Myths and lessons

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 awareness.

My first D4Dementia World Alzheimer’s Month blog in September 2012 was entitled, ‘So how much do you know about dementia?’ In the blog, which remains one of my most popular to date, I sought to bust myths about dementia and talk about what dementia had taught me. The myth-busting is particularly interesting to look back on as the blog was written before Dementia Friends - one of the key initiatives to raise awareness of dementia - was launched. Some of the messages from that blog went on to be incorporated into Dementia Friends and have become mainstream knowledge, but they are still worth repeating:

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

I followed the myth-busting with some personal reflections about what my dad’s dementia had taught me:

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

Despite there being seven years between writing that 2012 blog and today, and a multitude of other experiences gained primarily through my work but also from people I’ve known personally, I cannot better those last four points - they sum up so much of what I talk about regularly. 

Appreciating the smallest things in life feeds into the principle of taking notice, one of the Five Ways to Wellbeing that have been pioneered by the New Economics Foundation and are widely recognised as key aspects of supporting good mental health. In 2012 I gave the example of my dad saying a simple “Hello” to me in the last months of his life, but I’ve since heard about even more precious, seemingly ‘small’ moments, not least a lady whose husband (who was living with dementia) told her he loved her - quite unexpectedly as he wasn’t given for such proclamations she said - just hours before a major stroke left him unable to speak another word for the rest of his life.

Making the most of every day was, in my dad’s case, particularly notable when we were supporting him in things that reflected the happiest memories from his life. Examples of that included listening (and singing) to music he loved, looking at books he’d enjoyed in his life (including reading a poetry book about love in the last days of his life), enjoying favourite foods (roast beef), or talking about some of his favourite memories of his life and looking at items that reflected those, which in my dad’s case were his notable achievements as a farmer. We, of course, knew my dad’s life story and so were able to facilitate all of this interaction, but for professionals currently supporting a person that they don’t know as well I would wholeheartedly recommend life story work – it really is the gift that keeps on giving.

Never giving up for me means being really person and relationship centred in your approach to supporting the person. If you spend a lot of time focusing on the big picture of dementia (the minimal treatments and lack of a cure) and the stark reality of dementia as a progressive and terminal disease, you can very quickly feel like giving up. Whereas if you get back to thinking about the person, what might make their life happier or more comfortable right now, you can find a sense of positivity and achievement. A classic example of this comes from a gentleman I met who every Friday would bring 3 roses to his wife in her care home. I was curious as to the significance of the day and the number of roses so I asked him. He said the roses (which always had to be different colours) represented their 3 children, all of whom had been born on a Friday. He said his wife couldn’t remember their names now, so the roses (roses were his wife’s favourite flower) had become her way of feeling close to her children (two of whom now lived abroad). She would hold, caress and study each of the roses and they’d have conversations about ‘red’ rose, ‘pink’ rose and ‘yellow’ rose, with him weaving in details about their children’s lives to make the conversation more meaningful.

Sharing experiences remains one of my greatest passions. Telling my dad’s story and the stories of the many other people I’ve met who are ageing and/or living with dementia is the most powerful way I’ve found in 7+ years to illustrate the health and care experiences individuals and families are having. I’ve seen first-hand how illuminating and inspiring personal experiences are for professionals involved in care and support, and I personally believe it should be mandatory for all dementia training to include these experiences. For this World Alzheimer’s Month, if you’re looking for some inspiration beyond this blog hunt down one of the many blogs, books, films or recordings that people with dementia have made or contributed to and you’ll see why nothing beats hearing from those actually LIVING with dementia.

Until next time...

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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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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Wellbeing and dementia

'Wellbeing' is everywhere these days. Health and social care professionals are eulogising about it and it now has an important place in legislation, with the Care Act featuring wellbeing prominently. But what exactly is it, and how do we enable people with dementia to feel a sense of wellbeing?

The Oxford English dictionary definition of wellbeing, as stated online is:

"The state of being comfortable, healthy or happy."

While my trusted dictionary that has been with me since my early teenage years tells me wellbeing is:

"The state of being healthy, happy or prosperous."

