Coronavirus and living with dementia - Coping in unprecedented times

It’s not easy to know where to begin with a blog on the current monumentally uncertain times that the world is facing, but I’m going to attempt to address the coronavirus disaster (I don’t think the word crisis goes far enough) in this and subsequent blogs as we all try to adjust to the unprecedented circumstances we find ourselves in.

Firstly, way back (well it seems like a long time ago now!) when we first heard about this virus in December and as it escalated into January, it frightened me. Reports of the pneumonia it causes sent a shudder through me with vivid recollections of how my father - over a period of around a month - fought and died, drowning from the inside as his lungs filled with fluid. 

Anyone who thinks this is a trivial disease is so incredibly misguided and, in common with experts and governments around the world, I have one simple message: STAY AT HOME AND SAVE LIVES. 

I appreciate, however, that the fundamental change to the only way of life most, if not all, of us have ever known is a huge ask. I’m having to do it - currently self-isolating with my mum (who is 80) and trying to keep a 4-year-old entertained while I devote my working time to writing as all of my consultancy work is indefinitely postponed. It’s not easy, and if you are supporting a loved one with dementia, it will be even harder. 

I’ve been asked a few questions by families in this position over the last few weeks, and in this blog (and others) I will share my answers:

Help! How do we hand-wash more?

I know lots of people are struggling with this simply because A) a person with dementia may not remember to wash their hands, and B) even if the person remembers, they may be unsure of how to wash their hands or not do it with the thoroughness and for the length of time needed.

In his years living at home before his diagnosis, my dad struggled with personal hygiene, and although his care homes tried to remedy this, hand washing wasn’t frequent. Dad’s hands often looked dirty, even when he was about to be given a meal, mostly from remnants of old food or possibly even where he had put his hand into his incontinence pad. This was particularly noticeable once he was immobile.

So, this is a very real problem even before coronavirus magnified the need for scrupulous hand-washing. Some key points to remember to support a person living with dementia who is struggling with hand washing:

• Is it clear where the washing facilities are? Signage around the home can help the person to navigate their way to the bathroom or cloakroom to wash their hands. 
• Once inside the bathroom or cloakroom, is it clear where the basin, taps and soap are? Try to have contrasting colours to make it more obvious.
• Does the person know how to turn the taps on, how to get soap out of the dispenser, and do they remember how to wash their hands? Again, signage (pictures and words) can help to jog the person’s memory and support them to remain independent.

If the person is immobile, try what I used to do with my dad:

• I’d get a bowl of warm, soapy water and put it on a table in-front of dad or on his lap if he was calm. 
• We’d both put our hands in together, and using extra soap I’d gently wash his hands and wrists and scrub under his nails, taking my time and making it a relaxing experience.
• I’d then put dad’s hands into a towel, go and change the water for fresh, clean warm water and return to rinse his hands before doing a final dry on another clean towel.

It wasn’t a quick process, but very effective, especially for soaking off stuck on dirt, and from a sensory perspective it was lovely to both have our hands in warm soapy water together. I doubt from a virus prevention perspective it would be anywhere near as efficient as washing under running water as we’ve all been told to do, but if the person is immobile and it’s not possible to get them to a basin it would be better than no hand washing at all.

For a person with dementia who dislikes the feeling of water, hand sanitiser (with alcohol) is an alternative to hand washing. Sanitiser is, though, in short supply and I’ve had zero success finding any of this for our household.

Help! How do we self-isolate?

Many people with dementia will be living with other conditions like heart or lung problems that make them particularly at risk from coronavirus, or indeed their age will be a risk-factor. Avoiding developing this virus is by far the best policy, but self-isolation carries many challenges for a person who is already confused and frightened. My tips to support each other include:

