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Monday, 11 June 2018

The forgotten workforce

In all of the meetings I’ve attended about unpaid carers in the 6+ years since my own caring role for my dad ended, the most common themes have been: A) How do we identify carers? And B) How do we assess carer’s needs? The end result of the latter is generally to offer respite, somewhere along the line a leaflet (or a whole pack of leaflets) might be given, and possibly there'll be some signposting to a charity who are running a local carers group. Box ticked. Job done.

What a contrast to the paid care and support workforce, who in England need to complete the Care Certificate (which is comprised of 15 standards) and regularly update themselves in mandatory training topics such as health and safety, infection control and manual handling. In addition, all good care providers offering specialist support for people with dementia, learning disabilities and other complex conditions will provide in-depth and on-going training to support their staff. Only last month for Dementia Awareness Week, I blogged about the training and mentoring I provide to health and social care staff.

Two roles, one huge discrepancy

With this huge discrepancy in the levels of training and support provided, you might think that paid care and support workers and unpaid family carers (or you may prefer another term like ‘care partner’, ‘caregiver’ or ‘supporter’ I know from everything I’ve done to promote appropriate dementia language that words matter) have very different roles, but not so. Unpaid carers/care partners frequently undertake all of the elements of care and support that paid care and support workers do, but mostly in highly unsuitable domestic homes that are ill-equipped to support a person with high dependency needs, and with the additional and extremely complex element of the emotional ties that they have to the person who needs care and support.

An estimated 6.5 million people in the UK do this for a family member or friend who has a disability, illness, mental health problem or who needs additional help as they age. Imagine if we had 6.5 million paid care and support staff working for home care agencies, care homes and the like who had never been trained in any aspect of their role and were relying on guidance from a leaflet or their own internet research (for free online courses such as these). There would be uproar. As it is many professionals don’t receive education to the extent required for their role when theyve had training!

I know that my blog is read my numerous unpaid carers/care partners who have contacted me either looking for information or advice, or thanking me for what they have found within my 200+ posts. A few more may find my blog in the days ahead, as its UK Carers Week 2018, and whilst I’m very happy that I can provide help and support, it is a damming indictment that in 2018 there is no formal training programme for this 6.5 million strong forgotten workforce.

It seems that the discrepancies between paid and unpaid caring are considered ok because unpaid caring happens behind private front doors, and if you’ve no idea what you’re doing no one cares until a crisis occurs and you rock up at A&E.

Education – the key to remaining healthy and connected

The theme of this year’s Carers Week is how we enable carers/care partners to remain healthy and connected. For me, carer breakdown has always been a huge topic - I’ve lost count of the times I’ve said that a person with dementia is most likely to end up utilizing professional care services when immobility or incontinence leave their carer/care partner unable to cope. 

Thinking about immobility for a moment, I’m reminded of a story I was told about a lady who frequently visited a relative in a care home with her husband. Her husband had dementia, and was gradually losing his mobility. His wife was struggling to cope with supporting him to get in and out of the car – care staff spotted this one day and invited the lady to join their next manual handling training. Equipped with that knowledge, the wife was able to safely support her husband and protect her body from the common strains that can leave a carer/care partner unable to provide care and support.

Regarding incontinence, I often find myself reflecting on the film ‘Still Alice’, when Alice goes to her holiday home with her husband and is caught short trying to find the toilet. Alice and her husband are immensely distressed. From that moment, the seed that goes on to becoming urinary incontinence and potentially double incontinence is sown. Yet with some support to create an enabling environment, Alice can continue to find the toilet independently and remain continent for longer.

These are just two examples of very small, very simple interventions that can support families to do what most of us would want to do – help our loved one live a good life with dementia or any other condition that they are diagnosed with. But it’s utterly bonkers to think that any family can do that without any education or knowledge - lifelong learning, rooted in the personal experiences of former carers/care partners, for the duration of a carer/care partner’s life is essential. Even when a family member comes from a professional health or care background they often struggle, simply because care and support in a domestic home, when your shifts are 24/7, is about navigating numerous relentless difficulties without anyone to support you.

Knowledge is permanent respite from inexperience

The idea that a family carer/care partner just needs some ‘respite’ to get back on track is, I think, very insulting. Many families don’t want their loved one to go into a care home, or any other respite ‘solution’ temporarily. It’s not a ‘holiday’ for either person – just an upheaval fraught with worry, and a fear that one day the person will go into residential care and not be able to return home. I know that feeling all too well – when my dad went into hospital after we found him collapsed on the floor at home he never entered his front door again.

I’m sure that with the Carers Week theme of keeping carers/care partners healthy and connected there will be a lot of focus on areas like carer health checks, drop in clinics, social support groups and the like. But I know from my experiences with my dad that there is no substitute for knowledge. If there was, we wouldn’t set so much store by sending our children to school for the best part of 13 years of their young lives (and often far longer in higher education). And if the knowledge I’d gained as a carer/care partner was superfluous and insignificant, I wouldn’t have started this blog to share our experiences to help other families (and D4Dementia wouldn’t be so widely read).