Instantly, the concept of being healthy, whilst living with any long-term condition - be it dementia or something else (and often more than one condition at any one time) - seems a contradiction in terms. Once health has been compromised, is wellbeing merely just a tokenistic ideology?

I personally don't think so. If you subscribe, as I do, to the firmly held belief that you should always see the person before their dementia, then wellbeing is still eminently possible for anyone living with dementia. The basic definitions of wellbeing, namely being comfortable, happy and prosperous are also not precluded by dementia, although in the case of financial prosperity, it is true to say that many people living with dementia enjoy anything but a prosperous lifestyle, given the double whammy of low income and high care and support costs.

In an ideal world, happiness and comfort should be the preserve of everyone, although as we know that is often not the case. Systemic failures of health and social care systems, in-cohesive communities, isolation, lack of understanding, stigma and fear are some of the common barriers to experiencing the happiness and comfort associated with wellbeing, and although I'd be the first to admit that these issues are being addressed in some parts of the UK, we undoubtedly still have a long way to go.

Reflecting on my dad's life during his 19 years with dementia, I've often wondered about his experiences of wellbeing. Ultimately only he could define whether or not he experienced a sense, or indeed a reality of wellbeing, but as a close observer I think there were times of happiness and contentment - particularly when we were relaxing outside in the sunshine - that felt to me to be the very embodiment of wellbeing.

Comfort is more tricky to quantify, especially in dad's latter years with dementia, which are often the times it's particularly difficult to ensure a person's wellbeing. In dad's pre-diagnosis years, I would say he was fairly comfortable - living in his home, surrounded by his things and doing as he pleased has a definite element of comfort to it, albeit that has to be seen against the backdrop of his dementia symptoms, which during those years included hallucinations, paranoia, confusion and a gradual inability to look after himself (See my ‘Ten lost years’ blog post).

But in my dad's last few years, I'm less sure about how comfortable he honestly was. I wasn't sitting in his chair, wearing those incontinence pads, having to be dressed by others, being hoisted, shuffling down the seat constantly and being helped to eat. Even the best care practices in these circumstances don't necessarily always result in comfort for the person being cared for, which is partly why role-play training, where a care worker learns what it feels like to be hoisted, helped to eat and wear incontinence pads, is so effective in educating care workers about what the person they are caring for is potentially feeling.

That said, we did everything we could to make life more comfortable, by getting dad his own special chair, making sure his pads were regularly changed, buying him the nicest clothes we could find and trying to be with him for his mealtimes to ensure he had as much time as he needed to eat. We didn't really think of it in terms of trying to create a sense of wellbeing for him, but in hindsight you could easily interpret it in that way.

Now wellbeing is such a prominent theme in care and support, it's a really good prompt for thinking about how you are going to create and enhance wellbeing for a person with dementia. My general view on this is to keep it simple and never assume that just because a person's dementia has advanced that wellbeing isn't possible for them. Start with one of the key building blocks in every interaction – communication. Everything from greeting a person and introducing yourself all the way through to the person-centred approaches that are vital in dementia care. Also read my ‘Talking the talk’ blog and my blog on expression, ‘Don’t ignore me’.

Focusing on the definitions of wellbeing as mentioned earlier think about:

•   Supporting a person with dementia to find happiness in aspects of daily living - examples include: wearing a favourite outfit, enjoying some pampering during personal care, a favourite meal or drink, exploring nature, participating in a hobby, getting out and about, reminiscing, and entertainment (like books, music or films) – the only limits are the interests of the person with dementia and the imagination of the individual(s) supporting them.

•   Comfort is achievable through elements like environmental changes, personal care that is responsive to the individual’s needs, foods and drinks that tickle taste buds and satisfy, peaceful sleeping, and timely and appropriate care during periods of ill-health (for example chest and urine infections).

•   Prosperity in a financial sense is of course down to individual circumstances, but prosperity in terms of an emotionally enriching life is possible through opportunities to learn, promotion and support of individuality, kind, compassionate and dignified care, feeling loved and wanted, having hope and being respected.

In essence though, this really is just the tip of the iceberg. Wellbeing is such a huge topic, I’m sure I will return to it again in the future on D4Dementia.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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