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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Can we reduce the risk?

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

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

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

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

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

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

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

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

• Eating a little of what you fancy does you good, but a lot is likely to give you problems. If it comes out of a packet rather than out of a field, be particularly suspicious.
• Most people can enjoy an occasional social drink without any problems, but anything beyond that will probably be killing off too many brain cells. In other words, a glass may be ok, but a bottle isn’t.
• If you were meant to smoke, you would have been given a chimney in your head (a gem from my parents that was regularly mentioned around the meal table during my childhood – to this day I have never even tried a cigarette).
• Humans were designed to exercise, and as much as some of us may dislike it (myself included!) we are sadly going to have to accept that fact and find something active to do that makes exercise as enjoyable as possible (and let’s face it there are LOADS of options, disliking the gym isn’t an excuse.)

Ultimately healthy genes and a good standard of living where you are knowledgeable, in decent housing, not living in food poverty and have access to outside spaces for recreation are also necessary, it’s just that they are rarely talked about because they touch on big social issues that aren’t entirely comfortable for policy makers. 

 

On a personal level, the most precious skill my parents (mostly my mum) ever taught me was the ability to cook (the joy of cooking with my dad’s home-grown fruits and vegetables was a particular highlight). Making healthy, nutritious meals is the sort of daily life skill that many adults who live off of processed and packaged food would benefit from, and I count myself exceptionally fortunate that I love cooking. That early education from my mum and dad is the essence of good parenting. I was very lucky – others sadly aren’t.

 

I predict that during this year’s World Alzheimer's Month we will see a lot of coverage given to the idea that ‘What’s good for your heart is good for your head’. A great slogan that is yet to really seep into the public consciousness, but maybe September 2014 is the month when some real traction will be given to the vitally important and still greatly neglected reduction and prevention agenda.

World Alzheimer's Month 2014 - Graphic from Alzheimer's Disease International



I love this graphic from Alzheimer’s Disease International for #WAM2014 with five great tips that we can all try to achieve:

• Look after your heart
• Be physically active
• Follow a healthy diet
• Challenge your brain
• Enjoy social activity

For my part, I’m going to start my latest exercise regime – trying to meet the NHS target of 150 minutes of moderate-intensity exercise a week with additional muscle strengthening exercise. I’ve failed with so many exercise regimes, but with renewed enthusiasm I will try to get fitter and reduce my own risk of dementia and other health problems.

 

Carpe diem – Seize the day!

 

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A precious gift

I've often thought about what the most precious gift is that you could give a person with dementia in the absence of a cure. I've written before about the importance of love, but I suspect that if I asked a cross-section of people what they think the most precious gift would be, money would be a popular answer.

Unlimited funds would give the person with dementia the chance to do all of the things that they’ve wanted to do, the ultimate bucket list. Of course money can buy you many things – amazing experiences, expert care, a lavish lifestyle and the best of everything – but wealth of that magnitude is the preserve of a select few. Most of us don’t have vast sums to gift to others or have an inexhaustible stash of cash put aside to spend on ourselves.

In my view, giving your time is a more precious gift than money and it’s inclusive; we can all give our time to a person with dementia and it doesn't cost anything. Most people hugely underestimate the difference that can be made by giving their time, not realizing that it is a gift that forms the cornerstone of quality of life – without it every other attempt to enable a person to live well with dementia is likely to fail.

Many people have reported that when they were diagnosed with a type of dementia they went through a period of mourning the fact that dementia, being a terminal disease, is likely to cut their life short. Losing years off of your life is cruel in a way that words cannot do justice to, but perhaps even more cruel is being denied the time of those around you - people who may well outlive you and yet are not willing to give you the time of day. 

A simple 'Hello my name is' as epitomized by the fantastic campaign created by Dr Kate Granger is too much for some people to manage, and yet how long does such an introduction honestly take? In our lives we've become too busy to stop and realize the gift of time, and in care settings, we’ve become too task orientated, wanting to get those boxes ticked as speedily as possible.