• Avoid an overload of tension and a desire to ‘get out’ from all members of a household by having a consistent routine and lots of things to focus on each day. 
• Support a person with dementia to engage in hobbies they like or indeed to try new activities. If you need materials to support hobbies or activities, look online to see what can be delivered. Stores like Hobbycraft offer home delivery, but it will take longer than usual for your items to arrive (and of course there are lots of other arts and crafts websites too).
• An internet connection can be invaluable in terms of being able to keep in touch with family and friends via video calls or messaging, and so many services - like singing groups or exercises classes - are now being streamed online. These are at set times and are brilliant for helping to add structure to a day at home. Some other examples to try:
• Join the fabulous Wendy Mitchell for her ‘Web with Wendy’ sessions (the next sessions are 31 March and 2 April). Wendy says of these sessions: “I would like to invite you to a virtual cuppa on the web to discuss anything and everything....no questions out of bounds....”
• Participate in laughter yoga, designed to put a smile on participants faces during these testing times. Find out more about Everybody Laugh Together on their Facebook page. 
• Try some of the numerous virtual tours of museums, galleries, gardens and so much more in the UK and abroad. Do an internet search for the type of virtual tour you are interested in and be immersed in another world.
• You could also consider modifying some of the things we’ve been asked to do as a family:
• We’ve had requests for our daughter’s artwork to be sent to some of my care home clients - there is no reason why adult artwork wouldn’t be just as gratefully received. 
• My writing skills are being requested for everything from pen-pal services to life story research. Again, there is no reason why a person living with dementia at home, supported by their partner or family, couldn’t become a pen-pal for a person in a care home and mutually reminisce together.

Next month I will look more in-depth at how families can cope when their loved one is in a care home in isolation. Until then:

• Keep safe
• Stay at home
• Keep your distance from others
• Don’t panic buy
• Look after yourselves
• And stay well.

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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When behaviour changes…

Last week I began a series of roundtable sessions with the staff of one of my social care consultancy clients looking at changed behaviour for people who are living with dementia.

The topics for discussion are pretty diverse, everything from verbal and physical aggression to repetition, paranoia and accusations, walking and restlessness through to anxiety, tearfulness and feeling emotional, wakefulness and disturbed sleeping, through to losing, hiding or hoarding objects/items and losing sexual inhibitions.

Whatever direction our conversations go in, the focus is on understanding and supporting the person with their symptoms, and if possible finding ways to alleviate those symptoms. I am completely against any references to challenging behaviour and the inevitably negative pathway that terminology leads us down.

I have written before about the need to understand that any behavioural changes a person with dementia is experiencing are most likely due to an unmet need. In essence, behavioural change is a way of communicating when trying to make yourself understood in other ways simply isn't possible because of your dementia.

The cause of behavioural changes can be physical (something happening in the person’s brain because of their dementia or another physical or mental illness) environmental (including within a previously familiar environment) or human (directly resulting from being in the company of a person or persons). Sometimes there is no obvious cause at all, which is why behavioural changes are so difficult for the person themselves to cope with, and for those around them to support appropriately.

Reverting to medication is, for me, the absolute last resort (See my blog on the 'chemical cosh'), and as understanding of dementia grows I hope that more health and social care professionals will embrace a care and support approach rather than a medication approach, and indeed families and people with dementia themselves will advocate ever more strongly for this.

As someone whose father was medicated with antipsychotics (and other sedating medication), I know first-hand how dad’s symptoms improved when that medication was removed. But what are the options if you want to take a care and support approach? My top tips are:

Person-centred support at all times 

The person at the centre of their care and support at all times might sound like a simple idea, but it still doesn’t happen universally. Pay particular attention to listening to the person and observing their body language - it will tell you a lot about how they are feeling. Empathise and understand, tuning into the person’s needs (either explicitly stated or what you can learn by reading between the lines), and reflect on your interactions - what have you learnt? What could you change?

Ensure the person has access to purposeful and meaningful (to them) occupation 

Occupation is many different things to many different people - it may be something personal to the individual (like a hobby or interest), it may involve being supported to care for themselves (For example, with personal care or when making drinks or meals) or it may involve doing things for others (For example, advocacy, volunteering, using craft skills to make useful items, befriending or peer support). Whatever occupation means to the person you are supporting, make sure they have the opportunity to pursue it to the fullest possible extent. 

