Having THAT conversation

At every stage of life we face difficult conversations, none more so than those prompted by concerns we have about changes in the health and wellbeing of our loved ones.

With the launch of the UK Government’s initiative to increase early diagnosis of dementia, more people than ever before may well be persuaded to raise concerns with a loved one about changes in their behaviour, ability to look after themselves or their memory which may indicate to a family member that their relative has the beginnings of dementia.

It is a conversation that no one wants to have; it is seen as a highly sensitive, emotive subject that has long-term implications if a suspicion of dementia is proved correct. Much of the fear is due to the stigma that surrounds dementia, and discussing it can bring up feelings of being helpless and worthless, indeed it may even be construed as a death sentence.

In many of these conversations, the ‘D’ word is often omitted altogether. Commonly people simply refer to ‘memory problems’ or ‘needing extra help as you are getting older’. There is a fear around dementia (that I wrote about here) that once engulfed cancer to the extent that the word is almost seen as something that should never be uttered, as if saying it means you will develop it.

The work that has been done to raise awareness, battle stigma and provide hope for the future has taken cancer out of the shadows and into the mainstream, and now the same must happen with dementia. Such work takes time and patience, however, and for people who are older and have spent their whole lives living with a particular viewpoint, changing perceptions and ending the stigma is particularly challenging.

Often a conversation about changes in your loved one that you feel could indicate dementia can produce a very defensive response from the person themselves, or even from other family members who do not share your concerns.  Broaching the subject with your loved one carefully is vital, and from there providing constant reassurance and creating a discussion that is non-judgemental, sympathetic and focused on making a positive plan for the future is important to diffuse any anger, resentment or upset.

In some cases people with the early symptoms of dementia can have a high level of awareness about what is happening to them. They may well notice changes but either dismiss them, deny it to themselves or become secretive to disguise the problems that they are having from those closest to them, something that is particularly common in people who live alone. My father managed to make much of what he was experiencing look like eccentricity rather than dementia, partly through our naivety about dementia but also because his pride, independence and desire for privacy triumphed over his need for help.

As a result of these factors, he went ten years without a diagnosis (as I wrote about here) and when that diagnosis finally came, his dementia was significantly advanced to a point where the professionals caring for him decided that he could no longer remain at home. I was asked recently in a radio discussion if I would have preferred my father to have had an earlier diagnosis. My answer was a resounding yes. I believe that with earlier care and support, a healthier lifestyle and therapies to engage his mind and stimulate his passions and hobbies, he could have lived well with his dementia for longer and the ‘crisis point’ that brought about a very rapid decline in his condition could have been completely avoided.

Thankfully we know so much more about dementia now than we did then and slowly it is seeping into the public consciousness. If you are reading this blog as someone concerned that your loved one is showing signs of dementia, my advice is to be brave, find all the kindness and love within you and gently go about discovering whether your instincts are correct or not by supporting your loved one to seek medical advice.

It is important to stress that the symptoms of dementia are also attributable to other conditions, which is why dementia can sometimes be difficult to diagnose for clinicians. Those of us with extensive experience sadly often spot it in people we meet long before that person ever seeks help. Indeed some people still die with dementia having never had a diagnosis or any treatment, something that would be considered a scandal in other areas of medicine.

I sincerely hope that anyone seeking help in this age of greater dementia awareness is met with a sympathetic GP who offers kindness, encouragement and, should a dementia diagnosis prove the outcome, hope for the future and a positive action plan. A diagnosis is just one stage in the dementia journey and certainly should not be seen as the beginning of the end. Living with dementia, rather than dying from it, has to be the reality that accompanies every dementia journey, and when that becomes the norm, those impossibly tough conversations may just be softened slightly.

Until next time...

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You are not alone

Isolation amongst those caring for or grieving for a loved one is one of the saddest aspects of being a carer. Feeling that you are without support, help and guidance, trapped within an environment that has shrunk down to just your immediate living space, losing social interaction, and in some cases being ostracised through stigma and lack of understanding, can bring people to the brink of despair, and lead to problems ranging from depression to a dependency on alcohol or even contemplating suicide.

When caring for someone with dementia, you are stuck on an emotional rollercoaster which for almost everyone who has ever had a loved one with dementia means grieving for the person you feel you are losing in front of you, and then grieving again when they pass away. Feelings of loss both during the dementia journey and when it ends are major factors in isolating carers and impacting upon their long-term health and wellbeing.

