Home sweet home

I seem to have found myself quoting a particular statistic so much in the last few weeks that it is now imprinted in my mind:

Alzheimer’s Society: Fix Dementia Care Homecare report 

I include this stat in my dementia training for health and social care professionals, which might seem strange since many social care staff that I train and mentor are working in care home environments, but this one statistical sentence opens up so many extremely interesting discussions about the role of ‘home’ in our lives, the links to independence, choice and control, and the feelings and emotions evoked by ‘home’.

The role of ‘home’ in our lives

Why such an overwhelming number of people would want to remain at home is unsurprising. Our homes are meant to be our place of safety and security, places we personalise, feel comfortable, where we can truly be ourselves and do as we want.

So what about the 15% of people who don’t necessarily want to remain at home - do they not have all of those feelings about their home? They may well do, but those feelings are possibly tempered by concerns about family members providing care and support, or the person is living alone and considering a communal home due to fears about isolation and loneliness.

‘Home’ is a really interesting concept in dementia care. As a person’s dementia develops, the role of the person’s home can change: The person may form an attachment to their home that becomes overwhelming to the point that they won’t venture out, if the person does venture out they may not be able to find their way home again (even if they’ve lived in the same neighbourhood for many years), and sometimes home can become an alien place that the person no longer recognises, even though nothing has changed in numerous years.

Home, in the person’s mind, may become somewhere they lived in their childhood or earlier life, which could lead the person to go out to try and find that home again. “Please take me home,” may also be a frequently used phrase if the person is somewhere they don’t recognise, like a hospital, care home, or their own home that simply doesn’t feel like theirs any longer.

When ‘home’ is the problem

Often we assume that so long as the person remains at home, being part of that 85%, they will cope fairly well with their dementia. Yet the person’s home, for all its perceived familiarity and comfort, can sometimes unwittingly contribute to symptoms like disorientation and frustration.

Environmental changes are rarely high on the priority list when families are caught up in thinking about the person’s immediate care and support needs. Sadly, the knock-on effect of this lack of environmental awareness is family members, friends or neighbours gradually doing more and more for the person (and/or a crisis occurring), which can negatively impact upon those providing unpaid care and is even worse for the person with dementia.

In that utopian world where everyone has good post-diagnostic support - which I would argue is a human right - the person and their support network would be assisted to look at how the home is working for the person, with the end result being the creation of a more enabling environment (using the world-leading research from the University of Stirling as a benchmark), where the person’s independence could be preserved for as long as possible and their need for care and support reduced.

The home might be modified to include:

•   Word and picture signage to help the person navigate around their home, and instructions to enable the person to operate household items (or even just to be able to make THEIR guests a cup of tea rather than the guests taking over and doing it themselves).

•   Clear door and drawer fronts so that the person can see what is inside a cupboard or drawer.

•   Colour contrasts across the home but particularly in the bathroom so everything isn’t white.

•   A layout that reflects how the person currently moves around their home, and changes as the person’s needs change - for example, you might remove internal doors to avoid the appearance of barriers or the fear of what is behind a door when it's shut.

•   Lighting that supports understanding of daytime (especially when it’s really dull outside) and nighttime.

•   Technology that helps to support the person’s independence - a dementia clock, for example, could help the person know what the day/time is so that they can orientate themselves.

•   Accessible and enjoyable outside space - for many people, this aspect of ‘home’ is more important than the building.

When ‘home’ moves

So what happens if there is no option and ‘home’ has to change? Care homes are often seen as prisons, but your own home can equally become a place of confinement, which has led me firmly to the belief that what imprisons people with dementia isn’t necessarily buildings, but the attitudes of those around them.

That really gets to the heart of why I talk about that Alzheimer’s Society statistic so much. I want staff to be challenged to think about what home really means for each person they are supporting, and to think about anything and everything that we can do to make the person’s current circumstances, which may not be of their choosing (my dad certainly wouldn’t have chosen to go into a care home) the very best they can be.