An environment that is responsive to the person’s needs 

Environment is so often overlooked when thinking about supporting a person with dementia. A ‘dementia friendly environment’ may sound like a cute and cuddly phrase, but it’s actually really important, and it’s about a lot more than just signage and red toilet seats! If the person is disorientated in their environment, frustrated at being unable to navigate, feeling unsafe, confused, or angry as a result of their surroundings, it will undoubtedly feed into distressing behavioural symptoms for the person.

Preservation of the person’s independence and individuality 

When a person is diagnosed with dementia, the tendency is often to do things for them rather than with them. Big mistake! Involve the person in everything you are supporting them with. Avoid being risk-adverse, and give the person the opportunities they need to be themselves and to shine. Embrace the person's life story and everything that makes them who they are.

Ensure that the person isn’t experiencing any undiagnosed pain, symptoms of another physical or mental health condition or side-effects of medication(s)

Get concerns about other health problems checked out, being persistent with health professionals if necessary. Be particularly mindful of any pain problems, as these are often missed in a person who is living with dementia. Pain can be extremely debilitating, affecting the person’s whole outlook, and chances are it will be a contributing factor in any behavioural symptoms they are experiencing. Also be mindful of the effects of medication(s).

Support for the person’s wellbeing and positive relationships with the individual(s) involved in their life 

Never underestimate wellbeing. It’s a barely understood word (which means to be comfortable, healthy and happy) that can have big implications when a person with dementia isn’t experiencing it. Equally, fractious relationships (which are common, particularly in family situations) are very counterintuitive when it comes to supporting behavioural symptoms. For family members in particular, being aware of how to improve your own wellbeing and participate in healthy relationships is as important as focusing on these aspects for your loved one. If you project a positive approach (For example, I endeavoured - although didn't always succeed - to never to cry in front of my dad) that will rub off on those around you.

Of course, in a perfect world everyone’s care and support would follow these principles. If it did, many of the changed behaviours that are associated with dementia would be greatly reduced, and for some people, barely noticeable at all. Perhaps then, the greatest tip of all is to say that it’s never too early to begin these good habits. Waiting until the person you are caring for is living with behavioural symptoms associated with their dementia isn’t too late, but it certainly isn’t as early as it could be.

The power to turn around the tide of ‘challenging behaviour’ negativity and show a caring and supportive approach to the changed behaviour that is associated with dementia is something that rests with each one of us, no matter what our role or responsibilities.

Until next time...

You can follow me on Twitter: @bethyb1886

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I need you

In my 2013 blog post ‘What is dementia’ I focused on the symptoms of dementia, noting the following amongst my very long list of ways in which a person can be affected by dementia:

“An increasing need for reassurance (someone who was previously independent becoming clingy or losing confidence), or a need to be constantly reminded about things”

Back then, I wasn’t aware of the phrase ‘trailing’ or describing a person with dementia as ‘following’ others around. I literally just thought of the need to be close to someone you trust as a need for reassurance.

However, watching the recent BBC Documentary ‘Granddad, dementia and me’, the phrase ‘obsessed’ was used repeatedly to explain Tom (who is living with vascular dementia) needing to be close to his wife (and carer) Pam. Tom’s need to be constantly with Pam had, for Pam, got to a point where she needed some time away from Tom.

The film throws up numerous issues which I will explore in my August D4Dementia blog, but I think the need Tom had to be close to Pam, and the effect on Tom and Pam's wellbeing when they were happily reunited towards the end of the documentary, is a really interesting one.

From the perspective of a spouse or family member, if you are used to your loved one being fairly independent, the way in which dementia can leave a person without the confidence to be on their own can be difficult to understand, adjust to or successfully support. Many spouses or family members end up feeling suffocated and like they haven’t got a minute to themselves. This was very strongly portrayed in ‘Granddad, dementia and me’ which in the early part of the film really made Tom look - to someone without a good understanding of dementia - like he was a nightmare to live with.

Look behind the visuals a TV camera provides, however, and the story is a different one. Firstly, the changes in his brain caused by his vascular dementia (the same type of dementia my dad had) weren’t Tom’s fault (even with risk reduction, no one is guaranteed to not develop a type of dementia). These changes were even more baffling for Tom than those around him – unless you are a person living with dementia, you cannot possibly understand exactly what it feels like to be a person who is.