Until next time...
Beth x







You can follow me on Twitter: @bethyb1886

Friday, 25 May 2018

Action for dementia care and support - Changes associated with dementia

Welcome to the last 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 5: Changes associated with dementia

My fifth module is called ‘Changes associated with dementia' and covers: 
  • Looking beyond ‘Challenging behaviour’ 
  • Unmet needs
  • Mental, physical and emotional feelings and experiences and relating these to the person’s needs
  • Reacting and responding through positive support
  • Non-pharmacological interventions
  • Pharmacological interventions
  • The national policy on antipsychotics
  • Being a detective
  • Working on your approach
  • Seeing the person
It concludes with:
Key Messages for 'Changes associated with dementia'
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 viewing the changes associated with dementia (not 'challenging behaviour') through the lens of unmet needs, how to support the person's emotions and experiences, and different approaches to alleviate the person's symptoms.

Everything I do asks learners to put themselves into the shoes of the person, so in this module learners think about their experiences of supporting a person with changed behaviour, and use 'real life' scenarios to explore some common changed behaviours through the eyes of the person experiencing them.
**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.

Thank you for supporting my blog during Dementia Action Week 2018.

Until next month...
Beth x







You can follow me on Twitter: @bethyb1886

Thursday, 24 May 2018

Action for dementia care and support - Living with dementia

Welcome to the fourth 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 4: Living with dementia

My fourth module is called ‘Living with dementia' and covers: 
  • ‘Living with dementia’, ‘Living well’ and ‘Living better’
  • An asset-based approach
  • Working side-by-side with the person
  • Independence, choice and control
  • Risk and disagreement
  • The empowerment movement
  • Occupation, activity and lifelong learning 
  • Social connectivity and community life
  • Day-to-day living
  • Markers of living well and advice from a person living with dementia
  • Key staff skills
  • Human Rights and the Mental Capacity Act 
It concludes with:
Key Messages for 'Living with dementia'
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 everything that goes into supporting a person to live as well as possible with their dementia. 

Everything I do asks learners to put themselves into the shoes of the person, so in this module learners think about how to support a person to live as well as possible in lots of everyday situations, and use 'real life' scenarios to identify, support and work with the person to maintain their skills.
**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 (25 May 2018) I will look at 'Changes associated with dementia'.

Until then...
Beth x







You can follow me on Twitter: @bethyb1886

Wednesday, 23 May 2018

Action for dementia care and support - Communication and dementia

Welcome to the third 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 3: Communication and dementia

My third module is called ‘Communication' and covers: 
  • The building blocks of communication
  • Environments and sensory loss
  • What a positive interaction looks and sounds like
  • Talking and listening
  • Non-verbal communication
  • Responsiveness
  • Life stories
  • Teamwork and creativity
  • Feelings and emotions
  • Validation verses reality orientation
  • Coping with communication difficulties
It concludes with:
Key Messages for 'Communication'
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 communicating with a person who is living with dementia, and takes a step-by-step approach that looks at every element that goes into creating positive and meaningful interactions. 

Everything I do asks learners to put themselves into the shoes of the person, so in this module learners experience a demo of unpleasant communication examples, reflect on a film featuring a person living with dementia, and use 'real life' scenarios to think about how they might respond in particular communication situations.

**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 (24 May 2018) I will look at 'Living with dementia'.

Until then...
Beth x







You can follow me on Twitter: @bethyb1886

Tuesday, 22 May 2018

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:
Key Messages for 'Person and relationship centred care and support'
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...
Beth x







You can follow me on Twitter: @bethyb1886

Monday, 21 May 2018

Action for dementia care and support - The basics of dementia

Welcome to the first 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 1: The basics of dementia

My first module is called 'What is dementia?' and covers: 
  • Facts and fiction
  • Current statistics
  • The different types of dementia
  • The needs of minority groups - including BAME, LGBT, people with learning disabilities and younger-onset dementia
  • The symptoms of dementia
  • Other conditions with similar symptoms
  • Living with long-term conditions alongside dementia
  • Progression, ‘stages’ and the life course with dementia
  • Dementia research
It concludes with:
Key Messages for 'What is dementia?'
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 the types of dementia, symptoms and experiences of the people staff are currently supporting. 

Everything I do asks learners to put themselves into the shoes of the person, so in this module learners think about what they might experience if they themselves were living with particular symptoms of dementia.

**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 (22 May 2018) I will look at 'Person and relationship centred care and support'.

Until then...
Beth x







You can follow me on Twitter: @bethyb1886

Monday, 9 April 2018

The rainbow of dementia

This week will mark what would have been my dad’s 91st birthday, and later on in April, the 6th anniversary of his passing. These milestones have left me reflecting on the last 19 years of dad’s life, how dementia crept into his life and year by year gradually overwhelmed him.

