I need you

In my 2013 blog post ‘What is dementia’ I focused on the symptoms of dementia, noting the following amongst my very long list of ways in which a person can be affected by dementia:

“An increasing need for reassurance (someone who was previously independent becoming clingy or losing confidence), or a need to be constantly reminded about things”

Back then, I wasn’t aware of the phrase ‘trailing’ or describing a person with dementia as ‘following’ others around. I literally just thought of the need to be close to someone you trust as a need for reassurance.

However, watching the recent BBC Documentary ‘Granddad, dementia and me’, the phrase ‘obsessed’ was used repeatedly to explain Tom (who is living with vascular dementia) needing to be close to his wife (and carer) Pam. Tom’s need to be constantly with Pam had, for Pam, got to a point where she needed some time away from Tom.

The film throws up numerous issues which I will explore in my August D4Dementia blog, but I think the need Tom had to be close to Pam, and the effect on Tom and Pam's wellbeing when they were happily reunited towards the end of the documentary, is a really interesting one.

From the perspective of a spouse or family member, if you are used to your loved one being fairly independent, the way in which dementia can leave a person without the confidence to be on their own can be difficult to understand, adjust to or successfully support. Many spouses or family members end up feeling suffocated and like they haven’t got a minute to themselves. This was very strongly portrayed in ‘Granddad, dementia and me’ which in the early part of the film really made Tom look - to someone without a good understanding of dementia - like he was a nightmare to live with.

Look behind the visuals a TV camera provides, however, and the story is a different one. Firstly, the changes in his brain caused by his vascular dementia (the same type of dementia my dad had) weren’t Tom’s fault (even with risk reduction, no one is guaranteed to not develop a type of dementia). These changes were even more baffling for Tom than those around him – unless you are a person living with dementia, you cannot possibly understand exactly what it feels like to be a person who is.

When things are happening to us that we don’t understand, the natural human tendency we have from birth is to gravitate towards someone who is familiar, who we trust, find comfort with and love. We want to know that everything is ok. And if we have an unmet need that we cannot articulate, the natural reaction is to search for someone who might be able to interpret this, which is most likely the person we are closest to in our life, usually our spouse if our parents are no longer around.

In parenting, this is a given. As mums and dads we accept and expect that our young child will seek us out when they need us, particularly if they don’t have the language to articulate their needs or the ability to meet them independently. Indeed, clinginess in a young child is otherwise known as the child seeing you as a ‘secure base’, with separation anxiety accepted as a natural part of child development.

I appreciate that in marriage this isn’t a given – you marry an independent adult and expect them to remain that way. But there is another way of looking at the reassurance a person with dementia needs from the person closest to them – You are their ‘secure base’. It is a mark of how strong your bond is that you are the person that your loved one needs to be closest to.

I’m not for one moment suggesting an adult with dementia is now a child – they remain an adult regardless of their cognitive impairment. But the narrative and attitudes we have towards happy and successful parenting, and the narrative and attitudes we have towards supporting a person who is living with dementia, are poles apart and children are definitely getting the better deal!

That is not to in any way undermine the huge efforts made by families around the world in caring for their loved ones who are living with dementia. I was appalled at the criticism of Pam and her family – yes, we can all spot mistakes from the comfort of our sofa, but when you are living the experience it is very different.

What I wish is that Tom, Pam and their family could have been shown receiving really proactive support to ensure that they could give Tom what he needed. The film showed that medicating Tom wasn’t the answer, and two periods as a mental health inpatient (including sectioning – my views on sectioning are here) didn’t help.

So what is general good advice for any family whose loved one wants to be with them 24/7:

Occupation and activity

One of the major features of the first part of Tom's film is how little he had to occupy himself with. He was never shown to have any responsibilities or daily tasks, meaningful occupations, hobbies or activities that he enjoyed – not a healthy situation for a person who’d been a high-achieving, hardworking businessman.

