Get every D4Dementia blog post delivered into your email inbox - Sign up here:

Monday, 16 July 2018

Kathy’s story - Living with a learning disability and dementia

Imagine reaching your 40’s or 50’s having lived your whole life in the shadows of discrimination, exclusion, social stigma and poor treatment within many health and social care services... and then developing dementia. You’re younger than the majority of people who live with dementia and your dementia is likely (either through our perceptions or the circumstances of your health) to progress more rapidly. You are now part of one of the most seldom heard groups in society** - People living with a learning disability and dementia.

This is an issue close to my heart: My longest serving consultancy client of nearly 5 years are learning disability provider MacIntyre. I count many of the amazing people they support and their awesome staff as both colleagues and friends, but it wasn’t MacIntyre who originally introduced me to what life can be like when you’re a younger person with a learning disability and dementia.

On the day my dad moved into the care home that he would go on to spend over 8 years in, we met Kathy*. She was a bubbly, smiley, caring lady, clearly much younger than my dad and every other resident in the care home. She loved to ask questions and talk to anyone who would spend time with her.

Kathy wasn’t living with Down’s Syndrome, which is the learning disability most people associate with the development of Alzheimer’s Disease. Her only visitor was her sister, an older lady, devoted to her younger sibling and fiercely protective of her. Kathy’s sister was one of the most active and vocal contributors to resident’s meetings, making her a firm ally of ours. I’m sure she told me more about the disabilities and health issues that had dominated Kathy’s earlier life on one of our numerous chats over a cuppa, but I don’t recall the details.

Kathy’s room was in the corner at the end of the corridor, almost as if she was somehow set apart from the other residents - I never knew if that was deliberate or not. Kathy spent a lot of time in her room, making multiple clothing changes in a day and immersed with her toys and dolls. It was one of the most cosy rooms in the care home with every spare space filled, including having a bird feeder outside and plants on the windowsill that Kathy tended every day.

It’s been over 6 years since my dad died, but I still remember Kathy. She had a sparkle, but also a sadness. To be in a care home, surrounded by people significantly older than her, with staff who were mostly wonderful but without much time to spend with her (and the time they did spend with her was very much about tasks and functions) didn’t seem like the right environment for Kathy. She needed interaction, occupation (as did everyone!) and to socialise with her peers. 

Without her sister Kathy’s life would have been almost nondescript. Just another learning disability statistic, put into an aged care home that in the local area had a reputation for taking people other care homes wouldn’t take. Kathy’s sister was the person who had filled Kathy’s room with the things she loved, bought the clothes Kathy loved to keep changing into and the foodie treats that brightened up the long days.

Granted, the care home was better than Kathy living in one of the infamous long-stay hospitals, but that is a comparison that only looks favourable because long-stay hospitals really are the lowest dominator in terms of care and support provision for people with a learning disability. Back when my dad was alive I thought that was all Kathy could hope for, then in 2013 I began working with MacIntyre and was introduced to supported living, lifelong learning, person-centred approaches, Great Interactions, and the gold-standard of involving people in their care and support. The rest, as they say, is history.

I wish Kathy had known MacIntyre. I wish every person living with a learning disability, and especially people with LD who are developing dementia, could know MacIntyre. I’ll admit I’m bias; I’ve been heavily involved in their dementia work so of course I’m a huge supporter, but it really is groundbreaking as I wrote about here: ‘Watch And Learn: People With Learning Disabilities Leading The Way’ and here: ‘A Marriage Of Learning Disabilities And Dementia’.

But why does it matter you might wonder? Surely people like Kathy are few and far between? In fact, quite the opposite is true. People with a learning disability are living longer than ever before, but have a greater chance of developing dementia, with the link between Down’s Syndrome and Alzheimer’s Disease that I mentioned earlier being the biggest-known risk factor. Research and knowledge about LD and dementia remains patchy though, in common with so much about how as a society we view the importance of people with learning disabilities within our communities. 

Things are changing and heading in a more positive direction, but it shames us all that statistics like those calculated by the LeDeR (Learning Disabilities Mortality Review) programme tell us that a man with a learning disability dies 23 years younger than men in the general population, and that a woman with a learning disability dies 29 years younger than women in the general population. The median (when collecting data, this is the middle value, obtained from separating the higher half of the data sample from the lower half) age of death for a man with LD is 59 and for a woman is 56.

Those ages of course mean that if a person with a learning disability is going to develop dementia the majority will do so as a younger person, and in addition will likely face barriers in:
  • Identifying their dementia (including diagnostic overshadowing, where a person’s dementia symptoms are written off as learning disability ‘behaviours’)
  • Receiving a timely diagnosis (including difficulty accessing memory clinics and other specialist dementia services).
  • Being offered treatments (including non-pharmacological interventions, like music therapy and life story work, which a person with a learning disability may never experience).
  • Accessing age-appropriate, specialised care and support. 
I don’t know what happened to Kathy. My dad left the care home they shared on a cold March night by ambulance with an aspiration pneumonia that he never recovered from. He became a subject of safeguarding, and we went to clear his room shortly afterwards, the last time I saw Kathy. Her health, like my dad’s and everyone else’s, had deteriorated, she’d been hospitalised for bowel blockages and other stomach related issues, was immobile, and much of her spirit and communication abilities had become lost in the constant upheavals that characterised her life. The care home went on to be rated inadequate by CQC and has now closed.

Kathy had a life, but not the life she could or should have had, something far too many people with a learning disability experience. I’ve seen both sides of how we support people with a learning disability and dementia, and my appeal to anyone designing care and support services for our ageing learning disability population is to utalise best practice - it’s out there, shared by MacIntyre and others for all to learn from. It’s replicable, it’s achievable, and most of all it’s inspirational, because if we can get support for a person with a learning disability and dementia right, we can improve how everyone lives with dementia.

Until next time...
Beth x







You can follow me on Twitter: @bethyb1886

*Name changed to protect identity.

**September 2017 saw the launch of the Dementia Action Alliance's (DAA) 'From Seldom Heard to Seen and Heard' Campaign. The campaign focuses on people living with dementia and their families from six communities who are often marginalised from services and support: Lesbian, Gay, Bisexual and Transgender + (LGBT), Black, Asian and Minority Ethnic (BAME), Young onset dementia, The prison population, People living in rural communities and People with learning disabilities.

I'm a national member of the DAA, and proud to have worked with the team in developing this campaign, mostly by utilising my extensive knowledge and experience of working with people who have a learning disability and dementia. I wrote about BAME communities in my October 2017 blog, and people who are living in rural communities in my March 2018 blog.

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