Monday 29 September 2014

Falling through the statistical net

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...
Beth x

You can follow me on Twitter: @bethyb1886

Monday 15 September 2014

Living with dementia as a younger person

In amongst the figures announced recently by the Alzheimer's Society on the scale and cost of dementia in the UK, the data on the numbers of younger people developing dementia was particularly notable. It is estimated that 42,325 people are now living with younger-onset (early-onset) dementia, a number considerably higher than previously thought. Given the problems younger people often have around obtaining a diagnosis it is probably safe to say that the actual figure could be even higher.

Dementia is traditionally associated with older people. That is the prevailing view amongst the general population, and in truth little has been done to dispel it. Occasionally there will be a newspaper or magazine article about an adult under 65 with dementia, and rarer still a child with dementia, but such coverage is often more sensationalist than really educational.

We know that dementia remains stigmatised generally, but if you are a younger person with dementia that stigma is likely to be far more significant. We know too that there aren't enough good quality, personalised and responsive post-diagnostic support services for people who are diagnosed with dementia - again, if you are a younger person that dearth of support is potentially even greater. 

It is well documented that carers of loved ones with dementia generally don't have anywhere near enough support to carry out their caring role. However, that situation can even more acute if your loved one is younger and your family is plunged into a completely different type of crisis around jobs, housing and the care of under-age children. It is also worth noting that dementia in younger people often progresses quicker than for older people. That isn't always the case, and many younger people live well with dementia for many years, but such wellbeing is usually in spite of rather than because of the level of support and care that they are offered from their local health and social care systems.

Issues around the progression of dementia are challenging enough, but adding in the potential requirement for residential care makes the picture even more complex. Many families find it difficult, if not impossible, to source a high quality care home that specialises in caring for younger people who are living with dementia. Mostly the only option is aged care, where a person in their 50's could be living with people in their 80's and 90's with very little in common in terms of hobbies and outlook.

Combine the factors of increased stigma, inadequate post-diagnostic support, challenges for family carers, likely progression of younger-onset dementia, and the lack of specialist residential care together and there is absolutely no doubt that if you are a younger person who is living with dementia you are facing numerous obstacles to living well. Even many of the therapeutic products that have been developed to help individuals who are living with dementia are based on reminiscence of eras that will mean little to younger people.

There are numerous societal pressures too. Because most individuals don't understand that younger people can develop dementia, if you are a younger person with dementia you face being disbelieved when you disclose your diagnosis. You may well become more isolated because friends of the same age cannot comprehend your diagnosis, and if you are working and find that your employment ends you can face huge financial pressures around paying your mortgage etc.

Your local services, if you have any, are generally aimed at older people (be they day centres, singing groups or dementia cafes), although there are some notable exceptions which I will cover at the end of this blog. Vital connections into peer support and international mentoring are often not made at the point of diagnosis, and so isolation is further compounded, added to by difficulties in travelling if your driving licence is taken away.

To say that the UK is badly failing younger people with dementia is something of an understatement. Why this group of people have been ignored for so long is, I suspect, due to that prevailing societal view that dementia only affects older people. If that is the case, then these latest figures should be a big wake-up call to our politicians and policy makers. Whilst specialist services may not be cheap, the cost of providing nothing is far greater, both for the health service and for every single family affected by younger-onset dementia.

Whilst the powers that be mull over that prospect, I couldn’t write a blog post about younger-onset dementia without mentioning some of the inspirational individuals and organisations who are leading the way for younger people with dementia. In their own way each challenges the stigma and discrimination faced by younger people with dementia, and together they form a powerful, collective voice. I hope that through them not only will society learn more about living with dementia generally, but that the particular needs of younger people living with dementia become better understood and more comprehensively addressed.

For anyone who is UK-based, there are a huge amount of resources on the Young Dementia UK website, including a regional breakdown of specialist support services for younger people who are living with dementia: Young Dementia UK also have a list of blogs written by people who are living with younger-onset dementia, including Kate Swaffer and Chris Roberts, two very active campaigners for the rights of younger people who are living with dementia:

Although not exclusively working in the field of younger-onset dementia, I would also recommend checking out Dementia Alliance International, and the work of Norman McNamara, Innovations in Dementia and Dementia Mentors.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Monday 1 September 2014

Can we reduce the risk?

September is World Alzheimer’s Month (#WAM2014), an international campaign to raise awareness and challenge stigma that is led by Alzheimer’s Disease International. For 2014, the focus is on ways to reduce the risk of developing dementia with brain friendly lifestyles.