Life after caring is a very strange mixture of feelings. The natural grieving process is individual to each person, but common feelings can include a loss of purpose, a craving for the routine you had (however exhausting it was) and a need within you to care that is no longer fulfilled. If you are of working age, returning to employment can see you coming face-to-face with colleagues who have no concept of what you have been through, and if you are retired, the days can seem long and lonely without the structure that came with caring.

Family members, friends, neighbours or even pets can help to fill the void, whilst for others being proactive and seeking out new hobbies, activities or volunteering for a favourite charity can be very beneficial. For me, immersing myself in my work and enjoying an amazingly happy new relationship has been my salvation. That does not mean that I don’t miss my dad every day because I do, nor does it stop me wishing that we could just sit together and enjoy a cup of tea whilst listening to his favourite music and wordlessly sharing precious time in each other’s lives. My grieving process is still relatively new (not yet five months old), but it has taught me that if you do not fill your time with things that occupy you and make you happy, you will have lost more than your loved one, your life will go too.

I have seen the struggles others have had in my position, and whilst I would never pretend that there is a perfect solution to coping with the isolation caring for and grieving for a loved one brings, if you do not fight the isolation it can be very overwhelming. Often, however, it can be difficult for carers to find an outlet for themselves and their emotions. The common advice is to take a break, but of course in the true switching-off-from-everything sense, you can never really have a break. Even when you are no longer caring, your thoughts and memories of your loved one remain very vivid, and your dedication to them does not automatically end; you cannot just ‘switch off’ from caring.

People who became isolated during their time as a carer are at a very real danger of continuing in that vein as they grieve if they do not have proper support and help. As a society we have still not found the solution to combatting isolation, in fact with so many of us leading such a busy existence, people whose lives exist solely behind closed doors are often forgotten about. It is well known that carers are not supported properly when they are caring, so it is no great surprise that for many this continues after their caring role ends. So many lives fade to a pale imitation of what they once were through isolation, and it is a damming indictment on the UK that so many feel cut off, ignored, taken for granted and abandoned.

Dementia can feel like your greatest enemy, but when it is gone, the person you care for is gone too. In my case, I would still rather have my father, dementia and all it brings, than be living without him. Many assume that it is a ‘relief’ when someone with dementia has passed away, but that could not be further from the truth. Like many all-consuming forces in your life, you struggle to live with it and without it.

For anyone currently battling isolation either as a present or past carer, I hope relief comes from knowing that so many others are going through the same feelings, emotions and difficulties. However isolated you feel, you are never alone; someone else has trodden your path, is doing so currently, or sadly will do in the future. When you are giving, or have given, so much of yourself to someone, it can be hard to see beyond that, but I know that in my case my father would want so much more for me than an isolated existence, and I am sure that whoever you are caring for or have cared for would feel likewise.

Until next time...

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So how much do you know about dementia?

Awareness is something that is talked about extensively in healthcare. In fact it is fair to say that those of us working in this field are pretty much obsessed by it. Days or weeks designed to highlight particular conditions are important for those wanting to get their message across, but for me every day is an awareness day, offering an opportunity to educate someone who doesn't know about dementia, inform professionals who work within dementia treatment, care or policy making, and most importantly of all, help and support those who are going through their own experiences of dementia.

By far the most challenging aspect of my work comes from getting the message about dementia across to people who do not have any experience, understanding or concept of dementia. They may have some outdated ideas about 'senility', some ‘facts’ they believe that are quickly proven to be fiction, or some very dismissive ideas about how someone with dementia is not worth bothering with, but nothing that represents real life for people living with dementia or their loved ones.

For some people dementia, or as many refer to it by its most common form Alzheimer’s, is actually something to joke about. A quick search on twitter under #alzheimers will soon uncover many people, especially young people, who use this hashtag on tweets about things that they have forgotten, or done that they should not have, to indicate humour. This perhaps sums up many of the wider perceptions that are still out there about dementia, so let me bust a few myths:

• Dementia is not a normal part of ageing (types of dementia are caused by diseases of the brain). 
• There is so much more to dementia than just forgetting things (dementia symptoms are multi-faceted, vary hugely and are individual to each person).
• Dementia doesn't just happen when people get older (young onset dementia, defined as dementia in someone under 65, is increasing and dementia can even occur in children, although this is rare).
• People with dementia are still people, not a disease. 
• Dementia is not contagious. 
• Those living with dementia still want to lead active and full lives and not be locked away and forgotten about (most people want to be cared for at home not in communal establishments).
• People with dementia can make a positive contribution to society if supported to do so.
• You can live well, or live as well as possible, with dementia.

