One
of the great myths around dementia is that it exists in isolation. If every
person with dementia was only living with dementia and no other conditions, and
they weren't at more risk of developing other conditions during the course of
their dementia, then care and support would be infinitely more straightforward.
The reality, however, is very different.
The
description 'multiple long-term conditions' is relatively new terminology, and
the knowledge around how to manage multiple long-term conditions isn't
comprehensive. We don't know enough about the interactions between different
conditions, or indeed how the associated polypharmacy (where a person is taking
multiple medications) is going to affect each individual now and in the future.
Some
conditions are explicitly linked with specific forms of dementia, a classic
example being the association between vascular problems (IE: high blood
pressure, heart disease and stroke) and vascular dementia. More generally,
there have been many headlines written linking diabetes with dementia, and for
people with a learning disability and dementia, the risk of epilepsy is
increased.
There
is so much more to this multiple condition landscape though, and a person who
is living with dementia could quite easily be living with many other conditions
that aren't specifically linked to their dementia but add additional layers of
complexity, medication and even danger into their lives. Examples would include
asthma, arthritis, ME, osteoporosis, eczema (and other skin conditions),
coeliac disease and the many different cancers. Never forget also the
numerous individuals who live with chronic pain, given that we know pain is very poorly recognized and treated for people with dementia.
As
a person ages they are also at more risk of hearing loss and sight loss.
Macular degeneration, for example, can leave an older person blind. Coping with
that type of sensory loss when an individual has dementia is inevitably going
to make adjusting to losing your sight considerably more difficult, and
likewise will make living with dementia much more complex and potentially lead
to even more exclusion and loneliness. Equally, if joints like knees and hips
begin to wear out and need replacing, that can also be very difficult for a
person with dementia in terms of their ability to consent to an operation and
successfully complete the long-term rehab that’s required.
Dementia
can also lead to the development of other conditions, either though the
progression of a person’s dementia or because they haven’t received optimum
care – examples include: incontinence, dysphagia (swallowing problems), pressure sores (pressure ulcers), dehydration, malnutrition
and the many circumstances that can lead to temporary or permanent immobility.
Equally,
whilst being focused on the different physical conditions that a person with
dementia can develop, it's important to remember that there are many mental health conditions that can
live alongside dementia, and indeed sometimes be mistaken for dementia. Two
of the most common are depression and delirium.
Yet
despite all of the links that can be made very logically between multiple
long-term conditions we are not good at treating people holistically. The NHS is largely organized to treat individual conditions, but as our
population ages and more people live with multiple long-term conditions the
need for that holistic model of care will only grow.
Worryingly
then, I've heard of huge difficulties in providing care and support to people
who are living with diabetes and dementia. These are two of the most common
long-term conditions in the UK today, and the numbers of people living with
both are likely to increase, particularly with obesity levels rising.
Mismanagement of diabetes can have life-threatening consequences, and just
because a person has managed to keep their diabetes under-control prior to
developing dementia is no guarantee that they will be able to in the future as
dementia complicates their landscape.
The
challenges of caring for people who are living with dementia alongside other
conditions are huge. A person can forget why they need to take certain
medications, avoid particular foods or drinks or participate in certain tests,
all of which can adversely affect the management of conditions that they live with
alongside dementia.
One
of the great mantras of my work has always been that a person with dementia
will not be able to manage their dementia alone long-term. This is an even more
prudent comment when you consider the other conditions a person may have that
they require a family carer, alongside health and social care professionals, to
help manage and support.
Only
by treating and caring for a person in a holistic way throughout their entire
life with dementia can we truly hope to meet the aspiration of enabling them to living well with dementia. Whole-person care, as part of the more widely recognized
person-centred care model, is the only way forward. Expanding that to relationship-centred
care will also enable carers and families to be seen as partners in care and receive
the support that they need too.
Until next time...
You can follow me on Twitter: @bethyb1886
Please note: In 2015 the NICE/SCIE 'National Collaborating Centre for Social Care' will publish guidance on the Social Care of Older People with Multiple Long-Term Conditions. Find out more here.
You know that feeling you get after a meal when you've eaten
a bit too much and although you loved the meal you are wishing you had shown
a bit more restraint? Commonly known as indigestion, something I suspect all of
us have experienced at some point in our lives, it's usually easily remedied
and life resumes without giving much thought to our previously grumbly tummy.
Our digestion is one of the most complex and remarkable
systems in our body. It has always amazed me that it can take what we give it,
process it, extract what our body needs and eliminate what it doesn't. When it
works well it is what you might call a perfect ecosystem.
When it doesn't work so well, however, it has the potential
to seriously affect our quality of life. Sadly for a person with dementia, and
particularly as their dementia advances, this can create a myriad of problems
that at best will affect their sense of wellbeing and at worst can be a direct threat
to life itself.
Long before my father developed dementia he had a turbulent
relationship with his stomach. However, living with dementia brought with it a
huge array of problems for my dad's digestive system. At its worst he was
vomiting 'chocolate brown' - the terminology used to describe vomiting blood
from a bleed in the tummy. The cause of the bleed was most likely the aspirin
dad had been taking for years, prescribed to thin his blood to try and avoid more of the
clots that had manifested themselves as the mini strokes that had led to his vascular dementia.
