supported (or rather not supported) during the
first ten years of his life with the disease, dad’s diagnosis came while he was
an inpatient in the local hospital, with his ‘team’ diagnosing and us as his
family simply being informed that he had been moved to an Elderly Mentally
Infirm (EMI) Unit. When we asked why he had being moved, we were bluntly told,
“He has dementia.” Only after demanding to see one of the consultant psychiatrists
in charge of the unit did we understand a little more, but I can honestly say that
pretty much we just had to ‘learn on the job’ , and we were still learning nine
years later when he passed away.
In many respects, that is the nature of dementia. A few
people have a very rapid progression into the advanced stages of the disease,
and indeed pass away quite quickly afterwards. For most people, however, the
decline is far slower, enabling a huge amount of occupation and enjoyment in
life that provides priceless memories. My hope is that as we improve awareness,
understanding, care and support that everyone’s experiences of diagnosis and
the aftermath will be less of a horror story and more of an inspiring story.
Until next time...
I
’ve summed up previously about the feelings of loss associated with dementia, but given the enormity of this emotion for so many
families I feel a greater exploration of this subject is very much needed.
One of the most common questions I was asked during my dad’s
dementia was, “Does he still know who you are?” In my mind, and taking into
account everything that represented expression and communication from my dad, I always felt confident in replying “Yes!” For many families,
however, the answer is less clear-cut, and that is just the tip of the iceberg
when it comes to the emotional impact of dementia.
I think at pretty much every point in a loved one’s
dementia, from the onset of symptoms and eventual diagnosis, through the period
of time that follows - as everything that represented your life with your
relative gradually, and sometimes suddenly, changes – to the more advanced
stages and then eventually end-of-life, one thing that never leaves most
families is that sense of loss.
It is characterised by observing the changes in your loved
one that indicate what they are trying to cope with, changes that provide a
constant reminder that dementia has invaded your lives. It is
enhanced by not being able to communicate with them as you once did, leading
potentially to that devastating time of feeling that they don’t know who you
are, and it is ultimately driven by a constant sadness that life will never be
the same again, that dementia isn’t curable, and that you face a future you
never expected and do not feel prepared to cope with.
For many families, this accumulation of circumstances can
replicate something akin to the grieving process. It is common to feel angry,
upset, bewildered, confused and numerous other emotions as a result. That sense
of loss isn’t easy to comprehend or deal with, it can creep up on you and become very overwhelming, and for some people it can make them feel that they don’t
want to see their relative any more.
Watching the decline that comes with dementia is tough.
Trying to remain positive for your loved one’s sake, whilst feeling empty and
desolate yourself is a very hard show to keep on the road. At some point I
think we all break down, but it’s really important not to beat yourself up
about that. We are human; feeling and showing emotion is natural and should
never be condemned.
The greatest problem when you feel you have lost something
is wanting to find it again. We will turn our home upside down if an
important document or item goes missing. If we lose the love of our life, we
can spend many years hoping for a reconciliation before potentially both
parties find that having been apart they simply can’t live without each other.
Dementia, however, doesn’t offer quite the same opportunities for resolution.
Instead, coping with that sense of loss means adjusting to a
new reality. Potentially you will be taking on a different role – for example
becoming a parent to your parent, or a carer to your spouse or partner. Additional
responsibilities may well come your way, and over time
you could find yourself searching for new and ever more innovate ways to find happiness
together, or simply exchange thoughts or emotions. And yes, ultimately it
really can end up feeling like the weight of the world is on your shoulders.
Unfortunately this whole new world can often only heighten
your sense of loss. At the very time you are craving normality and the life you
had, you are having to adjust to a different set of rules and expectations. Why
does it hurt so much? In my view, the more it hurts and the deeper that sense
of loss, the greater the love is that you feel for your relative. The searing
pain of loss is always most acutely felt for the people we love the most, and
it is that love that hopefully sees you though the sense of loss that you are
feeling.
In my case, my love for my dad did just that. It was never
easy to always see beyond the situation we were in together, nor did a day go
by when I didn’t dearly wish I could change things and put them back to how
they used to be before he developed dementia. Sometimes the more immediate
battles over care and support became a distraction from the emotional toll, but
it was always there, waiting to hit us hard once again.
