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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Finding love again

With over 200 blogs on D4Dementia now, some of them approaching 7 years old in May this year, 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 love.

I finished my January 2019 blog with a quote that talked about how a person who is struggling to express themselves, perhaps because of their dementia, is:

“Ultimately looking for understanding, appreciation and love.”

Of course that could be said for all of us regardless of the circumstances surrounding our health, but a diagnosis of dementia brings the importance of love and expressing love into an even sharper focus, as I described in my 2014 blog, ‘Amour’:

“Dementia taught me to tell my dad I loved him every time I saw him. I say dementia taught me because a diagnosis of a terminal disease makes it imperative that you make the most of every moment. There isn't time to be bashful - you will have a long time to regret what you didn't have the courage to say or do.”

But that isn’t to say it’s always easy to express love or feel love when dementia is part of life. Last year I met a lady who very candidly spoke about her relationship with her mother, who is living with dementia, saying that she found it very hard to love her mother now.

Many people might harshly judge this lady for a comment like that, but on further exploration it was clear it was a remark that came from a place of immense love and a longing for that love to be reciprocated. The lady felt bereft because of her perception that her mother didn’t love her, but when we reflected on her time with her mother, it became clear that she was missing very subtle signs of her mother’s love, purely because they weren’t the obvious expressions of it that she’d been used to her whole life.

This lady viewed the changes in her mother only through a negative lens. She spoke about her mother’s repetitive speech, her lack of interest in previous hobbies, how she no longer wanted to eat foods she’d always enjoyed and how she constantly walked, making her daughter feel that she just wanted to get away from her.

But we found a flip side to this. The repetitive speech was an opportunity for the lady to reinforce the information her mother needed, and that could come from a place of love if she realised the trust her mother was placing in her to provide that information in a calm and consistent way.

The lack of enthusiasm for previous hobbies could be interpreted as an opportunity to try new things, finding common interests that they could enjoy together, and likewise with trying new foods. We also talked about walking, and the joy that could be found in walking together, exploring the environment and taking notice of the details around them, something that is known to be very good for improving wellbeing.

Like many people, this daughter saw her mother’s walking through the negative concept of wandering (not a phrase I like or agree with), which is a topic I wrote about in my 2012 blog ‘Going Places’:

“Wandering suggests aimless moving from place to place without any clear objective, but that is not the case in people with dementia. I have written previously about the need to appreciate, understand and connect with a person who has dementia within the world THEY are living in. It may be a world from their childhood or their years as a youthful adult, it may be a happy place or a sad and worrying place. Wherever it is and whatever the circumstances, the person with dementia may well feel compelled to do certain things, and have great purpose and direction in doing them, however fleeting that may be.” 

For this lady’s mother, walking was something she needed and wanted to do, not something to be in any way suppressed as her daughter thought it perhaps should be. Supporting someone you love to do something that they love is in itself an act of love. Not one with big declarations or fancy ribbons attached, but one that is far more meaningful when you consider that many people who are living with dementia and want to do things like walking are prevented, sometimes forcibly, from doing so.

I think, and hope, that I helped this lady to find a different perspective to the one of desolation and isolation that she was feeling. Accepting that dementia sometimes changes our perception of loving and being loved is a tough realisation, but it is one that provides a degree of peace, and sometimes even hope – hope that you can still have those moments of connection with the person you love, however fleeting those moments may be, and feel that surge of emotion that only love can give you.

As I said in my Amour blog:

“During those difficult moments, the sadness, the emptiness, the emotional rollercoaster of being a carer, it's the love you feel that gets you through.”

Until next time...

You can follow me on Twitter: @bethyb1886
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Why activity is everyone's business

Go into most care homes and you will see a familiar array of staff, from carers to chefs, housekeepers to maintenance personnel. A role you will also often encounter is that of an 'activity coordinator'. All of my dad's three care homes had activity coordinators, all of whom were women and some clearly more suited to the role than others.