 

That is not to say that everyone who lives with dementia will feel motivated to do things, my dad certainly went through a period when he refused to do anything except watch TV and look at books, and many people with dementia develop depression alongside their dementia which can also contribute to not wanting to do anything, but presenting those opportunities and making them a consistent part of every day life is vital.

 

Disabling people when they still have capabilities is a disaster. Not realising the person still has capabilities is a double disaster.

 

Do things together

So, you might think that ideal occupations and activities are ones that the person does alone, but think again. The person may not know how to begin, let alone successfully complete, a task. Doing things together not only means you being able to guide the person, but it enables the person to model what you are doing – it’s a subtle activity that is often wordless, and may happen without you even realising it as the person watches and copies you. A simple but vital way to boost the person’s independence without them having to acknowledge ways in which they are struggling.

 

Get your environment in order

If the person can’t remember their way to the bathroom or the kitchen, they are more likely to rely on following you to find their way. Some dementia friendly signage and simple design changes can all help to augment the person’s independence – see the world-leading dementia design work from Stirling University for tips and ideas.

 

Be the voice of confidence and reassurance

You may well be tired of telling your loved one "You can do it", but dementia is a very big voice in a person’s life that, essentially, is trying to hold them back, making the person insecure, vulnerable and lacking in confidence. As the most trusted person in your loved one’s life, you have the ability to stop that juggernaut in its tracks (temporarily at least) by being a constant source of support, confidence and reassurance. As the Bette Midler song goes:

 

Did you ever know that you're my hero,

And everything I would like to be?

I can fly higher than an eagle,

For you are the wind beneath my wings

 

Accept the unsaid

Hard and exhausting though the need for constant reassurance and company may be, accepting three little words – that will most likely never be said out loud - can be transformative for your resilience.

"I need you" is what your loved one’s quest for reassurance and confidence is really saying. Take it from someone who was once that needed person, it may be hard at the time but it’s harder when you are no longer needed.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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The art of gentleness

Earlier this month I found myself in the honoured position of being a judge for a care awards event. As judges we had six categories to review, and there were some amazing testimonies of the care and support dedicated social care staff had given.

Amongst the many pieces of supporting evidence we reviewed, one short testimony from a lady who was 101 years-old made me think. She commented on how this particular care worker was, "Very gentle and caring."

It struck me instantly that we don't talk anywhere near enough about gentleness as a quality. It’s perhaps taken for granted, a 'given' that everyone providing care and support will be gentle, but gentleness has many facets, and can mean many different things to different people.

My idea of gentle and yours may be very different. How a sensitive person, who feels pain easily, might interpret gentleness is going to be different from a person with a high pain threshold who's always been pretty tough with themselves, perhaps from doing a hard physical job.

How health and social care professionals interpret gentleness is also going to vary immensely. Someone might believe they are being very gentle, when in actual fact the person in receipt of their care or support may feel very differently.

Sometimes gentleness is lost when time is short, there are multiple tasks waiting to be done, our minds are elsewhere, or if a person we are trying to help is verbally or physically unhappy with us. None of these are excuses, just the facts facing many professionals.

In training, gentleness is rarely mentioned. We talk about being person-centred, about compassion and kindness, but gentleness is mostly just assumed. Can gentleness be taught? If you mentor someone with the right aptitude and values closely enough, showing them what a gentle touch and gentle movement is, then some element of learning can happen, but you cannot physically become someone else’s hands so there will always be an unknown quantity of how gentle that person is actually being.

But of course gentleness isn’t just about the physical, however much it is associated with our actions and how we utilise our own physical strength. Gentleness in how we speak, behave and respond emotionally to a person is absolutely vital, but even less thought about than physical gentleness. A short, sharp response to someone, perhaps because we’ve answered their question numerous times already today, or an insincere tone in our voice can hurt someone who is emotionally sensitive.

Emotional sensitivity may exist because the person has always been predisposed to it or because they have an existing mental health condition. It may be a one-off because they are a having a bad day or it may be as a result of living with dementia. Whatever the cause, however, the need to be gentle on the mind is ever-present.