Coping with your own sense of loss is something that is very
individual. I can’t promise it gets any easier, nor that you won’t re-live it
all over again when the end of your loved one’s life comes. The sense of loss
you feel over a death, during the planning for a funeral and afterwards, in some
ways feels more natural, and is perhaps more easily understood by people
without experience of dementia, but for me I found it quite exceptionally
painful, purely because I still wanted my dad to be alive, regardless of how
his dementia affected our lives.
Until next time...
"
They kick, punch and bite us, what do you expect us to do?" The words of a social care worker caring for people in a residential
dementia unit, explaining why they sometimes have to physically restrain their
residents or request prescriptions for antipsychotics.
The use of restraints is
only legal in England and Wales if it is covered by a Deprivation of Liberty Safeguards
(DoLS) order which, according to recent figures released by the Health and Social Care Information Centre, have increased year-on-year since their introduction in 2009. 11,887 applications were made in 2012/13, of which 54 per
cent related to people living with dementia, but as a society how do we feel
about restraining people with dementia, even when it is done legally?
Restraints can involve using bedrails to keep someone in
their bed, straps to tie them to a fixed object, seatbelts on chairs or locking
them in a room. I’ve seen care home residents belted into wheelchairs to stop
them from moving about – although one gentleman proved sufficiently strong to
get to his feet and move around with the chair attached. I’ve also seen
residents who have been strapped into wheelchairs injure themsevles trying to get out of the chair, with chairs ending up on top of them
or arms and legs getting entangled with metal.
As far as bedrails are concerned, I saw extremely high ones
used on a man in a hospital bed to try and prevent him moving around the ward,
but this was entirely inappropriate since he managed to climb over them on
numerous occasions and eventually hurt himself as a result. Very low-level bedrails
were used on my dad’s bed in the last couple of years of his dementia, but my written
consent was obtained before they were used and their purpose wasn’t as a
restraint, but purely as a safety measure to ensure he couldn’t roll out of bed
onto the floor (he was already immobile so wasn’t being prevented from getting
out of bed by them, merely from falling during his sleep).
The use of antipsychotics was of course once commonplace in
dementia care, as I wrote about here, with my dad enduring a period on this
type of 'chemical cosh' medication before we managed to get it stopped. I am still regularly
contacted by families who are having to cope with the trials and tribulations
of having loved ones with dementia on antipsychotics, despite such
prescriptions now being seen very much as an absolute last resort for only the
most severe dementia symptoms when all other interventions have failed.
So how do you cope as a care worker if you are going into
work every day and being kicked, punched and bitten? The answer is you
potentially don’t, but more often than not that is due to a failing in the
system, rather than something the person with dementia or indeed the person caring
for them can control. If anything, those two individuals are the biggest losers in a system
that too often resorts to factory farming our older people. A lack of funding for care
has led to cutbacks in staffing levels and specialised training in many organisations, and the result
could be described as a return to the dark-ages of care provision.
What is perhaps most alarming about the situation around
DoLS applications isn’t the number of applications being made or indeed the
number being approved, it is the persistent fear of how many restraining
practices are being used illegally. Behind closed doors many ‘professionals’
are looking for a quick fix for ‘challenging behaviour’ that will take up
minimum staff time but provide maximum effect in terms of containing someone
who they see as a problem. For them, a DoLS order isn’t necessarily a priority,
particularly as they would need to show that the restraint measure being
proposed is appropriate, in the person’s best interests and is the least
restrictive possible.
In my mind, depriving someone of their liberty should only
be done in the most extreme cases, when all other avenues of care and support
have been exhausted and the person with dementia is a direct danger to themselves
or others around them. To avoid the need for restraining measures,
organisations may need to implement institutional changes in the way care is
provided in order to alter staff behaviour resulting from a cultural lack of
understanding of dementia, with someone leading those changes who believes that
there is another way to approach dementia care.
If staff have never been trained in how to cope with someone
experiencing severe dementia symptoms, like aggression, confusion,
walking, problems with orientation or issues with sleeping, they are likely to
feel out of their depth and looking to resort to restraining methods to protect
themselves and those around them. It’s a natural instinct, but it is an
instinct that never needs to be seen if an organisation is capable of
responding to the needs of individuals with appropriate staffing levels and by
embedding a culture of person-centred care throughout their
organisation.
