Supporting Eating and Drinking – Resource for Carers

Eating and Drinking Guidance for Carers

This booklet has been designed for all who support someone living with the later stages of dementia. It has been developed by a leading team of researchers and health & social care professionals including GP’s, speech & language therapists and palliative care experts. It has also taken into consideration the views and experiences of people with dementia. 

As dementia (and diseases like multiple sclerosis) advance, it is typical for people to experience difficulties around eating, drinking and swallowing. This booklet explains the physical and psychological reasons for these issues and offers a comprehensive series of strategies and resources to support carers & guide their discussions with key health professionals.  

With helpful tips on nutrition, how to offer food/drink and when to seek help, it also includes topics ranging from oral health to end of life hydration. An invaluable resource that has clearly been developed with considerable input from a leading team of experts in the field. 

Click here to download

In conversation with Anna Park

I first met Anna through the dementia care awards, when I was one of the judges and she was representing one of the shortlisted companies. Impressed by her passion and drive, I started to follow Anna on Twitter, and soon saw how she brings that same passion and drive to the wide range of issues that she cares about, whether it’s nature, dementia care or circle dancing!

So I’m delighted that Anna is now working with us to improve people’s experience of care, and I’m sure you’ll find her comments and observations here as insightful and thought-provoking as I did.

What first drew you to the world of care?

I think it has to be said that experiencing a vicarage childhood meant care homes, hospitals and hospices were familiar places to me from an early age. This no doubt gave me an understanding of life’s challenges, an ability to sit and talk to anyone and a determination to always try and see the person and listen to their stories rather than focus on appearances or diagnoses.

During my degree, I had a wonderful placement teaching in a special school and a summer volunteering in a day centre for young adults with learning disabilities. I had fully expected to train as an English teacher and specialise in SEN but these experiences and a temporary position working in a Mencap group home changed my direction and shaped my understanding of what person-centred care could and shouldn’t look like. I realised then that there was far more needing to be done to train and support adults in care than I could achieve in the mainstream classroom.

I went on to take the position of a Day Services Social Worker in a Multi-Purpose Day Centre where I joined a fabulous team of passionate creatives who fully recognised the value and contribution of every individual. There was a clear focus on self-advocacy, accessing the arts and fulfilling individual potential. For eight years I ran sessions in collaborative song-writing, IT/magazine production, symbol/communication techniques, skills for work as well as dance and drama performances for all ages and abilities. The aim was always to support people to develop the skills and confidence to create, express themselves and fulfil long term goals.

The opportunity to install and assess the learning opportunities provided by a new interactive sensory music & coloured light system became the subject of my Post Grad study (P.G.C.P.C.E) and led to my next position as a consultant and trainer at OptiMusic and later OM Interactive. It was my work developing the Mobii interactive table that would further immerse me in the world of dementia care.

From a family viewpoint I was also being drawn into the world of care through the experiences of my grandparents, one on each side developing dementia whilst in their 80s. My Grandad’s lifeline in care was continuing to play his keyboard, having spent his whole life playing the organ for his local church. For my Grandma, a teacher, collector and keen gardener, it was important that she was surrounded by familiar objects and photos and had essential access to a garden. I continue to advocate the vital importance of fresh air and nature to anyone who will listen! The years my Mother worked as a care home relief manager also gave me an insight into the daily demands and rewards of life working in a care home.

You work / have worked with some other great organisations, can you tell us a bit more?

Yes, my work with sensory technology, from the mid 90s onwards, led to some exciting collaborations working alongside the creators of the first interactive musical light beams (OptiMusic) and then pioneering the use of interactive projection technology in dementia care (OM Interactive). I had always been passionate that music and the arts should be accessible by everyone, and my Post Graduate research evidenced the enormous benefits of using technology to give people creative control.

It has been exciting to be part of a new era in person-centred technology, I thoroughly enjoyed developing the content and purpose of the Mobii interactive table and researching its effect on people’s emotional and physical wellbeing. It was very humbling to have this work acknowledged as the Most Outstanding Product at the Dementia Care Awards in 2018.

