Together we can do SO much

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 improving care and support.

In October 2014, I wrote a blog entitled 'Inspiring end-of-life care'. In that blog I talked about my experience of speaking at the Alzheimer Europe Conference about my dad’s end of life care:

“I hope that the standing ovation my presentation received is proof that my dad’s story can inspire better end-of-life care for other people in the future, and that speaking about even the most difficult topics can be warmly received if you connect with people on a human level. And that is perhaps the most important message of all: we have great caring qualities as human beings that have the ability to change lives at every stage of life, even at the end.”

Photo credit: National Care Forum Managers Conference 2019

It is that ability to change lives that was at the forefront of my most recent speech, delivered to the National Care Forum (NCF) Managers Conference earlier this month. Entitled ‘Being a Change Maker for Family Carers’, my speech charted the nine years that my dad spent in care homes. I then went on to talk about the lessons that could be learnt from my dad’s experiences (and ours as a family), and the actions care providers can take to facilitate the person and relationships centred outcomes that are at the heart of care and support.

I want to share some of what I spoke about in this blog, just as I did in my ‘Inspiring end-of-life care’ post, for anyone who wasn’t at the NCF conference and indeed to remind those who were there what I talked about:

Lesson 1) Choice is important

“In the aftermath of dad’s diagnosis, when he was still in hospital, we were given no option to explore homecare or live-in care. I’m not saying we would have definitely chosen those options, but I advocate now for choice in care provision because I believe it is a fundamental right. Families should know about all of the options and ways found to facilitate their preferred option rather than being told, as we were, that there is only one option.”

Lesson 2) Understand and empathise

“We had no idea what to look for in a care home and what the ‘right’ questions were to ask - we didn’t want to choose the wrong service through ignorance. Simply knowing you want the best care for your loved one isn’t enough knowledge to make an informed choice.”

Lesson 3) Build Trust

“The problem with trust in social care is it’s very fragile. We trusted the staff, but many of those staff were bullied into leaving when the successor to Southern Cross took over the home. Over the years, we’d trusted owners who promised to invest, but none really did what they promised. The last owner destroyed all trust by investing in the environment rather than the people. And of course it’s people, it’s the quality of that human factor that is so important. A hotel environment is just window-dressing if the care and support just isn’t there.”

Lesson 4) Recognise needs

“We talk a lot in social care about needs. But what about the needs of family carers and families? Perhaps most notably is the need to feel listened to and understood…For many family carers in particular, their needs will also include the need to be partners in care. 

I think it’s important here to also consider what care providers need….I would suggest that most care providers would say they want their staff to be treated with respect, to be told at the earliest opportunity if there are problems and be given the chance to rectify those issues, and for communication to be open and honest.”

I finished my speech with this quote from Helen Keller:

“Alone we can do so little; together we can do so much.” 

My speech didn’t end with a standing ovation, but if anything it was better than that, because so many people came up to me afterwards to thank me, talk about what I’d said and tell me how they would be aiming to implement some of my actions. In the days since the conference, I’ve had so many social media and email messages expressing similar sentiments. A compilation of some of the feedback I’ve received is on my website and this blog from the NCF's Policy, Research and Projects Officer, Nathan Jones, also includes a review of my session.

In the 7+ years since my dad died and I’ve done the work I do now I’ve never felt I inspired an audience so much, potentially becoming the catalyst for positive change within numerous social care services. It’s led me to the conclusion that whoever we are, we all have the power to be change makers. 

In social care services, it isn’t just managers and care staff, but ALL staff who can be change makers. In wider society, from bus drivers to bin men, nurses to beauticians, researchers to supermarket checkout staff, we can all be the change we want to see. 

For me that change is a society that comprehensively supports everyone who needs social care (electioneering politicians take note!) and that, specifically in relation to people with dementia, ensures that rather than providing care that I can pick apart, find lessons to learn from and actions to implement is simply a celebration: of doing anything and everything that makes a person’s years with dementia the very best they can be.

Until next time...

You can follow me on Twitter: @bethyb1886
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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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Action for dementia care and support - Being person and relationship centred

Welcome to the second of my five blog posts for UK Dementia Action Week 2018 (DAW2018). 

This year Dementia Awareness Week is renamed Dementia Action Week to reflect the need for action for people affected by dementia rather than only focusing on awareness.

In this spirit, I’m sharing the ‘Key Messages’ from my dementia care and support training modules. The training, devised entirely by me and heavily based on personal experiences from my dad's life with dementia and the many other people I've met who are living with dementia, is something I've delivered to numerous frontline social care staff as a standalone learning experience or to supplement the bespoke training and mentoring that I provide to individual services and organisations.

I've never shared these materials online before, and I'm hoping by doing so now I will inspire positive action amongst health and social care providers who are supporting people living with dementia and their families.

Day 2: Being person and relationship centred

My second module is called ‘Person and relationship centred care and support' and covers: 

• The foundations of person-centred care and support
• Individuality, choice and control
• Understanding the person and their preferences, qualities, needs, abilities, interests and aspirations
• Individualising support
• Wellbeing
• The foundations of relationship-centred care and support
• Working with families
• Person and relationship centred care and support as a therapy to alleviate distress
• Key staff skills

It concludes with:

For me these key messages, whilst very basic to many of us, are something every person providing care and support for anyone affected by dementia should live and breathe by.

Of course, there is so much more to what is in a 3-hour training session than I could convey in a short blog, but to give you a flavour of what this is like in 'real life' the module is the start of opening up conversations about what person and relationship centred care and support is, and how staff can provide it for the people they are currently supporting. 

Everything I do asks learners to put themselves into the shoes of the person, so in this module learners think about the preferences, qualities, needs, abilities, interests and aspirations of a person they support, and they break down how they would provide person-centred care and support in 'real life' scenarios.

**ACTION FOR HEALTH AND SOCIAL CARE PROVIDERS**

PLEASE PRINT THE KEY MESSAGES IMAGE ABOVE AND PIN IT ONTO A NOTICEBOARD THAT ALL OF YOUR STAFF CAN SEE.

For more information on my training and mentoring consultancy work, please see my website: http://www.bethbritton.com.

Tomorrow (23 May 2018) I will look at 'Communication and dementia'.

Until then...

You can follow me on Twitter: @bethyb1886
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