A helping hand

When a loved one is living with dementia, it is inevitable that a time will come when they will need additional help and support. A person with dementia may be very resistant to any intervention from any individual, and who could blame them - 'help', however well-meaning, often results in taking over from the person with dementia and can be very disempowering, especially for a previously very independent person. Alternatively your loved one may be willing to accept help, but only want it from a particular person, which can put a huge strain on one individual.

Overcoming problems around how to provide help and support, and especially difficulties completing essential tasks like washing, dressing, eating etc, is something that huge numbers of family carers struggle with, and can even baffle professional care workers. If time is short, and the individual living with dementia is determined that what the person who is supporting them feels needs to happen isn't going to happen, it can become a very frustrating battleground for everyone.

Alleviating those tensions can be difficult. As one family carer said to me after reading my 'Troubleshooting Checklist' blog post: "How do you cope when someone is unwilling or unable to cooperate with these tasks? Our routine gets harder every day." The advice I gave that person is the inspiration behind this blog post, largely because I know from the correspondence and conversations I have had that that person is far from alone in experiencing these problems.

There are lots of things you can do to try and improve the communication and mutual understanding needed to avoid battleground situations over every day necessities. Lots of carers – be they family carers or professional care workers - often get locked into a very task-based day, and naturally take over doing tasks even when the person with dementia may be able to do some or all of these things themselves. I was guilty of this with my dad in the early years of his dementia - it is an incredibly easy pattern to fall into.

Often it's just quicker and easier to do things for a person than support them to be independent. However, for anyone, and particularly a very independent person, this could be like red-rag to a bull. Put yourself in the shoes of the person with dementia - looking at it from their perspective it seems very controlling and disempowering for you to just take over. 

Maintaining skills is a difficult balancing act. If a person is going to put themselves in danger or do something wholly inappropriate then some measure of intervention will be needed. Judging that measure, however, can only come from understanding the individual - through communication, body language, previous history, observation etc - anything that tells you what their capabilities are and where the points are that you may need to intervene. 

Of course dementia is a constantly changing landscape, and abilities and the motivation to do things will fluctuate and most likely decline over months and years. The frustration the person with dementia is likely to be feeling during this decline cannot be overestimated, and any intervention you make needs to be very sensitively handled. There may be specific trigger points when you and the person you are supporting upset each other. It might be helpful for you to note these and see if a pattern emerges.

Once you've worked out what is triggering times of discord, you may be able to identify factors that you can change. For example, the environment you are in may be contributing to difficulties. A particular room, object, or sensory experience could be a problem. The routine you are using may also be problematic, even if it's a routine that has been in place for a long time. Or the problems may be down to a breakdown in communication.

An example to illustrate this:

You are helping a loved one to dress. Your loved one has always got dressed in the bathroom after their morning wash. Your loved one is now resistant to dressing but is struggling to communicate why in a way that you can understand. Examples of possible problems include:

1)    Looking at the bath/shower, your loved one is associating the bathroom with getting undressed for washing – they simply cannot understand why you would want them to put clothes on, rather than take them off.

2)    Your loved one doesn't recall having a wash so cannot understand why clothes should be going back on.

3)    Your loved one opened their bowels prior to having their wash, there is a lingering smell and they don't want to dress because the smell is suggesting to them that they need to wash.

4)    They haven’t completed their pre-dressing regime in the way that they would want to – IE: don’t feel dry enough, want to apply a body lotion, or would like to do their hair or make up before getting dressed.

5)    In your small bathroom there isn't enough room for you and your loved one to manoeuvre to help them get dressed, this is making the space claustrophobic, possibly too hot, and you are getting in each other's way, causing mutual frustration.

All of the problems described above are centred around association and memory. The environment you are in is causing a negative association. Try changing the established routine and moving to another room to dress – ensuring that room is warm enough. The bedroom, with an open wardrobe and different outfits to choose may help to demonstrate that it's time to get dressed.

 

Of course the above is just one example – I could write up many, many more – every individual situation is going to be slightly different and require a different approach. However, a general checklist for multiple situations would include (in no particular order):

1)    Think about the room(s) where you are trying to help the person (do they feel safe/comfortable?).