However, my years in sensory product development have also taught me the huge importance of training, care culture and emotional intelligence. Any interactive tool relies on the skills and abilities of those using it, the more person-centred the session delivery, the greater the response. No product can be a ‘fix all’, they have to be in the right hands, our carers are still our greatest resource.

I have been very lucky to meet some incredible people in the world of dementia care. I was particularly honoured to be asked to become a Special Adviser (Learning Disability Inclusion and Technology) for NAPA last year. NAPA (The National Activity Providers Association) is a charity who do so much to support and promote the delivery of meaningful activities in care with quality resources, training & guidance, newsletters/magazines, a helpline, annual conference and a fabulous awards ceremony; recognising the skills and dedication of care staff nationally. So I was more than delighted to join the NAPA team in a voluntary capacity.

Intergenerational work and exposing ageism are areas I am particularly passionate about, there is so much we can learn and gift to one another over the life course. As a Trustee of the charity Ready Generations I’m looking forward to encouraging greater connection across all generations with innovative community projects, an intergenerational nursery in a care home and research-led investigations aiming to shift perspectives and value the contributions of everyone.

As a teacher I still enjoy piano tutoring, particularly when that means re-igniting someone’s passion for playing. I have weekly sessions with a lady who is living with vascular dementia which have been both moving and joyful for both of us. I also call ceilidhs and barn dances as Hedgerow Tipple, which for me is the perfect way to share my love of music and dance with all ages and abilities.

What is it about Mycarematters that made you agree to work with us?

I have admired your mission to improve the experience of care since we first met at the National Dementia Care Awards in 2018. Your determination to ensure the needs of your late husband were made known to all staff in his care homes and hospital resonated so strongly with me. Having also lost a close family member to a progressive disease I understood the daily challenge of ensuring care remained person-centred when speech had virtually gone. Our family experienced the same frustrations and miscommunications whilst also recognising the difficulties staff faced when vital information was locked away in a file on an office shelf.

Honouring someone’s personal preferences can make the difference between a good day and a bad day. We experienced first-hand the consequences of information not being passed on with one oversight by cover staff sadly leading to a serious injury.  We would certainly have used Remember-I’m-Me Care Charts if we had known about them at the time. It’s so important for all carers to have an at-a-glance snapshot of needs and preferences and for families to be reassured that what’s important for their loved ones is actively shared and understood.

I also believe that Mycarematters profiles are important for encouraging conversation and connection, a reminder to always acknowledge the person directly and explain what’s happening rather than carrying out physical care tasks in silence. As a supporter of the Butterfly Approach I believe sharing this sort of information is essential for maintaining a sense of identity and belonging. We made sure that Sarah’s O.T certificate was above her bed alongside important photos including one of her proudly completing a helicopter flying lesson. These insights help carers to see the person behind the condition and talk about things that will be meaningful for them.

More recently I have been impressed by the My Future Care Handbook, an interactive guide which we personally found useful when navigating difficult conversations with my Mother-in-law, helping us to record her care and end of life preferences. A fabulous piece of work that everyone should be encouraged to complete for peace of mind about the future!

As a not-for-profit social enterprise I admire the ethos of Mycarematters and fully support their aim to celebrate the work of other small organisations who similarly strive to improve the care experience for all. So plenty of reasons to want to join the team!

What have you got planned for Mycarematters and its customers?

Well, firstly I hope to build on the fabulous work that’s already been done by continuing to raise awareness of our social enterprise and its mission to provide solutions, training and resources to improve the experience of care.

I also plan to expand our offering by inviting partner organisations to showcase their products, guides and training resources, because there is so much good work out there that deserves a wider audience. My monthly newsletter will help to keep our customers informed of our latest additions with specialist insights and our latest news and product updates.

I’d love to see Mycarematters become a hub of excellence, a first point of call for our care providers to source reliable information and a wide variety of tried and tested tools to help them deliver person-centred care to the people they support.