This can happen in a variety of different ways, but broadly speaking it’s about maximising the person’s choice and control all day every day, promoting and nurturing their independence, understanding and really embracing the person’s life story in a myriad of guises, and perhaps most significantly of all, validating the person’s sense of what their home is, why it’s important to them, and getting as close as possible to providing the happy feelings they associate with their concept of home.

The ultimate interpretation of ‘home’

That last point is vital, because for everything that I’ve said about the building and contents that we call ‘home’, it’s the feelings and emotions that come from the people a home is shared with (a childhood with parents and maybe siblings, a young adult life as a newlywed, or the home where a person brought up their children) that make up the ‘sweetness’ in the title of this blog.

In those bygone days the building itself wasn’t necessarily the safety and security, that came from the person’s mum and dad, husband or wife. The comfort came from the cuddles and love that was shared. The fun came from the laughter and mess of a young family. The personalisation came from choosing furnishings and decorating as a young couple, and the freedom to be ourselves came from being completely at ease with those the home was shared with.

Whilst that ‘sweetness’ may be associated with many years ago, we can ensure it is never airbrushed out of the person’s life today. After all, would you want your ‘home’ lost forever?

Until next time...

You can follow me on Twitter: @bethyb1886

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Routine, routine, routine

With a New Year often comes resolutions to change our routines. Things we've always done, that perhaps aren't so good for us, are intended to be banished in favour of routines that are healthier or that we perceive are better for us in some way.

Routine is in sharp focus for me since becoming a parent - the deluge of 'advice' on the best routine for your baby can be pretty overwhelming, and we decided before our daughter was born that we were going to do things our own way, responding to her as the individual that she is. To this day, we still don't own a 'baby book' that attempts to 'train' our child like a mechanical doll!

It's this parenting experience that has inspired me to think about how routine is perceived for people at the other end of the age spectrum, and particularly people who are living with dementia. The majority of professional 'experts' seem to be in favour of supporting the person with dementia to retain their own personal routine - that is until the person needs inpatient hospital care, or indeed residential social care, in which case their routine is mostly thrown out of the window and replaced with whatever the institution believes helps them to run their services most efficiently.

Whenever I've been asked about routine, I've generally advocated for the person's own routine to be maintained and protected to give the individual continuity. As so much changes for the person with dementia, this seems a sensible way to help the person to remain grounded in something that feels familiar and that gives them the best chance of maximising their independence. Most people I know who are living with dementia generally say that their routine is vital to their sense of wellbeing and ability to cope.

But there is one very important caveat. Be guided by the person. As family carers, or health and social care professionals, we should never be so wedded to keeping to what we perceive is the person's routine that we become oblivious to the person trying to change their routine. Often, if a person with dementia begins to stray from their 'normal' routine, we at best look to guide them back to it, and at worst become so obsessed with the routine that we berate the person for not adhering to it and try to forcefully pull them back into it, regardless of whether this is what they want or not.

It's the routine. It's how it's always been. It cannot change. Ever.

Except that this is tantamount to trying to fit a square peg into a round hole. It doesn't work. Routine should never become a watchword for control. For some people routine is vital, for others less so, but regardless of how the person has historically run their life they are completely at liberty to change that now. Just because the person is living with dementia doesn't mean that they don't know what they want.

Living with dementia may mean that the person can't necessarily find the words to explain what they want, and through our bombardment of communication, questions and nagging, may become so worn down that they either just give in - which could lead to feelings of worthlessness or depression - or fight back, which is commonly labelled by the ill-informed as 'challenging behaviour' (a term I dislike immensely).

As individuals providing care and support, we have to have the courage, however hard it might be, to take a step back and ask ourselves:

•     What is the person trying to tell us?

•     Have the person's needs changed to a point that their 'old' routine no longer works for them?

