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.
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.
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
How Therapy Cats Can Bring Countless Joys to Older Adults.
St Augustine Health Ministries, a nursing home in Cleveland, Ohio, has a very unusual 4-legged occupant, Oreo the cat. Previously a stray cat, Oreo has become a beloved member of the St Augustine family. Her main job is to keep everyone happy. The residents love having her around and enjoy taking photos of her, something which stimulates their creativity, while employees can’t help but smile when they see the black and white feline doing her rounds at the home.
Many of the residents had to leave their beloved pets behind when they moved into the home, one of the challenges facing elderly people who choose to make the transition into a care facility. Oreo the nursing home cat lends a personal touch to the environment, making residents feel more at home. Here are some of the many ways in which having a cat around can improve the quality of life of nursing home residents.
Mood improvement
Elderly people often become lonely and depressed and cats are ideal to help them overcome this loneliness by offering independent companionship, affection, entertainment and a sense of responsibility. It’s a known fact that cats can lighten any mood and lend purpose to the lives of anyone who comes into contact with them.
Improved health
Cats generally require fairly little human care but the care they do require results in much-needed exercise among older people. Even those suffering from arthritis or with other physical limitations can care for cats without too much effort. Caring for a cat may call for new activities and routines that are important for both mental and physical stimulation. Caring for an animal is very rewarding and can be of great benefit to the overall health of the older generation, to the extent where it can help them live longer.
Why cats and not dogs?
Dogs also make for great pets but they require a lot more general care, training and exercise than cats do, things that elderly people are simply not always up to. Cats are definitely a more suitable pet option for a nursing home environment for the following reasons:
Cats are generally more than happy to remain indoors for most part, unlike dogs.
Cats require approximately 20 minutes of playtime a day which does not necessitate the owner being mobile. Cats are more than capable of entertaining themselves with the help of kitty-friendly toys such as a ball of yarn or a wind-up mouse.
Cats enjoy sleeping on a human’s lap or bed and don’t require a special bed like most dogs prefer.
Pet ownership brings a great deal of joy to the elderly and should be encouraged when viable. The benefits, both emotional and physical, speak for themselves and in terms of companionship now one will be more loving and loyal than a much-cherished pet.
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.
Intergenerational reminiscence with The Sporting Memories Foundation
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 offers a ‘drug-free’ therapy for Alzheimer’s Disease.
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.
Resources:
The Bat Foundation Deliver specialised table tennis Alzheimer’s therapy programme
Dementia-Friendly Swimming Organisation working to make swimming pools across the UK welcoming for people with dementia
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, founder of Creative Minds, leading an art session.
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 info@mycarematters.org.
Resources:
Creative MindsOffer practical art sessions across England
Creative Buddy is a social enterprise that provides mobile arts and crafts sessions for care/residential homes, day centres and community venues in Sussex.
Dementia and ImaginationA recently completed scientific study on the benefit of art for individuals with dementia
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.
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.
We were delighted to be invited by SITRA to collaborate, together with Carers Trust, on a new Guide to the Mental Capacity Act, funded by the Department of Health.
It has been specifically designed to support carers of people with dementia and was shaped by input from individual carers, carers groups, professionals and specialist support groups.
The Guide contains advice and support for carers in supporting those they are caring for to make decisions, or when they have to make decisions on their behalf, and gives useful information on when and how to get support and when to involve other people as well as on ‘best interest’ decisions and Lasting Power of Attorney.
It also contains a diary section to record key decisions or events.
“Wonderfully laid out for harassed carers to quickly navigate through.” Family carer
“I have found it such a useful tool to give to care workers as part of their MCA training.” Healthcare trainer
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 info@mycarematters.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.
Jim took a lot of falls in 2012. His eyesight, dementia and arthritis were all conspiring against him. He’d wake up in the morning, forget he could not walk and think the lights had all been turned off.
We are introduced to Jim in a video produced by scie, dealing with sensory loss (see link below). The staff in the Cumbrian care home where he lives have had to learn to be very patient, and use concise, effective communication. They try to communicate with Jim in a quiet area, so background noise doesn’t distract and confuse him.
It seems nothing can be done about Jim’s blindness, but that is not the case for many of those living in care homes and trying to cope with impaired vision. Whilst many homes diligently arrange sight tests for their residents, there are probably many more that do not see the need.
There is generally thought to be a correlation between dementia and sight loss, so a certain shrugging of the shoulders is inevitable, but dementia is already confusing enough for the person living with it so if there is anything that can be done to help them maintain senses like eyesight and hearing, it should be done. Regular sight tests are important – it is possible to have an eye examination at nearly all stages of dementia – to diagnose cataracts, check prescriptions are up to date and to assess for other conditions, treatable or otherwise.
Even if nothing can be done to improve a person’s sight, it is important to assess the quality of their vision so that carers can take it into account in their behaviour towards and around that person.
Yet, in a survey in 2014 the College of Optometrists asked their members how frequently they carried out domiciliary eye examinations in people’s homes or care homes. Just 10% said they did so regularly in people’s homes and this dropped further to 6% for regular care home visits.
Such low numbers are not down to cost. If you are over 60, or over 40 with a close relative who has been given a diagnosis of glaucoma you are entitled to free eye examinations (in Scotland they are free for everyone). And for those unable to visit an optician unaccompanied due to physical or mental disability they are entitled to a free eye test at home.
So why are the numbers so low? First of all, there is undoubtedly a sense that ‘it’s just the dementia’. What’s the point in finding out about a person’s eyesight because it’ll make no difference? Those with that opinion should read the story of how the life of Suzy Webster’s Mum has been transformed (and how a potentially traumatic experience can be made so much more pleasant by involving the family) – see link below.
Research done by the College of Optometrists suggests that it is often the families who are not convinced of the benefits of an intervention, and there is plenty of anecdotal evidence to suggest that many professionals feel the same.
This is borne out by Thomas Pocklington Trust’s report (link below) quoting the RNIB who estimate that over half of older residents in care homes have some form of sight losss, yet care home residents’ co-morbidities mean that eye care interventions are overlooked or thought unnecessary.
What’s to be done?
As with so much in this world it comes back to communication. Bust those myths about it making no difference. Make it known that everyone in a care home is entitled to a free NHS eye test at least every two years. Build awareness about the importance of regular eye tests and the difference it can make to the individual’s quality of life where improvements to their sight can be made. As Suzy Webster says of her Mum after her cataract operation: “She’s a different person. She’s really got her spark back… she’s walking steadier, her mood is happier and she’s interacting with us all better.”
A look into the future
Simply slip a small device over the in-built camera on your smartphone. Turn on the Peek app, hold the phone close to someone’s eye, click and forward the picture to a trained eye care specialist. This is the technology of the future to detect signs of glaucoma, macular degeneration, cataracts and other issues like high blood pressure. Social enterprise Peekvision claim that 80% of blindness is avoidable, and tools like theirs can replace an eye exam at a fraction of the cost. They should be shipping in early 2016 and expect it to be transforming lives in remote corners of the world… there’s a few lives waiting to be transformed right here on their doorstep. http://www.peekvision.org/