I’m also very conscious that Rogers & Kitwood’s term ‘person-centred care’ is in danger of being watered down through over-use, becoming synonymous with simply ‘caring’. I think it’s vital for us to focus on what it truly means i.e. to place someone at the ‘centre’ of their care, to see the world from their viewpoint and imagine how they are feeling; to literally climb into their chair. I’m reminded of Sara Livadeas becoming a resident in a Fremantle Trust care home when she was appointed CEO. A fabulous way to try and understand how it felt to live in one of their homes.

As the newest member of the team I’m conscious that any fresh initiatives will stay true to the Mycarematters ethos, supporting people in care to always feel included, valued and their presence acknowledged, regardless of cognitive or communication difficulties.

I look forward to supporting all our customers, sharing their stories and acting on any feedback so we can continue to improve the quality of our products and services. Carers, both paid and unpaid, are doing the most incredible work everyday, they are the greatest resource of all and our aim must be to support them with the right tools and guidance to carry out their important work to the best of their ability so the caring experience is better for everyone.

 

What does ‘planning for later life’ mean to you?

Planning for later life
A spectrum of needs
It has become quite fashionable these days to apply the concept of a spectrum – traditionally considered in terms of autism (as in being on the autistic spectrum) – to many aspects of our lives. So whether we’re talking about our sexuality, character traits or intelligence, there is a recognition that we may not conveniently fit into one category or another. Having a strong dislike of boxes and labels, I rather like this loosening of definitions, and I’m not surprised to find it true of people’s position on planning for later life as well.

People’s priorities differ wildly as to what is important when discussing the future, so asking what matters to them regarding later life inevitably throws up a huge variety of responses. They might be discussing appropriate adjustments to their home with an occupational therapist but have never considered what level of treatment they want if they get ill. Someone else may already have gone round the local care homes, picked out their favourite and got an Advance Decision in place but is in no hurry to appoint a power of attorney.

How far, and in which direction
There is also huge divergence in where the boundary lies as to how far people are prepared to take the conversation, and in which direction. “I’m not prepared to think about dying but I know exactly what music I want played at my funeral”, “I know I should… I’ll get round to it one day”, “No thanks, it’s not something I’m prepared to talk about”, “I must get this done now, before I need it”, “I’ve got it all sorted and my family know exactly what I want” and so it goes on.

No surprise then that attempts to increase the numbers of people completing advance care plans meet with limited success, when the forms tend to focus on collecting information the healthcare system would like to know, and may fail altogether to address the issues that are important to the individual.

Our approach with the My Future Care Handbook has essentially been one of: ‘Here is the information you need to make some informed decisions about your future, and the tools to act on those decisions. It is now within your power to choose which decisions and actions you wish to take, and when’.

We have aimed to cover everything, with a clear message that not all sections are relevant to everyone. From feedback received it seems there are a variety of approaches taken in terms of how it is used: some like to start at the beginning and work through to the end, others flick through and use the page markers to identify the sections they want to focus on first, and then there are those who dip in and do a bit at a time.

Keeping the scope as wide as possible makes it potentially relevant for every adult, regardless of age or state of health, and that approach was welcomed by Wendy Mitchell. “The front cover does not say it’s for people with dementia, people with cancer, people that are dying. The front cover is saying it’s for everybody.”
That wide remit called for input from a wide range of experts, both professional and by experience. So we were extremely fortunate to have a large group of people give generously of their time to help shape the content, tone and format of the Handbook, and it is undoubtedly the richer for it.

A thousand voices (well, a hundred anyway)

The value of this diversity of input was one of the themes to emerge during a Zoom chat with a group of people living with dementia, who had kindly put the Handbook through its paces.

As Agnes Houston put it: “it’s very clear this wasn’t done by a medical professional alone. The carers voices are through it, the voices of the people with long term conditions are through it. That’s what makes it so precious. You usually either get a carer’s view or a professional medical view or you get the view of the person with the long term condition. This is the first time I’ve ever seen anything where it is so, so inclusive. “

Wendy Mitchell agreed: “You can tell the minute you start looking through it that it’s not healthcare professional led and that immediately brings you in because it’s not some official thing that you are being told to read.”

That’s such valuable feedback for us, because we knew it would not be enough to provide a fact-filled resource, it had to be something that was going to get those of us reluctant to consider our future (and that’s, let’s face it, most of us) to make a start.