•     Is there something about when the person wants to eat, sleep, wash or go out that is different because they are trying to respond to what their body is asking them to do? (We are not wired up to their brain or their body, and we cannot ever REALLY know what either is telling the person to do).

•     Does the person want to change their routine just because they can? For a person not living with dementia, this might be positively packaged up as an 'important life change', a 'New Year's resolution', a 'health kick' or some other such celebrated deviation from the norm. Why when a person with dementia wants to change things is the reaction so often to throw our hands up in horror and declare that this won't work and shouldn't happen?

So often I hear from families, or health and social care professionals, who feel that there must be something intensely wrong with the person for changing their routine.

·     Is this a sign that the person's dementia is progressing? Maybe, maybe not. What is it a sign of is the person wanting control over their life, of having the ability to follow what they feel is right for them and the confidence to do that. So not an entirely negative turn of events.

·     How can I stop this? It's a type of arrogance to believe that you can or should. To take away choice and control is to condemn a person with dementia to a life that disempowers them and is completely counterproductive to what you should be wanting to support, which is to enable the person to live as well as possible with their dementia in a way that makes sense to them.

·     What can I do? You can support the person to find a new routine that works for them. That may be one set regime that they like to follow, or it may be a movable feast where every day is a little different. Yes, that can be hard to predict and more difficult to support than the one fixed routine, but it's about what the person wants and needs and they are the only real arbiters of that.

Until next time...

You can follow me on Twitter: @bethyb1886

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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...

You can follow me on Twitter: @bethyb1886

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Part 2) When a label isn't enough

***This is a two part blog post***

Please read: Part 1) When a label isn't enough

Supporting someone throughout their dementia journey is vital

Regardless of how much the government needs clear statistics of exactly how many people have dementia in the UK, presumably so that they can plan and fund services accordingly (we hope!), this must not come at the expense of the individual. Which is why, whilst I am pro early-diagnosis for those who seek it, I am completely against screening (or case finding) the population for dementia under the current proposals for doing this.

The plan that is currently in the public domain is for GP’s to assess all patients over 75 for dementia within their routine appointments. This means that you could turn up to see your GP with a problematic ingrowing toenail and then be asked questions about your memory. Moreover, since this is not an official screening programme, unlike for example the tests ladies are invited to attend for breast and cervical cancer, the patient will not have the opportunity to plan to take a family member or trusted friend to the appointment with them to provide support.

This covert tactic of screening (case finding) the population is both fundamentally wrong and goes against the principles of patient choice. It also undermines the patient’s relationship with their doctor, potentially destroying trust, and could lead to patients avoiding seeing their GP for health problems that could require urgent care or issues, like for example with vascular health, that could in the end lead to dementia if untreated. The only option left open to patients who need to see their doctor but do not wish to answer questions about their memory will be to refuse to comment (which still ticks the box that requires the investigation to have been attempted).

Within hospital settings, doctors are already required to assess all patients over 75 who have been in hospital more than 72 hours to see if they have dementia. Doctors are meant to use their discretion as to the ability of the patient to undergo such questioning if they are still very poorly, but with the NHS chronically overstretched, again this is likely to turn into another box-ticking exercise.

At this point, I should stress that in both primary care and acute medicine, it is of course possible that dementia may be contributing to the condition that the person has presented with, and therefore investigations for dementia in those cases would be necessary to treat the person holistically and are entirely appropriate and justifiable. However, random assessments based on age, without informed consent or the chance to have someone close to you present, are in my view unethical.

Screening is also not supported by the current guidance from the National Screening Service – their view is that an accurate method for screening the population for Alzheimer’s disease (just one form of dementia – imagine the complexity of screening for the many different dementias) doesn’t currently exist. If they are right, these covert plans could lead to many false positive results, a huge amount of unnecessary anguish and drugs being taken that shouldn’t be, as well as potentially life-changing decisions being made as a result of entirely inaccurate assessments.

