As a social enterprise, Mycarematters actively supports small companies and organisations whose mission is to improve quality of life for anyone with long term health issues and their care giver/partner. Sara Smith neé Harris’s own experience of caring for a loved one with dementia led her to create her own clothing range designed to overcome many of the difficulties she had encountered when assisting with dressing and struggling to find stylish but practical alternatives.
The Story of Roaringly Precious
Roaringly Precious is an inclusive clothing company, specifically designing clothing for people living with cognitive and mobility challenges. The company was born when Sara, designer and founder, spent time caring for loved ones facing the challenges of dementia. She became frustrated with the lack of fashionable, easy to wear clothing available to help people maintain their sense of style and independence whilst providing for their specific needs. She decided to use her degree in textiles and costume design to do something about it.
All the Roaringly Precious garments have subtly built-in adaptations to make dressing easier. They use specific sizing rules, with loose fit styles that still fit and flatter the body. Some examples of their adaptations are larger openings without low necklines, easy fastenings and garments that are made to be worn either way so they never look back to front. These changes improve the dressing experience and promote independence and dignity.
‘We believe every person deserves the right to feel good about themselves and the clothes they are wearing.’
They consciously offer a smaller selection of styles but in a wide range of fabric choices so the clothing remains familiar to wear, whilst allowing people choice to express their taste and colourway preferences. They are a person-centred brand, interested in only providing purposeful products that will improve quality of life.
‘We work to support peoples’ abilities and skills, empowering and enabling them so their opinions are heard, their feelings are known, and their style and individuality is seen. We endeavour to provide inclusive clothing that solves issues, eases struggle, and provides people with a sense of comfort and enjoyment.’ Sara Harris
If you’d like to visit Roaringly Precious to see their latest clothing range please click here. And if you’d like to place an order, use Code MCM5 to claim your 5% discount.
Debbie Carroll and Mark Rendell are therapeutic garden designers who encourage care settings to take a fresh look at their care practices in order to engage actively and meaningfully with their outside spaces.
A few years ago they under-took an extensive research project to understand why care setting gardens were not used more actively, even when designed to the latest guidance, and particularly for dementia care settings.
This project took them on an extraordinary, and at times challenging, journey into understanding that the role of an organisation’s practices, attitudes and beliefs, its ‘care culture’, were key to understanding the level of engagement that residents had with their outside spaces.
Step Change Design Ltd was formed to uniquely support both the Care and Design sectors by sharing these findings.
‘Why Don’t We Go Into the Garden’ Map & Handbook (including free infographic poster)
This in-depth diagnostic programme offers care settings a practical way of understanding what is hindering engagement to outdoor spaces, and guides them to see what physical and cultural changes are needed to ensure a new garden design will support meaningful daily access.
The map visually shows how to plan a route forward to a more relationship-centred way of working where the garden is more of an extension to a home/care setting all year round. This ‘tool’ will also support garden designers to create a more dementia friendly garden in relation to current care practices.
The ‘Why Don’t We Go Into the Garden’ A3 lnfographic poster is also available separately. It summarises some of the key findings of the research with insights and tips on how to make the most of time spent outdoors. The statistics come directly from their large scale research project carried out with support from NAPA and other care sector agencies.
“We amassed a lot of data during our large-scale research project back in 2013. With NAPA’s valued support, we recruited 17 care settings across England and Wales. with the majority of residents living with dementia, into our study to find out the answer to a pressing question we had:
Why aren’t care home gardens being used more actively?
“Our findings identified the central role that care culture played in influencing how well gardens were being used. We discovered that the more progressive the care culture was (i.e. person-centred or relationship-centred) the higher were the levels of engagement with the garden, regardless of whether it was designed. We also found that fearful attitudes towards Health and Safety effectively ‘capped ‘ engagement levels with the garden. This slowly evolved into our now familiar Care Culture Map and Handbook.
“What we hadn’t done until recently was to do a deeper analysis of the quantitative data (i.e. the numbers, quantities and amounts of activities and happenings in the study).
“Ten findings from this analysis activity stood out as being simple and achievable alterations to day to day care practices that would make a huge difference in engaging residents actively and meaningfully with their gardens. We were mindful that our work with care settings is primarily about encouraging behaviour change and so we felt sharing these findings would be best done via a colourful infographic poster.
“The infographic style also enabled us to distil the information into a series of simple but clear statements that can encourage someone to pause and reflect on what they do. The poster format works well as it is something that people can gather around (just like our Care Culture Map) and it can be displayed publicly for all to see.
