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.
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 firstname.lastname@example.org.
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.
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/