I’m not saying that dementia is an easy disease to manage,
but however hard it is to look after someone experiencing it, it is far harder
for them to actually be living that experience or indeed handling the
consequences of the actions of those who are charged with caring for them.
Sadly most organisations are so financially squeezed that they are operating on
budgets that don’t allow for either specialised training or one-to-one care
provision, therefore restraints, be they physical or pharmacological, are a
cheap, simple solution.
In situations where that is true, I feel a deep and profound
sense of shame that we cannot respond in any other way, and even when
organisations have a DoLS application approved and are acting entirely within
the law, I struggle to comprehend how we cannot enshrine in law care practices
that could avoid the need for restraint altogether. Idealistic maybe, but
consider this. Dementia may remove someone’s ability to be proportionate in
their response, but those not living with dementia cannot claim the same. In my
mind we must always be proportionate in our response.
Until next time...
There are so many things in life that we take for granted,
from the mundane to the critical, cruising through our daily lives wrapped up
in our own world, largely ignoring what actually constitutes the foundations of
day-to-day living. Take those things away from us, however, and suddenly we
realise just how vital they are.
Think about the basics of life for a moment, like waking up
in the morning in your own bed and knowing that it’s your own bed. Getting home
from a day out and knowing that you are, in fact, at home and can enjoy that
feeling of being comfortable and safe. Or seeing your partner, siblings,
children or grandchildren and knowing exactly who they are and how you are
related to them.
Recognition of places or people that form part of our
everyday lives gives us grounding, a sense of belonging, of knowing who we are,
how we fit into our family and where we can feel secure and be ourselves.
Living with dementia has a tendency to change those key markers for many
people, leaving them disorientated in previously familiar surroundings or
struggling to recognise faces that have been part of their life for years.
Amongst the many symptoms of dementia, these are some
of the most difficult for someone who is living with dementia and their family
to come to terms with. The pain of seeing a loved one so lost and bewildered
or struggling to work out who is in front of them is heart-breaking. For the
person with dementia, however, it is likely to be even worse.
In the earlier stages of dementia, when a person often still
has a high level of awareness, that desire to show those around them what they
can do and prove that they are still their own person is huge. Anyone feeling
like they’ve lost control of their life is always going to want to claw back
that control, and not being able to feel comfortable in a place that you are
told is home, or indeed amongst people who are apparently your nearest and
dearest, would elicit feelings of confusion, sadness, frustration, anger and utter misery
on the best of us.
Not being able to recognise a place that has been your home
for years, to the point where you can’t even find your way to the bathroom when
you need the toilet, is likely to feel degrading and humiliating. Worst still,
if the place you are being told is home doesn’t feel like home, all those
comforts that we associate with being in our own space are lost, and you potentially then feel permanently on edge, unable to relax or conduct normal
activities.
If you are already struggling to remember how to have a
shower so that all of you comes out clean, or get dressed in the right order
(with co-ordination, appropriateness for the occasion and comfort in mind),
make a cup of tea (in a cup, with boiled water and the right amount of milk and/or
sugar) or turn the TV on and find your channel of choice, your environment will
feel even more alien. A bit like living in a hotel that you found when you were
lost, where you’ve no idea how anything works, haven’t packed the right things,
don’t want to bother anyone by asking (since you then feel like a nuisance) and
can never leave. Suddenly it makes a stay at Fawlty Towers* look quite
appealing!
When it comes to knowing who the people around you are, it’s
an even more terrifying prospect. From time-to-time we all struggle to put a
name to a face, but when it’s the people you grew up with, those you have lived
with for years, the children who you bought into the world or the grandchildren
you lovingly cradled, life can feel very desolate.
Not being able to recognise family members can have
far-reaching consequences too. You might have woken up next to your partner for
the past forty years, but if the day comes when you wake up next to them and have
absolutely no idea who they are, or where you are, you are likely to feel
terrified or angry. Many a call has been made to the police by a
person with dementia who cannot recognise their surroundings or the person that
they are with, and as such are feeling in danger or believe that they are being
held against their will.
