This is an essential part of all REAL Communication workshops when we are discussing integrity and empathy in the context of care of people living with advanced dementia. Here's a little film about it.
Diffusion of responsibility is a sociopsychological phenomenon whereby a person is less likely to take responsibility for action or inaction when others are present. Considered a form of attribution, the individual assumes that others either are responsible for taking action or have already done so.
There's a saying in the dementia world, that a diagnosis of dementia for a person is in fact, a diagnosis for the whole family.
It can certainly be very hard to come to terms with. Hard enough for the person diagnosed of course, but in some ways, almost as bad for family carers, who must watch the deterioration of the person they love, usually over many years , without any hope of reversal. In many ways, for them, dementia is an ongoing bereavement process and loss of a loved one before death and often means massive and often exhausting changes to their own lives.
Dementia can be scary and disorientating for the person with the diagnosis. Short-term (working) memory loss; slowly disappearing awareness of basic things like eating, drinking and personal hygiene; confusion as to their whereabouts or who people are who they may have know for most of their lives; loss of life skills like reading, even vocabulary; rapid mood changes, anxiety, depression and even bouts of aggression; depleted motor skills and mobility; all these aspects of dementia can be frustrating or mystifying for the person and saddening (and sometimes maddening) for relatives. And just when things seem to have settled into a more steady pattern, the person's condition may decline further and the care goal posts move yet again.
Despite this long pessimistic list – and even though dementia cannot be cured or reversed, (despite what the red-tops would have people believe) it can be managed. A person can live well with dementia for a long time and with changing attitudes in dementia care, the experience does not have to be irretrievably negative.
Happily, in recent years, good communication is finally being recognised as one of the most important and essential ways of helping the person with dementia and their family to deal with the condition.
I developed the REAL Communication Framework in around 2003 as a response to my own observations, worries and concerns about my mum's condition and her care. She had vascular dementia and Alzheimer's disease for about ten years. I noticed how her friends gradually fell away, how people were nervous to engage her in conversation or worse, were faintly condescending; I noticed how impatient my father could be with her, the woman he adored and had lived with for over 60 years – and how all of us in the family felt 'at sea' with the experience.
Once Mum was in a care home, I noticed that the other residents and their families had similar issues. I saw that she was increasingly challenged to express herself. Of course, the carers knew almost nothing about her and had few, if any tools available to help them get to know her better.
I made her a life story album. Really it was one of the most important things I did specifically, if unwittingly for her. Nothing fancy you understand, just a pictorial chronology of her life with some simple captions, written autobiographically; for example, "Me in the garden dancing", "Our honeymoon in Bournemouth" that sort of thing.
We watched DVDs together that I knew would make her laugh. In the earlier days we might watch Dad's Army, but later she was unable to follow the plot lines and even Arthur Lowe didn't seem so funny any longer so we moved onto The Marx Brothers – nothing like a bit of slapstick for some instant shared hilarity. Her favourites were A Night at the Opera and Duck Soup.
And I encouraged her to talk. What I was doing was finding out about a person I realised I hardly knew. The album prompted her to share her experiences as a girl, as a younger woman, – things I had known very little about. In getting to know about her past, we bonded more deeply and I was more able to predict what she might want in the here-and-now. Her outlook, needs and expectations had their foundation in her earlier life.
I realised that through sharing her reminiscences and through some empathic, concentrated listening over time, we were able to replay some of her life history, together. This comforted her and helped her to centre herself a little in the confusing, wobbly world she found herself in.
Over five further years of observation, pondering and listening to the lives of many other people living with dementia, I developed the REAL Communication Framework. REAL is an acronym for Reminiscence, Empathic engagement, Active listening and Life story, four really important aspects of the care of older people with dementia. The Framework includes simple tools to help anyone caring for a person with dementia to do it with greater awareness, value, enjoyment and subtlety.
When REAL things are in place, anyone can have an easier and more meaningful relationship with a person with dementia and help make it an experience that can be borne more lightly, for all concerned.
