The private world of incontinence

With over 200 blogs on D4Dementia, some of them now 7 years old, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at continence.

In June 2013 I wrote a blog entitled ‘An urgent need to understand’, which talked about some of the experiences we’d had with my dad’s incontinence and ways in which a person can be supported to maintain their continence. In that blog I said:

“The devastation that incontinence can cause both the person with it, and potentially a spouse or family member who is caring for them, is immense. The more private a person is the harder it will be felt, which was certainly true for my father, who was incontinent for nine years.” 

Continence, perhaps more than any other issue, is strongly linked to privacy. In my experiences as a mum I know that not long after a child is potty trained they begin to want privacy when going to the toilet. Such privacy soon becomes the norm for the rest of their life, unless incontinence accompanies a progressive health condition like dementia, in which case needing the support of another person, whether they are your own family or a health or care professional, becomes the new norm. Just because it’s the norm, however, doesn’t mean it feels normal or will ever feel normal.

Continence problems are strongly associated with ageing, but certainly don’t exclusively affect older people. Last month marked World Continence Week, with a statistic that bladder weakness alone affects 1 in 3 people and is more common than hayfever.

Continence has come onto my radar many times since I wrote ‘An urgent need to understand’. Professionally this has predominately come through my training and mentoring consultancy work, with one particularly striking example being when homecare staff from one of my consultancy clients came to me to discuss a lady living with dementia who was repeatedly developing bladder infections and soiling herself. 

The infections increased the lady’s confusion, and despite trying to provide optimal support staff said that they felt they were failing this lady every time she got another infection. I encouraged staff to really think about how the support being provided was responding to this lady over the course of each 24-hour period. Care staff often only analyse the time they spend with the people they support, rather than what is happening when they aren’t there.

It transpired that this lady was only using the toilet when staff weren’t present, and would often put off going to the toilet for many hours purely because she was confused about the time care workers would visit and concerned about her privacy (staff learnt that this lady had had a bad experience with a previous care worker during a trip to the toilet).

Many different approaches were taken to resolve this issue, including ensuring the lady had a dementia clock so that she knew what the time was, a personalised schedule that was clear to her for when her care visits were, and a lock on her toilet door (that could be opened from the outside in an emergency).

Simple measures, but alongside staff really understanding this lady’s need for privacy for the first time they proved to be the difference in supporting this lady to use the toilet more regularly, thus reducing the recurrent bladder infections she had and improving her quality of life as she soiled herself less. 

I would always encourage anyone supporting a person who is struggling with continence to think about the bigger picture, considering how the environment and the person’s routines and plans for the day are affecting their continence. If the person’s day-to-day life isn’t supporting them to use the toilet as often as they need to, problems are inevitable.

Continence hasn’t just come onto my radar through my experiences with my dad and my work, however. On a personal level, continence is something that my midwife was really open with me about during my pre and post-natal care when I had our daughter. 

Any lady who’s has a baby will have heard the iconic words, “Do your pelvic floor exercises!” Pelvic floor exercises aren’t just for women who’ve recently had a baby though. I’d argue that they are important throughout all of life, as the stat from World Continence Week ‘Prolapse can affect half of all women over 50’ shows. Although pelvic floor exercises alone won’t cure prolapse, they are often recommended alongside other treatments.

I’ve always felt that preventing incontinence is a great deal easier than treating the physical, mental and emotional effects of incontinence purely because incontinence is about so much more than just wearing a pad. As I said in my ‘An urgent need to understand’ blog:

“Changing our attitudes towards continence, and breaking down the taboo’s associated with going to the toilet, must be a key priority if we are to improve the care provided to everyone who is living with dementia.”

Until next time...

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Resolve to tackle loneliness

“It’ll be lonely this Christmas

Without you to hold

It'll be lonely this Christmas

Lonely and cold.”

So sang English glam rock band Mud (in the style of Elvis Presley) to top the UK singles chart in 1974, selling over 750,000 copies and reaching Christmas number one.

44 years later, and as this song joins the throngs of Christmas music on the airwaves for another year, I’ve found myself wondering if we might ever reduce the estimated 9 million+ people in the UK who are said to be ‘always or often lonely’ to closer to the number of copies this song sold back in 1974. If we could, that would mean 8,250,000 less lonely people.

The 9 million+ statistic came from research by The British Red Cross earlier this year. They described the figure as representing ‘epidemic levels of loneliness and social isolation’, and few could argue with that assessment. It’s a hugely negative reflection on our modern-day society, and ironically comes in an age where we’ve never had so much connectivity through technology and yet so many of us feel more isolated than ever before.

The reasons for loneliness in the UK are many and varied, with commentators sighting everything from social media use to poor work-life cultures. I personally feel that the English 'stiff upper lip' culture also plays a role - not wanting to admit you feel lonely or isolated, fear of being rejected if you do seek help or support or even just reach out to someone you know who may themselves be too caught up in life to respond to you in the way you hope they might, and feeling compelled to hold all of your feelings and worries within you.

