I write this blog
on the cusp of September which is the 4th World Alzheimer’s Month, a
yearly international campaign to raise awareness and challenge stigma. Two
announcements in August, both around prevalence, have kept dementia in the
news. In case you missed them, here are the links: The Lancet
and Alzheimer’s Disease International.
I’ve written
before about my scepticism of dementia statistics. I am particularly
wary of prevalence data and the dreaded ‘predicted’ numbers of people expected
to develop dementia. I don’t feel the methodology behind many of these figures
is anywhere near as robust as it should be, and whilst numbers make great
headlines, I don’t feel they serve wider society well. In fact I’ve often
wondered why we see so many statistics on the numbers of people predicted to develop
dementia and yet so few figures for the numbers of services available, or the
availability and uptake of different methods for living well with dementia.
Last time
prevalence figures were revised downwards, I heard many whisperings of
discontent from those who either work within or on the periphery of English
dementia policy. It’s astonishing to consider that some people might not
welcome such data, however questionable the methodology behind it is, but then
dementia has been on an almost unstoppable bandwagon of negativity and doom and
gloom headlines ever since the PM’s Dementia Challenge ignited unprecedented
interest in the ‘D’ word.
The prospect
that less people than previously thought may now go on to develop dementia in
the UK is something to be applauded in my view, although I’m not convinced it
has anything to do with lifestyle modifications being made by the population. I
suspect these new predictions are just attempting to correct previously dubious
data. I’d love to think that the population are taking precautions to improve
their health by following preventative advice relating to diet, exercise
and lifestyle, but I personally don’t feel those messages are anywhere near as
embedded as they should, or need, to be.
Meanwhile of
course, the Alzheimer’s Disease International (ADI) report paints a picture of
increasing rates of dementia worldwide, and highlights how low and middle
income countries in particular are likely to be affected by growing rates of
dementia development in the years ahead. Without the health and care infrastructure
we enjoy in the UK (however fragmented it is), not to mention lower levels of
education and awareness, these predictions from ADI seem eminently sensible,
albeit offering a huge challenge to the global community to try and offer
people at risk of developing dementia, or already living with dementia, in
these countries a chance to live a better life than they might otherwise have
access to.
So how do we
unpick all of this and become more informed citizens? A good place to start is
by ignoring headlines that predict doom one day and a cure the next, and that play
the numbers game by quoting figures that may appear very authoritative but in
essence are based on what mostly amounts to some very complex analytical
guesswork. In the same way that the rhetoric of loss associated with dementia
and so avidly repeated in the media does nothing to
help families navigate their way with dementia in positive and practical ways. The recent 'Dementiaville' programme was a classic example – if they told us once that the families featured were losing their loved ones to dementia they told us a hundred times.
Looking back, I
suspect part of the reason why I was able to enjoy time with my dad in his latter
years with dementia, and look back so fondly on much of what we did together is
precisely because I didn’t inwardly digest statistics and negative portrayals
of dementia. In saying that, I don’t for one moment underestimate the impact
dementia has, it changed my father’s life and the lives of those around him in
immeasurable ways, but it didn’t consume me. Living and loving and taking each
day as it came was my coping strategy, not that I realised it at the time.
Whatever the
rate of dementia prevalence is in the years ahead, it won’t change the
fundamentals of living with dementia, and if cuts in social care services and
our over-stretched NHS are anything to go by, whether the predictions of
dementia prevalence are high or low doesn’t stop people being denied the care
and support that they need.
If anything we
should to be less hung up on numbers and more focused on people. We also need to
spend a lot more time and resources on those positive public health messages
that are designed to keep people healthier for longer, and an awful lot more
energy publicising and replicating some of the really great care and support
mechanisms for dementia that a few people have access to but that many others
do not.
Until next time...
You can follow me on Twitter: @bethyb1886
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
Statistics
drive health and social care policy. If a condition, disease, treatment or care
option doesn’t have a fairly alarming statistic attached to it, it is likely to be ignored.
Interestingly,
however, I’ve only really learnt this since I began doing the work I do now as
a Campaigner, Consultant, Writer and Blogger. In any year out of the 19 that my
dad lived with dementia, I couldn’t have told you the latest statistic on the
total number of people in the UK who were living with dementia. The best stat I
could have given you in the 8+ years that my dad lived in one of his nursing
homes is that the home could accommodate 60 people, all of whom were living with
a type of dementia.