“The poster can also help care settings compare their attitudes and practices towards the outdoors with other settings. For example, the average length of time spent outdoors per visit from our study was 41 minutes. In some cases, and in good weather, this was well over an hour.
“Even in the rain, almost 4 in 10 residents in our study spent time outside, if they wished. So the poster is also a subtle means to interrupt deeply held beliefs and attitudes about going outside and is auseful tool to aid reappraisal of an important and often neglected part of the overall care environment at the care setting. And for those homes that actively engage with the outdoors with their residents, the poster is a great way to display to everyone the positive value that is already placed on this important and health-enhancing space.
“We hope that the poster will be displayed prominently on notice boards so that residents, families, staff and managers can feel inspired by these tips and insights to enable fresh ideas about stepping outside or extending a visit to the garden. Above all, the poster articulates how simple changes to habits and routines, like taking a meal outside, or placing a bench along a path, can all help to create meaningful time spent outdoors for everyone at the care setting.
For more information about the work of Step Change Design please email Mark or Debbie at firstname.lastname@example.org
This article on the creation of the infographic was originally published in NAPA Living Life Magazine Autumn 2019.
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 offer the Twist-N-ViewTM facility, enabling the information to be turned to the wall when not needed, displaying instead an attractive picture on the wall. And 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 Remember-I’m-Me 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: the Mycarematters Twist-N-View hanger has a pocket to display a person’s profile.
There are pros and cons for both systems, but the one significant advantage of Mycarematters is that it 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 www.mycarematters.org. 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 the Mycarematters system. In the version about to be released 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. You can of course use both if you wish: 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.
We’re launching a major update to Mycarematters in the next few days. Contact us to chat through the options and special offers available.
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.
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.
We’ve all experienced that feeling when our muscles remember how to do something we thought our minds had forgotten, perhaps riding a bike or swinging a tennis racket. We may assume that an individual with dementia soon loses access to these memories along with names, places or facts, but our motor memories (or muscle memories) are actually amongst the last parts of our brains to be affected by dementia. This means that an individual may still be able to recall movements stored long ago in their muscle memories. Lisa Krieger of Mercury News tells the story of Jim Byerlee, an 84-year-old living with dementia, who was taken to play golf by his care home staff. Jim was able to swing a golf club with all the accomplishment of a retired athlete.
Like Jim, everyone has been touched by sport in some way, whether playing it, watching it, on TV or attending live events. As Tony Jameson-Allen, co-founder and director of The Sporting Memories Foundation, says ‘You don’t have a choice, everyone has memories of sport’. Sporting Memories advocate the importance of sport, not only to keep older people active, but as a way to encourage positive emotions and a sense of community through reminiscence. They work with care homes, libraries and other communities to organise groups sessions at which older people can discuss their own experiences of sport. Sporting Memories provides resources and training to staff to help them trigger memories and draw on the positive emotional impact sport can have. As Jameson-Allen explains, ‘one of the best ways to spark memories is other people’s memories’; they focus on the strengths of people with dementia: their long-term memories.
Sporting Memories discovered that talking about sport motivated participants to be active, and now organises reminiscence sessions followed by physical activities, including walking, football and curling. Joyce, a 96-year-old erstwhile ice dancer, is one such motivated person. She was taken to an ice rink by a member of her care home staff and, by using an adaptive frame, was able to experience all the sensations of being on the ice again.
Physical movement can play a vital role in improving the quality of life of an individual with dementia. It encourages physical and mental stimulation, can prevent depression and assists with sleep. Many organisations have discovered the power of active care and the numerous ways it can be tailored for all ages and abilities.
The Bat Foundation describes exercise, or more specifically table tennis, as a ‘drug free Alzheimer’s therapy’. As part of their research, a team of neurologists took MRI scans to compare the brains of people with dementia who play table tennis and those who don’t. The scans revealed that certain parts of the brain light up dramatically in those who had just played table tennis; the concentration and co-ordination required to play the game stimulates the hippocampus and can delay cognitive decline. As a result, they have designed a table tennis table specifically for people with dementia, using colour contrasts to aid sight and side panels to assist with play. Annie Ingram, a voracious player, comments, ‘I can do this, I’m loving it!’.
Another sport which appeals to all ages is swimming and is known to have a positive impact on people with dementia, particularly because water offers a feeling of being weightless, thereby relaxing the body. But a public pool may be a daunting environment for someone with dementia and their carer. The Dementia Friendly Swimming Project aims to make swimming pools a safe and welcoming environment for people with dementia. They work across the UK, creating a network of dementia-friendly pools by producing guidance and offering training to swimming staff to achieve this aim.