2)    Don't ignore sensory barriers - noise can cause confusion, smells and the visual landscape can give mixed messages.

3)    Experiment with routine if the current one is not working.

4)    Be mindful of timing - the time you chose to do something may not be the time that the person you are supporting wants to do it. If schedule is vitally important, try to agree the schedule together and have a dementia friendly clock to help orientate the person and avoid conflict over what time it is.

5)    How much are you involving the person in tasks - would they like to/could they do more? Or would they like something done differently?

6)    Think about how you are communicating - is it appropriate, can it be understood, do you need to change how you are communicating?

7)    Use clear clues to indicate what the person needs to be concentrating on - IE: open the wardrobe to choose clothes to wear, set the table before a meal, take towels and washing products to the bathroom in readiness for a bath/shower, collect up coats, hats and shoes ready to go out.

8)    Think about how you are helping the person, are there any particular trigger points for upset (observe/document and you may see a pattern emerge that you can change).

9)    If someone else is available to help (another family member, friend, care worker etc), find out from the person with dementia what their preferences are. Also consider if you need extra help in certain situations (help with moving and handing etc), and if certain tasks should be completed by someone else while you take a back seat. Be particularly mindful of cross-gender issues, dignity and privacy.

10) Remember that what needs to be done (like getting dressed) doesn't exist in isolation from other things. For example, feeling unwell, being in pain etc are going to have a huge bearing on how someone concentrates on what needs to be done, their willingness to help, and the movement and mobility they have. A person with dementia may not be able to articulate how other illnesses or pain are affecting them, so as a carer you need to be a bit of a detective.

Taking the person-centred, holistic approach described above should help to alleviate most issues around offering help and support to a person with dementia, but like everything in dementia care there are no guarantees and the role of a carer is likely to be constant trial and error. As ever, patience and empathy are vital. I'm not sure it ever gets easier, but what I can say is that with time you become more perceptive and an infinitely more effective detective.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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£55 to diagnose dementia

When the headlines first broke that GP's in England are to be paid £55 to diagnose dementia, I have to admit I wasn't surprised. Improving diagnosis rates has been the number one target since the 2009 National Dementia Strategy, and it came under the microscope again in the 2012 Prime Minister’s Challenge on Dementia. Yet, despite making diagnosis the cornerstone of English dementia policy, diagnosis rates haven't improved to the desired level.

In policy terms it's a small step to start offering financial incentives to diagnose, but in human terms it is a massive leap. It puts a value upon a diagnosis of dementia that simply doesn't exist if the clinician diagnoses another condition. It tarnishes good sound clinical judgement with the promise of payment, and it poses significant ethical and moral dilemmas.

Granted it's not a huge payment, it is made to the practice rather than the individual GP, it's optional not mandatory, and it is a relatively short-term scheme that will only last 6 months. Just think about the last part of that sentence though: why is a dementia diagnosis more valuable in the next six months than at any time before or after that? Could it be something to do with targets?

This is where we get into really tricky waters, because you and I and anyone visiting their GP doesn't see themselves as a target - just a citizen needing the help and advice of their doctor. The doctor/patient relationship is one bound by trust, and like any relationship, if the trust is lost then a breakdown of that relationship becomes inevitable.

Such a breakdown could have many significant and long-lasting consequences, not least that a person may seek to avoid seeing their GP, or any healthcare professional, about other problems that could have serious, possibly even fatal consequences in the future. Every patient needs to be able to trust in their doctor to reach a judgement about their symptoms based on the best available evidence, having availed themselves of all necessary diagnostic tools and tests, and in a holistic way that puts the patient at the centre of a multidisciplinary team. 

Even if a GP does all of that, we know that diagnosing dementia isn't an exact art. There are numerous different types of dementia, each one presenting itself differently, and diagnostic procedures (although greatly advanced) are not completely accurate. There are also other conditions, such as depression and delirium that can look remarkably similar to dementia.

Assuming an accurate diagnosis can be made, for many people there is little, if any, post-diagnostic support. You may be offered some medication, but dementia drugs aren't suitable for a lot of people (they weren’t suitable for my dad), although it is perhaps very suitable for the manufacturers of these medications that prescribers are going to be paid to diagnose more potential candidates for them.

