Monday 31 August 2015

Playing the numbers game

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...
Beth x

You can follow me on Twitter: @bethyb1886

Monday 17 August 2015

Researching dementia

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...
Beth x

You can follow me on Twitter: @bethyb1886

Monday 3 August 2015

Holiday season

August in the UK is traditionally seen as the holiday month. Apart from the fact that most families with school-age children are restricted to holidaying at this time of year due to education regulations, there seems to be a mass desire to ‘get away’ in what is meant to be the height of the UK summer.

With this holiday season in mind, I thought it would be apt to explore the idea of holidays, past and present, in the context of people who are living with dementia. Vacations are seen as one of the most positive and enriching aspects of life from childhood to retirement, but how do they fit with the stigmatisation of dementia?

People who are newly diagnosed:

One of the aspects of life that people often feel will have to end once they are diagnosed with dementia is going away on holiday. Holidays are frequently seen as the preserve of the young and people who are healthy and retired, while many people with dementia are subjected to Prescribed Disengagement™ (as described by Kate Swaffer, a lady living with dementia) upon receiving their diagnosis.

Of course we’re all different, and holidays aren’t for everyone. Certainly my dad, a man who never travelled beyond the UK and even then was reluctant to ever go to new places, would have viewed a holiday as an endurance rather than a pleasure, but if you’re a person who enjoys going on holiday a diagnosis of dementia isn’t a reason to stop doing what gives you pleasure for as long as you feel able to continue with that.

The challenges of change when you’re on holiday:

As much as a person with dementia and their loved one(s) might want to go away on holiday, there is often anxiety on both sides about how the vacation will work out. Routine is very important, indeed vital, for many people with dementia, and holidays are naturally a break with that, although depending on the type of holiday you choose you might still be able to keep some familiar routines.

Other concerns are often around travelling arrangements and time spent travelling, differences in living accommodation (layout/comfort/design), the geography of the local area and the availability of familiar foods. Sleep patterns can also be disturbed in unfamiliar environments, and changes in temperature/climate can be problematic.

To help avoid conflicts and upsets, it’s important to understand what each person on the holiday wants out of it and think about where you are going to go very carefully. Choosing a venue that is used to supporting people with dementia and their loved one(s) should help to minimise problems and give you the peace of mind to look forward to your holiday. 

Some suggestions of such venues are here: (Please note this link is provided for information, and should not be seen as an endorsement of any particular venue or activity). For additional options, it’s always worth investigating assisted holidays for people with disabilities – it may not seem like an obvious internet search, but some companies that support people with physical disabilities may also have the ability or contacts to support people who are living with dementia.

'Respite' / carer breaks:

There is a perception of ‘respite’ for family carers that is characterised by the person with dementia going into care while their family carer(s) go away for a break. Whilst this may be a model that suits some families perfectly, it is important to recognise that other families want to do things differently. They don’t necessarily want to be separated from their loved one and instead want to be supported to go away as a family.

This is just another example of where a one-size-fits-all approach really doesn’t work, and the individual needs and wishes of families have to be explored and wherever possible supported and facilitated. Many of the holiday venues I’ve listed above do exactly this, and hopefully we’ll see many more examples in the future.

The cost:

Cost is a significant factor for most people when they are looking at taking a holiday, and many of us save for many months or even years to afford to go away. Such saving doesn’t always fit in with the unpredictability of dementia, however, and many people who are diagnosed feel an urgency to fulfil some of their travelling dreams while they are still at the height of their cognitive powers.

Other cost considerations when a person’s dementia is more advanced can be around paying for professional care, or taking a larger than usual family group on holiday so that relatives can take turns in providing more intensive care and support.

In addition, given that dementia care comes under the umbrella of social care, which in the UK is means tested, many people may simply not be able to afford to have a holiday because all of their income/savings have been spent on modifications to their home or professional care fees.

Reminiscing about holidays:

Even if health or financial factors prevent a person with dementia taking a holiday, it doesn’t mean that the many positive aspects associated with holidays have to be abandoned. Reliving past holidays through photographs, family videos, scenic pictures hung on the wall, exotic cuisine or music that is synonymous with vacations gone by can all help to engender a holiday spirit. Think too about textures and sounds - sand, rocks and wave sounds might help to prompt reminiscence about trips to the beach.

A few care homes I’ve visited have gone even further, creating beach ‘installations’ complete with deckchairs, sand and sea pictures, and some are regularly visited by the ice-cream van selling the traditional 99p cone with vanilla ice-cream.

Of course nothing will replace the excitement, discovery or relaxation many of us experience when we go away on holiday, but keeping memories alive when going away is no longer possible can still help to engender some of the feel-good factors associated with holidays.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886