11 September 2013
An address by VW Bro Chris Caine, PGSwdB, Deputy President of the RMBI
VW Bro Caine commenced by thanking the MW Pro Grand Master for the opportunity to provide a relatively short, but comprehensive presentation on the important, topical and at times emotive subject, ‘Understanding Dementia’.
He went on to say that during the next eighteen minutes he would provide a detailed explanation of dementia and its two most common forms: Alzheimer’s disease and vascular dementia, then moving on to explain, from a personal perspective, how the RMBI, one of the four central masonic charities based in Freemasons’ Hall, and of which he is privileged to be Deputy President, is providing high quality care for RMBI residents with dementia.
In so doing, he would explain the importance of colours, fabrics, pictures and photographs as well as providing examples of signs, a memory box and a detailed explanation of how to address people living with a dementia, the use of precise narrative and the care needed when considering the use of mirrors.
VW Bro Caine explained that dementia is a word used to describe a group of symptoms including memory loss, confusion, mood changes, and difficulty with day-to-day tasks. The most common form of dementia is Alzheimer’s disease which affects around 62 per cent of those who suffer from dementia. With Alzheimer’s disease, two abnormal proteins build up in the brain forming plaques or tangles usually first seen in the part of the brain responsible for making new memories. The second most common form of dementia is vascular dementia which affects around 20 per cent of those with a dementia. Vascular dementia reduces the blood flow to the brain often damaging those parts of the brain important to attention, memory and language.
Although the above could sound terribly frightening, VW Bro Caine assured all present that from the perspective of the RMBI the prospect of living with dementia needn’t be frightening as by the careful training of staff and use of fixtures, fittings, furnishings, colours and other specifics, life can be quite comfortable. All 17 RMBI homes throughout England and Wales are registered for dementia care with 12 having specialist Dementia Support Units.
He explained exactly the purpose of a Dementia Support Unit. Some RMBI residents who live in a Dementia Support Unit are so confused by their dementia that were they not to be cared for in a keypad controlled environment, they could well enter areas where there is a greater danger of harming themselves or others. The units have been especially developed to provide comfortable and intimate living environment for a small group of people who are generally at the same stage of their illness.
However, it’s not necessary for everyone with a dementia to live in a Dementia Support Unit. VW Bro Caine explained about the RMBI home in South Wales, Porthcawl, which was built in 1973; when it was built the average age of new admissions was 64 and every perspective resident had to provide a Certificate of Ambulance, signed by their GP to prove that they could walk unaided to and from the dining room three times each day.
In that relatively short time – only 40 years – the average age of new admissions to RMBI homes is now approaching 90. With two out of three people within that age group living with some form of memory loss leading to dementia it’s essential that the RMBI reflects the need of Craft.
As previously advised, he suggested that the careful use of colours, signs and pictures can greatly assist normal life and a fine example is the Davies Wing at Shannon Court, Hindhead in Surrey. VW Bro Caine explained that in 30 years’ time he would be 90 and if he’d developed a dementia could move into an RMBI home and would quite like it to be Shannon Court where he might live on the Davies Wing.
On the Davies Wing there is a single-colour carpet with the warp all in one direction. If the carpet were to be joined and the warp to be at right angles to that which is normal, residents with a dementia may perceive the join to be a step and become confused by it. VW Bro Caine mentioned another care home provider that had a beautiful new floral display carpet in their main lounge. Sadly, some residents were attempting to pick the flowers seen on the carpet and therefore would not go near the beautiful lily pond in the centre of the room.
Looking ahead 30 years, on the Davies Wing there are hand rails down the corridor to assist with ambulance because many residents are already very frail when they move to an RMBI home. The hand rail would be extended over a utility door such as a laundry or a sluice room, to ensure that it couldn’t be confused with a resident’s room. VW Bro Caine then went on to provide examples of what had been done in relation to recognising particular rooms and showed an example of the sign for a bathroom suite.