Of course incentivising GP's to offer particular services isn't new, and the argument behind this payment is that it will enable practices to pay for the extra time and work involved in making a diagnosis. But I know that if I went to my GP and I was diagnosed with something that I'd seen headlines telling me they were being paid to diagnose me with, I would be unlikely to trust that diagnosis or that GP.

The money set aside for this payment scheme is £5m, which although it may sound a lot, in terms of overall health service spending it is relatively low. Sadly it doesn't allow me much creativity to think about how I'd like to spend it if I was the person making the decisions about dementia policy, but with due artistic licence, I’d like to suggest the following:  

• Invest in training that enables doctors to do what their profession is meant to do - use sound clinical judgement to make a diagnosis (and be just as confident about not diagnosing something because you aren't being beaten over the head to steer your diagnosis in a particular direction). The quality of each individual diagnosis should always be more important than the quantity of diagnoses being made. 
• Invest in post-diagnostic support. Models of positive support, that genuinely enable people to live well, are vital to tell the public that you can expect to live a good life after a diagnosis. Forget the promised land of cures or life-changing treatments for a moment, if you can't even offer your patient hope that they can live a life that supports them in the ways that they want to be supported then as a country we are failing big time. Good quality support doesn't make headlines - it isn't a major breakthrough in a lab or an eye-catching policy. It is most likely to involve human interaction and specialised social care – the latter of which is expensive in terms of well trained professional personnel, hence why it isn’t invested in.

So instead we focus on diagnosis. The quicker and easier it can be done the happier everyone will be, or will they? I would be the first to argue that anyone who is having troubling symptoms and seeks help should be given every available method of help to accurately uncover what is causing their symptoms. But is a higher diagnosis rate really a mark of a compassionate, supportive society that sets the benchmark for the world in how to care for people with dementia?

 

I'm not convinced it is. For me the benchmark is in how well each person currently diagnosed with dementia is living, and the confidence anyone with troubling symptoms has about coming forward to find out what is causing their symptoms. I would suggest that adding a financial reward into that diagnostic process will only make the undiagnosed person more sceptical, less likely to come forward and, should they really have dementia, less likely to accept that diagnosis, leading to them potentially experiencing other mental health problems.

 

I would also suggest that it lays vulnerable older people, especially people in care homes, open to being labelled without a robust diagnostic process, mostly because they could be seen as an easy target, particularly if they don't have a family to advocate for them. Making a diagnosis of any condition is about integrity, and above all else, putting the person first.

Because after all we are people, not targets.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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Inspiring end-of-life care

When I had my abstract, ‘End-of-life care: A very personal story’ accepted for oral presentation at the 2014 Alzheimer Europe Conference in Glasgow, I honestly never expected that it would receive a standing ovation from the audience. My presentation was included as part of the session on Palliative Care, and given the difficult nature of this topic I thought the audience would be small and very reserved. How wrong I was!

 

My presentation was inspired by my blog post of the same name published in 2012 that detailed my dad’s end-of-life care. The reason I chose to submit an abstract about it was purely because I feel that it is an outstanding example of end-of-life care being delivered in a care home setting, with the potential to inspire care providers as the very best of ‘best practice’. 

 

Whilst it may be intensely difficult for me to talk about, mostly because it brings back very vivid memories of great sadness at losing my dad, it is vital that professionals caring for people at the end of their life (whether those people have dementia or not) understand what good end-of-life care looks like, how to deliver it and why it is so important.

 

End-of-life care is emotive. It is something many of us instinctively steer clear of, and as I told the audience at the Alzheimer Europe conference, it is something I never really thought about until my dad needed it. What I also learned from other presenters in our session is that end-of-life care is something that many professionals aren’t very well equipped to deliver either.

 

There is a lack of training for healthcare professionals in end-of-life care, and training within social care settings is patchy and often inadequate. It’s not just about how to provide end-of-life care either; it also about how seeing someone through to the end of their life impacts upon the professionals who have provided that care.

 

The landscape in end-of-life care is complex, and full of stark realisations about facing up to our own mortality whilst providing the very best care to the person who is passing away. The overwhelming message from the Palliative Care session at the Alzheimer Europe Conference, however, was that despite the complexity of our emotional responses, the practical nature of end-of-life care is generally about simplicity and humanity.