Admittedly
my dad may well have been identified on GP registers as having dementia
(everyone with dementia should be coded as such on GP systems, but of course in
practice this is often either not done or is done inaccurately). Also, as
someone receiving social care he may well have been part of a statistic related
to numbers of older adults in care homes. In both instances, however, I can’t
say with certainty as relatives aren’t involved in these processes.
What I
can testify is that when you are caring for a loved one with dementia, life
feels considerably more compact than the vastness associated with national
statistics. It’s pretty much just you, your loved one, and any wider network of family
and friends that you may have. If your loved one is attending a support service or
living in residential care you’ll be meeting a few other local people in a
similar position to you, but that is pretty much as big as the picture gets for
most people.
Since
my dad passed away, plenty of statistics have be published, revised and
republished. We now have the Dementia Map for members of the public that reports figures on care, support and research across England, the Dementia Prevalence Calculator for clinicians, and with the launch of the PHE Dementia Intelligence Network, we can expect far more statistics to be produced
in the future.
The
latest figures published by the Alzheimer’s Society earlier this month on the prevalence
of dementia tell us that:
By the
2015 General Election 850,000 people will be living with dementia in the UK. By
2025 that number is expected to rise to 1,142,677 – more than the entire
population of Birmingham, the UK’s second largest city. And by 2051, the prediction
is that 2,092,945 people will be living with dementia – that’s more that the
populations of Liverpool, Manchester and Birmingham combined.
225,000
people develop dementia every year, which equates to roughly one person every three
minutes.
Currently, 1 in 688 people under 65 have dementia, 1 in 14 people over
65 have dementia and 1 in 6 people over 80 have dementia.
Every
single one of these figures are of immense importance to the people charged
with planning services, but I question how much translation really happens
between the figures that get published in reports and the real-life experiences
of people who are living with dementia and their families.
The
problem with relying on very broad statistics is that they don’t tell the whole
story. They give you a number of people, but what they don’t tell you is how to
provide individualised care and support throughout each person’s years of
living with dementia. In other words, they don’t tell you anywhere near enough
about the lived experience.
I
acknowledge that polls are conducted to inform us with more practical
information. For example, in the Alzheimer’s Society report ‘Dementia 2014: Opportunity for Change’ we learnt that:
61% of
people with dementia had felt depressed or anxious recently, 40% had felt
lonely recently, 52% felt that they did not get enough support from the
government, 34% did not feel part of their community, 28% are not able to make
decisions about how they spend their time and 18% felt that they were not
living well with dementia.
However,
these figures came from a sample of 1,327 people, all of whom were in-touch
with the Alzheimer’s Society and presumably had received some level of support.
In my dad’s 19 years of living with dementia I can confirm that I was never
asked to complete any national surveys – the only surveys I had were from his
care providers, CQC and their predecessor organisation CSCI, to find out how
satisfied we were with the care dad was receiving.
If we
as an incredibly involved, pro-active, supportive and loving family never had
any personal input into gathering UK-wide dementia-related statistics during my
dad’s lifetime, then I wonder how many other people who are living with
dementia and their families are falling through the statistical net? It would
also be worth noting that we never had any support from any dementia charities
during my dad’s dementia – I wonder how true that is of other families in 2014?
Granted
much has changed since my dad was alive. Improvements have been made to
services and support, and awareness has grown significantly since the Prime
Minister’s Dementia Challenge. If you are in-touch with modern-day dementia services then you
are potentially going to have a far greater chance of living well with
dementia. The point is, however, a lot of people aren’t in touch with those
services.
Pretty
much every person I talk to about dementia (which is a routine occurrence not
just in my work time but when I’m out socialising and enjoying recreation) knows
very little, or absolutely nothing, about the services and support available to them. It is so common place that I now have a growing compendium of links for
distribution! This only backs up my concern that while we paw over the ‘big
picture’ statistics, families all over the UK are flailing in the darkness,
unsure of what a diagnosis of dementia means and how they will cope in the
years ahead.
So my
message to the policy makers is this: by all means gather statistics, gather as
many as you feel you need, but don’t run away with the assumption that as
things stand they tell you the whole story about dementia because they don’t.
My dad lived with dementia for 19 years, accessed numerous services and received
care that cost an untold amount of money, yet the only national statistic I
ever knowingly contributed to on his behalf was the one that recorded
‘dementia’ on his death certificate (and that only happened because I insisted
I wanted dementia specified). A bit late to help him live well then.
Until next time...
You can follow me on Twitter: @bethyb1886