There's an Alzheimer's Society Memory Café at a Housing Trust in north London. Everyone who attends is living with dementia, to varying degrees. Yesterday I spent a couple of hours with the regulars to facilitate conversation using my Many Happy Returns 40s and 50s Chatterbox cards.
Including one family carer and four Housing Trust staff members, there were about 18 of us in the room, sitting around at small tables with oilskin cloths, on each was a small glass vase with a single bright yellow fabric chrysanthemum. The colour of hope, I thought wistfully.
Everyone was wearing a badge and as always, as I went around the room so that we could all introduce ourselves, I noted unusual names written on them – most of those present were local, but a few had arrived here from the Commonwealth or as refugees from war. I knew that meant we would hear some intriguing stories.
The room was quiet and expectant. We started, as so often, tentatively sharing memories of favourite toys from childhood. Descriptions of dolls and doll's houses, of dolls' prams and dressing up family pets to wheel around in them, of cap pistols and Painting by Numbers, these soon became stories of constantly being sent outside regardless of the season, (even when unwell) of running around unsupervised, of climbing trees, of gang games, and in winter, of mucking about in the (helpfully warm) local tube stations.
As always, they described lives of happy, unfettered freedom hardly known by children today despite, for most, their relative poverty. One man who said his family could afford no toys at all, described his pet Collie, 'Sailor', "rather an odd name for a dog I suppose!" he laughed,"I trained him and he was at my side all the time. he would do that thing that Collies do, crouching down to listen. He was really clever." A Greek lady whose language has reached that stage where her words sound quite feasible but are nonetheless, challenging to understand – or even hear, spoke with poignancy and pleasure about playing with her sisters in the sunshine on her local island beach.
Then I spread the 52 cards arbitrarily around the tables and left the group pretty much to it. As always, the volume in the room rose dramatically as they started to reveal their lives to one another, prompted by the subjects, pictures and information on the cards. Their memories now spread across the landscape of their lives, their relationships, jobs, children and grandchildren.
And as always, the other volunteers expressed astonishment at the instant connection the cards prompted, the enjoyment and pleasure they observed, the sheer amount of conversation and animation. And as always, the participants commented on the cards and how well they prompted meaningful memories. And like all good parties, people didn't really want to stop sharing and lingered on beyond the finish time to continue chatting.
And as always, as I trudged through the January cold back to the bus stop, I felt a deep sense of privilege and wonderment to be able to bear witness to their hidden treasure troves of life experience and history.
I spend two days a month working at a medium-sized residential care home for older people. The majority of the people living there have varying degrees of dementia. I use the word ‘working’ advisedly because to be honest, mostly it hardly feels like work at all.
During the day, my role changes. In the morning, I host conversation groups. Firstly, an hour or so with a small group of people who have advanced dementia, then a further hour with a slightly larger group of people whose dementia is less acute. I have known a few of them for many years and consider all of them to be friends. Some struggle to speak now. All bear the challenges of old age and dementia with great dignity and generosity of spirit.
It is a privilege to hear their stories while they enjoy coffee or tea, soft fruit and biscuits during the first session, or a glass of sherry or fruit juice and crisps during the second. I mention the refreshments only because they help normalise and oil the wheels of socialising conversation. After all, we all go out for coffee or a drink, why shouldn't they?
In the afternoon, I facilitate dementia communication and life story workshops for the people who work at the home, helping them with techniques and approaches to communicating in care. Listening is key. In turn they compare and contrast their own life experiences, which helps to promote understanding and empathy between them as working teams.
A personal “This is My Life” picture album built by a member of the care team, supported by the person’s family and/or friends, is not only a living commemoration of a life lived, but a celebration of the key relationships surrounding the person and an expression of trust, respect, dignity, understanding and often love.
The albums have revealed some extraordinary stories and led to some highly connected relationships between the people living and working in the home. The personal histories revealed help the carers to deliver better person-centred care while supporting and promoting the ethos of the home, which is pledged to delivering meaningful relational connection for everyone who lives, dies, works, or visits it.