Dance, on the other hand, is an activity which can be brought directly into the care home. Alive!, based in Bristol, offer dance and movement sessions which focus on the potential this activity has to help older people express themselves when they are no longer able to fully communicate their feelings; it’s about using dance to interact with individuals through rhythm and music. Alive! also offer training programmes to staff to help them bring active care into their own care homes, and run ‘Active Care Forums’ across the South of England for anyone working with older people. Becoming a member of a forum is a great way to pool new ideas and share experiences, whilst also gaining access to training, support and resources on active care.
JABADAO is a somewhat more unusual organisation. SPAGOG, Seriously Playful Armchair Games for the Old and Gorgeous, is a league event which uses basic movements and games with the simple aim of making life better. This is how it works: JABADAO teach the games to carers to play with their residents, the carers return the scores to the organisation, and results are published online weekly so care homes, friends & family can see which team is leading. Two finalist teams play against each other for the famous SPAGOG cup. JABADAO specialise in creating activities for people in late stages of dementia, and offer training for carers to improve the non-verbal communications of these individuals. Contact JABADAO if you’d like organise a competition in your area.
All of the above organisations, and more – see links below – offer the opportunity not only to maintain or increase physical fitness, but to become part of a community and interact with others through a medium other than speech. As Tony Jameson-Allen says, ‘it’s about friendship and keeping people supported just as much as it is about sport itself’. When words are a struggle, it can be the things which do not require any words at all that can offer us the most support.
For the average person, being given the opportunity to create and express themselves might inspire a sense of freedom and productivity; it might also be something we take for granted. For a person struggling with dementia, perhaps with weakening senses or an inclination to recede into themselves, the power of art and creativity can be transformative to their quality of life.
Worldwide, people are beginning to understand the importance of creativity for those with dementia. In 2015, the Alzheimer’s Society produced a guide to encourage arts venues to become more dementia-friendly, offering extensive advice on how to do so. Sir Peter Bazalgette, Chair of Arts Council England, says “There are 850,000 people in the UK living with dementia and, for many of them, the arts will be fundamental to enabling them to live well with their condition”.
James Cropper is someone who has grabbed this idea by the horns. James was caring for an older adult with learning disabilities when he discovered the power of arts and crafts.
“He just came alive,” says James after observing this individual’s love to create.
Inspired by how stimulating and energising art could be, Creative Minds was soon formed. Now, James and his community of experienced artists enhance the lives of thousands of people in care homes, placing emphasis on experimentation and allowing them the time and materials to create their own pieces of art work. And the benefit is not just emotional; as well as boosting self-esteem, James explains how creativity increases cognitive stimulation, improves dexterity and motor skills, and reduces stress and anxiety. Family members of residents have been impressed with the art sessions and notice a profound impact on the residents. Jane, a resident’s daughter, comments, “I believe these sessions provide far more to the individual than just an afternoon of fun”.
Creative Minds continue to develop their art sessions and have started encouraging the interaction of multiple generations by inviting primary school children to join in with art sessions at care homes. They aim to make art accessible to people of all ages and abilities, bringing their sessions to more and more locations.
Engage & Create, founded by Rachel Mortimer, uses art in a slightly different way. Using an iPad to display famous pieces of art, they facilitate discussions of art in care homes and encourage conversation amongst people with dementia. Rachel says that it is fascinating how people with dementia notice things in art that she has not seen before. Like James, she has observed first-hand how interaction with art can draw people out from their shells and improve well-being, not just during the discussions, but well beyond them.
In 2007, The MoMA (Museum of Modern Art, New York) set up an initiative to make art more accessible to people with Alzheimer’s, expanding their education programmes to assist health and art professionals in making art accessible to them. Today, they continue to encourage people living with dementia interaction with art through programmes (see link below). Whilst a trip to New York to participate in one of MoMA’s dementia programmes may be a little tricky, Engage & Createbring discussions directly to the care home.
And they don’t stop there; Rachel’s ‘Ignite Programme’ offers a tailored training package to care home staff so that they themselves can lead discussions about art work, supported along the way by the Engage & Create team. An occupational therapist told the team, “that was one of the best training sessions I’ve ever had … it’ll change the way I work with people with a diagnosis of dementia forever.”
If you want still more proof of the power of art, take a look at this recent study on dementia and creativity, ‘Dementia and Imagination’. The project was studying how visual arts can impact people with dementia. As the research only ended in December 2016, full findings are yet to be published but the initial reactions are undeniably positive. Participants commented on the soothing environment and the sense of achievement they felt; findings also indicated that family members and carers were affected positively as the art sessions allowed them to get to know the residents better through their creations.
