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...