In pre-refurbished RMBI Homes a bathroom may have had a sapele door with B1 or B2 on it which is not meaningful to somebody living with a dementia, but the sign he displayed, clearly showing the narrative ‘bathroom’ and a coloured picture of a bath full of water is much easier to understand. He asked all present to note the particular shade of blue behind the black narrative, which is cyan and it’s one of a small group of primary colours – magenta, cyan and yellow – which following extensive research at Sheffield University has been proven to be most easily recognised by those even with acute dementia. See above.
In RMBI homes there is often a large dining room with smaller dining rooms for use by smaller groups of residents. Previous to refurbishment the dining room might say D1 or D2, which is not meaningful to somebody living with a dementia, but the sign he displayed quite clearly showed a plate of food, a knife and fork and the clear narrative ‘dining room’ which would ensure that there would be no misunderstanding that that is indeed the dining room. Also see above.
VW Bro Caine explained that he had spoken to Professor Clive Ballard concerning life expectancy following diagnosis of dementia, particularly Alzheimer’s disease and that he also spoke of the importance of the careful use of signs and memory boxes.
He went on to suggest that were he to be living on the Davies Wing and was making his way down the single-coloured carpet, holding onto the hand rail over the sluice room door he would come to his front door. At the moment he lived at 15 Roseacre Close in Emerson Park near Hornchurch and his house has a white front door with number 15 on it. If he were to remember that when he moved into the Davies Wing in Shannon Court he could have a white front door with the number 15 on it to assist him. To further assist, and many residents have these, he would have a memory box outside his room.
Prior to showing his own example of a memory box, VW Bro Caine asked that viewers consider what they might have in their own memory box. It should contain intrinsically personal items to help one remember that one is approaching one’s own room and that when walking along the Davies Wing he would come to his white front door and at eye level would be the memory box displayed, a twelve by twelve glassless casement frame with intrinsically personal items belonging to Chris Caine – above.
He explained in detail, the number plate was purchased by him in 1995 from the DVLA and has never belonged to anyone else before Chris Caine. Significantly, again, the colour yellow with black numeral and letters on there. Above that was a photograph of a couple of his cars and being privileged to be a Liveryman of the Worshipful Company of Makers of Playing Cards in the City of London, there was a depiction of the two jokers from the Livery. In the top corner was a picture of his late wife, Joy, who sadly died 16 years ago. He hoped that he would never ever forget her and the picture showed Chris and Joy at their first Ladies night when he was President. Next to that was the double-headed eagle of the compliment slip of the St John Group of the Rose Croix Chapters in London where he’s privileged to be Group Recorder to the Inspector General, Very Illustrious Brother Graham Redman.
VW Bro Caine explained that these were intrinsically personal items to Chris Caine, which would assist him when he walked along the Davies Wing corridor and came to his white front door his memory box would be at eye level so there could be no confusion that he had reached his own room. Having entered his room there may well be the end of a wardrobe or a white board with other intrinsically personal photographs displayed, possibly of his son and daughter, his favourite nephew with their respective wives and husband, maybe even children with their boyfriends or girlfriends, and if they did come to visit him he hoped there would be a label with their name on because at that stage, when he’d be 90, he might not remember who they are or the names of their boyfriends or girlfriends.
VW Bro Caine also explained about age perception in many forms of dementia. Although a person may be in the 80s or 90s they may believe themselves to be in their mid-20s, say 26. He went on to say that three years ago he was faced with a very embarrassing situation when he was being shown through the newly refurbished wing at Devonshire Court in Oadby in Leicester. There the manager took him into one of the small lounges, which had been refurbished, and there was an elderly lady in her late 80s or 90s watching television. There was a 1940s style mantelpiece with a ticking clock, and she was very happy in her lounge. As he approached her she looked up at him and said “are you my dad?”