What is important in the long-term care and support of people with dementia is primarily personalisation, compassion and dedication. Personalisation because everyone is an individual and should always be recognised as such in every aspect of their life and care. Compassion because care without it is not care at all, and dedication because dementia is long-term, progressive and terminal, requiring specialised understanding, continuity and commitment to excellence in caring for someone with it.

In the case of myself and my family, we never saw my father as a victim, or considered ourselves to be such. Dementia, whilst cruel in the way it strips back a person’s abilities, can never take their spirit or soul, and with the right therapies glimpses of this are possible until the very end of their life. I have written previously about how we never sought sympathy; what we have always wanted is understanding, acceptance and a will within society to confront dementia and defeat it, and I believe this is true for many people in the same position.

What does dementia teach you? 

• To appreciate the smallest things in life, since they become extremely precious (a simple hello from my dad in his final few months brought a massive smile to my face). 
• To make the most of every day (good days and bad days become an ever-present feature with dementia, and when the good ones come along you want to make the most of them). 
• To never give up (yes there isn’t a cure yet, but there is a lot you can do to make someone’s life with dementia a more positive experience than it would have been ten, twenty or thirty years ago). 
• Finally, in my case, to share our experiences with the world (everything my dad went through is there to inform, educate and influence others. He would have wanted to make a real and lasting difference, and hopefully through me that will be his legacy).

This World Alzheimer's Month, play your part in raising awareness, familiarise yourself with what I've said above, and if your life has never been touched by dementia to date but is in the future, remember the guiding principles in this blog post. Guidance never stands still, it grows as we learn and develop ideas, but the fundamental need for care, dignity, respect, and to be valued and loved never change.

Until next time...

You can follow me on Twitter: @bethyb1886

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Hard to swallow

(A note before I begin this blog: You should not consider anything written in this blog as medical advice for you or anyone you care for).

Something that is sadly very common in advanced dementia is the decline of the swallowing reflex. The condition, known as dysphagia, is extremely distressing for both the person affected and those caring for them, and can be fatal, either directly through choking or indirectly by setting up aspiration pneumonia.

The uncontrollable coughing that often accompanies a swallowing problem, indicating that something taken orally has gone into the trachea (windpipe) instead of the oesophagus, can leave the person affected gasping for breath, red-faced and sweating. For anyone who has witnessed someone choking, it is a terrifying moment.

My father suffered from dysphagia for the last four years of his life (something that I first touched on here). In his case it was a condition that gradually worsened over time, and for which there was no cure. As his life was nearing its end, he became incapable of swallowing anything; a combination of his swallowing mechanism totally failing and the fact that he was very ill with pneumonia, leaving his body completely unresponsive to any demands on it. Tube feeding was something we had investigated with hospital doctors in the past, but in someone with dementia it often causes huge distress and is very unwelcome (my father actually pulled a tube out), so it was not something we ever considered again, and certainly not when looking for a peaceful, dignified and pain-free end to his life when it became clear that he had simply given up and was ready to go (I wrote about my father’s end-of-life care here).

Careful management of dysphagia is vital to minimise incidents of choking. In my father’s case, this guidance specified that he must be seated completely upright at all times when being given anything orally. Although he had a modern profiling bed in his care homes and on the occasions that he was admitted to hospital, this still did not offer the level of upright posture that he needed, partly due to the bed’s limitations but also due to the fact that dad had a habit of shuffling himself down the mattress! Therefore in my father’s case, the only safe way to give him anything orally was for him to be seated in his chair (not your average care home chair, but one purchased by us) supported by numerous cushions.

The other key factor in dysphagia management is the consistency of all the foods, drinks and liquid medications given to the person with the condition. Powder thickeners are often prescribed to help with this, but it must be remembered that having things too thick is as dangerous as too thin. Too thick and our experience was that it would stick in dad’s mouth/throat, causing coughing. Too thin and of course it easily goes into the windpipe. Even though advice is given on the amount of thickener to use, you still need to apply your judgement on the end result for each individual food/drink or medication. To begin with this often feels like a process of trial and error, but perseverance brings knowledge.