One of the wonderful things about us as human beings is our ability to feel acute emotional responses. Granted, it can be a double-edged sword, but it also opens up a world of feelings that is virtually limitless. When we provide care and support for a person, it’s crucial to be aware of everything about our approach, and consider not just what we say, or don’t say, but also how we say it.

Much like physical gentleness, we may not see anything wrong in snapping an answer, gesturing dismissively with our hands, or responding to a request with delaying tactics (for example, asking the person to sit and wait rather than address their need) – after all people do it to us and we don’t think anything of it. But these are not examples of gentleness, and the person on the receiving end may feel hurt, unwanted or unimportant.

Vitally, these feelings may not be visible to us, therefore we may not even consider that we’ve caused them. One of the great problems with the abandonment of gentleness is that its effects are often completely unseen. They strike at the heart, but the most sensitive people who experience them will often keep them locked in their heart. The result is as harmful as a lack of physical gentleness, just without the bruises to prove it.

I would urge everyone working in health and social care to consider what gentleness means to them. When you think you are being physically gentle, try and go down a notch or two more on the gentleness scale, being even more gentle than you have previously been, and see how the person responds – they may be more comfortable, happier and more secure in your company.

To be gentle on the mind, take a moment to think about your interactions. Draw breath before you dive in with whatever you were going to say or do. And never assume it is only women as the ‘fairer sex’ who need physical and mental gentleness. Men do too, particularly when they are more vulnerable as a result of living with dementia.

Until next time (which will be my 200th D4Dementia blog!)...

You can follow me on Twitter: @bethyb1886

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Harnessing the power of observation

I feel very strongly that one of the most important attributes anyone providing care and support to a person with dementia can have is the ability to observe.

In our helter-skelter, multi-tasking lives it’s easy to lose the quietly reflective quality of observation. Observation cannot be rushed, cannot be combined with anything else if it is to be truly effective, isn’t remotely technological, and may seem both outdated and old fashioned. Surely we need to be stepping in and ‘doing things’ to be providing optimum care and support – right?

Wrong! When you’re providing care and support for a person with dementia, whether you’re a family carer or a care worker, stepping in may well be the worst thing you can do. Of course we need to protect a person with dementia who might walk in front of a car, or burn themselves on the cooker, but in the vast majority of day-to-day circumstances talking a step back can be infinitely more helpful than getting involved.

One of the biggest problems people caring for a person with dementia often site is difficulties understanding the person. Those difficulties mostly arise because of limited or confusing verbal communication – the person with dementia is trying to articulate something, but the person listening to them cannot understand what they need or want.

Often the person providing support will then step in, make assumptions, and undertake an action that they think is needed. Sometimes they may have made exactly the right call, particularly if they are a family carer who has deep personal knowledge of their loved one or a care worker who has built up a really positive rapport with the person, but on other occasions the situation can rapidly unravel.

What then results is that the person with dementia doesn’t have their needs met (which is mistaken for them displaying ‘challenging behaviour’, something I wrote about here), and a vicious circle of frustration ensues for all concerned. With more finely tuned observation skills, it’s possible that such an unhappy episode could have been avoided.

Everyone who is providing care and support for a person with dementia wants to have that deep personal knowledge of the family carer, or the positive rapport of the studious care worker that I describe above. To get those levels of knowledge and rapport, however, involves many different skills, of which observation is a crucial one. 

Granted the family carer often has the benefit of years, if not a lifetime of knowledge about their loved one which, incidentally, is why family carers are so immensely valuable in society, but someone without that knowledge, like a health or care professional, can help themselves and therefore the person with dementia just by understanding the power of observation and interpreting the learning that comes from it.

One of the most widely recognised methods for enhancing dementia care, ‘Dementia Care Mapping’ from the University of Bradford, has observation as a founding principle. In CQC inspections, the 'SOFI tool’ is widely used – this was also developed by the University of Bradford and again is founded on observation. Meanwhile, observation features in the 10 facilitation skills that is part of the ‘Great Interactions’ training given to the staff employed by one of my consultancy clients, MacIntyre. 