This is a well-led home with a manager who is highly involved with “my residents, my relations and my staff”, as she puts it. I would have been pleased for my mum to live in such a home. The home recognises that while things may not always be perfect, promoting a culture of real appreciation of people's lives, of learning and self-improvement, make self-esteem more possible – and therefore good care more likely. Sometimes it can be a good thing to take such things personally.
Wendy Mitchell's open, warm-hearted approach to life is hard to resist. She often speaks for others like her who are living with early-onset Alzheimer's disease and the difficulties posed by the disease on a daily basis. Here's a post she wrote this week on her blog whichmeamitoday and kindly gave me permission to republish on this humble blog.
Some people ask me how can I possibly do all the things I do on my own when I have dementia, so today I thought I’d give you the dementia view of the trip to speak at an event in Birmingham.
I received the invite some months ago. On the day an invite is confirmed, I start printing: printing the picture of the hotel, printing the picture of the venue, printing the picture of anywhere that needs to look familiar on the day so I don’t become anxious. If I’ve got a picture, I have something familiar to find.
So, to the morning I leave.
I have to have a taxi, as the buses don’t start running in the village until later, but I’m ready and waiting ages before the arrival time as I worry it will be late. I stand at the window watching out for the familiar car. If the time approaches and there’s no sign, I ring them. They know I’ll ring them and don’t get annoyed as they know I have dementia and I’ve explained why I panic as the time approaches.
The same anxiety lasts until I reach my destination… will the train be delayed and throw me off kilter? I always have to have a plan B worked out, so that I don’t panic if I miss my connection. That’s why I always take pictures – it helps me relax. Seeing the morning sun always helps.
The Train Journey
The third train arrives on the platform and it’s very busy. I have to have my bag near but there’s no room, so I have to risk leaving it in the luggage rack… there’s someone in my pre-booked seat, I need to sit by the window so I can see where I am and feel settled. They’re nice on this occasion and move to the aisle so I can have my seat. They move without a sigh or a tut, so I feel happy.
I set one alarm to remind me where to get off and another to remember my suitcase as I can’t have it next to me, because by the time I get to Birmingham, if I don’t have it next to me, I’ll have forgotten I have one with me. So I arrive in Birmingham, the station I know I hate due to its vastness and many exits leading to many places. I wander around for a while, calming my fears, pushing them into their box; there’s chaos as many trains have been cancelled and journeys disrupted, which can only lead to one thing – impatient people, fraught workers being hassled from all directions. I stand against a wall and watch the chaos around and try to work out what to do. I wait until I see a smiley face and ask which way out is the best way out…
Finding the hotel
Now the next biggy: the busy streets and unfamiliar surroundings – which way to go for the ‘5 minute’ walk to the hotel? I find a nice friendly café – Waterstones or Caffé Nero is always a good bet. I take photos while I’m trying to spot one – taking photos always make me feel calm.
I find a Waterstones and sit with a coffee looking at my App trying to work out the directions to the hotel, but the internet speed is as slow as my brain – something I wasn’t expecting in such a big city as Birmingham. The people I’d asked in the street didn’t know, but there’s a lull in the queue for the three, smiley faced staff at the counter, so I ask if they’ve any idea which way to turn out of the shop for the street I’m looking for. They don’t, but they hazard a guess and really do try and help.
I thought, the internet signal would be brilliant here, so my phone, which I rely on, but it is rubbish even outside and struggling to help. Eventually, after what seems like an age, my walking App says to turn left and head for St Martins church but it doesn’t look right compared to the printed map I have. I see a community policemen with a smiley face. He knows the hotel and says the app is taking me the wrong way.
He says someone else had asked him for the same directions recently and explains perfectly – I’m relaxed. He assures me it’s not that far – a 10-minute walk but in one direction…
I continue to walk, looking all around for the building on the picture when all of a sudden, in the distance, I see the big letters of the hotel lit up on the skyline. I’m happy as I follow the brightly lit sign in the sky.
The smiley faces in reception are comforting. I find my room in the dimly lit corridor and make a cuppa… ahhhhh, that’s better.