Amongst those most vulnerable to isolation and loneliness are older people, those living with long-term health conditions, including dementia, and those who provide care and support for a loved one. The very nature of ageing means you lose friends and family as your peers pass away, and of course living with dementia can pose such significant challenges with social interaction that many people would rather avoid it, particularly if they haven't managed to connect with like-minded individuals through peer support (examples of peer-support groups for people with dementia include DEEP and DAI).

Indeed, such is the risk of isolation and loneliness for people with dementia that the Dementia Action Alliance 'Dementia Statements' (that I wrote about in August 2017) specifically say, "We have the right to continue with day-to-day and family life, without discrimination or unfair cost, to be accepted and included in our communities and not live in isolation or loneliness." 

It’s also worth remembering that social isolation is thought to increase a person’s risk of developing dementia, hence why the importance of social interaction is highlighted as a potential preventative measure. With this in mind, in my training for care providers I talk to social care staff about the dangers of isolation and loneliness amongst the people they support and we discuss ways this can be combatted.

While staff who provide support to people in their own homes are often much more aware of the risks posed by isolation and loneliness, as many of their clients live alone, care home staff often haven’t considered that loneliness might be a significant factor in the lives of the people that they are supporting, simply because they assume that if a person is living in a communal environment they won’t be lonely. Yet quite the opposite is true - some of the loneliest people in the world are those in a room full of other people, and a bedroom can be a very isolating place if you don’t feel able, or cannot through physical or mental health issues, come out of that room to socialise with your peers.

With the festive season seen as a particularly isolating time of year, many charities and organisation are again voicing their concerns about loneliness. Last week Age UK published analysis that said 1.7 million older people in England can go for a month without meeting up with a friend, and that 300,000 over 65s have not had a conversation with family or friends over the same period. They also said that half a million older people across the UK are likely to feel lonely this Christmas, with more than 230,000 older people expected to be on their own for at least one day over the Christmas period (from Christmas Eve to New Year’s Day).

After Christmas, I predict that there will be more reports of helplines receiving record numbers of calls over the festive period. Last Christmas, The Silver Line – the only free, 24-hour, national helpline for lonely and isolated older people open all year round – reported that Christmas 2017 was their busiest ever, with over 14000 calls made to their helpline, around 1000 more than during Christmas 2016. Their greatest spike in calls was on New Year’s Day, with 1773 callers – up 14% on January 1st 2017. 

So how is loneliness being tackled? The response ranges from the Campaign to End Loneliness to the legacy work in memory of Jo Cox MP, alongside the UK government appointing the world’s first Minister for Loneliness (Tracey Crouch, who later resigned her position over an unrelated matter), and the publication of England’s first Loneliness Strategy.

But despite all of this, loneliness remains a huge issue. In the run up to Christmas 2015, I wrote for the UK Huffington Post about a campaign Friends of the Elderly were running about loneliness, and now here we are in 2018 and I have even more campaigns I could write about, which suggests we aren’t really making significant progress.

Why? Because to tackle loneliness we all have to do our bit. High profile initiatives, whilst very welcome and often packing a significant punch, can’t on their own make any individual feel less lonely, or persuade each of us to do something to help combat loneliness amongst our family members, friends, neighbours and acquaintances.

That ‘something’ doesn't have to be a huge action, it can be really small. At this time of year, just sending a Christmas card to someone you know says “I’m thinking of you.” If that person is older, not local to you, not on email and you don’t have an up-to-date phone number for them, a card is a simple way to reach out. Or for people who don’t want to write Christmas cards, donate to one of the charities that help to support people who are at risk of isolation and loneliness.

Of course there is no simple fix to the UK’s loneliness problem - a cuppa with your neighbour or having a festive clear-out and donating your unwanted items to a charity that supports people who are isolated and lonely won’t banish loneliness for every isolated person. But as you think of your New Year’s resolutions, bear in mind that a resolution to do your bit to tackle the UK’s loneliness epidemic is something that is achievable for all of us and might just make someone’s day (as well as yours).

Thank you for all your support in 2018. Until 2019...

You can follow me on Twitter: @bethyb1886
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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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Is your workforce person-centred?

This morning I spoke at a conference on the importance of knowing the person. My audience was predominately social care providers. My remit was to focus on real lives, drawing on my experiences of care in terms of the importance of knowledge and skills and with a strong message of person-centred-ness in all care.

Since so many of my blog readers are also social care professionals, I thought it would be worth sharing some of what I spoke about. But this blog isn’t just for social care professionals, it’s for families too. My understanding of what makes great person-centred care began in the years my dad was living with dementia, and despite all of the experiences I’ve had through my work since, the education I had from my dad remains unsurpassed.