VW Bro Caine explained that he had been embarrassed and had not known what to say, but since then, having been trained, as have all staff in RMBI homes - not just nurses and care assistants, but laundry staff, domestic cleaners, gardeners and maintenance staff – and indeed, many head office staff including our Chief Executive, myself, James Newman the President, and other Trustees have been trained in this way. He now knew how to answer the lady so as not cause any offence or further confusion. Importantly he would kneel down to be at her level and avoid any sense of condescension and hold her hand. He explained that tactility is terribly important with dementia and that some RMBI residents’ enjoy an appropriate cuddle from our staff. He should maintain eye contact with the lady and show a smiling face; although the smile may not get an obvious response, he would be signalling an attitude of friendliness towards her. Then he should say a precise form of words such as “that’s very kind of you to think of me like that, but I am just visiting today.” He would then let go of her hand, rise and move off.
By that very carefully worded statement, importantly, he hadn’t told her a lie because there will always be moments of lucidity with dementia, and it’s important not to lose the trust of somebody living with a dementia; he hadn’t been condescending because he knelt to be at her level.
VW Bro Caine explained that it may have only been a few moments to make that statement, but that lady’s attention span can be as short as a couple of minutes and were he to have gone back to the lounge, five or ten minutes later, she might have asked again “are you my dad?” He advised that he had been in a situation with someone with dementia in his car on a car journey and within an hour, she had asked thirty times “where are we going?” and that every time he answered the question it was important that he did so with a freshness as if it were the first time he’d heard the question.
As Chris Caine had explained earlier, some dementia affects part of the brain which creates new memories and she wouldn’t remember that she had just asked him the question. He suggested that it may well be that those to whom he was speaking had had dealings with people with dementia and been asked “when am I going home?” and that instead of saying, “you are at home mum, you now live here,” one should say “can we talk about that when we’ve been out for a walk?” Or “can we chat about that when we’ve had a cup of tea?” Although prevaricating, the response would not cause any concern or alarm.
VW Bro Caine suggested that he thought it important to understand about the use of mirrors with certain forms of dementia. At the RMBI home at Stisted Hall in Essex, the Dementia Support Unit is on the ground and first floor and many residents have their own bedrooms and assisted bathroom on the first floor. They gain access to the first floor via a lift, so the carer would assist the resident into the lift and travel to the first floor. While they are in the lift they wouldn’t see a mirror because reflected to them would be an old person who is staring at them when they perceive themselves to be in their mid-20s and that can cause fear.
Assistance can also be provided in one’s home environment with the careful use of photographs and a considered choice of words can be of assistance. VW Bro Caine explained that he had given a presentation to a Lodge at Chingford in Essex some time ago and after the meeting and before the festive board the junior warden had come to him and said: “my mum has been suffering from Alzheimer’s for some time now. She visits us regularly, she used to be fine, but more recently she has become frustrated and aggressive and much to the embarrassment of my two young children she has become incontinent - her frustration has manifested itself in wetting the sofa.”
After he had heard a lot more about mum’s home environment and her background VW Bro Caine suggested that the next time he visited mum he should take copies of pictures of the Ford Consul with members of the family, the family home and garden as it was in the 50’s and place the copy pictures in frames. Some weeks later when he saw the Brother again, he suggested that he had heeded his advice and when mum visited she still sat in the same place on the sofa, but within her home environment, she had familiar pictures which made her very happy, and importantly she was no longer incontinent or frustrated.
VW Bro Caine explained that a close friend of his, Shane, whose mother is currently living in a home on the south coast of England and has a particularly challenging form of dementia, not yet diagnosed but believed to involve vascular dementia and possibly dementia with Lewy bodies because she was disillusioned. When Shane was visiting her recently he went into the lounge and said “hello mum,” and his mum said “oh, your father was in earlier.” Sadly, Shane’s dad has been dead for more than ten years, but because Shane understands how to deal with dementia he didn’t tell mum, “mum, dad has been dead ten years,” because that would have re-introduced all the unhappiness of having lost her husband and loved one from so many years. Instead, Shane simply said “Oh, I haven’t seen dad today.” He hadn’t told a lie and hadn’t caused any further confusion.