Then I think of the morning – how do I do this journey in reverse back to the station? So I decide to walk back into the city to make sure I know my way back in the morning to the station as I have to catch another train, the short 10-minute ride to the university. I make notes in my phone as I’m finding landmarks. Sirens startle me – I find my earplugs…
I find the ramp that the policemen had sent me down again – I then feel happy and take a walk up one side and down the other of the Christmas market, making sure I don’t detour down a side street, otherwise I’ll be lost again...
I love the lights and jollyness of all the traders and take more photos… But it’ll be dark soon, so I have to stop and make my way back. I can’t ‘see’ in the distance in the dark – everything closes in and becomes unfamiliar. I buy my sandwich and snacks for the evening as I don’t like leaving my room once it gets dark, so the hotel restaurant is out of bounds and I’m more relaxed if I stay in my room.
I’ve got a lovely view of the road below, so I can watch the chaos of the traffic from the calmness of my room. It’s 4pm, I have my supply of tea and milk in my suitcase, (there’s never enough in the room). I settle down with the telly – just the bedside light on as I can’t work out how to make the lights work. I leave one curtain open, otherwise when I wake up the many times in the night as I do, I won’t be able to see where I am or which direction to walk in this unfamiliar room… so all Is well in the world until the morning when it all starts again.
After the usual wake–sleep–wake–sleep night, I finally get up at 5am to give me enough time for my brain to engage to get ready for breakfast at 7. It is only then that I realise why I couldn’t work out the lights the night before – a shadow fell on the white light switches on a white wall… And now to work out how the shower…!
The Big Question
Why do I put myself through all this? Well, what’s the alternative? Not to go anywhere and sit at home deteriorating quickly? No, I don’t think so…
Many thanks to Wendy Mitchell was diagnosed with early onset Alzheimer’s on the 31st July 2014. She is 58, has two daughters and lives happily alone in Yorkshire. She started the www.whichmeamitoday.wordpress.com blog to "allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we still have feelings. I’m hoping to show the reality of trying to cope on a day-to-day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.”
Someone I met recently suggested I might find this new idea interesting. As technology ideas go, it's certainly intriguing and my regular advanced dementia conversation group might find it an additional engaging activity.
"The Active Cues’ Tovertafel is a game for the elderly with moderate to severe dementia, encouraging them to instinctively participate in order to stimulate both physical and social activity in them. Numerous games, consisting of interactive light animations which are projected on a table, stimulate their mind and inspire them to be active. Tovertafel was developed during the PhD research of Hester Le Riche in close collaboration with the elderly and therefore closely matches their needs and capabilities."
I have a good friend, 92 last birthday. To my dismay, the week before last, I got a call to tell me she had been in hospital for a couple of days, her oxygen levels were exceptionally low and she was undoubtedly very ill. I was really anxious for her and also sad that I hadn't known.
I visited her in the hospital that evening. It was a very pastel scene. She was in a six bay ward, sharing the space with five white-haired ladies, very of-their-time, in pale pink nighties and bed jackets. Two patients had dementia, one of whom was being attended to by a family member.
The other, very confused, asked me repeatedly if the bed she was coming and going from, was hers? Was it somewhere she should be? "How do I know it's mine?" she asked bleakly. Despite my reassurances, it was clear that she was marooned in an environment with few landmarks and no means of navigating her experience. At the far end of the bay, a lady in a chair next to her bed stared out dolefully and bored.
Then I spotted my friend, sitting on her bed, her hands and nose adorned with the inevitable cannulas and drips, but absolutely resplendent in a pair of leopard skin, satin pyjamas. Yes, leopard skin. And satin.
Now that's style – AND for a nonagenarian, who might not even make it through. I admired them enthusiastically, complimenting her on such an audacious and somehow defiant choice of hospital bed wear. All the more amazing, given that she would have had to pack her bag when she was alone and trying to cope with the endless and paralysing nosebleed that had precipitated her hospital stay.
She laughed, saying "Oh yes! a young doctor was saying something similar earlier and I said to him, 'this is NOTHING darling, – usually I wear a bit of bling as well!'"
PS She made it through and went home yesterday, full of praise for the hospital staff and her whole experience.