Alison Barclay, carer of her husband Gordon who lives with dementia, admits she’s a procrastinator and would rather do housework than start planning for later life… and she hates housework! But even she acknowledged that ‘if this book doesn’t get me doing it then nothing will.”

Sarah Reed, founder of REAL Communication Works, found she’d completed five or six pages before she’d even noticed. “It’s just so easy to follow. I’ve been thinking about my own will, my own needs… and what was surprising was how easy it was. Filling in a form on a page where you are being asked straightforward questions just makes it so simple. But if someone had asked me what I want, I wouldn’t have the faintest idea!

I didn’t realise…

This is something we frequently hear about one or more of the topics covered in the Handbook, and often from people who thought they’d covered most things. Alison didn’t realise there are now doulas for dying as well as for birthing. Wendy remembered she had not updated both her daughters about her funeral preferences, Frances found it made her think of things she hadn’t considered before.

Person-centred…
Because the Handbook is designed as an interactive workbook, what you end up with is a set of documents and decisions that are unique to you, reflecting your wishes, needs and aspirations for later life, end of life and beyond.

So, one size fits all? That’s perhaps going too far, but what we can say with confidence is that there’s something for everyone in the My Future Care Handbook, and whether you just fancy creating a bucket list, want to prepare a complete Advance Care Plan or need a prop to take the awkwardness out of the conversation with a loved one, all the feedback tells us it will work for you.

Order here. We are happy to send you a single copy for your personal use, or multiple copies for your organisation for your staff or clients.

Photo by Alex Block on Unsplash

Death and dying, not a laughing matter?

In my household this weekend we’ve been talking about what music we’d like at our respective funerals – we’ve even discussed that if we were to die during this pandemic it’s more likely that it would be a memorial service at some point in the future, because funerals can’t take place the way we’d like right now. I haven’t had such a good laugh in weeks!

Like many others, the current situation has made us consider our own mortality, and it’s obviously no laughing matter. On the other hand, why not inject a bit of humour into the conversation, if it helps us tackle what can be a very uncomfortable subject? (Besides which, having a laugh is apparently one of the best things we can do for our health!)

It won’t surprise you to hear that, as editor of the recently published My Future Care Handbook, I do actually have a power of attorney appointed, my will is written, I have a Mycarematters profile, an advance statement and an advance directive all in place. It would have been a bit odd not to have practised what I preach but I have to confess, it was done as much in the name of research as for the need to have these things in place.

But having gone through the process, there is something extremely comforting about knowing that my partner and daughters will not have the stress of trying to decide what I would have wanted, either before or after my death. I’d like to think it is a long way off, and I may well change my mind about some of the decisions I’ve made but that’s OK, it’s easy to do that now that I’m familiar with the various documents.

What I highlight in the Handbook is that there is no need to tackle it all in one go, but it’s never too soon to make a start. And if you are living with a life limiting illness like dementia or caring for someone who is, there are some tasks like appointing a power of attorney that can make a huge difference in helping life run smoothly in the future.

Whilst we laughed at some of our more extreme choices of funeral music I’m not going to pretend that talking about death is all fun, and I recognise that some people find it more difficult than others, that’s just the way of things. If you wish to start thinking about this, for yourself or a member of family, find a way that works for you. Perhaps it’s talking about what’s on your bucket list, or who’s going to feed the pets if you have an unexpected stay in hospital.

There are lots of decisions you can make regarding your future without a healthcare professional, but some, such as when it might be appropriate to reject further treatment or your preferred place to die, may need a conversation with someone such as your GP.

We all know GPs are busy people and never more so than now (though their current challenge is generally more about their numbers being depleted due to the need to self-isolate) but you can help them by thinking through the issues first and then call them for their professional advice and support. Face to face consultations are rare at the moment and it is difficult to have a wideranging discussion over the phone, but even addressing one or two key issues can lead to improved peace of mind for you and your family.