Your time is such a great gift to give a person you are caring for because it enables so many other amazing things to happen:

• It makes choice REAL. Giving a person with dementia time to choose between different outfits, foods, drinks, personal care options or things to do gives them ownership over what their day will be like. Rushing them because you don’t have time to allow them to think or express their thoughts takes away that choice. Giving them time also allows you to make suggestions if they are struggling with choices and support them in making their choice.

• It enables communication. As a person’s dementia advances, they will need more time to communicate with you and to understand what you are trying to communicate to them. Not giving them your time is going to stifle that communication and they will lose their communication skills much more rapidly.

• It deals with challenges. Dementia is tough to live with – anyone with dementia will tell you that. Not having the time of the people who are supporting you makes it a great deal more challenging because your memory recall will be rushed, you will struggle to follow what is happening around you, and you may begin to feel that things are happening to you, not with you. All of that leads to the common elements of ‘behaviour that challenges’. Being given more time to communicate, understand and participate means that your needs are more likely to be met.

• It supports emotions. Bottling up emotions can only lead to emotional outbursts that fuel ‘behaviour that challenges’. Giving someone your time to express their fears, anger, sadness, frustration and bewilderment isn’t easy, but by doing that you are likely to also bring about the expression of more positive emotions; happiness, contentment, peace, hope and possibly even some cheeky fun. 

As a general rule, everything that feeds into person-centred care results from giving someone your time. Everything that contributes to ‘behaviour that challenges’ generally results from not giving a person your time. That is why giving your time is such a precious gift, and why I will never regret giving the countless hours of my teen and twenty-something years to my dad. Even when that time was spent in silence, it was time well spent.

 

Giving someone with dementia your time is a gift that gives something back. You will learn from the conversation that will be created, the body language that will be demonstrated or the experience you will have in that moment with that person. The majority of what I’ve learnt about dementia has come from giving my dad, and other people living with dementia, my time. In return they've given me what I share with you on this blog. If nothing else, I hope that inspires you to give someone you know who is living with dementia some of your time.

Until my next blog post...

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Getting to the heart of unmet needs

Interpreting what someone with advancing dementia needs can often feel like a bit of a guessing game. If the person with dementia is struggling to articulate their needs and wishes in a way that the intended recipient of their communication is used to, both individuals can be left feeling baffled by the ‘call’ and the ‘response’, or lack of it. The person with dementia becomes more frustrated as they struggle to articulate and can start to feel ignored, while the interpreter may be guessing what is needed, getting it wrong and causing more distress.

It is a situation that is often accompanied by the best of intentions on both sides and feelings of uselessness or guilt for one or both individuals at the breakdown of their understanding.  It’s usually neither person’s fault that they are misunderstanding, but the associated human emotions are likely to produce one of the most hotly discussed topics in dementia care: 'behaviour that challenges', otherwise know as 'challenging behaviour'.

In the above example, both parties are feeling challenged by the other, and both are potentially going to react badly. Shocking though the idea might be, those without dementia can be just as challenged and challenging to deal with as the person with dementia, so don’t run away with the idea that this is a one-sided challenge focused solely to the person with dementia because clearly it isn’t.

Dig a little deeper, however, and see beyond the raised voices, gesticulation, angry advances, tears or complete meltdown and you will see something far less confrontational – an unmet need. I guarantee you that behind every ‘behaviour’ that is labelled as ‘challenging’ there is an unmet need. After all, behaviours are effectively reactions to circumstances.

In the example above the interpreter/carer is challenged by the lack of clear instruction. Their behaviour may include getting irritated, impatient or upset.

For the person with dementia, they are challenged by a) the fact that their dementia is standing in the way of expressing themselves in the way that they want to and b) that the person they are communicating with cannot interpret more effectively. Their behaviour may also include getting irritated, impatient or upset.

The difference between the two? There is a tendency to label people with dementia, seeing their deficiencies and reactions in a more negative light that those of the person without dementia. Fair? No. True? Often yes.

Trying to avoid this potentially inflammatory situation is vital. Think about the person with dementia:

1)      What are their needs?

2)      How can those needs be met?

3)      Can we always meet them?

4)      How do we prevent the person having unmet needs in the future?

Implementing  points 1, 2  and 4 requires spending time with the person.