In essence an activity coordinator is charged with ensuring that everyone living in the care home gets to do activities that they want to do and enjoy doing. The scope for those activities is largely dictated to by budget, with some care homes having extensive 'activity' programmes that include trips out and even holidays, while others literally scrape around to find pens and paper for residents who want to draw.

Whilst I am the first person to advocate that people living in care homes should have opportunities to engage in 'activity', I am not a fan of the 'activity coordinator' role. Why? Because in my view activity is everyone's business.

By creating a role in a care home that is centred around activity, everyone else working in the care home automatically defaults to that individual for anything related to activity. This is seen with other roles, where everyone goes to the chef for matters relating to food, and everyone goes to the maintenance person if something needs fixing.

The other reason I'm not a fan of this role is that activity is about everything that happens in the day, from the moment you get up to the moment you go to bed. Given that people living in a care home spend most of their day with care staff, it is vital that care staff recognise that everything they do to support that person is, in itself, an activity.

By taking this approach, it is then much easier for care staff to appreciate the need to support the person to do as much as possible, thus retaining maximum independence, rather than just automatically doing everything for them and effectively de-skilling them and taking over their life.

Making a cup of tea, having a shower, getting dressed - these are all activities, just as much as bingo and singing groups. And they can all be expanded upon to go beyond the purely functional. So, for example, making a cup of tea could be about doing it 'the old fashioned way' with loose leaf tea and a tea pot, sparking a reminiscence session. Having a shower could become a full on pampering session, with some gentle exfoliation of hard skin, a massage with body lotion afterwards or a full-on salon-style blow dry. Getting dressed could be about coordinating colours and outfits, dressing up or dressing down, and might even lead onto a mending session if clothing needs some TLC.

Throughout any of these 'activities' songs could be sung, conversation could flow, laughter could be triggered and memories could be drawn upon and mulled over. The problem is, if your care home has an activity coordinator, he or she is unlikely to be involved in these 'care' related activities, and thus these daily occurrences just become bland tasks for the care workforce to 'get through'.

In my consultancy work with care providers, I look at the structure of the workforce in a care home, who is responsible for what, how those responsibilities are carried out, and whether there is, in fact, a better way of approaching how the care home operates. A huge focus for me is how holistic a care home can become, which in practice means frontline staff taking on a more fluid role that responds to the individual needs of the people living in the care home and treats every interaction as an opportunity to create a special moment with that person.

It is irrelevant if those moments will be remembered, and the fact that they might not is no reason not to create them. There is often a belief that group 'activity' sessions are more memorable, but actually as a person's dementia advances, it is often the one-to-one time spent doing something very simple and very familiar, like eating, drinking, folding laundry or making the bed that enhances wellbeing and quality of life more.

Persuading staff to be creative and expressive whilst providing this type of essential support is often very challenging; many would much rather just default to the activity coordinator when conversation and interaction is needed. But care staff who approach their work with an emphasis on both supporting the person and creating an activity out of everything they do generally have much more job satisfaction.

So what would I suggest care providers do with their activity coordinators? By all means turn them into event managers, charged with creating those important community experiences in the care home, and indeed helping people living in the care home to get out and about. If they are great communicators and creative types (which they certainly should be!), then utilise that to show other staff how to communicate more effectively and be creative in their support.

Encourage all of your staff to show off their talents - you may have some real gems who can play instruments or sing beautifully, people who are good at needlework, crafts, gardening, cooking or DIY. Support them to bring those talents into their job, whatever their 'official' role is meant to be. And likewise with your residents and relatives - find out what talents they have and how they might express those for individual benefit or the greater good.

The best care homes do this seamlessly, because they appreciate that activity is everyone's business and they facilitate that way of working. It may mean staff allocations need to change or rotas need to be adjusted. It may mean that someone in one role is actually much more suited to something else. It will almost certainly need training, mentoring and monitoring, but ultimately you will have created a care home far closer to what a home truly is, and what living a life in a care home and working in one should represent.

Until next time...

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A 'can do' attitude

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

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

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

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

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

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

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

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

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

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

Until next time...



You can follow me on Twitter: @bethyb1886

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