In all forms of dementia early assessment is essential as with the use of non-anti-psychotic drugs, in some cases, short-term memory loss can be reversed and the person living with dementia can continue to live with their dementia on a plateau and then have a slow deterioration rather than declining steadily and slipping away. Normally, an assessment can be arranged through one’s own GP, but if that’s difficult it’s important to remember that the very successful Freemasonry Cares helpline can channel the call to where it needs to be, possibly to one of the extended team of Care Advice Visitors from the Central Charities who could visit at home and give guidance and advice.
VW Bro Caine said that he was pleased to advise of future RMBI plans. Not only will training be extended to families and the wider Masonic groups in relation to dementia, but the RMBI is looking into day care throughout the wider Masonic community. When summing up, VW Bro Caine suggested that in the relatively short time he hoped that a true meaning of dementia had been gained, especially the two most common forms, Alzheimer’s disease and vascular dementia, and by the examples shown he hoped that an understanding had been gained of how to deal with somebody with a dementia and how even in their own home or one’s own home a balanced environment could be achieved with the careful use of photographs.
VW Bro Caine completed his presentation by thanking the MW Pro Grand Master and Brethren for their polite attention.
Putting the pieces back together
A new way of treating dementia recommends that you concentrate on creating the best possible quality of life for people. Andrew Gimson finds out how RMBI homes are pioneering groundbreaking techniques in dementia care
Helen Walton speaks with some emotion as she discusses providing good quality care for people living with dementia. As operations director at Dementia Care Matters, an organisation that has become closely involved in the provision of dementia care in the homes run by the Royal Masonic Benevolent Institution (RMBI), Walton draws a sharp distinction between the right and wrong approach.
Care has traditionally been very institutionalised; huge importance is attached to routine and the atmosphere in some homes is sterile. People with dementia are treated as passive recipients from whom no initiative is expected.
Walton is deeply concerned that this kind of care still exists today, which can leave people sitting in their chairs staring into space. She believes strongly that it can be different, that instead of being run with the greatest possible efficiency, homes can concentrate on creating the best possible quality of life. She emphasises that although people living with dementia may have lost their capacity for logical thought, ‘their feelings are enhanced – feelings are what they have left, and are stronger than before’.
For Walton, staff must encourage rather than repress the natural inclinations of those they look after. The first step is to relax any barriers between staff and residents. In a home where Dementia Care Matters is called in to advise, the staff will get rid of their uniforms and the main meal of the day will be eaten together. Once this happens, it will not necessarily be apparent who is a member of staff and who is a resident. The two groups will be running the home together as friends.
Debra Keeling joined the RMBI four and a half years ago. In her role as deputy director of care she has a brief to bring in exactly this approach. She is ‘hugely encouraged’ by the progress that has been made: ‘The people who live in our homes are now becoming much more involved. We’re really developing communities.’
Joining their reality
The RMBI has seventeen homes in England and Wales, accommodating more than one thousand residents. Louise Baxter is home manager at an RMBI home, Prince Edward Duke of Kent Court in Essex. She tells the story of Nina Wainwright, who arrived in the dementia support unit in 2008. Mrs Wainwright, who was suffering from early to mid-stage dementia, had great difficulty settling in. Like many people, she felt disorientated by leaving her own home. She would ask: ‘What is this place? Why am I here?’
The staff became increasingly worried about her happiness and welfare, so they arranged with the catering contractor for Mrs Wainwright to start working in the kitchen. Each morning, she comes downstairs, goes to the kitchen and starts to wash up and make herself useful. She believes she lives upstairs in her flat and is employed to undertake washing up as well as some waitressing duties. This has given her a sense of purpose and allowed her to feel once more in control of her life. Staff ‘join Mrs Wainwright in her reality’ – they do not seek to disabuse her of her beliefs.
Baxter believes that her diploma course with Dementia Care Matters has certainly given her the confidence to join people in their reality without being accused of infantilising them. ‘It allowed me to work in the way I’d always wanted to.’