At its mildest, dad's digestive problems were potentially
'just' indigestion. Without the ability to communicate, however, care staff often
missed the subtle signs of discomfort - rubbing the belly, facial expressions
suggesting pain, dad shifting in his seat repeatedly and
occasionally belching. Changes in bowel movements weren't so easily ignored,
but they could be misunderstood.
If a person with a history of runny stools is producing
runny stools that isn't unusual for them, providing it isn't with a frequency,
appearance or accompanied by other symptoms that suggest a more serious
problem. If they become constipated, however, that is unusual. Never is it
likely to be more important that you understand the person's history and
habits, and observe them closely, than it is with that delicate digestive
ecosystem.
During my father's time in care homes he was medicated with
laxatives one minute and then given bulking agents the next. Along with an
array of other regular medications (most of which were entirely unnecessary) plus frequent courses of antibiotics
(all of which listed stomach problems as a side-effect) I am quite sure his
digestion didn't have a clue what the hell was happening to it.
Other issues for dad's digestion came when he went through a
period of being unable to regulate how much food he needed, which had the
potential to lead to severe overeating, discomfort and vomiting unless it was
carefully regulated. For the last four years of his life he had a swallowing
problem (dysphagia, which I wrote about here), which meant a diet of pureed
food, unpalatable thickeners, repeated chest infections and a decline in his
gag reflect, which meant he would vomit regularly. He also became increasingly
at risk of dehydration.
Then, of course, there were the dreaded outbreaks of
diarrhoea and vomiting bugs in his care home, which always laid everyone low.
To dad's great credit and fortitude, he did well to maintain a fairly healthy
weight. Obviously as his dementia advanced and his physical health problems
increased his weight did gradually decline, but we tried anything and
everything to help him keep as much strength as possible.
The odds were largely stacked against us. Alongside
infections and the side-effects of medications came other problems. When dad
stopped walking, his digestion suffered greatly. Imagine having that
indigestion I describe in the first paragraph and being unable to get up and
move around to try and assist the digestive process? Digestive problems are
another key reason why supporting people to maintain their mobility for
as long as possible is vitally important.
Consider also how what someone consumes affects their
digestion. In a care home environment, you can't always eat your preferred food
at every mealtime. You may be given supplements to make up for a lack of
nutrients in mass-produced food, be subjected to additives including artificial sweeteners, and don't even get me started on the 'quality' of hospital food.
You may also be given foods that aren't friendly to your
digestive system. People can develop food intolerances at any stage of life,
and with a push towards high-calorie dairy products to help maintain weight, so
comes the possibility of a reaction to lactose. Certainly in my dad's case dairy
products became a major problem for him in terms of phlegm production, and how
this interacted with his dysphagia, all resulting in more vomiting.
Equally, consider how much gluten is included in most menus.
Coeliac disease can have serious consequences for a person's digestive system,
leaving them malnourished and at increased risk of stomach and bowel diseases,
even cancers, and will affect their absorption of nutrients, including calcium,
making osteoporosis more likely. You only then need a person to have a fall and
break a bone and the outcome can be premature death.
Diet and the consequences of it are also very serious for
people who have diabetes - a common long-term condition that many people live
with alongside dementia. For those individuals, the need to carefully regulate
their diet is vital to prevent a potentially fatal outcome. Dental health,
or lack of it, can also contribute to digestive problems if teeth are rotting
and poisoning a person’s body.
Even conditions like irritable bowel syndrome, that are very
common and yet poorly understood, require careful management to avoid 'problem'
foods and the possibility of severe pain and changes in bowel movements.
Indeed, the power of the digestive system is such that individual
'trigger' foods can be responsible for a whole host of problems, and not
necessarily directly related to digestion either - take for example migraine.
If you were caring for a person with dementia who had
limited communication, who had no history of migraines that you knew of and yet
began experiencing regular severe headaches, nausea and changes in vision, would
you consider their diet and digestion? Probably not, but keeping a food diary
might prove very enlightening if you need to eliminate food as a possible
source of their symptoms.
Part of the problem with digestion is that we just take it
for granted. We feel hungry, we eat, we go to the loo - at its best it is a
cycle of pleasure and relief that if it isn't giving us any problems we tend to
just ignore. Self-help is often the route to solving any digestive issues, but
as a person's dementia progresses that can become increasingly impossible for
them.
Understanding the delicate nature of the digestive balance,
the problems that can arise, and the effect they can have on a person's
wellbeing and quality of life - and at their most severe the person's will to
live - is vital to providing good quality dementia care. Alongside this it is
also important to keep in mind the effect of not just how the person feels
inside their body, but how they will feel if they have faecal incontinence and
are left sat in their own faeces, or indeed have vomited
and have been left with dried vomit on their body or clothes.
So next time you feel sick, have diarrhoea, are constipated,
have acid reflux or just have symptoms that can only be described as a sore
tummy, imagine feeling like that and being unable to help yourself or clearly
express your symptoms. Not a pleasant thought is it?
Until next time...