Reduction and prevention of dementia are two very interesting topics. Ever since I began this blog and my wider work, I’ve met people from all walks of life who’ve heard my dad’s story and then asked me what they can do to ensure that they don’t develop a type of dementia.  Based on that, you’d assume that it would be something I’d have written about extensively, but reduction and prevention of dementia don’t seem to make for very popular copy.

In 2012 I wrote ‘Five-a-day to keep dementia away?’ and aside from touching on prevention and reduction in relation to other areas of dementia policy and care, that is the sum total of my writing on these topics to date. It seems that when I’m actively involved in face-to-face discussions, people are genuinely interested in any tips I might have that could help them avoid developing dementia, but there isn’t much appetite for reading about it, despite the fact that dementia is said to be the most feared disease for the over 50’s.

The people who are most actively interested in preventative advice are usually those who’ve been so deeply personally affected by a particular disease that they would do anything to avoid either developing it themselves or seeing other family members living with it. That is certainly true for us as a family. 

My childhood was full of general messages about healthy lifestyles, all of which have stood me in very good stead as an adult. Those messages weren’t linked to avoiding dementia, it was just good advice. Only in the aftermath of my dad’s diagnosis did my mum ask one of his consultants what measures she could take to try and avoid developing dementia. The advice, for what it’s worth, was to take Gingko Biloba.

Gingko, like everything from coconut oil to vitamin D, has been linked to reduction and prevention of dementia. I don’t want to get into the science behind the various claims and counterclaims – I would argue that anything healthy at moderate levels is the common sense approach, but I am not medically or scientifically qualified to take that theory any further.

Ultimately, of course, we are all responsible for ourselves. Prevention of any disease comes with it elements of sacrifice. No one has ever said that eating rubbish, drinking to excess, smoking 50-a-day and never taking exercise is good for you. Some people may be able to go through life like that and live to a ripe age without a complaint in the world, but most of us can’t, and who wants to take the risk that they are in the majority? Sadly far too many people it seems.

Moderation is necessary in all things related to lifestyle, along with education, common sense, an immunity to persuasive advertising campaigns and a basic sense of responsibility to yourself and your loved ones. From the perspective of a healthy lifestyle, this translates in very general terms to:  

  • Eating a little of what you fancy does you good, but a lot is likely to give you problems. If it comes out of a packet rather than out of a field, be particularly suspicious.
  • Most people can enjoy an occasional social drink without any problems, but anything beyond that will probably be killing off too many brain cells. In other words, a glass may be ok, but a bottle isn’t.
  • If you were meant to smoke, you would have been given a chimney in your head (a gem from my parents that was regularly mentioned around the meal table during my childhood – to this day I have never even tried a cigarette).
  • Humans were designed to exercise, and as much as some of us may dislike it (myself included!) we are sadly going to have to accept that fact and find something active to do that makes exercise as enjoyable as possible (and let’s face it there are LOADS of options, disliking the gym isn’t an excuse.)
Ultimately healthy genes and a good standard of living where you are knowledgeable, in decent housing, not living in food poverty and have access to outside spaces for recreation are also necessary, it’s just that they are rarely talked about because they touch on big social issues that aren’t entirely comfortable for policy makers. 
On a personal level, the most precious skill my parents (mostly my mum) ever taught me was the ability to cook (the joy of cooking with my dad’s home-grown fruits and vegetables was a particular highlight). Making healthy, nutritious meals is the sort of daily life skill that many adults who live off of processed and packaged food would benefit from, and I count myself exceptionally fortunate that I love cooking. That early education from my mum and dad is the essence of good parenting. I was very lucky – others sadly aren’t.
I predict that during this year’s World Alzheimer's Month we will see a lot of coverage given to the idea that ‘What’s good for your heart is good for your head’. A great slogan that is yet to really seep into the public consciousness, but maybe September 2014 is the month when some real traction will be given to the vitally important and still greatly neglected reduction and prevention agenda.
World Alzheimer's Month 2014 - Graphic from Alzheimer's Disease International

I love this graphic from Alzheimer’s Disease International for #WAM2014 with five great tips that we can all try to achieve:
  • Look after your heart
  • Be physically active
  • Follow a healthy diet
  • Challenge your brain
  • Enjoy social activity
For my part, I’m going to start my latest exercise regime – trying to meet the NHS target of 150 minutes of moderate-intensity exercise a week with additional muscle strengthening exercise. I’ve failed with so many exercise regimes, but with renewed enthusiasm I will try to get fitter and reduce my own risk of dementia and other health problems.
Carpe diem – Seize the day!
Beth x

You can follow me on Twitter: @bethyb1886