• Providing person-centred care.
• Understanding their likes and dislikes.
• Finding way to connect with them to communicate in a way that they can positively participate in.
• Being flexible.
• Keeping calm and being compassionate.

I could go on, but basically simple, transferable skills that benefit both the person with dementia and the person caring/interpreting for them.

Addressing point 3 is more difficult. You’d like to think that you can always meet someone’s need, but sadly that isn’t always the case. If their need is to be free of their dementia, we currently cannot cure them. The best we can do is to help them to live well with dementia, which may be a compromise that they can live with. If it isn’t and they want your help to pursue, for example, assisted dying, then clearly you cannot meet that need under current UK law.

I have heard such needs expressed, and expressed very forcefully amongst people who are living with dementia, but they aren’t the norm. For most people a need will be for a hug, a drink, a favourite meal, a bath, pain relief, comfort, a change of environment, something to occupy them or to be accompanied on a walk. Simple things you might think, so why are they even unmet needs?

Not having enough time is probably be the number one reason why a lot of needs never get met. Family carers and professionals alike have a workload that generally outstrips the number of hours in the day. Understandably the person with dementia may not recognise this or associate that mountain of tasks with why their current need isn’t being met.

Thus the person with dementia gets frustrated, and potentially so does the person providing care – both caught up with challenges of their own, both feeling challenged by the other, and both capable of behaviour that the other may object to. The only difference here is that the person providing the care has the ability, thanks to an undamaged brain, to recognise the unmet needs of the person with dementia. The same isn’t true in reverse.

So the next time you feel challenged by a person with dementia, remember that you are also likely to be very challenging to them. Turn that challenge on its head and challenge yourself to work out what they might be needing and how you could support them to ensure that need is met.

Until next time...

You can follow me on Twitter: @bethyb1886

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Special Measures – My view

Last week's announcement that adult social care providers who deliver sub-standard care face being put into Special Measures from April 2015 proved to be quite a momentous event for me. I was involved in the announcement (details here), and it understandably produced a lot of mixed reaction.

I'd like to use this blog post to clarify some of my thoughts around this issue in more detail. The singularly most important thing to stress in this debate is that the majority of care is good care. I have written extensively about the amazing care my father received from many dedicated and caring professionals (for examples see: 'Continuity is key', 'Sense and simplicity', 'End-of-life care - A very personal story') some of whom are still good friends of my family. The coverage I have given to the positive aspects of my father's care on D4Dementia and elsewhere far outweighs coverage of our negative experiences.

It is widely known that adult social care has a poor reputation, badly tainted by the actions and culture of a minority whose conduct hits the headlines in a way that the many positive stories of wonderful care never do. Yet, as I said in my statement in the press briefing for the Special Measures announcement, "Most care is excellent. Most care workers are dedicated, and often undervalued, professionals". 

I am the first to acknowledge that there are huge issues in the recruitment and retention of good care workers (see this blog post), and that the terms and conditions that many work under fall well short of the professional standing and associated remuneration that I would like to see given to care work. But none of this is an excuse for poor care. Many good care workers have terms and conditions of employment that do not fairly reflect the work that they do and yet they still deliver great care, and of course the many volunteers who help to prop up services earn nothing at all and often make an amazing contribution to the lives of vulnerable adults. 

None of that in any way belittles the issues around employment of care workers, but aligning debates about employment with debates around poor care almost gives the impression that unfair employment conditions are an excuse for poor care, when there can never be an excuse for poor care. I know for a fact that the many wonderful people who cared for my dad weren't paid enough, or valued by their employers as they should have been (one of my dad's care homes had 4 different owners in the time he lived there), but they were fundamentally dedicated and caring people who did amazing work in often very difficult circumstances.  

In terms of the proposals about Special Measures, many people have asked me what will be the difference between Special Measures and the powers CQC have now to issue warning notices and if necessary take action to remove the registration of a provider and close a service. To clarify, CQC have been asked to develop a Special Measures regime for adult social care by the Secretary of State. That process will begin in autumn 2014 and be done via the Adult Social Care Co-Production group that I am a member of. At present, the in depth details of what Special Measures in adult social care will look like are still to be decided on.