I am also concerned that focusing on diagnosis in this very mandatory way, based largely on someone’s age, brings up other issues. It helps to re-enforce the viewpoint within the health and social care systems and the wider population that dementia is a condition of old-age, which it certainly isn’t exclusively at all. By doing this it means that potentially people with early-onset dementia (dementia in someone under 65) could be ignored because their age demographic doesn’t fit the ‘considered norm’.

I also personally feel it is very disrespectful to our older generation to subject them to this type of widespread scrutiny, or case finding as it is otherwise known, that I suspect may well be very unwelcome – indeed has anyone even asked this huge swathe of the population if they agree with this proposal? Dementia is a stigmatised condition and many people, especially older people, have very negative viewpoints about it and huge fears about developing it. Like most of us, they will increasingly know of someone with dementia, and may have heard extremely negative stories about their care and support. The last thing they want is to feel as though they are being herded like sheep into a particular pen. The health service really must grasp the concept that everyone is an individual and act upon that in every aspect of healthcare, rather than having one-size fits all tick-box exercises for everything.

Creating awareness, busting myths, tackling stigma, improving the breadth of specialist dementia services, removing the postcode lottery around accessing services, sorting out adult social care funding so that the system is fair and equitable, providing carers with the support that they need, and investing in therapies that make a tangible difference to people’s symptoms and improves their quality of life will naturally help to change perceptions of dementia, and encourage members of the public to come forward of their own accord to ask for help if they, or their family, feel it is needed.

At present, many people who are already diagnosed, and their carers, receive little or no help with understanding dementia, day-to-day living, or planning for the future. Placing potentially thousands more people into that vacuous trap is not helpful to anyone other than those who want to gather statistics. You may argue that accurate statistics are needed to plan services, but we do currently have a number for people diagnosed with dementia and we have so far done nothing to plan or implement services that support all of them, or from what I hear, even a majority of them.

So why are dementia diagnosis rates so patchy around the country? I don’t believe that this is as a result of there being a widespread ‘no cure so no point getting/giving a diagnosis’ culture. I suggest this correlates with the levels of awareness and support in those areas. If local health and social care services are run by sympathetic people with extensive training or professional interest in dementia, of course people with dementia who come into contact with those services are more likely to be diagnosed quicker and receive better care, reassurance and advice.

Equally, if local dementia activists have done a wonderful job of raising awareness, and numerous thriving community services exist and are well supported by local businesses and media, the ‘dementia message’ will seep into many more homes and dementia will not scare people in that community in the way that it might in others. If people hear about the good care and support that their friends, colleagues and neighbours have had when they first noticed dementia symptoms, they are more likely to seek help themselves if they develop problems.

In the end, like most things in health and social care, dementia diagnosis rates come down to your postcode. Perhaps the irony of these massive differences in the diagnosis rates between different health authorities only further highlights the need for ‘dementia friendly communities’ across the UK. If these truly existed within every community, dementia diagnosis rates would undoubtedly rise because people would feel comfortable talking about, and living with, dementia. Likewise, if we had effective, long-running  countrywide public awareness campaigns, like those mounted for certain types of cancer, again people would think, assess, understand and be more willing to come forward.

There are no quick fixes to turning the UK into a country where people with dementia are not stigmatised, where they and their carers are fully supported, where a diagnosis isn’t simply a useless label, and where communities are truly dementia friendly. This ill-thought-out screening/case finding plan is not the answer. Early diagnosis must involve patient choice and, crucially, post-diagnosis support. Built into that there must be involvement and support for those closest to the person with dementia, if the person wants that, at every stage of the dementia journey, from diagnosis to end-of-life, in order to make each individual dementia journey the best it can possibly be.

Bring all these factors together, and dementia diagnosis, care and support would be revolutionised in the most person-focused, carer-focused environment imaginable. The question is, can the UK rise to the challenge?

Until next time...

You can follow me on Twitter: @bethyb1886

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Don't ignore me

Everyone with dementia has the right to expression, yet a lot of dementia care still focuses on imposing the will of the care provider on the person, rather than assessing what the person themselves actually wants.