Without recognition of who someone is, or
reasoning to assess a particular situation or the actions of a family member,
accusations of improper conduct or criminal behaviour like abuse or steeling
can be incredibly hurtful and mystifying for families. Paranoia is a common
symptom of dementia, and something we experienced with my dad when he became
convinced his neighbours were stealing from him. For the professionals who are
often called in to investigate such claims, it can mean treading a very fine
line as you try to discover if someone is paranoid as a result of their
dementia, or is in fact trying to report something very real and potentially
unlawful.
With all of these complexities of day-to-day life with
dementia in mind, my advice to you today is to stop what you are doing for a moment,
take in the familiarity of your home, the love of your family and the security
that comes from these things, a security that those of us without dementia often take
for granted. It is anything but mundane, it’s priceless.
Until next time...
I’m not quite sure when it happened, but it seems that
wrapping human beings up in cotton wool has become a habit that many
individuals and organisations are struggling to get out of. Prime candidates
for this approach are anyone who is older and considered to be vulnerable
through their health or circumstances. For anyone who falls into this category,
the cotton wool approach is likely to become the standard response to ‘caring’ for you.
In the UK, and I’m sure further afield too, we have become
very risk adverse. Since just about everything in life has some risk attached
to it, it seems that a return to the womb may be the only option to ensure we
remain truly safe. With reverse births yet to be pioneered, however, perhaps it
is worth proposing an alternative approach – let’s put risk back into living,
mainly because life without it really isn’t life at all.
I’m all for ensuring that people with frailties are cared
for with due recognition of what is making them more fragile, but risk aversion
has gone too far. In many health and care settings, people are expected to
remain seated or in bed because of the risk of falls, even though many
are capable of being more mobile and would benefit from being so, not least in
reducing the instances of pressure sores and infections.
I’ve seen food and drinks left out of reach of people until
they are cold, simply because of the risk that these items could prove to be
too warm to consume. Personally I am not a fan of cold tea or coffee, so
taking this approach with me certainly wouldn’t encourage me to keep hydrated. Doors to the outside are kept locked because of the risks associated
with going outside – getting burnt in the sun, catching a chill in the cooler
weather or getting wet, despite the fact that sun cream and clothing are
readily available to prevent all of these eventualities.
You can take it further too. Banning animal therapy because
of the risk of spreading diseases. Avoiding arts and crafts because of the risk
that paint or other substances could be ingested. Preventing someone from
making their own drink or preparing a simple meal because of the risk that they
might burn or cut themselves. Banning gardening in case someone over-stretches
themselves with a task, or eats something they shouldn’t. Only allowing people
to bath or shower when absolutely necessary because of the risk of them
slipping when they are wet and soapy.
The list is endless, the point is that taking away risk
means basically condemning someone who has needs, capabilities, wants and
desires to a vegetative state that isn’t of their making. I have written
previously about the need we all have for a sense of achievement, but
this can only come from allowing us some risk in our lives. Letting people do
as much as they are able to, and supporting them to excel and potentially push
themselves even further, can be frightening but also very rewarding for them
and for the professionals caring for them when they do something that they were
never considered able to do.
The compromise is to manage risk. You wouldn’t necessarily
help someone with a heart condition to go bungee jumping, but you could help
them to go outside and sit in a swing in the sunshine. You would be
irresponsible to leave a person with advancing dementia alone in a kitchen with
numerous safety hazards, but you could be there with them and help them to make
themselves tea and toast for breakfast. Indeed many activities that are
considered risky can have their risk reduced through supervision and assistance.
Allowing the people we care for and love to have some risk
in their life isn’t easy. We want to keep them safe, protecting them from all
harm or potential for pain or upset. But it can never be considered good
practice to become so risk adverse that you order those
in your care to remain seated or in bed, thus condemning them to losing the use
of their legs. Many people become more unsteady on their feet in later life,
and especially when they are living with dementia, but numerous mobility aids
exists to support someone to move around, and certainly in my dad’s case, items
like hip protectors were also very helpful.
Sometimes I think care providers lose bravery. Away from
their jobs, they can still go and have adventures and try new, exciting and
sometimes scary things. It’s easy to forget that those needing their care are
no different in wanting that feeling of the wind in their hair, the taste on
their lips or the smile that comes from achievement. We hate the idea of losing
our own independence, but by become risk adverse in our professional lives, we
automatically deny the opportunity to experience the unexpected to those we are
charged with caring for.