© BETH BRITTON 2016

Since my dad’s passing, the rise in prominence of person-centred care has grown. Virtually every care and support provider will tell you that their care is person-centred. The danger with person-centred care being in the mainstream, however, is that huge variations now exist in how different providers interpret this.

Everyone thinks they deliver great person-centred care, but do they?

As part of my presentation, I shared three slides taken from the training that I devised for social care staff, particularly care home staff, that is based on my personal experiences and designed to help staff understand more about the practicalities of what person-centred care means. Some of the examples I use are very obvious but don’t be fooled by the simplicity. The most person-centred organisations I know realise that EVERY little detail matters.

To explain the many facets of person-centred care, I like to begin with the obvious physical differences between individuals, picking up on their appearance and personal effects. But I also talk about interpretation beyond the physical characteristics. Think expression, personality and history as just three examples.

Expanding more into everyday life, it’s vital to understand the role of a personalised environment and appropriate communication. Beyond that, the key question is how each individual's qualities, interests, preferences, abilities, needs and aspirations are supported. Maintaining skills, a sense of purpose and the enjoyment of achievement is vital for all of us, but for this to happen in care environments staff need to believe in it and make it happen. In dementia care especially we talk about entering the person’s world, but in reality this is vital to achieving person-centred care for any individual.

I know from my experiences of delivering my training that staff sometimes wonder how being person-centred is going to benefit them. Their bosses might argue that their staff aren’t at work to benefit themselves, they are there to provide care and support for the people accessing their service. But if we don’t look at how being person-centred enhances the knowledge and skills of staff to help them feel a sense of achievement and pride in their work then we are making a big mistake.

When staff struggle to support a person who is living with dementia because that person is experiencing symptoms associated with their dementia like confusion, anxiety, emotional outbursts or repetition, being person-centred in their whole approach can not only halt the escalation of these symptoms, it can change the feelings, perceptions and motivation of staff. They don’t leave work feeling baffled and as if they’ve failed the person, but instead are able to reflect on how their response helped the person, and how they might refine that response further in the future to enable an even more positive outcome.

© BETH BRITTON 2016

Ultimately, though, it would be wrong to talk about person-centred social care and not address the culture and leadership of organisations. It’s no fluke that every CQC ‘Outstanding’ rated adult social care provider is well-led.

Sadly, I’ve seen too many care homes where Joseph White is supping his morning coffee (that should be tea), eating a digestive (that should be a custard cream) wearing the vest belonging to Margaret Ross (but Margaret’s a large lady and she’s got plenty so it’s fine – it isn’t), while Joan Ellis is listening to Frank Sinatra (even though he’s her least favourite member of the Rat Pack – she’s a secret Sammy Davis Jn fan. Oh and by the way, she’s mumbling about being cheated on and fighting with a man because she is remembering headlines of Sinatra’s stormy personal life). Meanwhile, Edward Lewis is pacing the corridor, wanting to fix engines but being told to sit down and have a nice glass of juice (only Edward hates ‘juice’ because he knows it isn’t real orange juice, just watered down squash).

The challenge for every social care provider isn’t just knowing, and by knowing I mean REALLY knowing, the people they are providing care and support for, but knowing their workforce too. Joseph, Margaret, Joan and Edward could just as easily be employees that a social care provider doesn’t treat in a person-centred way as they could be residents or clients.

Complacency is the enemy of person-centred care. Recruiting staff with the right values and ensuring they complete e-learning modules on person-centred care isn’t enough. Authentic and embedded person-centred care is cultural, organisational, and comes from the very top and pervades down through every employee no matter what their role or responsibility.

So, my challenge to every social care provider reading this blog is:

Embed observation and responsiveness into your leadership. If you think you already have, do it again, evaluate and keep evolving the leader you are, and the expectations you have of everyone in your team.  Just as no two days with my dad during his years with dementia were ever the same, so the knowledge and skills needed to be a truly person-centred social care provider never stand still either.

Until next time...

You can follow me on Twitter: @bethyb1886

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Living with dementia in your own home

Whenever a report on dementia talks about what people with dementia want, enabling the person to remain in their own home for as long as possible usually features pretty highly. A diagnosis of dementia should never mean that you have to leave the environment that you are most comfortable in at a time when so much else in life may be feeling uncertain, although sadly for many people with dementia what they may want often isn’t what ends up happening.

In my dad's case, the combination of his diagnosis coming ten years after his initial symptoms began, mobility problems with his knee, living in a rural location and, most importantly, a sharp deterioration in his dementia following a significant stroke (which was what finally led to his formal diagnosis of vascular dementia), meant that his doctors ruled out any return home from hospital, and he went on to spend the last nine years of his life in care homes.