In the meantime, I have my own personal 'wish list' that draws on the experience of poor care that we had in the last 6 months of my dad's life. This list includes:

1) Timely intervention - Often vulnerable people don't have weeks and months to wait for improvements to happen. If the 'care' they are receiving is acutely failing, it could cause serious injury or premature death.

2) Targeted intervention - A Special Measures style intervention should, in my view, directly address particular concerns by signposting to resources that can make an immediate difference to the lives of the people receiving a care service. There are loads of great resources available, and accessing them doesn’t necessarily require a provider to spend a lot of money. We are very fortunate in the UK to have The Social Care Institute for Excellence and Skills for Care alongside many other innovative and highly effective national and local organisations, businesses, charities and community interest companies that can provide guidance, practical resources and be catalysts for change. Indeed, independent of regulation some care providers work with me in a consultancy capacity to evaluate, improve or change aspects of their service, so there are many proactive and forward-thinking providers out there already.

3) Sensitive intervention - It is vital to be mindful that a care home is the home of the people that live there. In my view Special Measures must do everything possible to turn a service around in a timely and targeted way without the people that live there having to find a new care home, unless of course those people want to find new care home. Having to move can be very distressing, and again possibly hasten a person's death is they are particularly frail or have advanced dementia.

4) Public accountability - I hope that, like with hospitals, Special Measures will provide clarity for families about the status of a service. Families aren't stupid - they know when care isn't good enough, but generally they are often too afraid to speak up. They need to see CQC taking firm but fair action that addresses shortcomings if a service isn’t safe, caring, effective, responsive and well-led. As part of that process, I would like to see all providers actively working with families in a renewed effort towards teamwork and inclusivity in the day-to-day life of a care home.

So how are care providers likely to react? In my view, if you are a good care provider you have nothing to fear. If you are a provider who is found to have a service that is delivering sub-standard care but you are prepared to work hard on turning that service around you have nothing to fear. If, however, you are a provider of a sub-standard care service and you are complacent and disinterested in improvement then you are a danger to the people who rely on you (people receiving your care, their families and any good care workers that you employ), and anyone who may come into contact with your service in the future. It is then the role of CQC to take action and it would be indefensible if they didn't.

There is some disquiet that putting a service into Special Measures will mean that the provider cannot maintain their revenue stream if one of the conditions of Special Measures is to prevent the provider from having new admissions to their care home or new clients to their homecare service. This, however, isn't new - there was a period when one of my dad's care homes was closed to new admissions due to safeguarding. In my view this actually helps providers; it enables them to focus on their service and the improvements that are needed without the added responsibility of caring for more people, and it safeguards the public from anyone else coming to harm whilst the service implements improvements.

Is privatising care the reason poor care exists? In my view poor care can occur whether the provider is making a profit, is a not-for-profit or indeed is a public sector organisation. The causes of poor care practices are, more often than not, centred around the culture of an organisation, its leadership and in some cases individual staff teams or members. Can hospital-style Special Measures work in social care? No, because clearly there are significant differences between hospitals and social care, but there are certainly some positive examples of hospitals turning themselves around as a result of being placed into Special Measures.

Can CQC be trusted with this? As is well known, CQC didn't provide us as a family with the support we needed when my father was alive, but arguing about the regulator isn't going to change the fact that they are still the regulator. Working with them to improve social care, celebrating the outstanding examples of care and uncovering inadequate care is the only option in terms of the regulation of UK health and social care services. As I have said in the past, inspection - however rigorous and informed with intelligent monitoring - will still only be a snapshot of a service. Whistleblowing is as vital now as it has ever been, whether you are a person receiving care, a family member or a social care worker.

I believe as a country we owe it to every person who needs social care and their family to ensure that care is the very best it can be. I will always champion that regardless of who is in government and who the regulator is. I feel passionately that we must be the change we want to see, and constantly strive for improvement and the eradication of poor practice.

Until next time...