The picture painted of dementia in 2018 seems to have two distinct hues - the brightness of those who are living well, or as well as they can, and the darkness of those nearing the end of their lives, with the multiple physical health problems that I remember only too well. Yet as I think back over those 19 years, it was never as simple as two different hues for my dad.

If anything, it was much more like a rainbow, with the red roughly representing the beginning of my dad’s dementia (which was a gradual onset rather than a distinct change from one day to the next) and the violet representing the end of dad’s life. As the curves change colour, and reduce in size, so my dad’s dementia deteriorated, leaving him with fewer skills and more struggles.


Why a rainbow though you might wonder? It’s bright and cheerful and associated with the freshness and beauty that follows the darkness and rain. I certainly haven’t chosen it because I’m a 100 percent devotee of optimism where dementia is concerned. My positivity has always been tempered by stark memories of times that whilst difficult for me, were undoubtedly far worse for my dad.

I’ve chosen a rainbow because to me it represents balance: The brightness of the colours suggests something special and positive is possible at any point in a person’s dementia, but the reducing curves remind us that the struggles, or the paddling as my friend Kate Swaffer describes it, only becomes more pronounced.

If I think about my dad’s 19 years with dementia - certainly for the majority of the first 10 years - whilst the difficulties gradually increased, my dad had independence, looked after himself reasonably well for maybe five of those years, could read and write for the early years, follow TV programmes and sports, had a fairly good command of language, was able to participate in conversations, and certainly wasn’t slow in articulating his viewpoints. By 2018 standards, he would have made a good Dementia Diarist, a popular DEEP (Dementia Engagement and Empowerment Project) or DAI  (Dementia Alliance International) member, and an engaging public speaker (although my optimism on all of these fronts is tempered by knowing that my dad was a fairly private man by nature, so maybe wouldn’t have wanted to speak publicly).

Those are probably the red, orange and yellow years. By the time we get to the green and blue on the rainbow, dad’s in and out of hospital, and moving from a residential care home to a nursing home. For my dad, the key turning point is his larger stroke, and from that day confusion, communication difficulties, urinary incontinence, changed behaviour and a whole raft of inappropriate interventions (most notably antipsychotic medication) follow. My dad is becoming a much more stereotypical example of what society thinks about when it thinks about a person with dementia.

The indigo and violet years are characterised by further physical decline, with immobility, double incontinence and four years of dysphagia for my dad to cope with before the end of his life. This is the picture most people conjure up when they or a loved one are diagnosed. But as much as the ‘red’ years don’t go on forever, so most people with dementia don’t jump from ‘red’ to ‘violet’ either.

I am a great believer in seeing every face of dementia for what it is: The person living as well as they can in the red to green curves of the rainbow is giving hope to every single individual who has just been diagnosed or will be in the future. Without that hope, everyone just fast forwards to a picture of what 'violet' looks like, and that is only going to lead to more rapid deterioration with the added pain of potentially severe depression, hopelessness and even suicidal thoughts.

The person living in the blue to violet curves is never going to offer the same type of hope. They are coping with a greater array of physical health problems and are increasingly reliant on others for their care and support. Our perception is that brightness is fading, but what we learn from these individuals about the human spirit is perhaps even greater than their more articulate peers. Moreover, the qualities we find in ourselves from becoming caregivers represents invaluable, albeit sometimes very painful, life lessons.

Aside from my dad and the people I’ve known personally who are affected by dementia, I’ve met so many other individuals through my professional work who are living with dementia, coping (or not coping, and yes, sometimes suffering) and every single person has taught me something. As my dad took his last breaths I learnt about peaceful serenity. As I see a person living with dementia giving a conference speech, I learn about their strength to stand there and tell their story (often without notes, something I cannot do). As I see a person living with dementia in a care home trying to regain mobility after a broken hip, I learn about determination. As I read a book, a blog, or a social media post from a person with dementia who is laying bare their personal experiences, I learn more about living with dementia than I ever could from a textbook. As I see someone managing a few mouthfuls of food, and breaking out into a satisfied smile that they’ve outwitted dysphagia for one mealtime, I see a will to go on living despite the obvious struggles.

When my dad's life started to change, which in hindsight was when he began developing dementia, I had no idea we had 19 years ahead of us. As every year went by, we just tried to make the most of whatever situation we found ourselves in and give dad the best quality of life possible. I certainly don’t think we always managed that, and I dearly wish I’d known then what I know now.

Did my dad live well? Yes sometimes. Did he suffer? Yes sometimes. But when I reflect now, the fact that it’s a rainbow I gravitate towards, feeling an affinity with the brightness rather than the reducing curves, reminds me that although dad is gone we lived those 19 years together, and for all their ups and downs there was a beauty in the love that bound us together and that shines on.

Until next time...
Beth x







You can follow me on Twitter: @bethyb1886