We found that hot drinks tended to go very thin again if they were thickened when hot but it then took a lengthy period for them to be given, and re-thickening was not successful. Cold fruit smoothies thickened particularly well and held their consistency over a long period. They are also a great choice for anyone who enjoys fruit as they are so nutritious.

Where food is concerned, in dad’s case this ended up needing to be a soft/pureed diet. Again consistency is vital. We found hospital ‘puree’ food is like glue; far too thick and therefore dangerous. Care homes vary in their interpretation. ‘Liquidised’ food is often too thin and extremely unappetising. Normal meals that are gently pureed are preferable. Even with a pureed diet, however, you can be imaginative and mash many foods if they are cooked correctly, or in the case of bananas, ripe enough. What you must avoid is lumpy food, or food that has lumps amongst runny parts (i.e. lumpy mash in runny gravy, or a dense pudding with runny cream or custard). Ice cream or sorbet is often thought to be perfect for people with dysphagia, but not if it is allowed to melt and not thickened! Homemade soups are excellent and again very nutritious, but consistency is vital.

Developing a good understanding of these issues, combined with care that is personalised and dedicated to the individual, can help to minimise incidents of choking, but even with the best care you will never avoid them completely due to the nature of a failing swallowing mechanism. If your loved one is in a care home, you are relying very heavily on staff being vigilant with adhering to the guidance, but also being confident enough to support them to eat and drink and not just avoiding this for fear of ‘getting it wrong’.

People with dysphagia can become dehydrated or malnourished very easily if carers are too fearful to attempt or persevere with supporting them to eat and drink, or if such support is rushed because staff are over-stretched. Someone with dysphagia needs slow and careful support to eat and drink, ensuring that their mouth is empty after each spoonful of food or drink, but it is important to stress that if the person is in otherwise good health, they can live with this condition for a long time. My father ate and drank well and maintained a generally very stable weight during his four years with dysphagia, even increasing his weight in the times when he was not on antibiotics.

Of course it is not just swallowing food and drinks that can cause problems; people can choke on phlegm or saliva when they have dysphagia. Minimising phlegm is especially important, and given that dairy products are known to aggravate phlegm in some people, we restricted dad’s dairy intake, replacing cow’s milk and cream with an oat alternative.

There is a huge drive in dementia care for a high calorie intake, and to this end many people living with dementia are advised to eat full-fat dairy products as often as possible. However, in my father’s case, not only did these products increase his phlegm production, creating more coughing and choking incidents, but the richness of creamy porridge early in the morning and full-cream milky drinks at night produced a pattern of vomiting. Aspirating vomit is the most dangerous possibility for someone with dysphagia because vomit is such an acidic substance, and it was through aspirating vomit (having been fed something he should not have been whilst in bed) that my father ended up in hospital with a catastrophic aspiration pneumonia that was to end his life.

If you are concerned that your loved one living with dementia is developing a difficulty in swallowing, either showing a reluctance to swallow foods/drinks that they previously enjoyed, regularly coughing when they do try to swallow something, or suffering from repeated chest infections, it is vital to seek medical advice as soon as possible. Your doctor can refer your loved one to a SALT (Speech and Language) therapist; they are experts in assessing and offering advice on dysphagia. Despite my father’s advanced dementia, the Speech and Language therapist was successful in assessing him when his swallowing problems were first identified (when he was admitted to hospital with a chest infection caused by aspiration), and gave us excellent advice that helped to give dad quality of life and give us confidence in caring for him.

Until next time...

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A 'can do' attitude

Watching Paralympians you cannot help but be inspired by their ‘can do’ attitude. For these athletes, there is no barrier too great or no dream they cannot fulfil, which for a society that so often sees the negative before the positive is both refreshing and thought-provoking.

How often in dementia care do professionals stop to think about what a person can do, rather than what they cannot? So much focus is placed on need and incapacity, drumming into care providers, clinicians, families and indeed those living with dementia, what this disease takes away from a person, often extinguishing in the process any hope of living well with dementia.

Whilst the progression of dementia brings significant, irreversible changes that can be painful and upsetting for those living with it, their families and carers, it is often the case that someone with dementia can still do things that they enjoy but perhaps in a different way. More open-minded, innovative thinking can increase the quality of life for someone living with dementia immeasurably, but it needs families, care-providers and other professionals to see beyond the disease to the person within.