So next time you see risk, make sure you are also seeing the
person. Ask yourself these questions:
- Are you really protecting the person, or are you actually more concerned about
protecting yourself?
- Are you guilty of seeing too many situations as risky,
when in actual fact the risk is far more minimal than you realise, or could be
virtually eliminated?
- Can you find a way to enable someone you are supporting to do something that they want to do rather than just
dismissing it as too risky?
- Finally, can you build more proactive risk taking into the
daily life of the people you support so that they are actually living and not
just waiting to die?
Until next time...
They say that sex sells, and yet when it comes to dementia no one talks about it let alone advocates it. The idea of older people, and particularly
those living with dementia, feeling sexy, desirable, thinking about, talking
about or wanting physical intimacy is a subject rarely broached and even less
likely to be explored.
Yet sex isn’t the preserve of the young. We focus on sex
education for children, teenage pregnancy rates, sexual objectification in
society, the implications of widely available porn and the sex lives of
celebrities, yet how often does anyone consider the needs of our older
generations. Society focuses on those of childbearing age when it comes to
talking about sex, wrongly assuming that when someone gets older they simply trade
their reproductive organs and sexual desires for a zimmer frame and a bus pass.
Bear in mind that many of the people living with or likely
to live with dementia in the future are the baby boomers – people who knew a
thing or two about procreation and what it involved. The swinging sixties, when
the pill was first made available, hemlines got shorter and free love reined is
historically considered a time when sex was reinvented, taboos were broken down
and it became more mainstream. Meanwhile, the younger generations who are
providing the majority of today’s care workforce have been conditioned to think
that they are the true pioneers of the sexual revolution.
The truth is that as we get older we don’t automatically
lose our sex drive. It may diminish, and for some people go completely, but to
assume all desire to feel physically attractive or engage in intimate physical
activity leaves every person over a certain again (and certainly by the time
they are likely to need help with their care) is totally inaccurate.
The nature of dementia is often to return someone living
with it to their earlier life, which can have very contrasting effects on their
sexual response. For some people they may be living back in their teens and
twenties, eager to look their best and try to attract a mate. They may have no
concept of being in their 70’s, 80’s or 90’s, and instead may have a very
strong desire to engage in the sexual activity of their youth.
Whilst some earlier generations were very sexually
liberated, for others sex was something never spoken about and generally only
considered to be an activity within marriage. Imagine the horror someone from
that background might feel when they need assistance with washing, dressing or
incontinence care, particularly if they don’t recognise the person providing
that help. For them, being naked may make them feel very uncomfortable and vulnerable.
It must also be remembered that for some people, their
earlier sexual experiences could have involved pain, aggression, a need to fulfil
a ‘duty’, a lack of trust or other disturbing circumstances, including abuse.
For them, the intimate nature of personal care can be a throwback to a time
that they would never want to revisit, and lead to extreme reactions such as
emotional breakdown, aggression or refusal.
Dementia can also produce very uncharacteristic sexual
responses, particularly an extreme lack of inhibition, whereby a person who was
previously very conservative becomes very sexual provocative, may expose
themselves without warning, or indeed make sexual advances towards anyone and
everyone. It can be extremely embarrassing or upsetting for a spouse to witness
this, and it can present problems for professionals too. As a paid carer, how
do you cope with requests for sexual contact? Or finding someone you are caring
for masturbating?
These are issues that even in our modern age of sexual
enlightenment we don’t feel comfortable discussing, yet they are real and I
guarantee that they are happening in homes, hospitals and care homes right now.
Often issues of sexual desire produce laughter and jokes, but laughing at
someone with dementia, labelling them (for example as a ‘dirty old man’) or
taking the micky is never the right way to handle such a delicate situation.
I would suggest that gently placing unexpected sexual
advances within the moral compass that is usually engendered in all of us from an
early age (for example carefully explaining that you aren’t available due to
being married to someone else etc) is sometimes all that is needed. Telling
someone with dementia that they are already married and so must not feel this
way often won’t work, as they may not remember that they are married and
therefore won’t understand that context.
If someone with dementia is persistently touching
themselves, especially in public, that can produce feelings of shame or
embarrassment for their family or professionals caring for them. I remember
frequently hearing a lady in dad’s care home chastising her husband when she
found him masturbating, but shouting isn’t likely to help. Distraction
techniques, or occupations that provide a sense of purpose, can help to avoid
that confrontation.