 

For example, in my presentation I detailed the environment that my dad spent the last two weeks of his life in:

"Before dad’s arrival at the (care) home we had filled his room with his favourite things. Surrounded by his books, pictures and mementoes, with his much loved music playing and a lavender scent in the air, dad spent the last days of his life in bed, in his own cotton sheets and dressed in his own smart clothes. His bed faced a large window that looked out onto the garden where squirrels and cats played – a perfect scene for a man who had always loved animals."

I also spoke about the care he received from the care home staff, including a lovely soak in the bath, delicious puree food (up until the last 5 days of his life) and how he was regularly turned and changed, enabling his pressure sores to almost heal by the time he passed away. There was a special mention for the care home staff too:

"We could not have asked for professionals who were more caring, attentive and loving than those people were towards dad."

In these days of negative perceptions towards social care, and the people who work on the frontline in care homes up and down the UK, it is sadly very rare to hear good news stories, not least about end-of-life care, which is often fraught with disagreements and issues about palliative care being tantamount to ‘giving up’ on a person.

 

Yet good social care, and indeed good palliative care, can give immeasurable help and support to families when their loved one is nearing the end of their life. As I told the audience in Glasgow:

"An intensely sad time was made bearable for us as a family precisely because of the care given to dad. We felt huge relief that we no longer had to worry about whether dad was receiving the care that he needed, and the fact that he was so comfortable, calm and peaceful was testimony to that care."

What of the staff providing that care though, and their feelings? I could never have made this presentation without eluding to how they reacted to my dad’s passing, mostly because their humanity shone through in a way that for me should be celebrated:

"When dad was wheeled out of the home for the last time by the undertakers, the staff cried with us – for them, although losing a resident wasn’t a new experience, it was clear that every resident and their family matters. In that moment, their humanity might have ‘gone against’ protocol and practice, but it said so much about the care and compassion that underpins their work and which no amount of mandatory box ticking should ever be allowed to eradicate."

People who work in care jobs are human beings, with natural human emotions. Any attempt to turn them into robots who don’t have those feelings is basically asking them to remove the element of themselves that is most vital in providing the warm, caring, compassionate support that we would all want for our loved ones and ourselves.

 

That theme of humanity featured heavily in the list of the key elements of my dad’s end-of-life care that I concluded my presentation with, and that motivated me to write this blog. I would give each entry on this list equal importance and suggest that together they are viewed as part of a holistic package of end-of-life care: 

• Person-centred care
• Teamwork with families
• Attention to detail
• Well-trained and well-led staff
• Dignity and respect
• Kindness and compassion
• Personalised environment
• Time and patience
• Continuity of care
• Can-do attitude
• Multi-disciplinary team approach

These key qualities embody the simplicity I mentioned earlier, and also include one of the two main themes of the 2014 Alzheimer Europe Conference – Dignity. You would think that achieving dignity in the last days and hours of someone’s life is something that would happen routinely, but sadly not everyone is as lucky as we were as a family. 

 

I hope that the standing ovation my presentation received is proof that my dad’s story can inspire better end-of-life care for other people in the future, and that speaking about even the most difficult topics can be warmly received if you connect with people on a human level. And that is perhaps the most important message of all: we have great caring qualities as human beings that have the ability to change lives at every stage of life, even at the end.

Until next time...

You can follow me on Twitter: @bethyb1886

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Humanity in care - The role of touch

One of the most controversial elements of care provision is touch. It has a discomfort associated with it for many professionals, and even family members can have deep reservations about touch. It can be associated with abuse, both by ignoring someone's need for a comforting touch or the more commonly made association of inappropriate touch. It is also a topic that us famously reserved Brits don't really like talking about.

Touching another person can happen in a variety of situations and for a multitude of different purposes. It can be the basic things, like a clasp of the hand when you greet someone, a hug, a kiss on the cheek, ruffling hair or brushing against an arm. It can be touch that is necessary to help a person with something, like personal care or eating and drinking. Touch can be used to support, comfort or reassure, but it can also cause alarm or anxiety.