Eating is a common area where independence is often lost completely and unnecessarily. During my father’s 9 years in 3 different care homes, he went from being someone able to feed himself a huge selection of foods independently, to someone who needed to have all of his food pureed and spooned into him and all of his drinks thickened and spooned into him. During this transition, finger foods helped him to feed himself, and even during the advanced stages of his dementia, there were days when his mind was focused and his hands were active and strong enough to take the spoon, with assistance, and put it into his mouth, or hold the bowl or plate whilst he was fed. Supporting him to do this helped him to realise some of his potential in that moment, made the meal a more engaging experience for him, and demonstrated his desire to eat and live, a key factor to highlight to clinicians who felt that he had no quality of life and no desire to remain alive because he had dementia.

Communication is another area where incorrect assumptions are made about a person’s ability. Because society places such a huge emphasis on clear and concise dialogue, when someone with dementia can no longer hold a conversation, it is often felt that they do not have thoughts or feelings because they cannot express themselves in the conventional way. When my father could no longer speak more than half a dozen words, music and songs became his form of expression (as I wrote about here). Lyrics tumbled out, in the correct order and at the right time, showing how his mind was working and that his memories were still alive. Crucially, music also gave a window into his emotions, proving that you do not need to ask someone how they are feeling to find out this information. I have also seen how old films, TV programmes and reminiscence sessions with cards, pictures, objects, quotes and phrases can also trigger conversation from people who otherwise would not communicate.

Lack of concentration in someone with dementia can often be at the root of why so many care professionals give up on people living with dementia. If they cannot concentrate to eat, drink or talk, and many only want to pace the building constantly, it can be felt that they are simply beyond help. Not so: providing something to focus on, like a favourite possession from their past, can help to focus the person and improve their concentration.

Many people also believe that the hobbies someone used to enjoy before dementia become out of reach as their dementia progresses. However, with creative thinking and the help of innovative products where they are needed, you can transform the daily life of someone with dementia into an experience where therapy and pleasure go hand in hand. One of my father’s great passions was gardening, but sadly this was not encouraged at the nursing home where he spent most of his years in care. Even when the garden was finally landscaped into an area that was wheelchair friendly, residents generally only went outside if a family member took them (as I wrote about here), and activity was frowned upon. What a difference a few modified gardening tools, and attitudes, could have made.

Care providers need to become more aware, committed and forward thinking in how they approach the needs of people with dementia. Everyone is capable of something, and with the right support, encouragement and assistance, things can be achieved that exceed everyone’s expectations, including those of the person with dementia who may be feeling that they have lost purpose and ability, and are now deprived of activity in their life as a result. Many products that are produced to assist with tasks are heavily promoted within the disability market, of which dementia is not naturally positioned, but someone with dementia can often have physical problems that require additional assistance and, regardless of that, many products can have multiple uses when a creative brain and a holistic approach are deployed.

Often obstacles to someone with dementia being able to show what they can do are simply solved to enable positive interaction. For example, is the person sat comfortably and properly supported in a chair or wheelchair that is right for their build/posture etc? Are they dressed appropriately and at a comfortable temperature? Are they hungry or thirsty? Do they need the toilet or are they sat in a soiled pad? Is the environment free of other distractions? Is the person otherwise in good health and not suffering with an infection that can impair their ability to participate? Are they being communicated with in a manner that is appropriate for them? Answer these questions positively, and you can be assured that the person with dementia, however limited their abilities may appear, can join in something that they enjoy.

In many respects, the worlds of disability and especially disability or impairment in the young, are streets ahead of dementia care when it comes to demonstrating a 'can do' attitude. Yet thinking back to the lives our older generation had in their teens, twenties and thirties, many of them would have been up against great hardships and setbacks but powered through regardless with hard-work and dedication. Indeed, many veterans will say that wars were only won because those fighting abroad and those at home had a ‘can do’, will-to-win attitude, even against the odds. Keeping this spirit alive helps to keep our older generation, and especially those living with dementia, alive, engaged and leading enriched and meaningful lives. If our Paralympians can do it, it is not beyond the bounds of possibility in dementia care.

Until next time...



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NOTE: If you run a company involved in the production of innovative products for people with dementia, I would be interested in hearing from you. Please contact me through Twitter or Facebook.