‘If a resident asks for her mother, you could say: “Tell me about her. She sounds very special”’ Debra Keeling
Conventional methods for treating dementia would confront the person with reality. When they asked for their mother, for example, they would be stood in front of a mirror and shown they were clearly far too old for their mother to still be alive.
Nowadays, there is a different approach. When a resident with dementia says they want to go home, the best thing to do is open the door and let them go outside. ‘Once they’re outside, the urgency to get out is gone,’ says Baxter. ‘You can then go and rescue them by saying something like: “Oh hello, Mrs Jones. I live next to you. Would you like to come and have a cup of tea with me?”’
There are parallels between the care of children and those with dementia. If a child is playing a game that depends on imagining that a toy is real, you do not ruin things by telling them to stop being so stupid, the model car is not real. Rather, you enter into the child’s world in the same way that you should with a person with dementia.
Keeling agrees: ‘While you should never lie to people with dementia, if a resident asks for her mother, you could say: “Tell me about your mother. She sounds very special. Do you have a photograph of her?”’ The RMBI has sent one or two people from each of its homes to take the diploma run by Dementia Care Matters, while everyone else – from gardeners to trustees – have attended courses run by the Alzheimer’s Society.
Dementia Care Matters has awarded Prince Edward Duke of Kent Court its Butterfly Services kite mark. Launched in 2010, the kite mark is conferred after unannounced visits by auditors who ‘observe the quality of interaction between staff and people’ in a home. Six of the RMBI’s homes have received the award and this work is of the greatest value. By showing that there is a better way to look after people with dementia, the RMBI and Dementia Care Matters are performing a public service of inestimable value.
A new dementia support unit has opened at RMBI care home Barford Court, Hove. The unit can accommodate 10 people and provides a therapeutic environment for people with dementia.
Barford Court staff have received dementia training so that they are able to provide support to the residents to live a meaningful and active life while staying at the home. The family-sized unit of 10 enables each person to be cared for as an individual. This warm and supportive approach works in tandem with RMBI’s Care Strategy of providing person-centred care.
Dementia is one of the most challenging issues society faces: in the UK, there are around 750,000 people with a form of the syndrome, and this figure is set to rise in the next 20 years. A recent report from the Alzheimer’s Society showed that two-thirds of people living in care homes have some form of dementia. Debra Keeling, deputy director of Care Operations at the Royal Masonic Benevolent Institution (RMBI), said: ‘We found that people with dementia, of varying types and stages, live throughout our care homes. Therefore, as an organisation, we needed to think about how we could adapt, improve and expand our services to meet the needs of the people who live in our homes, in a way that enhances their wellbeing and quality of life.’
A NEW CARE STRATEGY
As a result of the RMBI’s research on the type of care needed by the people using its services, a five-year strategy was approved by the board of trustees in 2009. The RMBI Care Strategy – currently being rolled out in a phased approach to its 17 care homes – focuses on person-centred care, and how quality of life can be improved for individuals using its services. New and improved care-planning documentation has been introduced. This focuses on the individual’s care needs and how this information could be used to infl uence the way care is delivered to ensure that it is meaningful to the individual. Relatives are also encouraged to be involved in the process throughout.
Many homes hold regular relative-support groups for families of people living with dementia that offer both emotional support and advice about all aspects of dementia, with an emphasis on sharing experiences. The RMBI Care Strategy is integral to the working of all departments within the organisation. Closer working relationships have been developed between departments, ensuring that the key goals of the strategy are met, and that any changes required within the care-home environment are implemented in a manner that is appropriate to the people living there. A comprehensive training programme to support staff has also been implemented. Through this investment in training and development, the RMBI aims to equip staff to review the care regime in their local care setting, in order for them to seek ways of removing barriers that hinder relationship-based care. On completion of the strategy, the RMBI will be able to deliver a more person-centred approach to its care provision throughout the organisation.