I have many happy memories of those nine years, and this blog certainly isn't intended to 'bash' care homes, but it is fair to say that given the choice I'm as certain as I can be (bearing in mind I can't ask my dad) that he would have preferred to live those nine years in his own home. For people in different circumstances (IE: a more timely diagnosis, less advanced dementia, and potentially living somewhere less isolated) remaining at home should be the default option, unless they expressly want to move into a care home.

The main barriers to a person with dementia successfully living in their own home are usually:

•   Living alone, without a family member to support them, or carer breakdown because too much pressure has built up on a family member who has been providing support (I've written about carer issues here).

•   Lack of funding (either personal or public) to engage professional homecare support, or an inability to find reliable and specialist dementia trained home care support (I've written about homecare issues here).

•   An environment that, however familiar it's been in the past, has now become a hostile place for the person who is living with dementia.

It is often very difficult for the family and friends of a person with dementia to understand how somewhere so familiar as the person’s own home can potentially become such a hostile place for them as their dementia progresses. After all, that familiarity is usually the main argument for the person remaining in their own home. It is worth considering that aside from the obvious issue that the person with dementia may stop recognising their home as their home, the home itself can present significant issues.

 

It's pretty rare that any of us signpost up our houses - we know which rooms are what, and what lies behind every cupboard door. But for a person with dementia, it may become vital to use signage (text and pictures/photos) around the home in order for the person to successfully navigate around their environment every day. Doing that can also help to avoid incontinence issues, because the person has visual clues about where the toilet is and can hopefully get there in time. In addition to signage, you could also repaint doors to colours that contrast with the walls surrounding them.

 

Once in a bathroom, most of us like to have everything matching and often white, but it's well known that a person with dementia may struggle to navigate the bathroom if everything blends in together. What can really help is to add some colour, for example by changing the toilet seat, toilet flush lever and shower curtain so that these items stand out.

 

Kitchens are another place where we like to have matching items, with fitted kitchen that have numerous identical cupboard doors and drawer fronts. Again, some signage can assist a person with dementia to find what they are looking for, helping them to retain independence in the preparation of food and drinks. An alternative to signage might be to replace the existing solid doors with glazed doors, or some open areas like a plate rack and mug tree so that these items are clearly visible. Signage, changing doors or having open areas also applies to other cupboards around the home, for example in the bedroom or bathroom.

 

It's not all just about signs either - lights can also help with navigation, particularly at night, and often at floor level to guide the way to the bathroom or down the stairs. Contrast is also important at the dining table – if the table cloth and the plates for eating all match, it can be difficult to know where to place food and eat it.

 

If there are concerns about a person falling, sensors can help to monitor movement, and for people who are living alone, call bells to alert family or emergency services if the person has hurt themselves are vital. Likewise there are also sensors to prevent flooding (from taps not being turned off) and to make cookers safer. It's also important to think about security - both from bogus phone calls and undesirable people who may come to the front door.

 

Other environmental changes might include removing or covering mirrors, if the person is experiencing difficulty understanding what they see in a mirror. Think too about flooring and furnishings. Patterns can become distorted, so be mindful of this in relation to wallpaper, and some flooring can appear to look like glass or water. Changes in floor coverings from room to room or using rugs can all be problematic as they may appear to indicate a step to a person with dementia. Even the TV can be an issue if the person struggles to understand that what they are seeing is on television and not actually in the room - this was a problem my dad had in his early, pre-diagnosis years.

 

Eventually, items like a stair lift, adjustable chair, profiling bed and bathroom modifications like a walk in shower (with shower seat) and even a hoist may be needed. There is no denying these items are hugely expensive, and even some of the more 'low level' modifications listed above come with a price tag attached.

 

So what happens if you can't afford to make your home more 'dementia friendly'? In short, you probably end up in hospital or a care home, often before you really 'need' to, just like my dad did. That is the sad and frankly shocking reality. Little has changed in the 13 years since my dad was in that situation, except that more people are being diagnosed with dementia and the UK is deep in austerity.

 

To be a country that is truly the best place to live with dementia, we have to find a way to support what sounds like a very basic aspiration - "I want to remain in my own home" - at a time when trying to get help from your local authority for care and/or equipment needs is likely to be met with anything from resistance to outright rejection.

 

I would, however, implore all families to do what they can - even the very low level things like signage, a night light, and making your bathroom less 'white', will go go some way to supporting a loved one and prolonging that period of living at home. One of my main criticisms of the film 'Still Alice' was that it didn't portray the things families can do to help their loved one to navigate around the home. For an educated, resourceful family like the Howlands it was astonishing that such modifications of the environment didn't happen as a matter of course. For anyone reading this blog who finds themselves in the same situation, I hope that there is some inspiration for you to do things a little differently to Alice Howland’s loved ones.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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A helping hand

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

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

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

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

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

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

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

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

An example to illustrate this:

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

 

Until next time...

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