All of these ventures focus on what people living with dementia can do rather than what they can’t do. In turn, the people living with the condition learn to focus on these things as well, nurturing an environment of positivity, colour and creativity which has the power to significantly improve their well-being.
If you are aware of an organisation that should be included in our list of resources, please email the details to email@example.com.
Alive!Offer art sessions in care homes across the South of England
Arts4Dementia develops arts programmes to empower, re-energise and inspire people with early-stage dementia and carers through challenging artistic stimulation, to help them live better for longer in their own homes.
Equal ArtsOffer training sessions for care staff and run projects encouraging creativity amongst people living with dementia
MoMAInformation on how to make art accessible to people with dementia.
We are delighted to be partnering with Many Happy Returns to create the Twist-N-View Happy Memories Set for care homes and hospitals. We have adapted our Twist-N-View Display Care Chart so as to display and store a number of the award-winning Chatterbox Cards, and are now offering 6 Care Charts and a pack of 26 Chatterbox cards for just £77.60.
Not only does the Twist-N-View Happy Memories Set facilitate person-centred care by ensuring all those interacting with an individual are aware of their needs and preferences, but also provides the tools to encourage conversations and facilitate reminiscence sessions.
There’s now an alternative way to collect and share a person’s needs and preferences, using a simple online tool. Mycarematters has primarily been designed to ensure that a person’s needs and preferences are available without delay in the event they are admitted to hospital.
But the information needn’t languish unseen until that point. It can be used in a person’s home or in a care home to help paid carers develop a relationship with the person they are caring for. A person’s Mycarematters record can be viewed on a tablet or printed out and displayed in a number of ways to suit different environments.
We offer a selection of display options: click here to see the current range, or contact us by phone on 01403 210485 or by email so we can offer some suggestions on the best way to use Mycarematters in order to meet your needs.
It’s already been an exciting year for Care Charts UK, seeing the adoption of our Remember-I’m-Me Care Charts by hundreds more care homes and hospitals, and receiving lots of positive feedback about the beneficial impact achieved by these simple, cost-effective tools.
We’ve also made a start on a range of products to help with the care of people living in their own home (we’re still looking for input on this from carers, both paid and unpaid, and those being cared for: please complete our homecare survey if you haven’t already done so.)
But there’s more to be done. I’ve been conscious for a while, now that we are working with increasing numbers of hospitals, of the difficulties faced by staff in collecting the information to go on a Care Chart. A number of hours, even days, might pass before nursing staff can build up a picture of the issues that matter to a person if they are unable to communicate these things for themselves. Even in that short time a person living with dementia might suffer trauma and discomfort purely because the information isn’t reliably available which would enable staff to allay concerns, meet a person’s dietary needs or understand what might look like inexplicable behaviour.
There is increased understanding of the value in treating the whole person to improve overall outcomes, and the power of Care Charts lies in providing quick, easy and reliable access to a person’s needs and preferences to assist in that aim. However, research suggests that nursing staff spend an average of 100 minutes per patient trying to collect the information that will help them provide that person-centred care.
So a few months ago I had one of those exciting lightbulb moments, with an idea that just seems so obvious I can’t believe it’s not already out there (not unlike my experience when I developed the first Care Chart for my husband Geoff). If we could provide a secure place online for people to upload their non-medical information, it could be made immediately available to all healthcare staff, cutting that 100 minutes by more than 90% and immediately improving the potential for better outcomes for both staff and patients.
In that moment Mycarematters was born, and in true ‘JFDI’ style (so often referred to by my friend Gill Phillips of @WhoseShoes’ fame), we’re about to start building the platform.
I want to reiterate the point that this is not about medical notes; there are others working on ambitious projects to digitise those, and they face many challenges. Mycaredata will focus instead on details like preferred foods and drinks, what assistance is required for a person’s mobility, why a particular routine is important and any other issues that matter to a person: reassurance for example that their pet is being cared for whilst they are in hospital, or that they need assistance to eat.
Uploading the information will be simple and straightforward, guided by a series of prompts, and it will be a quick and easy process for hospital staff to access it. We’ll be making use of the best encryption and data security software to protect the data (talktalk IT staff need not apply!) and the best news is that we’re going to try and keep it free for both individuals and hospitals.
If you would like to follow our progress you can do so at www.mycarematters.org and/or comment on any aspect of the project at firstname.lastname@example.org. I’m sure the end product will be quite different to what I was envisaging when I scribbled that first note to myself, but the aspiration won’t change: to improve the experience of a hospital visit for those people who struggle to communicate their needs, thereby improving their outcomes as well as those of the staff and of the NHS.