Order a printed copy of the Handbook here: https://www.carechartsuk.co.uk/store/myfuturecare/my-future-care-handbook/

The My Future Care Handbook is published by Mycarematters 2020 CIC, a not-for-profit social enterprise. 100% of any profit made is re-invested into developing and delivering services and products to help improve people’s experience of care.

This blog was written by Zoe Harris, carer for her late husband Geoff who lived with dementia, creator of the Remember-I’m-Me Care Charts, Mycarematters and editor of the My Future Care Handbook.

Should a care home choose Mycarematters Care Charts or Profiles?

Care Charts v Mycarematters

For those care homes looking to improve their person-centred care there are now two tools to help which appear, at first glance, to be doing the same thing: providing a quick at-a-glance view of a person’s needs and preferences in their room. Both systems ensure that all members of staff and visiting professionals interacting with a resident are quickly aware of the small things that can make a big difference. Both have won awards for the simple and effective way in which they assist delivery of person-centred care.

Where they differ is in how the information is collected and shared. The Care Charts have a laminated surface on which information can be written, wiped off and updated whenever required. Mycarematters profiles are created / updated online and printed out.

There are pros and cons for both systems, but the one significant advantage of Mycarematters Profiles is that they can easily be shared with other services. The simplest way is to supply a printout, but it is also quick and easy for anyone with the person’s name, date of birth and Mycarematters code to retrieve a person’s profile from online. So when a hospital phones to ask for information about one of your residents because the printout has gone missing, you can just provide the resident’s Mycarematters code and point hospital staff in the direction of the online facility.

There are other benefits offered by Mycarematters Profiles. There is space to add information about Advance Care Plans, DNARs, Power of Attorney for each resident and more, providing a central record of information that is quick and convenient to access when needed. You will be able to give family members access to their relative’s profile so they can view and contribute to the information held.

People like to work in different ways so what works best for one environment is not necessarily the best for another. It may be appropriate to use both: hang a laminated chart in your residents’ bedrooms for updating by hand, and create online profiles that can go with a resident in the event they need a stay in hospital.

Whichever method you choose, you’ll be helping your staff and others to better meet a person’s needs when they are unable to express those things for themselves: enabling everyone interacting with them to engage in meaningful conversation, to know their likes and dislikes, to make an emotional connection. It’s the least they deserve.

Contact us to chat through the options and special offers available.

Report highlights person-centred care as key factor in treating depression

A joint report from the British Geriatrics Society and the Royal College of Psychiatrists has been published which showcases examples of best practice. The illustrations flow from effective interdisciplinary practice in treating depression in older people living in care homes.

The aim of the ‘Depression among older people living in care homes’ report is to explore the ways in which geriatricians, old age psychiatrists and allied health professionals are working together to overcome the specific challenges that arise when treating depression in older people living in this community.

Access the full report here…

What causes that frightening world of hallucinations?

Judith Pott’s mother, Esme, was terrified that the faceless people who sat on her sofa and the gargoyle-like creature that hopped from table to chair meant she had some form of mental illness. Neither her GP nor her optometrist had ever heard of Charles Bonnet Syndrome (CBS)…

Judith explains:

Charles Bonnet Syndrome (CBS) is a serious side-effect of sight loss. In a person of any age who has lost over 60% of vision (which is halfway down the optometrist’s chart) from any eye disease, stroke, cancer, diabetes or accident, it produces vivid, silent, visual hallucinations which range from disturbing to terrifying.

For far too long, ophthalmologists have been well aware of CBS but have dismissed it too lightly and not warned patients that it might develop.  It might not, but forewarned is forearmed and should a giant rat scurry across the floor, it helps a little to know that this is probably due to CBS.

No one warned my late Mother – Esme – and she, like so many before and after her, lived in silence in her frightening world of hallucinations, fearing that they might be due to a mental illness. When she did, finally, break her silence and described to me the faceless people who sat on her sofa, the tear-stained Victorian street-child who followed her everywhere and the hideous gargoyle-like creature who hopped from table to chair – plus the times when the whole room or garden morphed into somewhere completely different – I was conscious of the word ‘dementia’ hanging in the air.

