Last week
statistics were released showing that during the last year 22,000
people took part in dementia research – a 60% rise - and that 10,000 people have signed up to Join Dementia Research.
Research isn’t a
topic that I’ve written about extensively, which perhaps isn’t surprising given
that I’m not a scientist or an academic. That doesn’t mean I have no interest
in it, however. Aside from the very obvious personal feeling I have that I don’t
want others to go through what my dad went through (particularly in the latter
years of his dementia), I am an ambassador for dementia research charity BRACE,
whose work I am constantly in awe of, and I write and speak extensively about
the fact that, in reality, we actually know alarmingly little about dementia.
This lack of
knowledge has many causes, which include the historic lack of focus on
dementia, the even greater lack of money put into dementia
research in the past, and the sheer complexity that the many forms of dementia present
to even the most scientific or academic brain. Studies have started and never
produced results, and in terms of pharmaceuticals, drug trials have been
abandoned due to unforeseen circumstances – for example drugs not producing the
effects expected or unacceptable side-effects.
I have never
been a person greatly influenced by the work of pharmaceuticals, although I do acknowledge that many people are supportive of the current
(limited) drugs that are available and of course any new breakthroughs – like for example Eli Lilly’s Solanezumab drug announcement at the recent Alzheimer’s Association International Conference – are of course to be welcomed if indeed there is widespread
benefit to be had for people with Alzheimer’s Disease in the future.
This is,
however, such a tiny part of the overall picture. With so many different forms
of dementia, and different nuances in how each person with a particular form of
dementia experiences their symptoms, there is so much more that needs to be determined
before we can honestly say that our understanding, and treatment for, the many
different types of dementia has progressed to the point that we have reached
for the many different types of cancer.
With that in
mind, any increase in the numbers of research participants is extremely
important, and I suspect is largely down to the profile dementia now has that
it simply never had in the past. So what are the benefits of being involved
in dementia research?
For people with dementia:
Many people I
know who are living with dementia have actively sought to be involved in
research. These individuals often describe involvement in research as an opportunity to
feel useful, to be proactive after diagnosis and with the potential to make a difference to the
lives of others now and in the future.
For families of people living with dementia:
Because a
diagnosis of dementia impacts far and wide beyond the person with the
diagnosis, many family members feel they want to do something that helps them
to contribute to the wider understanding of dementia. Some people also view research as an opportunity broaden
their own knowledge.
For society as a whole:
As dementia
seeps into the public consciousness like never before, more individuals are learning about dementia and recognising that, as the numbers of
people being diagnosed increases they, or someone they love, may also develop
dementia in the future. To be able to help improve understanding and
treatment is a powerful motivating factor.
So much of
research really is about the future, and future-proofing health is often in the forefront of the minds of both researchers and participants, but I would sound
a note of caution. While we think about improving health for the
future, and ideally finding the treatments and potentially even cures for the
different forms of dementia, we must never forget the people who are living
with dementia NOW.
Their needs are
as important as our own need to avoid developing dementia in the future, and
research into living well, lifestyle strategies, non-pharmacological therapies and
care and support that focuses on improving quality of life is what is likely to
benefit these individuals the most. I recall when my dad was alive, and
particularly in the latter years of his dementia, the headlines about research
‘breakthroughs’ pretty much went over my head. They were utterly irrelevant for
dad, who was my primary concern at that time, and although I don’t in any way
dismiss genuine breakthroughs now, I have an equally strong sense that helping
people in the future doesn’t mean we
neglect those living with dementia in the present.
Research for
people living with dementia now, people living with dementia in the future, prevention
of dementia and the many different aspects of treatment and care needs to be as
broad as the participants signing up to participate in dementia research. That,
for me, is the blueprint for a dementia research strategy that is befitting of the
task ahead of us, and one that also does justice to the many people, like my
dad, who have lived and died with dementia.
Until next time...
You can follow me on Twitter: @bethyb1886
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...