Even people with an early diagnosis can walk away from hearing that news, tell friends and family and find that instantly an assumption is made about their ability to make choices in their life. Someone with a diagnosis of dementia is still the same person that they were before they were diagnosed, and with the right care and therapies will hopefully remain that way for the longest possible time.

Much of society assumes that someone with more advanced dementia cannot express themselves if they are unable to coherently articulate, but that simply isn’t true. Speech is only one form of communication; assessing body language, the choices being made, positive or negative reactions and different behaviours can often tell us a great deal without a single word being uttered.

Is the person’s body language defensive or welcoming, are they consistently choosing to reach for a particular food or drink over something else, or showing a preference for a particular colour of clothing. How do they react to moving to a different environment (like going outside), what gives them pleasure (anything from favourite music to a warm hug or having their hand held) and what causes distress? What can you do that engages their attention, and keeps it, and what do they appear ambivalent towards?

Playing your part in helping to stimulate expression is very important. If someone with dementia cannot hold a conversation, can they express themselves through music, writing or drawing? However messy what they present to you may be, does it tell you something about how they are feeling? What about sexual expression – many people feel very uncomfortable with the idea that someone with dementia may have sexual thoughts or needs, but they are still a human being. Are they trying to express a need to be loved?

A popular phrase to describe someone with advanced dementia is ‘unresponsive’. In my view it is a description that says more about the abilities of the person using it than the person with dementia. No one is ever 'unresponsive'. You may have to work a bit harder to find something that creates a reaction, but even someone with very advanced dementia is capable of expressing themselves in their own unique way if they are stimulated to do that, and the person enabling that stimulation then has the ability to interpret the resulting expression.

During the last few years of my father’s dementia, he lost his ability to contribute to a conversation and would often appear ‘unresponsive’ to questions or activities around him. Although he was able to say occasional words, his expression came mostly through song lyrics, facial expressions, eye contact, hand gestures, clear enthusiasm for some things (like going outside) and a clear dislike of other things (like having his temperature taken in his ear). He had what I would describe as his ‘blissed-out’ expression, when it seemed as if all was well in his world and he was utterly contented and happy.

As a family we became experts in interpreting dad’s expressions, and because of that we were able to help the professionals caring for him, especially during the times when he was in hospital and surrounded by people who knew very little about him and his reactions. Busy environments, like hospitals, are places where the delicate, intricate way in which someone with advanced dementia expresses themselves can so easily be lost, which not only puts the patient at a disadvantage but also leaves those caring for them in the dark.

As a society I think we have become so heavily reliant on speech as a means of communication (because it suits our need for instantaneous information that is delivered quickly), we are in danger of losing the art of interpreting the needs of anyone for whom speech does not come easily, coherently, or in some cases, exist at all. Without the ability to interpret non-verbal expressions, and in the case of someone with dementia, ally that with everything you know about the person, their likes and dislikes, history etc, you can easily believe that someone is 'unresponsive' when in actual fact they are desperately trying to tell you something.

Even in dad’s final days, he still showed flickers of expression, which only proves how much the human spirit wants to exercise the right of choice right up until the end of life. During that time, dad’s expressions were stimulated by hearing favourite music, comforting words we were reading from books or personal things we were saying to him. At such a sensitive time, seeing his small but hugely significant expressions gave us comfort that dad’s end of life was something that was peaceful and as he wanted it to be.

From the very beginning of someone’s dementia to the end, everyone involved in their care should be putting the person with dementia ahead of their personal opinions or ideas, and that is never more important than when it comes to how that person expresses themselves. It can be easy to ignore an expression that isn’t clearly spoken, but the price paid can be huge in terms of emotional, physical and mental distress to someone who is already vulnerable, often frustrated, and ultimately looking for understanding, appreciation and love.

Until next time...

You can follow me on Twitter: @bethyb1886

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