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Challenging stereotypes about families and care homes

Ask a cross-section of individuals what they think about care homes and you will often hear negative views of both the homes themselves and the families whose loved ones live in them. Having a relative in a care home has long been seen by the ill-informed as some sort of bypassing of responsibility, but for the majority of families that couldn’t be further from the truth.

Embarking on the heart-breaking process of finding a care home, and then trying to adjust yourself and your loved one to this new way of living, isn’t quite the throwaway experience that many people - including some of our politicians - have portrayed it to be. As someone whose dad lived in 3 different care homes over a 9 year period, the suggestion that we as a family somehow negated our responsibilities towards him infuriates me.

Neither my father nor us as his family were given a choice about dad’s care: his doctors decided that he would be a danger to himself and to others if he returned home after hospitalisation for a larger stroke that had led to a diagnosis of vascular dementia. Without a health and welfare Power of Attorney (such a document didn’t even exist then) or any advanced care directives, we were powerless to change that decision, although I don’t actually believe that the doctors were wrong in their assessment.

As a family we knew virtually nothing about dementia, and there was precious little support for us in trying to understand how best to alleviate my father’s symptoms and provide him with the best quality of life possible. With dad utterly miserable in hospital, it was an immense responsibility to be charged with finding him a care home. Like many families, we had no idea what we should be looking for and moved from visit to visit almost in a daze – arguably we were as lost and bewildered as poor dad was.

Against this backdrop, imagine feeling the need to justify yourself to people entirely unconnected with your own situation who feel it is their right to sit on the moral high ground and verbally punish relatives for talking what is seen by some as an ‘easy way out’. Moreover, those who proliferate this view only serve to further stigmatise care homes at a time when they have taken an immense public bashing.

Perhaps most worryingly of all though, is that by stigmatising those who seek help to care for a loved one we are in danger of making carers – that most isolated and undervalued group of people – even more isolated. We know that carers desperately need more support but many don’t feel that they can ask for help. They fear being seen as someone who ‘can’t cope’, and feel guilty at the prospect of asking for some respite for fear of the effect on their loved one. Yet no one can carry on caring alone forever without it having potentially very serious consequences for their own health, and in turn the welfare of the person that they are caring for.

There is also a particular stigma that many families from minority ethnic backgrounds face. Their culture is rooted in caring for ageing relatives at home and in private, but at the same time they are living in a UK society that has incompatible expectations and priorities. Often in Asian countries, different generations of a family are likely to be living in the same accommodation and can share the caring duties – both when nurturing the younger generations and helping the elders. The women will usually remain at home to perform these duties and can support each other.

In the UK, women increasingly need to work in order to contribute to housing and living costs, generations often live apart (and in the future more people will age as single adults with no children), and whilst there is support from employers for parents with young families, support for those who are caring for ageing relatives is severely lacking. Many families also feel very ill-equipped to take on a caring role, especially if someone becomes very frail or has advanced dementia. If they make mistakes, or a lack of specialist equipment leads to an injury or accident, those feelings can be compounded.

At the very least most families will end up needing a level of domiciliary care in order to look after a relative and continue to work, and many will eventually need a care home if the person’s needs become very complex. Ultimately, of course, that decision can also be taken out of the hands of families by health and social care professionals. They are duty bound to act in the best interests of the vulnerable person, and indeed a carer who they may have identified as someone who can no longer go on providing 24/7 care, particularly if that carer is older and in poor health themselves or has more than one person to care for.

So the idea that somehow families are abandoning their loved ones, en-mass, to abusive sub-standard care homes is wholly wrong. For a start most care homes are actually staffed by very caring people who do a wonderful job, as I spoke about in my recent film for Care England. In the minority of homes where that isn’t the case, it is completely abhorrent to take the view that families have ‘got what they deserved’ and if the care isn’t good enough that they should ‘do it themselves’.

Social care has, for a long time, been part of the fabric of UK society, and rather than trying to reverse that model we should be embracing ways to use it as creatively as possible. Ensuring that everyone has access to good quality care, be that short-term respite or long-term care, is vital for a healthy and vibrant society. When care is caring and compassionate, it can be a breath of fresh air into the lives of all that it touches.