With a huge piece of luck, I read a tiny paragraph in a newspaper, which could have been written by Esme. With great relief, I contacted her ophthalmologist – who refused to discuss CBS; her GP who had never heard of it – and thought it ‘unlikely’; and her optometrist – who was equally unaware of the condition. The internet seemed to be the only answer and there I found Dr Dominic ffytche at King’s College London who was – and still is – the sole globally acknowledged expert on CBS.  He explained to me that when sight is diminished or lost, the messages from the retina to the brain slow or stop but the brain – instead of quietening down – fires up and produces images of its own.  What is seen – people, children, animals, insects, rodents, vehicles, grotesque faces, landscapes, fire, water, patterns, colours, whole scenes – depends on which part of the brain is firing.  He helped me to work out some coping strategies for Esme, which – along with reassurance – are the only treatments available.  The strategies give temporary relief but, for the rest of her life, Esme was plagued by hallucinations. As yet, there are no medical consultants who specialise in CBS.

It was obvious that awareness of CBS and the negative affect it has on the lives of those who experience it needed a wider audience.  In November 2015 I launched Esme’s Umbrella(www.charlesbonnetsyndrome.uk) at the House of Commons, with Dr Dominic ffytche as my medical adviser.  It became apparent immediately that there were many more people in need of support than anyone had realised and my newly founded campaign was inundated with calls to the Helpline – 0345 051 3925 (which is answered, courtesy of The Help and Information Service, 24 hours a day every day) and emails (esmesumbrella@gmail.com). We now estimate that there could be up to three quarters of a million people living with CBS.

The calls and emails continue at an escalating rate and, last year, Esme’s Umbrella made some giant strides.  First of all, Fight for Sight (the only UK eye charity that does research into every eye condition) offered me a Restricted Fund under its auspices.  Donations can be made via Just Giving (https://www.justgiving.com/fundraising/EsmesUmbrella or by cheque, written to Fight for Sight with FOR ESME’S UMBRELLA on the back and sent to Fight for Sight, 18 Mansell Street, London E1 8AA.  All the money is guaranteed to be spent on CBS research only.

With the financial help of Fight for Sight and The Thomas Pocklington Trust, I was able to appoint a researcher.  Dr Greg Elder will work with Dr John-Paul Taylor (whose focus is already on CBS) at Newcastle University, both in conjunction with Dr Dominic ffytche, who continues his work at King’s London.

Esme’s Umbrella was given an official CBS Awareness Day on which Dr ffytche and I met a group of 40 people with CBS and heard their support needs. Out of this meeting came my mission for 2018, which is to find funders or sponsors willing to offer space and time, for Esme Room Support Groups. Eventually, I would like to include specialist nurses, counsellors and relaxation therapists too. Exchanging experiences over a cup of tea helps the isolation CBS causes.

Consultants at Moorfields Eye Hospital will host the first-ever CBS Patient Study Day in 2018.  This will bring CBS into the open as never before and no one will be able to dismiss it as ‘just a side effect’.

Lastly, at the invitation of the President of the Royal College of Ophthalmologists, I have been invited to speak at the Royal College’s Congress in Liverpool in May. I will be emphasising the need to give a warning about CBS  and encourage patients to confide about their hallucinations.

If you need support, please do not live in silence, contact Esme’s Umbrella.

                                                            JUDITH POTTS – Founder of Esme’s Umbrella

How difficult can it be to draw a star?

I was introduced to this little exercise at a recent regional Dementia Action Alliance meeting, and thought others might also find it useful; care home managers may like to do it with their staff.

Click here to print a star on to both sides of enough sheets of paper to provide one to each person, and on one side invite them to draw an unbroken line between the two stars, thereby drawing a third star, without taking their pen off the paper. They are unlikely to find that too difficult. Then, ask them to turn it over, position a mirror (you’ll find suitable ones in Poundland apparently!) at the top of the paper on the table in front of them so that the star is in view in the mirror, and ask them to do the same thing, but this time only looking in the mirror.

The idea is to create a sense of what it must be like to live with dementia where you are unable to complete what seems like a simple task. Don’t be surprised to see people experience shame, embarrassment, frustration, irritation, impatience… exactly what people living with dementia experience every day.