So, far from being outdated or irrelevant, observation is actually a vital tool. It literally opens your eyes to what is really happening with a person, and is invaluable when a person’s dementia progresses and you need even more finely tuned skills to help provide them with optimum care and support. The reason it doesn’t feature in care settings as standard practice is that it is time consuming.

We all know how over-stretched social care staff are, and many providers simply do not staff their shifts to allow care workers to take time to observe and reflect upon what they are seeing. Budgetary constraints really are the enemy of observation, as is the need to ‘look busy’. You simply cannot ‘look busy’ if you are observing a person carefully and accurately.

What you are likely to learn from observation is immense, however. Good observation skills can tell you how a person is feeling, what they want or need and how you can best respond to them. It can also give you clues to their personality, their likes and dislikes, and the ways in which you can seamlessly integrate yourself into their life without being obtrusive, interfering and controlling. 

Observation is fantastic at promoting independence, but the very essence of good observation is about watching rather than doing. We are far too fond of doing things to or for people, without giving them the space and time to potentially accomplish those tasks themselves, or indeed go some way towards accomplishing them.

What observation isn’t is the tool of those who want to stare at a person with dementia. People with dementia deserve dignity and respect, not to be treated like exhibits in a zoo.  Observation should always be discreet, and with a clear objective of improving your understanding of the person with dementia to optimise their care and support.

Equally, observation isn’t the tool of the individual who doesn’t want to help a person with dementia who is in distress or struggling to accomplish something and becoming rapidly more frustrated and unhappy. It should never, ever, be used as a weapon of torture, where you are deliberately leaving the person to ‘get on with it’ regardless of whether they are able to do that or not. 

Making that judgement call is largely about the personality of a person in a care or support role. Those who observe most effectively are kind, compassionate individuals who instinctively know when to observe, how to reflect on that observation, and crucially when to intervene.  To some extent that judgement is also influenced by the culture of any organisation that person is working for. If the culture of the organisation encourages its workforce to observe, learn, reflect and adapt, and recruits workers with the values I outlined above, then observation becomes a regular, seamless part of the care and support being provided. 

What applies across the board, however, is that without observation a person with dementia will never be truly understood by those around them, their care will not be person-centred, and they will not have the freedom to express themselves or exercise their independence. That, I’m sure we could all agree, isn’t a life anyone would choose, so next time you’re with a person who has dementia think about how effective your observation skills really are.

Until next time...

You can follow me on Twitter: @bethyb1886

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The ‘stages’ of dementia

I had a very refreshing conversation recently with someone running a care company about the 'stages' of dementia. In this person's view, the way in which the medical model defines dementia by different stages isn't helpful for a more human understanding of what dementia really is and how it progresses. Unsurprisingly, I agreed.

The stages of dementia are generally defined as follows:

Mild/Early Stage: Characterised by the onset of a range of dementia symptoms – these could be anything from memory loss to confusion. I describe some common dementia symptoms in my blog post ‘What is dementia’. This is generally considered to be the stage at which dementia should be diagnosed.

Moderate/Mid Stage: Symptoms experienced in the mild/early stage are increasingly severe, and changes in behaviour can become more marked and difficult to cope with, both for the person with dementia and those caring for them. If a person is diagnosed at this stage, it’s considered by many medics to be a late diagnosis.

Severe/End Stage: This stage is characterised by further deterioration of previous symptoms, but is particularly marked by physical frailty – for example the person may become immobile, incontinent, have swallowing problems, experience weight loss, be at an increased risk of infections, and have severely limited or non-existent verbal communication.