Families, and especially a spouse or partner, often find the
multitude of issues that can surface in relation to sexual desire and intimacy
a hugely challenging aspect of dementia care.
From having a loved one with increased desire, to coping with a partner
who doesn’t even want to kiss or hug you (as I wrote about here), issues of
physical attraction and sexual expression are some of the hardest things to
cope with, made worse by feeling that you cannot talk about them. Yet when you
consider just how much sex is talked about in society, maybe it’s time we
acknowledged and started to understand that desire isn’t just an exclusive club
for the young. It’s for the young at heart too, and yes, even people living
with dementia.
Until next time...
The most enduring question in dementia is surely the one
that asks if we will ever find a cure? It is something people living with
dementia long for, something their relatives desire above anything else, and something
that those who are bereaved as a result
of dementia wish had been discovered years ago. In short, a cure for dementia
would represent possibly the ultimate medical breakthrough.
Sadly that day is not here yet, and despite almost weekly
headlines of potential new treatments and theories on dementia that promise so
much, the cure proves as elusive as ever. This is largely because there is
still so much to learn about dementia, its many forms, and within each of
those, understanding how they manifest themselves uniquely in each individual. It is,
by anyone’s standards, a huge task.
In the meantime, all we really have is hope. They say it’s
the hope that kills you, but I think in relation to healthcare hope should give
you purpose and direction. For scientists and academics hope represents
challenge – the chance to make that breakthrough that you will be remembered
by. For pharmaceutical companies, whose influence in healthcare is arguably far
more extensive than it perhaps should be, hope offers the promise of big
business and huge profit.
For the rest of us, living, loving and losing our relatives to dementia, all the research, papers and trials we hear about seem a world
away from real life. For us hope represents a need for action, and that
indescribable feeling of wanting to be able to do something, anything, to make
our loved ones well again. For someone who is living with dementia, hope
represents frustration, and a realisation that when you are living with a
terminal disease the breakthrough that provides a cure just cannot come quickly
enough.
This outlook may seem very bleak, but in the midst of it
there is potential. Not for a cure by this time next week obviously, but for
the more immediately achievable aim of making living with dementia a more
positive experience. Positivity about dementia is very bound up by the need for
a cure. The fear is that whilst a cure remains elusive, improvements in dementia
care will always be held back by the one element that is missing, rather than
all the other elements that we can improve upon right now.
Problems in everything from diagnosis to end-of-life care have
been attributed to the lack of a cure. Lower than expected diagnosis rates have been linked to an attitude that without a cure what is the point in diagnosing (not a view I share but one that has been widely touted). Poor care
post-diagnosis has been attributed to there being no point in providing better
care because the prognosis for everyone with dementia is terminal regardless of
anything we do (another viewpoint I don’t share). Even unacceptable standards
in end-of-life care are linked to the lack of a cure for dementia.
People who are dying of cancer are considered to have lost a
battle that they at least had a stake in given the many treatments that have
been developed to try and cure the numerous cancers. The hospice movement
embraces people who are dying from cancer and provides some truly exemplary
examples of compassion in end-of-life care. In contrast people with dementia
aren’t likely to get better regardless of how early they are diagnosed or
whatever treatment they are offered. Theirs is considered a losing battle from
day one, and somehow a less worthy one because there is no cure. For them
hospices generally aren’t an option, and an end-of-life that is chaotic, undignified
and very confusing often awaits.
I would argue that using the lack of a cure as an excuse for
anything that detriments people living with dementia is never justifiable. In
wanting that elusive breakthrough so badly we are in danger of losing sight of
what is more immediately achievable. In setting so much store by having a cure,
dementia comes out as the poor relation to all the other major diseases that at
least offer the potential of recovery. And worse of all, we struggle to move
away from the perception of a diagnosis as a death sentence and the years afterwards
as time on death row.
I’m not saying give up trying to find the breakthrough that
could end dementia, far from it, but we must not let our desire for a cure
obscure the need for a more proactive approach right now to ensure that living
with dementia is just that, living. It’s about taking our hopes, challenges and frustrations and seeing how we can make life better for people with dementia today, while the scientists and academics do the work that will one day
change the prognosis of dementia and with it, change our world.
Until next time...