I also believe that we need to stop looking at care as ‘them’ and ‘us’. Care, in all settings, should be about professionals and families working together, sharing knowledge and experiences. With an ever-increasing ageing population, my view is that this will need to become the norm if everyone - be they a person needing care, a family or a social care professional - is to cope with this new reality.

Until next time...

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A holistic approach to multiple long-term conditions

One of the great myths around dementia is that it exists in isolation. If every person with dementia was only living with dementia and no other conditions, and they weren't at more risk of developing other conditions during the course of their dementia, then care and support would be infinitely more straightforward. The reality, however, is very different.

The description 'multiple long-term conditions' is relatively new terminology, and the knowledge around how to manage multiple long-term conditions isn't comprehensive. We don't know enough about the interactions between different conditions, or indeed how the associated polypharmacy (where a person is taking multiple medications) is going to affect each individual now and in the future.

Some conditions are explicitly linked with specific forms of dementia, a classic example being the association between vascular problems (IE: high blood pressure, heart disease and stroke) and vascular dementia. More generally, there have been many headlines written linking diabetes with dementia, and for people with a learning disability and dementia, the risk of epilepsy is increased.

There is so much more to this multiple condition landscape though, and a person who is living with dementia could quite easily be living with many other conditions that aren't specifically linked to their dementia but add additional layers of complexity, medication and even danger into their lives. Examples would include asthma, arthritis, ME, osteoporosis, eczema (and other skin conditions), coeliac disease and the many different cancers. Never forget also the numerous individuals who live with chronic pain, given that we know pain is very poorly recognized and treated for people with dementia. 

As a person ages they are also at more risk of hearing loss and sight loss. Macular degeneration, for example, can leave an older person blind. Coping with that type of sensory loss when an individual has dementia is inevitably going to make adjusting to losing your sight considerably more difficult, and likewise will make living with dementia much more complex and potentially lead to even more exclusion and loneliness. Equally, if joints like knees and hips begin to wear out and need replacing, that can also be very difficult for a person with dementia in terms of their ability to consent to an operation and successfully complete the long-term rehab that’s required.

Dementia can also lead to the development of other conditions, either though the progression of a person’s dementia or because they haven’t received optimum care – examples include: incontinence, dysphagia (swallowing problems), pressure sores (pressure ulcers), dehydration, malnutrition and the many circumstances that can lead to temporary or permanent immobility.

Equally, whilst being focused on the different physical conditions that a person with dementia can develop, it's important to remember that there are many mental health conditions that can live alongside dementia, and indeed sometimes be mistaken for dementia. Two of the most common are depression and delirium.

Yet despite all of the links that can be made very logically between multiple long-term conditions we are not good at treating people holistically. The NHS is largely organized to treat individual conditions, but as our population ages and more people live with multiple long-term conditions the need for that holistic model of care will only grow.

Worryingly then, I've heard of huge difficulties in providing care and support to people who are living with diabetes and dementia. These are two of the most common long-term conditions in the UK today, and the numbers of people living with both are likely to increase, particularly with obesity levels rising. Mismanagement of diabetes can have life-threatening consequences, and just because a person has managed to keep their diabetes under-control prior to developing dementia is no guarantee that they will be able to in the future as dementia complicates their landscape.

The challenges of caring for people who are living with dementia alongside other conditions are huge. A person can forget why they need to take certain medications, avoid particular foods or drinks or participate in certain tests, all of which can adversely affect the management of conditions that they live with alongside dementia.

One of the great mantras of my work has always been that a person with dementia will not be able to manage their dementia alone long-term. This is an even more prudent comment when you consider the other conditions a person may have that they require a family carer, alongside health and social care professionals, to help manage and support.

Only by treating and caring for a person in a holistic way throughout their entire life with dementia can we truly hope to meet the aspiration of enabling them to living well with dementia. Whole-person care, as part of the more widely recognized person-centred care model, is the only way forward. Expanding that to relationship-centred care will also enable carers and families to be seen as partners in care and receive the support that they need too.

Until next time...

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Please note: In 2015 the NICE/SCIE 'National Collaborating Centre for Social Care' will publish guidance on the Social Care of Older People with Multiple Long-Term Conditions. Find out more here.