Please Tell Me… a new Life Story book

We are often told that nothing can beat our Care Charts for getting information in front of everyone interacting with a person, but that’s not to say the learning should stop there. Our charts provide a snap-shot, at-a-glance view of a person’s needs and preferences, but should not be thought of as a replacement for life story work.
Regardless of whether it is family or staff members who spend time with a person to collect their memories and what matters to them now, the process can be extremely rewarding for both parties. And that information can of course help carers provide personalised and appropriate care, either in someone’s home or in a care home.
So we were very excited to see John’s Campaign new book Please Tell Me… a place to help someone share a childhood memory, the words of a favourite song, what made them happy in their early years. It is designed to follow the chronology of the person’s life, and the open questions provide opportunities for conversations.

Available as single books or in packs of 10. Click here to purchase…

 

Care Homes can now join John’s Campaign

Why should care homes join John’s Campaign?

by Julia Jones, co-founder of John’s Campaign

It’s a perfectly reasonable question – John’s Campaign started as a campaign for carer access to people with dementia in the acute hospital sector. My friend Nicci Gerrard’s father, Dr John Gerrard, had been living well with Alzheimer’s for almost ten years when he was admitted to hospital to have treatment for his leg ulcers. It was a hospital with old-fashioned restricted visiting hours, which were further curtailed by a noro-virus outbreak elsewhere in the hospital and a knee-jerk “no visitors” restriction.  He went in, “strong, mobile, smiling, able to tell stories about his past, to work in his garden and help with things round the house”. No one realised how his family support had helped him maintain these abilities. So no-one challenged the visiting restriction. No-one in the hospital though it odd that Dr Gerrard was simply lying in bed, passive, bewildered, almost certainly in a dangerous state of hypo-delirium because no-one in the hospital knew that he wasn’t always like that. They didn’t realise he could have been enjoying poetry or a game of chess. There were no rehabilitation beds available so they decided to keep him in hospital for longer.

Five weeks later Nicci and her family got their father home: “skeletal, incontinent, immobile, incoherent.”  He barely knew those around him and required 24 hour care for the rest of his life.  “Would we have left one of our children un-visited in hospital for 5 weeks?” Nicci and I asked one another. And so, after Dr Gerrard’s death in November 2014, John’s Campaign was born, insisting that the family carers of people with dementia should be welcome in hospital at any time.  Not just allowed but welcomed, 24/7 if necessary. Family carers (whether or not they are actually “family”) have a wealth of knowledge to share on behalf of the person who is no longer able to communicate reliably for him or herself. They are an essential part of that person’s team.

Superficially the situation in residential care feels quite different. Very often someone is moving into a home because they can no longer manage in the community, even with the help of their family. Family may be exhausted, despairing, guilt-wracked. Perhaps it seems kind to wave them away “Don’t worry, we’ll take it from here. You go home and take a break. We’ll let you know how s/he gets on.”

Alternatively you could think that families and friends are needed more than ever – but they are needed differently. They are needed to share information about the new resident, they are needed to maintain his or her sense of self-worth, to reassure them that they are still loved, they have not been abandoned. They are needed to bring “familiarity” to these strange surroundings. And, ideally, the shared responsibility with the care home can offer family members a chance to rediscover quality in a relationship that may have been damaged by illness, stress and tiredness.

I can imagine a care home manager sighing with exasperation at this point. “All this is true but we can’t MAKE the families come. There’s nothing stopping them but they just don’t bother!”

That’s a very good reason to join John’s Campaign.  Be part of a national movement,  put a certificate in the hall, write a letter to your families, and tell them that you’ve done this thing because they matter, you need them, their relative needs them, they need to stay part of the team. Families are the “third force” in residential care.

You can only join John’s Campaign if you know you welcome families at any time (with all sensible security arrangements, obviously). Then pledge your welcome in 50 words or less either by using the John’s Campaign pledge page or by emailing julia-jones@talk21.com .  You’ll be added to the Observer newspaper national list and to the interactive map on our website www.johnscampaign.org.uk