When things are happening to us that we don’t understand, the natural human tendency we have from birth is to gravitate towards someone who is familiar, who we trust, find comfort with and love. We want to know that everything is ok. And if we have an unmet need that we cannot articulate, the natural reaction is to search for someone who might be able to interpret this, which is most likely the person we are closest to in our life, usually our spouse if our parents are no longer around.

In parenting, this is a given. As mums and dads we accept and expect that our young child will seek us out when they need us, particularly if they don’t have the language to articulate their needs or the ability to meet them independently. Indeed, clinginess in a young child is otherwise known as the child seeing you as a ‘secure base’, with separation anxiety accepted as a natural part of child development.

I appreciate that in marriage this isn’t a given – you marry an independent adult and expect them to remain that way. But there is another way of looking at the reassurance a person with dementia needs from the person closest to them – You are their ‘secure base’. It is a mark of how strong your bond is that you are the person that your loved one needs to be closest to.

I’m not for one moment suggesting an adult with dementia is now a child – they remain an adult regardless of their cognitive impairment. But the narrative and attitudes we have towards happy and successful parenting, and the narrative and attitudes we have towards supporting a person who is living with dementia, are poles apart and children are definitely getting the better deal!

That is not to in any way undermine the huge efforts made by families around the world in caring for their loved ones who are living with dementia. I was appalled at the criticism of Pam and her family – yes, we can all spot mistakes from the comfort of our sofa, but when you are living the experience it is very different.

What I wish is that Tom, Pam and their family could have been shown receiving really proactive support to ensure that they could give Tom what he needed. The film showed that medicating Tom wasn’t the answer, and two periods as a mental health inpatient (including sectioning – my views on sectioning are here) didn’t help.

So what is general good advice for any family whose loved one wants to be with them 24/7:

Occupation and activity

One of the major features of the first part of Tom's film is how little he had to occupy himself with. He was never shown to have any responsibilities or daily tasks, meaningful occupations, hobbies or activities that he enjoyed – not a healthy situation for a person who’d been a high-achieving, hardworking businessman.

 

That is not to say that everyone who lives with dementia will feel motivated to do things, my dad certainly went through a period when he refused to do anything except watch TV and look at books, and many people with dementia develop depression alongside their dementia which can also contribute to not wanting to do anything, but presenting those opportunities and making them a consistent part of every day life is vital.

 

Disabling people when they still have capabilities is a disaster. Not realising the person still has capabilities is a double disaster.

 

Do things together

So, you might think that ideal occupations and activities are ones that the person does alone, but think again. The person may not know how to begin, let alone successfully complete, a task. Doing things together not only means you being able to guide the person, but it enables the person to model what you are doing – it’s a subtle activity that is often wordless, and may happen without you even realising it as the person watches and copies you. A simple but vital way to boost the person’s independence without them having to acknowledge ways in which they are struggling.

 

Get your environment in order

If the person can’t remember their way to the bathroom or the kitchen, they are more likely to rely on following you to find their way. Some dementia friendly signage and simple design changes can all help to augment the person’s independence – see the world-leading dementia design work from Stirling University for tips and ideas.

 

Be the voice of confidence and reassurance

You may well be tired of telling your loved one "You can do it", but dementia is a very big voice in a person’s life that, essentially, is trying to hold them back, making the person insecure, vulnerable and lacking in confidence. As the most trusted person in your loved one’s life, you have the ability to stop that juggernaut in its tracks (temporarily at least) by being a constant source of support, confidence and reassurance. As the Bette Midler song goes:

 

Did you ever know that you're my hero,

And everything I would like to be?

I can fly higher than an eagle,

For you are the wind beneath my wings

 

Accept the unsaid

Hard and exhausting though the need for constant reassurance and company may be, accepting three little words – that will most likely never be said out loud - can be transformative for your resilience.

"I need you" is what your loved one’s quest for reassurance and confidence is really saying. Take it from someone who was once that needed person, it may be hard at the time but it’s harder when you are no longer needed.

 

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...

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