Touch has an important role to play in dementia care for the majority of people who are living with dementia. Understanding the individual preferences of a person around touch is vital to ensure that you don't dismiss a person who seeks comfort, or distress a person who feels that touching them is an invasion of their personal space.

Against this backdrop, why do we have such a deeply uneasy relationship with touch, given that it is a natural part of life from the moment we are born?

For professionals, a lot of the issues around touch are about what is appropriate - there is an underlying fear that any intervention must be proportional for a particular situation and justifiable to anyone who may observe and question. Yes, touch is sometimes associated with inappropriate behaviour and criminal acts, but those incidents are few in comparison to the vast majority of instances where touch is giving support, comfort and putting humanity into care.

Occasionally, issues around touch can be rooted in fear about older people and advanced dementia. A good example comes from a particular interaction between my dad and an out-of-hours doctor. It was late on a Saturday evening when the doctor called to see my dad for a suspected chest infection. During the necessary examination, the doctor refused to touch my dad, instead issuing instructions to remove clothing and position dad in a certain way. I was appalled - the lack of warmth in that doctor's approach betrayed everything that was wrong with his bedside manner.

Fear of touch can also come from concerns about protocols. I remember seeing care workers walking past and ignoring a lady who was crying out to see her husband. When I asked why they were not comforting her, they said they weren't allowed to. I was horrified and couldn’t just walk on by, so I stopped and put my arm around the lady. We sat there for a while, she was crying, I was trying to be soothing. I can't prove my intervention helped, but I can say that if I had been that lady I would have felt considerably less alone as a result of a comforting touch.

Sitting holding my dad's hand was a standard element of all the hours we spent together, as was stroking his head or his arms. However, not all family members feel comfortable about touching their relatives in this way. Visiting a loved one with dementia can bring with it a raft of emotions, and as much as we don't like to talk about some of the more uncomfortable aspects, for some people this can include feelings of revulsion, of not wanting to become 'dirty' or 'catch' something. In short, not touching can be method of protection for some individuals.

At the other end of the scale are family carers, who find themselves thrown into an unfamiliar role that is inevitably going to involve a lot of touch. Having to cope with an increasing need from their loved one for help with personal care can be hugely difficult. Any care that involves touching intimate areas, such as changing incontinence pads or bathing, can be especially problematic, and even more so when the relationship is between a child and a parent, and where the two people involved are of the opposite sex.

So how do we become more comfortable about touch, and the vital role it plays in caring for people with dementia? 

A significant part of the answer to this lies within ourselves. Confronting our own reservations about touch is the first step towards feeling more comfortable about it. Reservations in relation to touching people with dementia can often be rooted in stigma - one of the most astonishing things I ever heard was the idea that somehow you might 'catch' dementia from touching someone who is living with it. Perhaps that is what that out-of-hours doctor was afraid of.

As a family member visiting a relative who is living with dementia, engaging in practical activities that may naturally lead to an element of touch - in terms of guiding or assisting the person with dementia - can help to make touch feel like the normal part of life that it is. If you are a family carer having to undertake increasingly personal touch-related care, knowing that you are doing things in the right way (for example techniques for moving and handling, washing and dressing etc) can often help to reassure the carer. That guidance could come from a district nurse or other qualified health or social care professional.

For professionals, I think touch will inevitably remain a difficult area. Some people can naturally incorporate touch into their care provision, and so long as that is done in a way that the individual receiving care is comfortable with, then it is a win-win for all. Learning to gauge that comfort level takes a degree of skill and experience, and guidance from other members of the team.

Most importantly though, it is about communication with the person you are caring for and observation of their needs and reactions. It's about being adaptable, and not assuming that what was ok yesterday is ok today or tomorrow. It is also about establishing relationships through continuity of care and reflecting on what is going well and what could be done better. 

In the end, touch is a human reaction, and hugely associated with our emotions. It is part of who we are, and as such it has to be part of the care we provide.

Until next time...

You can follow me on Twitter: @bethyb1886

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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...

You can follow me on Twitter: @bethyb1886

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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: http://www.youngdementiauk.org/support-across-uk. 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: http://www.youngdementiauk.org/blogs.

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...

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