I've actually never been a fan of compartmentalising, which is how I see the concept of stages in dementia. For me it's fraught with problems for the following reasons:

1. No two people experience dementia in the same way, even if they are diagnosed with the same type of dementia (and there are over 100 different types of dementia).
2. Dementia is notorious for giving a person good days and bad days, so in the staging model a person could appear to be mid stage one day and more early stage the next day, making staging very unreliable as a concept. This is even more applicable if the person has other conditions, alongside their dementia, which can fluctuate.
3. Severe/end stage dementia is often confused with end-of-life, which would be encapsulated within it, but in reality a person could fit into the severe/end stage category for far longer than a few days, weeks or months. Technically my dad would have been severe/end stage for at least 6 years, but in the earlier part of those 6 years his dementia manifested itself in a way that meant he bordered both moderate/mid stage and severe/end stage. This only serves to further highlight the shortcomings of viewing dementia through a rigid staging model.

What is immediately obvious to me is that given the complexity of dementia, referring to stages has the ability to drastically mislead care professionals and families, and could, at worst, affect decisions about care and support that may adversely impact upon the person with dementia. The concept of stages also encourages comparisons to be made about people who technically fit into the same stage, but are in fact completely different in how they are experiencing their dementia and reacting to it, which can only make the minefield of care and support more baffling.

Looking at dementia through the prism of stages destroys concepts like individuality and being person-centred, because it assumes all people who are living with dementia are one homogenous group, which they most definitely are not. I also feel staging has the ability to affect whether a person receives positive care and support throughout their life with dementia – for example, would an individual considered to be in severe/end stage dementia be offered as many positive care and support options as a person in 'moderate/mid stage' dementia? They certainly should be, but I suspect that the association of end-of-life with severe/end stage dementia might restrict more positive care and support because the person is seen as being less in need now that they are coming to the end of their life (which as I've already pointed out in my dad's case, can be far from true).

Staging also has the ability to dampen hope, which concerns me greatly. When I talk about hope, I’m not talking about notions of a cure for dementia tomorrow, or unrealistic expectations for a person's recovery from having significant symptoms of dementia to being back to their pre-diagnosis self. Hope, for me, is about giving families and professionals the drive and determination to make the life of the person with dementia happy, fulfilled and reflective of everything that person enjoys, with a massive emphasis on living in the moment and enjoying the good days.

Mentally that is difficult to align with the stages of dementia, because again, the concepts associated with progressing from one stage to another are inevitably likely to cause those around the person to lose a little hope, perhaps feel deflated, blame themselves for not doing more to keep that person at the previous stage for longer, and enhance the feelings of loss that are very common for families and family carers.

Given the negative connotations regarding the stages of dementia, it’s all the more unsettling that many families I’ve known, both personally and professionally, have been encouraged to become very focused on the stages of dementia, when in reality the juncture that their loved one has reached with their dementia at any given time isn’t what is important. Encouraging families to focus on what is possible, what their loved one can do, and how they can provide optimum care and support is far more helpful.

Perhaps even more worryingly, I’ve known medical staff who use the staging model to justify recommendations or decisions about care that families can often feel compelled to agree with because they’re being told that their loved one has reached a certain stage of their dementia. When my dad was immobile, incontinent and living with dysphagia (swallowing problems – more information here), we met doctors who questioned his quality of life and predicted his imminent demise due to his end stage dementia. Without a family to advocate for what he could do and did enjoy, he would have been compartmentalised in a way that effectively wrote him off as a human being.

I’m not in any way seeking to deny that dementia is characterised by deterioration and is terminal, but I also strongly feel that an antidote to the concept of staging is long overdue. For me, this would simply be:

See each person with dementia as an individual in their own right, and if you must assess them, assess them in the context of the moment in time when you are assessing them, keeping a completely open mind as to what the rest of that day, week, month or year might bring for that person. More than anything the person with dementia needs appropriate care and support, not a misleading label.

Or to put it another way, in the words of Helga Rohra, a lady living with dementia:

“The faces of dementia, rather than the stages of dementia.”

Until next time...

You can follow me on Twitter: @bethyb1886

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Playing the numbers game

I write this blog on the cusp of September which is the 4^th 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

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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...

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